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A few years ago, I was negotiating a business acquisition. My client was the buyer, and he was trying to purchase the seller’s business. I e-mailed the seller’s lawyer a purchase agreement (contract) for him to review and change if he thought necessary.

He e-mailed me back that it looked good. He had only made a couple of minor changes; he just added two words to be exact. I thought, “Great, this will be easy; we must have a deal.”

When I opened the attachment with the revised purchase agreement, I saw he had not enabled the “track changes” function, which highlights the changes for me. Normally, lawyers do that for each other so we do not have to waste hours combing through a document, especially when the changes are really minor. This document was dozens of pages single spaced. So, it was quite challenging to find those two “minor” changes.

It turns out, it was just two words like he said, but they were anything but minor. As I do with every purchase agreement, I put in a term that basically says, “The Seller guarantees that he is telling the Buyer the truth.”

The two words the seller’s lawyer added were “does not.” So, the term now said, “The Seller does not guarantee that he is telling the Buyer the truth.” In other words, it was the exact opposite of what I had written and a huge red flag that the seller was not being honest. Needless to say (I hope), the deal fell apart.

That is an illustration of how a few words can totally change the meaning of a statement. Just a few small changes can make a document totally untrustworthy. The same thing happens in medical research, but, usually, it is a bit more subtle.

If a researcher wants, he can be very deceptive with a study. Oh sure, what is stated may all be technically true. That does not mean it is not deceptive, though. One simple and common method is to conflate different outcomes into one result.

In recent weeks, I have seen a distressing trend of this. On the one hand, I see the alternative and complimentary crowd sharing posts all over social media that say, “The LARGEST human ivermectin cancer study EVER done found 84.8% of patients declared their cancer had COMPLETELY DISAPPERED, SHRUNK, OR STOPPED PROGRESSING after 6 months.”ⁱ

That sounds great. Almost 85% of patients are now NEDⁱⁱ from Ivermectin. Except that is NOT what that post says. It says they are NED OR they had a partial response OR they had stable disease. Those are three very different types of responses.ⁱⁱⁱ I am not saying any of those are bad responses, but they are not the same.

Consider this; that post puts having no evidence of cancer in the same boat as having cancer that is neither getting better nor worse. Call me weird, but I view those two results VERY differently. I also view having some shrinkage as better than having no shrinkage but not as good as having no evidence of disease.

Yet, that post put all three into one line of text. Almost 85% of people had a response. The response almost everyone will fixate on is the best one, the complete response. It is easy to get your hopes up when you think that 85% of people had a complete response. In fact, many people who reply to these posts make clear they believe this study proves the Ivermectin is a cure.

To be honest, I have cited the study this post is based on as evidence that Ivermectin may have some efficacy in treating cancer. That is very different from saying it is a good treatment and certainly not the same thing as saying it is a cure.^iv

By conflating three very different outcomes, the post conceals the actual data. It makes the drug appear more effective than the evidence found in the trial.

This deception is not restricted to the alternative therapy crowd. In fact, this problem is worse with the standard therapy crowd.

In a recent post, I stated, “I do not trust the new cancer vaccine.”^v I was specifically referring to the “breakthrough” mRNA “vaccine” that caused Moderna’s stock price to spike. I was dramatically underwhelmed by the phase 3 data that was ostensibly the reason for the exuberance since no data was actually published.

In response, some people cited to the abstract of the phase 2 data.^vi I am decidedly unimpressed with the phase 2 abstract for a host of reasons, but I will discuss just one today, which is the way the abstract of the phase 2 is written.^vii

The abstract for the mRNA vaccine essentially did the same thing as the social media post on Ivermectin. It deceptively conflated very different results to make the drug seem better than it actually.^viii

In fact, I would rate the published abstract as significantly more misleading because it was not a social media post that conflated different outcomes but a published paper that is supposed to be scientific.^ix There is a big difference between a misleading social media post, which makes no pretense to being serious scholarly work and a misleading study abstract, which does make such a pretense, in my view (this is particularly true in this case since the actual paper is not readily available; only the abstract is widely available).

Specifically, the abstract found the vaccine reduced the risk of “recurrence or death.”^x Those are VERY different outcomes. I have a hard time believing anyone thinks that having your cancer come back is equivalent to dying from your cancer. Yet, the abstract conflated the two.

I hope it is obvious that the question you should ask is, “Is the benefit mostly that people did not die or just that their cancer came back a little later?” The abstract is not clear, but it looks like the benefit is mostly that people simply had a little more time before their cancer came back, not that they necessarily lived longer.

Despite the fact these two outcomes are not close to the same, you would be forgiven if you thought the study was showing a massive decrease in deaths. After all, that is what happens when you lump the two outcomes together. By conflating different outcomes, the authors changed the readers’ understanding of the various outcomes without actually lying about the data.

They did it again with the discussion of side effects in the abstract. A major issue for all treatments is side effects. This is particularly true for mRNA treatments since they have proven to be very dangerous.

The abstract discussed two groups of patients. One group of patients had the vaccine plus Keytruda. The other group just had Keytruda without the vaccine.

Normally, you would at least list how many serious side effects the experimental group had. This abstract did not. It listed there were some Grade 3 side effects. Grade 3 side effects are really bad but not life threatening.^xi This is the middle grade of side effects.

Grade 4 and 5 side effects are worse. Grade 4 is life threatening (meaning a patient could die) while Grade 5 is fatal.^xii The report gives the impression there were no Grade 4 or 5 side effects with the vaccine. It says, “No Grade 4 or Grade 5 events related to [the vaccine] were reported.”^xiii

Note the careful language. It does NOT say there were no Grade 4 or 5 adverse events in the arm using the vaccine. It says there were none “related to” the vaccine. This implies there were Grade 4 and/or 5 adverse events, but it does not say how many.

It gives no support for the claim those adverse events were not related to the vaccine. We are supposed to take them at their word these serious consequences were not related to the vaccine. That is not how science works. In science, you prove what you say.

This is particularly important since the authors then conflated the total number of Grades 3, 4, or 5 side effects. Call me crazy, but I think it is a big deal to know if a lot more people died than if they had bad vomiting.

Further, the authors said the Grades 3, 4, and 5 side effects were “generally similar between the arms.”^xiv Again, call me crazy, but I think it is a very different outcome if there are “generally similar” numbers of people who have bad nausea in one arm as die in the other arm. By conflating the Grades 3, 4, and 5 events, that may be exactly what happened. (This is in addition to the fact that the numbers were not “generally similar;” in fact, the reported rate of serious side effects was almost 40% higher in the vaccine arm than in the non vaccine arm.)^xv

All of this tells me there were very scary side effects observed in the group that got the vaccine. Yet, it would not be surprising if you got the impression there were none because of the way the abstract is written.

This abstract is a classic example of deceptive writing, whether intentional or not, in my view. For both the benefit and the risk, the abstract is written in such a way that the drug appears better than it probably is.

CONCLUSION

Pay close attention to what is actually said in a study. Many studies and papers are not meant to inform but to persuade. I am not saying that is what happened with either document here, but it is certainly suspicious. If the author knows how to write, the author can make a paper look like it is science when it is, in fact, marketing. The author does not need to lie; the author just needs to write the paper in a way to make you think the data is something other than what it is.

This means you the reader really need to pay careful attention to what they say. I know it is not fun. It can be terribly tedious, but it is important. If you want to know what something really says, you need to pay attention to the boring bits. Otherwise, you may be left with a false impression, either positive or negative.

There are many ways a crafty writer can do this. One way is to conflate two separate pieces of data into one dataset or separate out data that should be kept together. I do not know if either of these documents I reviewed are meant to be marketing or serious research, but the writing sure could give you a rosier view of the treatments discussed than they probably merit.

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i Unfortunately, I have trouble linking in X posts or otherwise embedding them. So, I have not posted a link. There are many, many posts like this, though.

ii https://concerningcancer.substack.com/p/farid-fata?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iii https://concerningcancer.substack.com/p/the-first-scan?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iv Candidly, this study is not the most rigorous or best designed study in the world. In many ways, it is quite weak. It provides evidence, but it is not overly robust evidence. Those other issues are not the topic of this post. So I will not address them further here.

v

Concerning Cancer's Substack

I do not trust the new cancer vaccine

I do not trust the latest “breakthrough” in cancer. Specifically, I am talking about the new cancer mRNA cancer “vaccine” from Moderna. I have said time and again, much to the dismay of many in the medical field, that, above all else, medicine is a business…

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11 days ago · 5 likes · 6 comments · Concerning Cancer

vi https://aacrjournals.org/cancerres/article/83/8_Supplement/CT001/726494/Abstract-CT001-A-personalized-cancer-vaccine-mRNA

vii Much like the Ivermectin study, this study is also decidedly lacking in rigor and is poorly designed. In other words, it is weak for a host of reasons, but I will not be addressing those other issues in this post.

viii To be clear, I am not saying the authors did that intentionally. I do not know if they did or not. Maybe this was intentional deception. Maybe it was sloppy writing. Regardless of the reason, it is deceptive.

ix In point of fact, the Ivermectin abstract broke down the percentage of people who were NED, had a partial response, had stable disease, and had progression individually so you could plainly read the actual data. https://ar.iiarjournals.org/content/46/6/3243

x https://aacrjournals.org/cancerres/article/83/8_Supplement/CT001/726494/Abstract-CT001-A-personalized-cancer-vaccine-mRNA

xi https://dctd.cancer.gov/research/ctep-trials/for-sites/adverse-events/ctcae-v5-5x7.pdf

xii Id.

xiii https://aacrjournals.org/cancerres/article/83/8_Supplement/CT001/726494/Abstract-CT001-A-personalized-cancer-vaccine-mRNA

xiv Id.

xv Id.

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The house was a mess. It was October 2015, and we were looking to move next month. So, the mess in the house was becoming an issue because we would have to pack all that up.

The thing was, we could not just throw it all in a box. You would not know it by the way it was haphazardly scattered, but a lot of this stuff was important. So, we had to figure out what to do with it.

I am normally a fairly tidy guy, but the house had been a disaster since my wife was diagnosed with cancer. Once she was diagnosed, we went into crisis mode and had never gotten out of it.

One of the major ways that manifested itself was in the house. I primarily worked from home. I had my own business and had an office, but, with Betsy sick, I rarely went to the office. I only went on the weeks she was off of chemo and then for the minimum time necessary. That meant I had work papers at home, and many of them were strewn about the house.

Most of my days, I sat in the living room with my laptop so I could be near Betsy and do anything she needed. With her first chemo regimen, she had legitimately needed a lot. Whether it be food, water, assistance going up or down stairs, cleaning up vomit or other messes, it was pretty regularly something on chemo weeks. Sometimes, I would put my papers down to jump to do whatever needed to be done but then would leave the papers where I had left them.

She needed a lot less now that she was off the particularly tough regimen, but I had never gotten around to putting the house in order. We had loads of medical-related papers for Betsy strewn about. My work stuff was everywhere. One thing that surprised me, though, was the mess in the kitchen.

Almost immediately after her diagnosis, our kitchen got overrun with medical … things. Our counter tops were covered with prescription drugs, nonprescription drugs, supplements, and other weird things, like pill cutters, pill crushers, gloves, and more. We were not even really doing much complimentary care, but we still had a massive amount of our counter tops devoted to holding those things. We had never sat down and planned where to put those things; so they just all ended up on the counter.

The number of issues Betsy had was just stunning to me. Fortunately, there was SOMETHING we could do for most of them.

There were a few that we could not do much about, though. One side effect in particular was really getting Betsy. Her anal fissure was back.

In the TV show, “The Office,” they made a joke about an anal fissure, but this was no laughing matter. Betsy’s anal fissure was excruciatingly painful every time she went to the bathroom. It also was not healing. It was getting worse.

Betsy had first developed the fissure when she was on FOLFOXIRI. We do not know why it happened definitively, but I have a strong suspicion I know what happened.

On FOLFOXIRI, Betsy swung wildly between constipation and diarrhea. When you get constipated, your stool gets hard and can damage the anus when it comes out. When you have diarrhea, you can get irritation on the anus. So, if you first tear your anus with a hard stool that you strain to expel and then prevent it from healing for a bit because you are constantly wiping up diarrhea, it seems to me the conditions for a fissure are in place.

I think that is what happened to Betsy. It would not have been catastrophic, though, if it were not for something else.

Besides chemo, which is itself irritating on the skin, Betsy was doing the targeted therapy Avastin aka Bevacizumab. Avastin affects blood flow. The idea is that it reduces blood flow to your tumors.

Betsy had discontinued Avastin when she was on FOLFOXIRI so she could have surgery. Her fissure had healed up nicely once she did.

When her cancer had come back, Betsy had not only restarted chemo, albeit the easier regimen of FOLFIRI, she had restarted Avastin. The fissure had similarly restarted. This led us to believe the fissure was at least partially related to the Avastin and that the altered blood flow meant she was having trouble healing the fissure.

Betsy had been going to a GI surgeon to try to treat the fissure without dropping the Avastin. After all, it was important to have a targeted therapy in addition to the chemo. We were hoping to find a solution that let her stay on Avastin while healing the fissure.

In the meantime, I had to make a dent on the disarray in the house. Doing that would make things less confusing when we moved.

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Medical Note – Constipation

Before Betsy was diagnosed with cancer, I would sometimes express some dismay that she and her nurse friends would tell poop jokes. I was not immersed in poop lore and viewed discussions of poop as vulgar. As nurses, they dealt with poop on a regular basis and had become inured to the disgust a lot of people feel for poop.

While I still do not love scatological humor, I have lost my squeamishness in discussing excrement. It is actually a very important topic for cancer patients. I have repeatedly stated that managing side effects is not secondary to treating cancer but a vital component that is massively underrated.ⁱ

The bowels in particular suffer when on chemo. Not everyone gets neuropathy or suffers hair loss, but one of the most common side effects of cancer treatments is gastrointestinal (GI) effects. Basically all chemotherapy affects the GI tract. Surgery and the recovery almost always brings on GI issues. Radiation commonly affects something in the GI tract. Immunotherapy also frequently causes GI distress.

There are a lot of GI problems you can have with cancer. One of those is constipation, and this article will focus on that.

A lot of people do not realize how badly constipation can affect you. They understand the immediate problems with nausea or diarrhea, but constipation is sometimes seen as less problematic because it does not have the immediate discomfort of nausea or diarrhea. An understanding of constipation is helpful.

Fundamentally, I trust we all know that constipation means you are not passing as much stool as you should. The big problem with constipation is that what is initially a minor irritant can snowball into a large problem.

When food goes through your mouth and out the other end, it goes through a whole system. One of the things that system does is dry out your excrement. When you get constipated, your stool stays in that drying system longer than it should.

This means it gets drier than it should. Drier also means it gets harder. Drier and harder means it makes it harder to excrete that waste. In other words, the longer you are constipated, the worse it gets.

When you need to pass something that is hard, you are at greater risk of causing damage to your anus or rectum. Yes, I realize there are jokes to be made about that, but think about what that means. If you damage your anus or rectum, every time you poop, it will hurt. If you cut it, like Betsy did, you are also at a pretty significant risk of infection; after all, you have your poop going over a cut, which means fecal matter can get in. You are also at risk of an abscess.

If an anal fissure were the only concern, constipation would not be such a big concern because they are comparatively rare. Here are some other, more common, problems:

1. Constipation significantly impairs your ability to digest food. That leads to all kinds of problems.

2. Constipation can harm your immune system.

3. Constipation can lead to hemorrhoids.

4. Constipation can be quite painful.

5. Constipation can lead to a blockage in your colon.

6. Constipation can cause vomiting.

7. Constipation can damage your colon, including causing a perforation.

For more on some of the effects of constipation, read this. https://bellalindemann.com/blog/side-effects-of-constipation

These are just some of the effects of constipation. Suffice it to say that constipation is much worse news than most people realize if they let it go too far.

When you get significantly constipated, the only way to treat it is to effectively induce diarrhea. When the old stool in the colon gets extremely dry and hard, new stool has trouble getting by it. This means the new stuff just kind of just gets added to the existing stool and makes a bigger mass that makes it even harder for new stool to pass. Ultimately, you can end up with a lot of dry, hard stool that blocks anymore stool from passing through. When that happens, your only real option is to open up your colon is to really soak that dry, hard stool so that it can become soft enough to pass.

That means when it comes out (a) your stool is very loose and (b) you have a lot of it to get out. In other words, you get diarrhea. So, I think it very important to jump on constipation to prevent it from becoming a serious problem. If it becomes really bad, you are looking at surgery, sometimes even emergency surgery; so you want to avoid that.

Constipation is commonly treated with laxatives. Most commonly, you people divide laxatives into one of five categories:

1. Bulking – these are basically fiber supplements that add bulk and softness to the stool
2. Stool softener – these make your stool softer to make it easier for water to get into the stool
3. Osmotic – these draw water into your colon
4. Lubricant – these make the stool slippery
5. Stimulant – these cause your colon to contract and thus push stool through the colon

Those are basically in my order of preference. Here specifically are things I like for constipation:

1. Water. This is number one for a reason. Water is one of the biggest things for most people’s constipation. In fact, a lot of the most common laxatives rely on moving water around to work. If you do not have enough water, there is nothing to move. Remember, the problem with constipation usually is that the stool gets too dry and then stuck. Keeping it hydrated is thus essential.

2. Exercise. I know, this sounds stupid, but exercise is a natural stimulant laxative. When you move, your abdomen pretty much always has to contract, which means it is pushing your stool through. Unlike other stimulants, though, this one does not have dependency concerns.

Those two options are natural and, unless you massively overdo them, healthy. So, start there if at all possible.

3. Food. This is controversial in my book because cancer patients have all kinds of problems with food. It is all well and good to say, “Eat better,” but that is simply not an option frequently. To the extent you can, eat a healthy diet full of fiber.

4. Metamucil, Benefiber, or flax seed. These are bulking laxatives. They are lower risk and more natural than everything else further down my list. So, I really like these for every day use to keep things moving.

A word of caution. Do not take too much, and some people (e.g. those with colon or rectal tumors) should not take them at all. A time to definitely avoid these is when you are already constipated. You do not want to add bulk if you are already constipated because that just increases the risk of a blockage.

5. Colace. Doing what you can to keep your stool soft is very important. Honestly, I do not love Colace. It is fine but no better in my book.

6. Osmotic laxative, preferably magnesium, such as Milk of Magnesia, but possibly Miralax. My hierarchy of osmotics may be controversial to those who know constipation. I prefer magnesium when you do not need large doses of osmotics.

Magnesium is an osmotic, and osmotics are, in many ways, the really premiere laxatives in my opinion. Drawing water into the colon softens the stool very effectively. It also kind of has a stimulating effect as all that water helps move things along, but osmotics are not actually normally considered stimulants with the attendant risks of a stimulant.

As I said, if you just need one dose, I generally prefer magnesium, but most GI docs prefer a different osmotic, Miralax. They will tell you there are no concerns with Miralax. That is not true.

In fact, there have been over 34,000 negative side effects documented in FDA records in the roughly quarter century it has been on the market.ⁱⁱ I think that is a lot of side effects for something that supposedly has no possible side effects.

Even worse, the FDA commissioned a study to prove Miralax has no side effects, particularly on mood and behavior. The study was performed, and then the results were hidden.ⁱⁱⁱ The doctor who did the study has publicly said Miralax is safe but has refused to release the data proving the contention. That is extremely suspicious.

I do not mean to be a fear monger. Betsy took Miralax nearly every day and had no side effects I could see with one exception. Candidly, I have a lot more knowledge of constipation than I am discussing here, and I always maintain a significant stash of Miralax in my house along with Milk of Magnesia. To be honest, I have never noticed any side effects in anyone who has taken Miralax with the exception noted below.

There is a very positive aspect to Miralax you cannot say really about most other osmotics. You can take pretty much as much as you want. This may sound silly, but it is actually a big deal.

When/if you get badly constipated, osmotic laxatives like magnesium or Miralax are usually the primary treatment. For a lot of reasons, you are limited in how much magnesium you can take. One major reason is that magnesium is an electrolyte, and you can absolutely throw off your electrolyte balance if you take too much magnesium. That concern does not exist with Miralax.

I would not suggest anyone take five doses of magnesium at one time, but you can do that easily and, from what I can tell, safely, with Miralax. If the constipation gets bad, you may need that much or more, potentially a great deal more; so that is something very important to know.

If you get badly constipated, you may take a really significant amount of osmotic laxatives. In fact, the general protocol in the hospital if you get hospitalized for it (yes, people get hospitalized for constipation) is to pump you full of Miralax or something else with the same active ingredient. By “pump you full,” I mean you will get dozens if not more doses of the stuff. It is terribly unpleasant, but it usually works.

So, osmotics should be high on your list of laxatives.

A further word of caution about Miralax. I have already warned you about overdosing magnesium, but there is also a concern about Miralax. I believe it may become habit forming. Most doctors disagree with me, but a few GI practitioners agree with me.

The literature on Miralax is lacking in my opinion, but I saw that Betsy became addicted to it. She was not some junky snorting in the bathroom, but we found after prolonged use of it that she could not have a bowel movement without it, even when she was not doing anything that should have otherwise affected her bowels. It was not the worst addiction, obviously, but it was something we noticed.

7. Lactulose. This is a prescription lubricant laxative. It works well and is probably safer than some of the over the counter lubrciant options (some may disagree, but that is my opinion). Candidly, I do not put too much stock in lubricants, but they can help some.

8. Smooth Move Tea or another stimulant. There are plenty of stimulant laxatives, but the most commonly used is senna. You can get it in prescription form, but I like something else better. It is called Smooth Move Tea. That is a tea you can get in grocery stores, and it has senna in it.^iv

The nurses at my primary oncologist’s clinic first told us about it, and I bought some for Betsy. She pretty quickly realized that this tea was far superior to the prescription stuff. It was gentler on her yet usually more effective. So, that was a win-win, and that is why I like it.

Sometimes, patients need a stimulant. Things happen that mean their bowels become really sluggish (not a technical term). In other words, your bowels may need a little help getting going. This is where stimulants come in.

To give you an example, surgeries and opiates frequently do a real number on your colon. Following Betsy’s liver resection, she had a terrible time trying to poop. For a week, nothing happened. She took multiple doses of Miralax and senna daily, but she was not close to having a movement. The senna pills were causing her pain, but they had no attendant. So I brought in some Smooth Move tea after a week, and she had her first bowel movement in a week within a few hours, and it came without any discomfort. It is stuff like that why I swear by Smooth Move.

Caution is definitely warranted when it comes to stimulant laxatives. Previously, I raised my concerns that Miralax may ultimately because habit forming. Many people do not share my concerns.

Everyone shares my concerns that stimulants are habit forming if used too much. That is not controversial. So, you want to be careful to not become reliant on your stimulant unless you absolutely need to (yes, I am saying some people simply must take them for an extended period of time and will become dependent on them. So be it. Those people usually have bigger fish to fry and NEED to stay regular with their bowel movements). If possible, you want to avoid becoming reliant on stimulant laxatives.

The other big concern with stimulants is that they do not make your stool easier to pass; they try to force your body to do it. This means that if your stool is hard, you are at greater risk of injury because the stool is still hard but is being pushed through. So, I really think it best to do something to soften your stool if you need a stimulant.

CONCLUSION

I know constipation is not a topic most people want to discuss. It is an important topic, though, and one that affects a lot of cancer patients. Knowing how to handle it is an important bit of knowledge.

BETSY IN HER OWN WORDS

Tension

It is 1241 am and I am wide awake. I have some aches that are keeping me up and I am being too stubborn to take medicine for them, so I thought I would distract myself by writing.

I have been thinking a lot about the boldness of my last post... Praying with confidence that God will heal me. I thank you all for your prayers. They are making me feel a little guilty, because, honestly I doubt. I look at the odds and say how can I possible overcome? Am I crazy to pray such an improbable thing and to ask others to do the same? Yet I look at the God of the bible. Who gave Sarah a baby in her 90’s, who rescued Shadrack, Meshach, and Abednego from the fiery furnace, who healed a man born blind... So I hope.

That, I think, is tension (thus the title of my post). To look at the odds against and yet have such a Wonderful God who can do such great things. My old pastor, Pastor XXX down in XXXX, used to say we live in the already and the not yet. We, as Christians, are already saved. The act that reconciles us to God (Jesus’ death for my sin) has already happened. Yet we still live in a world that is and has been torn apart by sin. Christ has not yet come again. We are not yet partying in God’s presence. We are not yet in heaven. Thus the tension. Two seemingly opposites have come together: the Already and the Not Yet.

Pastor XXX, sadly lost his wife this past February to cancer. I remember one sermon he preached as they were trying to openly deal with the news his wife was dying. He talked about how to live with a terminal diagnoses. My interpretation recollects he said that it wasn’t much different then how we should live every day. Being terminal, just means you can’t fool yourself with death in this world waiting until you get old. (I was also talking with a good friend of mine this evening about this too). He preached of this tension. None of us know how many tomorrows we will have. So we should live in the tension that it could be tomorrow or it could be decades from now. I found this a wise thought, and a challenge. How to live each day like it may be our last and yet avoid being foolish and regretting today tomorrow. When I was really sick, on the really hard chemo last winter I had a friend send me a note that reminded me God gives us enough for today. There were days I didn’t know how I would get through tomorrow, but then I would think God gives us enough for today and if tomorrow comes, he will give enough for that day as well.

I find myself feeling a little bold now. Are you ready if there was no tomorrow? There is another biblical tension I’ve found and that is works and grace (Though apparently the 19th century Spurgeon says they go hand in hand). We are not saved by our works, yet our good works come from God and if we have none are we right with God? I often judge myself by using the fruits of the Spirit (love, joy, peace, patience, kindness, goodness, gentleness, faithfulness, and self-control) and how well I am displaying any. They are not from myself, but they are from God. What is the opposite? Sin. I think I am going to describe my own definition of sin as anything that keep you from God. I once heard that in the original language (Greek) of the New Testament sin means going away from God, and repentance means stopping, turning (like a 180 degree turn), and moving back towards God. Can we turn ourselves or does God do the turning? (Another tension of our free-will versus God’s sovereignty). We used to say when I worked at camp that there wasn’t anything we could do that would make God love you more or less. God’s love is like that of a Mother’s. Yet, we know there are things we do that make our parents pleased with us and other things that make them displeased. God is also like that. In light of all this,
I am being an Evangelist this morning and telling you God loves you, but if you haven’t, repented of your sins and run to God, (who knows you and loves you like nothing or no one else will) it is likely that is Jesus were to come back tomorrow you wouldn’t get to join in the party and that would be a sadness that can’t be undone.

Anyways, how come I keep on sinning? Well God’s mercies are new everyday and everyday I do something that I have to repent of. Today it is doubt. Doubt that God can heal me. Doubt that my desires (I have days where I get sad about not being a mother or growing old with my husband) aren’t going to happen. When I run to Jesus he gives me healing in eternal live, he asks me to trust him to make my desires come true or shows me that my desires are not what’s best and shows me when my desires are for him, they can be fulfilled. ( I often find myself thinking of Seek ye First passage “But seek first his kingdom and his righteousness, and all these things will be given to you as well” Matthew 6:33 I tell myself if I seek God, then my desires will change into what God wants or God will fulfill my desires).

Thank-you for your love and support. Getting mail, reading your posts, hearing from you makes my day. Prayers are powerful. In the book of James it says (paraphrased James 5:16b) “The prayers of a righteous person are powerful, they make things happen”. I welcome boldness on my behalf. (perhaps it will rub off on me).

Prayer specifics

Praise- This last round of chemo went fairly well. (ie I haven’t felt this good on a chemo Saturday yet). I have felt like I can participate in life (which involves grocery shopping, celebrating birthdays, chatting with friends, cleaning the house, etc).
Requests- For the sore on my bottom to heal. For the cancer to go away and to never come back.

Much love,
Betsy

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i See e.g. https://concerningcancer.substack.com/p/what-does-that-guy-do?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web, specifically the discussion on palliative medicine. See also https://concerningcancer.substack.com/p/betsy-gets-hit-by-a-train?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ii https://sharylattkisson.com/2024/02/study-popular-laxative-miralax-side-effect-reports-include-brain-disfunction-in-children/

iii Id.

iv I have no affliation with Smooth Move tea, but I almost feel like a salesman for it because I tout it so frequently.

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I do not trust the latest “breakthrough” in cancer. Specifically, I am talking about the new cancer mRNA cancer “vaccine” from Moderna. I have said time and again, much to the dismay of many in the medical field, that, above all else, medicine is a business.ⁱ This new treatment shows exactly why I say that.

On August 19, 2026, Moderna’s share price jumped more than 150% in a single day. The headlines were screaming, “Moderna, Merck breakthrough could usher in wave of cancer vaccines.”ⁱⁱ Doctors gushed that it was a “breakthrough.”ⁱⁱⁱ Moderna had just made “’a monumental leap forward’ validating mRNA technology as a cancer treatment” according to Dr. Julie Gralow^iv of the American Society of Clinical Oncology (ASCO).^v Doctors left, right, and everywhere have been cheering in triumph for this scientific master stroke.

If you have not heard, I will tell what had Moderna done that was so “monumental.” It had issued a press release.^vi That is it.

In fact, this was the second press release from Moderna about mRNA “vaccines” in recent weeks. Just a few weeks earlier, Moderna had issued a press release regarding the FDA approval of its mRNA flu vaccine, which had also resulted in a spike in its share price, albeit a much more modest one.^vii

You might think the press release on the cancer vaccine must have shown really great data proving this was a safe and effective treatment. You would be wrong.^viii There was and is no data published. The press release says there will be data published in the future; that’s it for substance.

Basically every medical doctor says they do “evidence based” medicine and rely on the “data” in forming their medical opinions. Yet, here they are praising this treatment with no data. All they have is marketing.

This is particularly bad because mRNA “vaccines” have proven to be exceptionally dangerous yet remarkably profitable. Moderna in particular has been shown to be cavalier with patient safety and deceptive with its data.

In fact, the recently approved flu vaccine is decidedly underwhelming at best. Moderna and the FDA claims its mRNA flu vaccine is a particularly effective flu vaccine, but the data does not support that. There has been no placebo controlled trial^ix nor was the mRNA treatment compared against the best available standard of care.^x Even in the study that was done against a substandard treatment, there was very little documented benefit to the mRNA vaccine.^xi In other words, Moderna had to get creative with the methods of the study to show even a very modest benefit.^xii

What is more, the trial showed the mRNA vaccine was unsafe. It had dramatically more side effects than the standard vaccines (much less what a placebo would show) and lacked sufficient power to show serious side effects, although the little evidence it had showed there was a legitimate risk of serious side effects.^xiii

In other words, the Moderna mRNA flu vaccine has a “comically bad risk-benefit ratio.”^xiv Of course, you would not know any of this if you just looked at the press release Moderna released regarding its flu shot.

In my mind, this is a huge strike against Moderna’s mRNA treatments and the approval process the FDA uses when it comes to them. It is not the only strike.

We all remember Covid. Moderna premiered its mRNA technology then in what it wanted to call a “vaccine.” The treatment promised to make huge money, but there was a problem. It was not a vaccine. I do not mean that as an argument. I mean that as a technical term. It did not fit the definition of the word “vaccine.”

Prior to the introduction of Moderna’s mRNA “vaccine,” a treatment could only be considered a “vaccine” if it conferred “immunity to a specific disease.”^xv Modernas’ vaccine did no such thing. So, the CDC, which was working hand in glove with Moderna, changed the definition of the word “vaccine” to mean something that “is used to stimulate the body’s immune response.”^xvi

The change is subtle, but the impact is huge. A treatment can be called a vaccine now even if it does not confer immunity in any way.

We were sold that Moderna’s vaccine was safe and effective.^xvii Of course, we know that its vaccine is, in fact, wildly unsafe.^xviii

The safety issue is one to pause on because it is very relevant to the cancer treatment. At the time the Covid vaccines were introduced, gene therapies like Moderna’s mRNA vaccine were required to provide 15 years of safety data if they acted systemically because side effects can show up years after administration of the treatment.^xix Moderna and the FDA claimed they did not act systemically; so the requirement for the safety data was waived. That was not true; huge numbers of patients reported systemic side effects.^xx In other words, the mRNA shots are known to have very significant risks, but they have not been studied.

As well know from the Fauci diaries, many very serious side effects were known but hushed up. From the beginning, investigators knew there was a risk of miscarriage from the shots, but they told pregnant women there was no such risk.^xxi At least 10 children were killed by the vaccines according to an FDA memo, and “[t]hat number is certainly an underestimate,”^xxii but such risks were and still are downplayed. The acting head of the FDA reported that “many” people, including healthcare professionals she personally knew, had side effects from the shots and fretted “there is no effort to study this” and doubted “the industry would support, for obvious reasons.”^xxiii In other words, lots of side effects but little disclosure to the public when it came to Moderna’s mRNA covid vaccine.

What is more, the claims of efficacy were grossly overstated. In fact, despite the approvals, the vaccines actually suffered “vaccine failure,” which is defined as the disease occurring in a person who has been vaccinated, which is why the word “vaccine” had to be redefined and why there are an absurd number of “boosters” for the the vaccine.^xxiv Moderna, though, claimed 95% efficacy, which was a ridiculous claim based on shockingly weak evidence.^xxv

You may reasonably ask why I am going through this. After all, you have cancer, not the flu or Covid. I am going through this history because I think this is a matter of fool me once, shame on you, fool me twice, shame on me. Fundamentally, Moderna has a history of wildly overstating the efficacy of its treatments while concealing very troubling side effects.

It did it with the flu, and it did it with Covid. In both cases, the efficacy was much lower than represented, and the safety was much worse than represented.

Now, with the cancer vaccine, Moderna and the medical establishment are using the same playbook they have tried twice. There is huge hype but basically no evidence to support this exuberance and tremendous reason to be cautious. There is no short term safety data. There is no long term safety data and none can exist. It is sorely needed, though.

Every single doctor, health professional, or anyone else hailing Moderna’s “breakthrough” is a danger to you. That is not someone following “the science.” That is someone marketing a drug to you.

I did not plan to write about this, but everywhere I looked, I was inundated with marketing hype for the new “breakthrough.” This marketing hype is extremely dangerous, in large part because it is being amplified by many doctors and hospitals. It is no accident this is being amplified.

Moderna has staked its company on mRNA. If you do not understand its stock price’s movement, it may be difficult to understand what is going on. In 2021, it reached its all time high of just under $500 per share. That was all based on its Covid vaccines.

By 2025, that cash cow had dried up, and Moderna’s stock was down to barely $22 per share, which is over a 95% decline in its stock price. That decline in stock price was mirrored in its earnings. It was losing money hand over fist. According to its most recent earnings report, it has an income of NEGATIVE $3.15 billion dollars. In fact, in its history, it has only had two years in which it made money—2021 and 2022.

Put bluntly, Moderna needed a win. When you need to boost sales, you put your marketing team on it. If you can get a marketing piece to go viral, then you are back in business. That’s what Moderna did, and its stock price has now rocketed to around $140 per share. Its marketing got it the win it needed.

Given the fact no data was actually published, the company’s history, and the history of mRNA vaccines more broadly, I think extreme caution is warranted. Here are a few things to look for:

1. What is the long term safety of the vaccine? There is no way to actually get this. There has been insufficient time to get that information. This means that anyone taking this drug is necessarily taking a huge gamble.

2. What is the short term safety of the vaccine? This kind of information has consistently been whitewashed when it comes to mRNA vaccines. So, if you look for it, you need to think VERY carefully about what it does and does not say. However, what is not said is more important than what is said.

3. What is the absolute benefit versus the relative benefit? I have not discussed absolute versus relative before, but this is a monumental difference. Typically, in marketing drugs, the relative risk or benefit is played up while the absolute is played down. The absolute is typically the more important one. Playing up the relative benefit (aka relative risk reduction) for the mRNA flu vaccine is how the fact there was vanishingly little absolute benefit was concealed.^xxvi

4. How robust was the study? Some specific questions to ask: (1) How many people? (2) How long? That is not all to look for, but those are some things.

5. Is what the study measured important to you? In the press release, Moderna talked about “recurrence-free survival.” That is not a bad thing to have. It is not the same thing as saying a person actually lived longer, though.

6. How many people did not complete the study? One way to skew a study is to lose a lot of patients who have data you do not want to report.

Those are just a few questions to ponder. What you should not do, though, is rely on anyone who is hyping this treatment. Any statements right now that this treatment is good is necessarily made without reference to the facts because the facts have not been published.

Maybe this new treatment will turn out to be truly paradigm shifting. Maybe it will be remarkably safe. Maybe it will have far broader applications than just melanoma. Yet, maybe not.

The rule in medicine is that you never assume a drug is safe or effective until it is proven to be both safe and effective.^xxvii This drug is not even close to proven. All we have right now are the representations of a company with a checkered past. I intend to proceed cautiously.

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i https://concerningcancer.substack.com/p/betsy-becomes-a-customer?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ii https://www.cnn.com/2026/08/21/health/mrna-cancer-vaccines-wave

iii https://www.wpr.org/news/wisconsin-doctor-responds-breakthrough-trial-new-cancer-vaccine

iv Julie Gralow has an … interesting knowledge base of mRNA vaccines.

Unacceptable Jessica

Senate Hearing Examines Links Between COVID-19 Shots and Cancer

Thank you to The Highwire for the recording of the Hearing. Click on the photo of Senator Ron Johnson to hear the Hearing. And thank to Senator Johnson for being a stalwart in the fight against medical tyranny…

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3 months ago · 308 likes · 47 comments · Jessica Rose

v https://www.usnews.com/news/top-news/articles/2026-08-19/analysis-moderna-merck-breakthrough-could-usher-in-wave-of-cancer-vaccines

vi https://justthenews.com/politics-policy/health/science-press-release-moderna-cashes-mrna-cancer-vaccine-while-hiding-trial

vii Id.

viii https://news.modernatx.com/merck-and-moderna-announce-phase-3-interpath-001-trial-of-intismeran-plus-keytruda-met-endpoints-of-rfs-and-dmfs-in-melanoma

ix This is important because influenza “vaccination” may actually make you MORE likely to get the flu than having nothing. https://www.medrxiv.org/content/10.1101/2025.01.30.25321421v3?fbclid=IwY2xjawT5Pp5wZG9mAWV4dG4DYWVtAjExAGJyaWQRMW9YRTY3enJJSkVveUpLanBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEebZ_ZAY5kS4uamk-26SrhTnPbI5iyG2zcjmcr4woheMBB7sR7devaiEEsIPQ_aem_LWo01XCn2UAP_7kU0atCRw

x https://www.peoplespharmacy.com/articles/will-flu-be-mild-this-winter-fda-approves-first-mrna-flu-vaccine

xiId. (showing the absolute risk reduction was .8%.

xii See https://concerningcancer.substack.com/p/why-the-methods-section-is-the-most?r=xwnqz&utm_campaign=post&utm_medium=web regarding how the methods section can be used to skew the results of a trial.

xiii https://www.peoplespharmacy.com/articles/will-flu-be-mild-this-winter-fda-approves-first-mrna-flu-vaccine

xiv https://justthenews.com/politics-policy/health/return-rubber-stamp-first-mrna-flu-vaccine-has-far-higher-injury-rate

xv https://www.sciencetimes.com/articles/45662/20230828/changes-cdc-definition-vaccine-will-affect-public-health.htm

xvi Id.

xvii https://feeds.issuerdirect.com/news-release.html?newsid=5653981722749209&symbol=MRNA

xviii https://uncoverdc.com/2022/02/23/german-insurer-warns-more-vaccine-side-effects-than-previously-known/?fbclid=IwY2xjawT5PyhwZG9mAWV4dG4DYWVtAjExAHNydGMGYXBwX2lkEDIyMjAzOTE3ODgyMDA4OTIAAR5ykSWiTcLDiOa6MkqBJuCeZgXyV6mubWzl7i5VSkpS2VPx9t-bD1zykyc_bg_aem_IgFJftLfMuMEYIAO830E_w and https://www.americanthinker.com/blog/2021/03/how_safe_are_the_covid_vaccines.html?fbclid=IwY2xjawT5P7BwZG9mAWV4dG4DYWVtAjExAHNydGMGYXBwX2lkEDIyMjAzOTE3ODgyMDA4OTIAAR5BkJz_44Nq7avjLUe5fC4eyqLhUlaYB9PWGCNP37UbsrcbKCLErQPOyVk_yQ_aem_OXgexKlBy9lXClxhFj9h2g

xix https://www.fda.gov/media/113768/download?fbclid=IwY2xjawT5QGpwZG9mAWV4dG4DYWVtAjEwAGJyaWQRMW9YRTY3enJJSkVveUpLanBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeuwyf9_TJCCR7s16VFGmJoFwotURW0acv3DSR_BwU5RwE3Vc-IRedZi2BI-Q_aem_btRYJHfT1iZIzR_XOMRX5w

xx https://www.cdc.gov/mmwr/volumes/70/wr/mm7039e4.htm?s_cid=mm7039e4_w&fbclid=IwY2xjawT5QUxwZG9mAWV4dG4DYWVtAjEwAGJyaWQRMW9YRTY3enJJSkVveUpLanBzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEeuwyf9_TJCCR7s16VFGmJoFwotURW0acv3DSR_BwU5RwE3Vc-IRedZi2BI-Q_aem_btRYJHfT1iZIzR_XOMRX5w

xxi https://nypost.com/2026/08/10/us-news/fauci-warned-of-miscarriage-risk-linked-to-covid-vaccine-while-publicly-claiming-no-issues-newly-released-texts-show/

xxii https://www.documentcloud.org/documents/26381196-prasad-email/

xxiii https://www.ronjohnson.senate.gov/wp-content/uploads/2026/08/May-27-2021-Janet-Woodcock-to-Fauci-and-Collins-re-vaccine-adverse-events.pdf

xxiv https://www.vaccines.me/articles/uifpi-what-is-vaccine-failure.cfm

xxv https://www.bmj.com/content/371/bmj.m4471/rr-3

xxvi Here is a short example of relative versus absolute. Assume you live in a town of 1,000 people. One year, there are 2 homicides. That means .2 percent of the population was killed. The next year, there is 1 homicide. That means .1 percent of the population died. The absolute risk reduction was .1%. The relative risk reduction was 50%.

xxvii https://www.fda.gov/drugs/enforcement-activities-fda/unapproved-drugs

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In the 10 months or so since her diagnosis, Betsy had undergone some physical changes. She lost her hair with her first chemo regimen, but now her hair has been growing back. It was obviously much shorter than it was when she was diagnosed, but it started out being a bit darker, too. Her skin also got darker. Both seemed to lighten as time went by, but the change in color was something we noticed.

She was not the only one to change, though. I had gotten FAAAAT. Pretty quickly after her diagnosis, I started putting weight on. A lot of weight. I had not known this about myself, but I am apparently a stress eater.

Betsy’s cancer diagnosis was the most stressful thing I had ever experienced. I thought I knew what stress meant. I have worked in places that by most people’s lights would be high stress environments, things like working on murder and rape cases. I thought those jobs were stressful, but they had never driven me to uncontrolled eating or to stop working out.

Betsy’s cancer and initial chemotherapy regimen was on a totally different level. I pretty quickly started eating junk food like never before. Pizza, chips, dessert all went in my mouth.

It was not long before I put on 40-50 pounds. My fat pants no longer fit me. So, on one of her good days, Betsy went out and bought me new pants. These were seriously fat pants. Having her bring in pants that were four inches bigger than my old fat pants was not what I wanted to see.

The reason why I was getting so fat was that I was almost paralyzed by fear when Betsy was on her first chemo regimen. For the five days following her infusion, I went nowhere. I did not go to the gym. I refused all work appointments. The only exceptions were to go to stores to get Betsy things she needed or desperately wanted.

While at home, I ate. I stopped meal planning a week in advance, making sure each meal was actually healthy, which I had done pretty much my whole adult life, and started improvising. Improvising is not a great idea.

Obviously, this was not good for me. It also made me a worse caregiver.

It is a cruel irony that something as simple as getting up out of a chair took more energy as my weight went up just as my strength was going down. Sure, I was still easily able to do it, but it took a bit more out of me.

The extra weight affected my sleep. I was already having trouble sleeping because I was concerned. Add to that sleep apnea as I got fatter, and my sleep became even worse.

I became metabolically unhealthy, which meant my regular energy levels went down. I was not getting enough vitamins and minerals, which drove my energy down even further.

I still did the tasks needed to be done, but I was becoming less and less efficient. I was also becoming grouchy. I do not think I was snapping at Betsy or anything like that, but my mood had been dipping. So, at the least, I was worse company than I should have been.

Looking back, I was making a mistake. I know I am not alone. Lots of caregivers neglect their own health.

I rationalized it to myself that I was making a sacrifice for Betsy. I somehow got it in my head that if I took care of myself that I was doing Betsy a disservice. What would have been better for Betsy, though, was if I was in shape. That would have made me better able to care for her when she really needed it, would have made me make her more nutritious food, and would have made me better company since my mood would have been better.

On a completely unrelated note, we were narrowing down our house search. We were pretty sure we had found the house we wanted to buy. We had seen dozens of houses and never seemed to agree.

We had very different styles. I really wanted a two story house. I never figured out exactly what Betsy wanted in a house, probably because she did not know, either. I wanted some character in the house; she wanted a house that was not designed for a septuagenarian. It turns out that even as a 30 something, I had old man tastes.

We had a few things we knew we wanted, though. We both wanted a house house, not a townhouse or condo. We wanted a yard. We wanted to be close to family

The other big thing we knew we wanted was a low maintenance house. As Jeremy Clarkson would say, I am not a practical man. If you want to why Anton Bruckner is a terribly underappreciated composer, I am your guy. If you want a working garbage disposal, hide your tools from me.

I would not say Betsy was terribly handy, but she certainly was better than me. I think she always had aspirations that I would become a capable handyman. Wisely, she never mentioned any such thing to me. If she had ever said such a thing to me, my response would have been something, “You keep dreaming those big dreams.”

In short, if we were to buy a house that needs work, it was not going to get done. Neither Betsy nor I were capable of doing it. She was too sick, and I was too incompetent.

So, finding a house we agreed on and could handle had been a tall order. It was looking like we might have gotten our order filled, though.

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MEDICAL NOTE – Methods Matter

In my last article on medical research, I tried to impress upon you how the Methods section of whatever study you are looking at is really the most important section.ⁱ At the risk of beating a dead horse, I am going to expand upon that.

The methods section is rarely the most scintillating part of a study. It can feel like drudgery. When I was in school, I thought showing my work in math class was boring. I got the right answer; let’s move one. The right answer was the right answer regardless of how I got there.

The methods section is the researchers showing their work. Unlike in math class, though, the right answer does not exist independently of the work. In medical research, the methods in many ways dictate the answer. In other words, you cannot understand the results if you do not understand the methods.

It is kind of like the movie “The Hitchhiker’s Guide to the Galaxy.” In the movie, a giant computer gives “the Answer to the Ultimate Question of Life, the Universe, and Everything.” The answer is 42.

Obviously, that is a decidedly perplexing answer; so the next question is what was the question. The computer that gave the answer is unable to tell you, though, what the question is.

That is basically what happens if you do not pay attention to the methods section. The answer is basically random nonsense.

Unfortunately, it is absolutely standard that people, including your doctor, do NOT pay attention to the methods. They take an answer to one question and say it applies to ALL questions. It does not. This has huge ramifications.

First, perfectly valid treatments are “debunked” by ignoring the methods. Second, treatments are deemed to be “proven”ⁱⁱ when they are no such thing. Here are a few of many ways the methods used change the answer.

Dosing Matters

One of the major things to look for in the methods section is the dose that was used. Everything is dose dependent. Yet, sometimes the dose used in the study is ridiculous.

Too little dose is never going to work. That should make sense. In cancer, you usually get BIG doses. It should stand to reason that giving someone too small a dose will not help. Conversely, too much may not work or, more commonly, may cause side effects.

Here is a hypothetical. Let’s say you are seeing a lot of people die from dehydration and do not know why. Someone suggests that you try giving people water to see if they still die. You decide to do a human study.

In your study, you decide to give the patients 1 teaspoon of water a day and no more. We all know those people are going to die within a few days. That is simply too little water for a human to survive.

Your results will say that water showed no benefit. Of course, that is utter nonsense. You gave the patients too little water. The problem was not the treatment; the problem was the dose. You would not know that, though, unless you read the methods section.

On the other hand, what if you still thought giving patients water would help treat dehydration. So, you make people drink 10 gallons of water a day. In a few days, your patients start dropping dead from water intoxication.ⁱⁱⁱ

Now, your results will say that water is fatal. We all know, of course, that water is not a fatal treatment. The methods simply administered too much water.

Obviously, these doses are ridiculous, but they are only ridiculous because we already know how much water is needed per person per day. If we did not have this knowledge, we would have to guess at the dosages, and these kinds of ridiculous dosages happen far more than you might think.

This is why Phase 1 clinical trials are often “dose finding.” This means they run the trial with many different dosages. They are typically start VERY low and go quite high if not ridiculously high. What they are trying to do is initially find the minimum dose where there is some kind of clinical response; then, they go all the way up until the drug is too toxic for people to handle. Once they have those ranges, they typically spend years more to figure out the optimal range between those extremes.

Unfortunately, for a lot of complimentary or alternative therapies in particular, that kind of methodical approach is not taken. Instead, a trial is run at one dose or MAYBE a very few different dosages. Yet, based on that very limited data, sweeping generalizations are frequently made about the treatment. That is wrong. The studies are only valid with regard to the dosages used, not to the treatments as a whole.

Method of delivery matters

If you have been a cancer patient for very long at all, you know that most systemic drugs, such as chemotherapy, are delivered via an IV and infused over several hours. Most drugs, such as most antibiotics or painkillers, indeed some chemotherapy, are not done that way; they are given by mouth. Still other drugs are injected as a shot over the course of a few seconds at most. Yet others are applied to the skin, i.e. topically. This does not cover all the methods of delivery, but it tells you there are multiple methods of delivery.

There is a reason for these different methods. Some ways work better than others. Some options are safer than others. Some delivery methods are more profitable than others. Regardless of the reason, there is always a reason why there are different delivery methods.

For a lot of drugs and supplements, there is a balance that must be maintained between efficacy, cost, and ease of administration. It is much easier to pop a pill than it is to sit in a chair for an hour having a drug pumped into your veins. It is also usually cheaper to take a pill than to get an infusion.

Your body absorbs vitamins, minerals, drugs, etc. differently with different methods of administering them. Sometimes, taking something by mouth is best. Sometimes, infusing it is best. Sometimes, administering topically is best. There is no universal right answer. The right answer depends on the compound being administered and the desired result.

If we return to the water analogy, imagine you were researching a cure for dehydration and decided everyone needed a gallon of water a day. You have one group drink a gallon a day for a month but have no other contact with water in any form. I would be shocked if anyone died from dehydration. Granted, they would probably be quite smelly since this would mean that they had not showered, but they would not be dead from dehydration.

You then give another group a gallon of water, but this is applied topically. Simply put, you pour it over them. They are not allowed to drink any water. In a month, I would expect everyone in that group to be dead from dehydration.

Both groups got the same amount of water, but the METHOD OF DELIVERY was different. That change will result in radically different outcomes.

This difference is not restricted to just topical versus oral. When you infuse something directly into the veins, you bypass the digestive tract. That frequently results in very different outcomes.

When you take anything by mouth, it goes through a process in which your body tries to break it down. For somethings, e.g. food, some drugs, some supplements, that is exactly what you want. For other things, though, such as some drugs or supplements, that process destroys what you are taking. For others, it does not destroy them but converts or degrades them.

Infusion or oral intake are probably the most common methods for giving systemic cancer treatments. They are not interchangeable.

Dr. Pierre Kory recently published a piece that is on point here. In his article, Dr. Kory showed how a Nobel laureate demonstrated that high doses of Vitamin C given intravenously significantly improved survival for patients with advanced cancer.^iv This treatment was “debunked” by researchers who gave the same dose of Vitamin C by mouth only to find no benefit to that. The researchers claimed this meant Vitamin C did not work. Their research actually did no such thing because it merely showed that giving Vitamin C by mouth did not work. Dr. Kory explained that oral vitamin C is absorbed much more poorly than intravenous vitamin C. I do not know if this was intentional on their part, but the researchers guaranteed their trial would show no benefit because they chose a delivery method that was totally different from the delivery method that worked.

Similarly, if you have followed me for a while, you know that I am a big proponent of IV fluids. For her first chemo regimen, we learned that Betsy needed to drink 15 cups of water a day. Less than that was insufficient for her to feel the best she could but more had no benefit. I had her drink more, quite a few times in fact, but it never helped.

What did help, though, were IV fluids. Regardless of whether she drank 10 cups, 15 cups, or 20 cups of water, IV fluids always “helped immensely and immediately.”^v This is because those fluids bypass the entire digestive process and get right into her blood stream. Drinking that same amount of water did not help; getting it via IV did.

The point is that the method of administration matters. Again, unlike the dose, too many trials, especially for complimentary or alternative treatments (see Pierre Kory’s article on Vitamin C) use an inappropriate method of administration, often due to cost constraints. Do not let those fool you. You need to make sure the method of administration is the right one.

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Timing Matters

A lot of treatments are very dependent on doing them at the right time. You simply cannot do them any old time. You need to do them at the RIGHT time.

Let us return to the hypothetical dehydration research. Let us say you are the researcher and decide to give the patients 14 gallons of water to drink every 2 weeks. You break the patients into two groups. One group gets their water all at one time and must drink it all within one day. The other group gets their 14 gallons but may only drink 1 gallon per day.

What I would expect to happen is that everyone in the first group would die. Some may die from water intoxication, although I doubt it since it is only one day of such absurdly high intake, while the rest would die of dehydration in the days after drinking that water. In the other group, though, I expect everyone to be perfectly fine.

It is all the same dose and delivery method. The difference was in the timing of that dose.

Dr. Kory’s article is helpful in illustrating another way the methods affect the result. In his article, he also talks about using Vitamin C to treat sepsis. Specifically, he found that administering high dose IV Vitamin C within 6 hours of admission to the ICU resulted in every patient surviving.

Like the research into Vitamin C and cancer, the research into Vitamin C and sepsis was “debunked” by changing the methods. In this case, a group of researchers showed that giving patients high dose Vitamin C 29 hours after visiting the ICU did not have a survival benefit.^vi From that, they concluded, wrongly, the Vitamin C did not work when all they showed was that waiting that long to administer Vitamin C did not work.

I have spoken at length about timing for various treatments in my previous articles. Here are a few treatments I have already discussed where the timing greatly matters:

1. Fasting or the Fasting Mimicking Diet (FMD). It is ideally started at least 48 hours (maybe 72) before the chemo infusion, maintained during the infusion, and continued for another day.^vii That is not a random timing; you want a specific metabolic response from your body to coincide with the delivery of your chemotherapy.

2. Icing to prevent hair loss. You need to start icing BEFORE your chemo infusion begins, maybe as much as 30 minutes before, and continue icing for several minutes up to 30 minutes after the infusion begins.^viii You need a specific vascular response before the chemo hits your nerves nerves and must maintain it while the chemo is circulating through your body.

3. Taking an NSAID during surgery reduces the risk of recurrence.^ix I do not know why that is when it needs to happen, although I have an educated guess, but the fact is, that is when the data shows you get a benefit, not some other time.

There are more, but hopefully you get the point. It is frequently not enough to take the right amount of a treatment and doing it the right way. You often need to take it at the right time.

The patient population matters

This is the last one of the methods I will address, but there are many more I could discuss. The patient population matters. There are a lot of ways this matters. Here are just a few:

1. Did the people who were studied have the same or similar cancer to what you have? Too often, we talk about “cancer” and ignore that there are huge differences between the types of cancer. There is a world of difference between lymphoma and lung cancer. In fact, there are big differences between the types of lung cancer.

2. Did the people in the study have a similar treatment history to you? Some studies are looking at people who have had a lot of treatments already while others look at people who have never had any treatment. Those are two VERY different groups.

I have spilled a lot of virtual ink talking about the fact that things change as people get more and more treatment. The first and most obvious is that patients build resistance to their treatments.^x Another big consideration is that, the longer a cancer patient treats, the more that person’s body gets broken down, which means lower capacity to endure treatment.^xi

3. Did the people in the treatment group have similar genetic and biomarker profiles to you? In the last decade plus, we have come to learn a little bit about the human genome, biomarkers and other characteristics.^xii

For example, we have learned that your microsatellite repair status matters. Drugs like Keytruda are approved for people who are microsatellite instable but not generally for those who are microsatellite stable.

Certain genetic mutations, like BRAF, mean those who are mutant react very differently to some treatments than those who are wild type.

Where specifically your tumor is located can have big differences. For example, colon cancer patients who have a primary tumor on the left side of their bodies respond quite differently from those who have it on the right side of their bodies.

4. Was the study even done on people? I have mentioned this before, but it absolutely bears repeating because so many people blur the lines. A study done on a human cell line in a lab is totally different than a study done on humans in real life. Similarly, a study done on mice is not the same thing as a study on humans. Those other studies are not necessarily invalid, but they are not the same thing as studies done on humans.

CONCLUSION

If there is one thing I want to stress, it is that you cannot outsource major treatment decisions if you want to have a meaningful say in your care; you need to make your own decisions. As you make your own decisions, you must be informed. If you are not informed, then you should let someone else make your decisions.

If you want to be an informed patient or caregiver who has a meaningful say in your care or your loved one’s care, then you need to do at least some of your own research. Before you decide on a treatment, you want to know how effective it is and how safe it is.

As you make your decisions, you should listen to your medical team, but that does not mean you do not look into the information for yourself. Lots of people will tell you things, but what they say is not always accurate. You really need to look at the studies about the treatment for yourself.

When you do that, you need to pay careful attention to the methods the study used. The methods the study uses are the most important part of the study. A study is only valid as to its methods used. People, including those who should know better, routinely forget that. If you forget that, you are bound to make major mistakes.

Honestly, some studies are rigged. They are either designed to find a treatment works or does not work. They do that by using methods that practically guarantee a certain result. Those studies are asking what lawyers call a “leading” question, i.e. a question that leads to a particular answer.

Most studies are not rigged, though. That does NOT mean the studies are well done or even valid. Plenty are poorly done. They are still leading questions; the researchers simply do not realize their questions are leading. You learn the value of the results and whether the study necessarily dictated the results by understanding the methods used to get the results.

Many more studies are well done but simply not applicable to you. There are a host of reasons why that may be true, such as using a different dose or for a different issue than you, but regardless of the reason, many studies do not apply to your situation. If you do not understand the methods used, though, you will not understand that and may rely on the study despite the fact it is inapposite.

Fundamentally, you want your research to get you accurate information that is applicable to your situation. You get that by reading the methods section. In fact, if you pay attention to the methods and grasp their importance, you will have better understanding of the research than almost anyone else.

BETSY IN HER OWN WORDS

Fall it is, though we had a very summery feeling weekend.

Daniel and I went out canoeing on Saturday and it was lovely. I also got very tired from it, but it was worth it.

Yesterday I survived my 6th round of chemo. Today I’m tired and little nauseated, but not too bad. It’s always a little tough to go from feeling good to feeling icky from the chemo. But I have 6 rounds down, with only 2 left on this schedule. Yippee. The end is so close. I keep hoping that I’ll get to be the nurse instead of the patient again.

I have been praying a new prayer in the evenings, that there would be no cancer on my next scan or on any scans I have in the future. (Wouldn’t that be nice). I reminded myself of my Grandpa Goob (my mom’s dad). He spend his late teens (late 1910’s early 1920’s) in a body cast because he had tuberculosis of the bone (caught from drinking unpasteurized cow’s milk). He would go to the doctor and each month (it may have been monthly or up to 6 months) the scans were worse to back in the body cast he went ( I never though until it was too last to ask, how he used the bathroom in such a thing). Eventually they became desperate and started praying and with their friends. I have one recollection that they prayed every hour for the preceding month (it could be daily or over a longer time period). But he went back to the doctor and the doctor couldn’t believe it, all the sickened bone was gone and replaced with new bone. He was miraculously cured and lived to be 92. I’ve been praying
for something similar. For them to not be able to find anymore cancer. I ask you help in praying for such good news for me; For all the sickened tissue to be gone and replaces with perfectly health tissue and that the cancer never comes back.

Much love,

Betsy

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i https://concerningcancer.substack.com/p/spoiler-alert

ii If you follow my work, you know I take the position that there is no such thing as a “proven” treatment. Proving something is not an absolute. There are different levels of proof, and different treatments require different levels depending on their risk versus reward ratio, cost, and ease of access. https://concerningcancer.substack.com/p/weighing-the-evidence?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iii See https://www.healthline.com/health/how-much-water-can-kill-you#first-aid

iv

Pierre Kory’s Medical Musings

Professor Paul Marik Identified The Cure for Sepsis. I Watched Medicine Bury It.

*Excerpted from The Silent Aquifer, Chapter 48: Who Decides What’s True: How Modern Medicine Buries What Works…

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a month ago · 2188 likes · 195 comments · Pierre Kory, MD, MPA

v https://concerningcancer.substack.com/p/ouch-my-bones?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

vi

Pierre Kory’s Medical Musings

Professor Paul Marik Identified The Cure for Sepsis. I Watched Medicine Bury It.

*Excerpted from The Silent Aquifer, Chapter 48: Who Decides What’s True: How Modern Medicine Buries What Works…

Read more

a month ago · 2188 likes · 195 comments · Pierre Kory, MD, MPA

vii https://concerningcancer.substack.com/p/betsy-gets-hit-by-a-train?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

viii https://concerningcancer.substack.com/p/freeze-your-hair-in-place?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ix https://concerningcancer.substack.com/p/i-like-boring?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

x https://concerningcancer.substack.com/p/chemo-can-stop-working?r=xwnqz

xi https://concerningcancer.substack.com/p/medical-note-clinical-trial-eligibility?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

xii I realize some may argue that we have learned a lot, but I disagree. It is obvious we know a lot less about the human genome and biomarkers than we know. We have learned a lot, but we have a great deal more to learn.

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Just about every cancer patient struggles with fatigue. To be honest, plenty will have reduced energy no matter what. However, there are things one can do to reduce the fatigue. Here are a few things:

1. Sleep better. I hope that is not controversial, but, I would hope it is obvious that better sleep should reduce fatigue. More sleep is not the same as better sleep, though. Waking up repeatedly during the night, sleeping fitfully, or waking up tired despite getting a full night’s sleep are signs the sleep quality is poor. So, get better sleep. To read more about sleep, read https://concerningcancer.substack.com/p/medical-note-improving-sleep-quality?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

2. Do the Fasting Mimicking Diet (FMD) around your chemo infusion or at least intermittent fasting.ⁱ This is a controversial one because so many oncologists beat into the patients they need to keep their weight up. This is truth there, but it can also be misleading. FMD and intermittent fasting (basically, skipping breakfast) has been shown to reduce fatigue in those getting chemo.ⁱⁱ

If you have never fasted, this may seem strange, but, I assure, you fasting improves fatigue for everyone. I personally routinely fast, and I hate fasting. I love eating, but I have to admit I feel better in many ways when I fast. One of them is that I have increased energy.

I view the FMD as one of the most underutilized complimentary treatments out there. To read more about the benefits of the FMD, read https://concerningcancer.substack.com/p/betsy-gets-hit-by-a-train?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

3. Get hydrated. This is a tricky problem for a lot of cancer patients, especially if they are on chemo. Chemotherapy really does a number on your hydration. You can drink water and use electrolytes (especially if they are sugar free), but I really like getting IV fluids from your doctor. IV fluids hydrate better and had a significant and immediate impact on Betsy.ⁱⁱⁱ

4. Exercise. Lots of people talk about the value of exercise. One of the benefits is that exercise reduces fatigue.^iv

5. Get your heart checked. Almost every clinical trial for cancer patients has requirements for certain levels of heart function. One of the reasons for this is that chemotherapy in particular can damage the heart.^v Once of the telltale signs of heart damage is fatigue.^vi

So, I suggest seeing a cardiologist, particularly if you are still feeling abnormally fatigued after incorporating the other suggestions. It may be that your heart is damaged. Hopefully, the cardiologist can help.

6. Avoid steroids. This last one might be controversial because steroids give you energy. I mostly love when I personally get steroids like prednisone or Dexamethasone (although I do not love the sleeplessness I tend to struggle with). However, steroids exacerbate the long term harms of chemo, particularly the heart damage, which can cause your fatigue to build over time.^vii

7. Consider switching to metronomic chemotherapy. Metronomic chemotherapy is a different, much slower method of doing chemo than is traditional. I will write more about it in the future. There are lots of pros and one huge con in that you will likely need to pay out of pocket for it. One of the major pros, though, is that it is easier on the patient.^viii So, it is something to consider if you have the financial ability to pay for it.

CONCLUSION

Fatigue is a nearly ubiquitous side effect of chemotherapy and many other cancer treatments. Reducing fatigue is on of the most important things you can do to improve the quality of life for cancer patients. You do not simply need to accept fatigue, sleep more, or stop treating your cancer. There are other options that can help.

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i https://concerningcancer.substack.com/p/betsy-gets-hit-by-a-train?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ii https://www.breastcancer.org/research-news/fasting-improves-quality-of-life-during-chemo and https://pmc.ncbi.nlm.nih.gov/articles/PMC8190229/

iii https://concerningcancer.substack.com/p/ouch-my-bones?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iv https://onlinelibrary.wiley.com/doi/full/10.1155/ecc/5511950

v https://concerningcancer.substack.com/p/medical-note-the-hidden-harms-of?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

vi https://www.healthcentral.com/condition/heart-disease/fatigue-and-heart-disease

vii https://concerningcancer.substack.com/p/betsy-gets-hit-by-a-train?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

viii https://www.frontiersin.org/journals/cell-and-developmental-biology/articles/10.3389/fcell.2024.1369597/full

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“Never say never.” It is an old cliché, but lots of cancer patients adhere to it. Even when told they are terminal, many hold out hope that they are not.

To be fair, doctors are actually really bad at prognostication. That assertion is backed by several large studies. It is also backed by actual experience.

A few months earlier, Betsy’s grandmother had died while Betsy was in the hospital recovering from her liver resection. Her grandmother was well into her 90s at that point and was just old and ready to die. She should have been dead 50 years earlier.

Betsy was not the first member of her family to be diagnosed with colon cancer. 50 years earlier, Betsy’s grandmother had been diagnosed with colon cancer. Her doctors told her it was terminal. The doctors were wrong. Her grandmother was cured and went on to live an exceptionally long life.

That always stuck with Betsy. She knew doctors could be wrong. In fact, since Betsy had been diagnosed, we had met several patients who were told they were terminal yet had lived many years and, in a few cases, had been cured. Betsy always held out that hope for herself. Every night, she would pray that we would get 40 years as a married couple.

That hope was closely tied into her desire to have children. She never gave up that dream. While she was on chemo, though, there was no way that was going to happen.

I mean that physically, there was no way that could happen. Betsy was in menopause. She was 33 and in menopause that her chemo had caused. It had started when she was on FOLFOXIRI, and it continued while she was on FOLFIRI.

Every few months, Betsy would suggest she stop chemo, get out of menopause, and get pregnant. I was always against that. I doubted she would live long enough to carry a child to term, and, even if she did, I knew that would mean she would die soon after having the baby.

I think that hope of having children played a part in her desire to buy a house. I wanted us to have a house that was OUR house, but I think she wanted that and more. I think she wanted to have a place where she could raise children.

As I have mentioned before, we were renting a townhouse in our first year of marriage. We had visitors, but, by far, our most regular visitor was my nearly 2 year old niece. We would watch her pretty regularly, and that became a real source of joy for Betsy.

This niece was born about a month before Betsy’s and my first date, and we had canceled our plans for one of our first dates and had, instead, babysat her as an infant. Now, she was nearly two years old and was full of spunk, energy, and joy. In a typical week, we would babysit her once or twice, maybe three times.

When she was on FOLFOXIRI, Betsy had been too sick to do much with my niece. Betsy had enjoyed having the little girl over as she ran around, made a mess, giggled, and played, but Betsy just had not had it in her to do much with that. Now, Betsy felt bad but good enough to play with the girl.

Then there was her brother’s baby who was now five months old. It did not take much energy to put the baby on Betsy’s lap. So, she was able to bond with her niece that way.

Betsy saw the joy of having a child running around the house and a baby babbling and looking cherubic, and she knew she wanted that. So, she decided it was time for us to get serious about finding a house. We had been looking, but, now, we needed to buckle down and find one.

I think she was hoping that, once we had a house, I would change my mind about her discontinuing treatment and having a baby. She was always hopeful that she would get a miracle and be cured or at least get many years, which would make a baby a possibility. In the meantime, though, she had to content herself with nieces and nephews.

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MEDICAL NOTE – The most efficient way to read medical research

You are a patient or caregiver, and you have been talking to other patients and caregivers. They have mentioned a treatment that your doctor has not. You know to go to Pubmed and search that treatment. You get a 158 results for it. That is an awful lot.

In this series, I have made some assumptions and am writing this for a specific group of people. I am writing this for patients and caregivers. You have a very discrete problem (cancer) or set of problems (various side effects, cancer survival, a need to qualify for a treatment, etc.). You are not happy, for whatever reason, with just sitting back and letting your doctor make all of your decisions for you. You are not used to doing medical research and may even feel unqualified to do so.

The problem you face is that (a) your doctor does not know about a great many of these treatments and no incentive to learn about them, (b) all treatments have real risks, (c) you need something to improve your odds, and (d) you have limited time, energy, resources, etc. to spend on the issue. So, you look things up on your own. If you are not careful, you will be wasting your time or worse, misunderstand what the research says. Here is how you can most efficiently run through all of those results.

1. Know what you are looking for

This may sound obvious, but a lot of people do not actually have a firmly rooted objective in the research they are doing. They are looking for something very broad, like something to help with cancer or with pain. You want to be much more specific than that.

You first need to identify a specific objective. Are you looking at something to help you live longer or reduce the size of your tumors? Those are not the same thing. Do you want to feel better? That is too generic. Look for something that treats nausea or fatigue or pain or mouth sores or neuropathy or whatever specifically you need treated.

Then, you need to make sure what you are looking at applies to your specific situation. This can mean it needs to be for your specific cancer or for your specific drug. Just because something works for lymphoma does not mean it will help with triple negative breast cancer. Or just because something works well with a Taxane does not mean it will do the same thing with an EGFR inhibitor.

For example, are you having neuropathic pain from Oxaliplatin? Then you want to look for chemo-induced peripheral neuropathy (CIPN) induced pain caused by Oxaliplatin or at least a platinum-based chemotherapy. You do not want something to prevent CIPN, especially if you are done with Oxaliplatin; that chicken has flown the coop. You do not want something that addresses pain generally. There are different kinds of pain, and you want something to address your type of pain. You do not even want something that works for diabetic pain; those rarely work for CIPN. You need to make sure you are addressing your specific issue, which is CIPN pain from Oxaliplatin.

The examples are endless, but the lesson is the same. You want to know exactly what you are looking for.

In doing that, understand that you may not always find exactly what you are looking for. The evidence simply may not exist. That is okay. You can extrapolate if you want. You do not have to, but sometimes that is the best you can do.

2. Read the abstract

Most although not all papers have an abstract. An abstract is s synopsis of the paper. Sometimes, the Introduction serves as an abstract, but that is not always the case as the Introduction may say something like WHY the authors want to do the research. Honestly, you usually do not care why they want to do the research;ⁱ you care what the research says. The abstract is the first thing you should read because you want to know if the paper is attempting to answer your question.

Let’s say you heard that curcumin can be beneficial. So, you look it up. However, you want to be sure the paper is talking about the issue you want help with.

Assume you want something to add to your chemo to make it more effective so you can live longer. Ideally, you want a paper that addresses your specific cancer, that uses your specific chemo regimen paired with curcumin, and that has overall survival as the endpoint. A paper that talks about whether curcumin helps with nausea is irrelevant to what you want to know.

Reading the abstract or introduction helps you identify the question the paper is trying to answer. This lets you know if it is relevant to you. If the topic is relevant not, skip the paper and move on to the next study.

Lastly, do not get too bogged down in reading the abstract. If it is really long, skip to the end of the abstract to see what question it answers. If that is too hard, skip the abstract altogether and go to the next section I suggest.

3. Read the Results

Yep, I am saying you want to spoil the ending and cut right to the chase. Reading the abstract or introduction should make sense to you and is typically easy because it is usually found right at the top. Once you know or at least think the paper is answering your question, cut right to the chase and read the results.

The results are usually found near the end of the paper; typically, it is the second to last section. You want to read the results right up front so you know what everything else is driving at. Whether the treatment did what you want or not, you want to know the results.

The results tell you if the paper is actually answering your question. Sometimes, the abstract may lead you to think the paper is on topic. You do not want to read eight dense pages only to find out it is actually irrelevant to your specific issue.

You also want to know the results to be sure the paper is worth reading. If the results are that they actually got very little data, then the paper is not worth much. Or if the results turn out to be that what the researchers measured was something silly or off topic, you want to know before you waste more time with it.

Notice, I am not saying to skip to the Conclusions. I am saying skip to the Results. The Conclusions the authors draw are more subjective and sometimes are not supported by the actual results, particularly when you are looking at something that is not mainstream. You want the actual data, not what lesson the paper’s authors took from the data.

4. Read the Methods

Almost everyone glosses over the methods. I really and truly mean that, and I do not just mean patients. I mean EVERYONE.

Your doctor may lecture you about how the Methods are actually really important. It is also extremely common that doctors routinely ignore or do not grasp the importance of the methods. Yes, I am specifically saying that it is absolutely routine that doctors will tell you to pay attention to the methods, but they may fail to do so the next time they read a paper. Even the paper’s authors frequently neglect the Methods in many ways when discussing their papers. The Methods are a big topic and one I will be coming back to in an article coming soon. The Methods are the key to the study.

The Methods are so important because they tell you (a) if the results are valid and (b) how broadly applicable the results are. The foregoing sentence is bolded and italicized for a reason. It is in the Methods that the trials succeed or fail. (Note, by “fail,” I do not mean their results show nothing useful; I mean their results in unreliable or inapplicable to you).

The Methods tell you the dose, timing, manner of delivery, patient population, and more. By controlling the methods, researchers can control the results of the study. This is sometimes intentional, but often it is unintentional. Regardless, HOW the study was done tells you whether the results are applicable to you.

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There are many, many ways the Methods can completely change the outcome of a trial. For example, in my previous article, I said, “Lots of things work in a test tube.”ⁱⁱ Let me illustrate.

In a petri dish, you may have a tissue sample of a tumor. Because it is in a dish and not a person, the researcher does not need to worry about giving the host too high a dosage because there is no host. So, the researcher can give a truly massive dose, a dose than when adjusted to the equivalent dose for a 200 pound man that would be fatal. In a petri dish, the researcher does not need to worry because there is no person to kill.

The results will show that the treatment was successful. However, the results are inapplicable to you because this was a laboratory test using a dosage that you could not survive. This is why the methods matter.

Any study is necessarily limited to the methods used. That sentence should ALWAYS stand out as a key part about any study. All too often, someone, frequently a doctor, will get up and say some randomized controlled trial proves or disproves X treatment. That statement is false.

What is true is that the study showed X treatment got Y results over Z time period when given to patients with condition A in dosage B with schedule C using delivery method D. That is a minimum of seven variables, yet, all too often, people only mention one variable—the treatment. You need to understand all of those variables to know if the study actually applies to you.

Now, just because a study is not perfectly aligned with all of your variables does not mean it does not give you guidance. For example, if you find a study that shows no benefit at one dose but a later study showed a benefit at a different dose, it would be inaccurate to say the first study showed no benefit to the treatment. What is true is that the first study showed no benefit to the treatment at that dosage.

Instead, when you put those two together, you actually get a better idea of what your dosage should be. You are unlikely to get a benefit at the first study’s dosage, but you are more likely to get a benefit at the second study’s dosage.

Of course, the second study’s dosage does not mean that is the optimal dosage. It simply means the study got the stated benefit at that dosage. Maybe that is the best dosage, but maybe it is not. You would need to see many different dosages to get a good idea of what the optimal dosage is.

Hopefully, you can see why the Methods section is the key to everything. The methods tell you the limits of the study, and every study has limits. Put another way, every trial is only as good as its methods.

5. Read the rest of the study if you want

Honestly, once you read the foregoing sections with a clear understanding of what you are trying to find, you usually do not need to read the rest of the study. Now, I am saying “usually;” sometimes, there is real gold to be found in other sections. Usually, though, those sections really do not affect anything you, as a patient or caregiver, will care about.

In saying that, I am making some assumptions. My main assumptions are: (a) you do not want to do lots of research, (b) you are not comfortable doing research, and (c) you feel somewhat in over your head. If you feel comfortable with the terms of art and really want to understand the study, by all means read the rest of the paper. Usually, though, you are best off ending with the methods and understanding the findings and limits of the study.

Some will accuse me of being cavalier with the research or some such. After all, you may miss some nuance in the study by just reading the sections I suggested. That is true; you might miss some nuance. Is that nuance really helpful, though?

There is a reason I am saying you can skip the rest. “At a certain point, extra data can overwhelm our brains and actually make decision-making harder, not easier.”ⁱⁱⁱ Will some nuance or exposition of the hard facts actually help you? Probably not. What they will do, though, is take up your time and brain power with little to gain in most cases.

By reading just those sections, you have gotten the vast majority of the hard data. You do not need the authors’ conclusions, speculations, or discourse on challenges they encountered doing the study. You have all or almost all of the relevant facts. Once you have those, you can feel free to move on.

CONCLUSION

Reading medical research is rarely actually all that difficult. Well organized papers have clear sections that are each conveying their own messages. Many people get bogged down in side quests in the studies. They miss the key information by getting distracted by all the other words in the studies. You can avoid that by only reading the important sections and doing so in the right order.

BETSY IN HER OWN WORDS

Yesterday was round 5 of my chemo. All went smoothly. Only 3 more really nasty days of this to go.
I woke up and wasn’t ready to go back to sleep. I also think I have a little cold coming on, judging by the number of Kleenexes I’m going through.

I had a lovely girl’s weekend with some friends. It was a little sad for me. In our group with have a new baby, a grad student, and one with a new boyfriend. All these new things and thinking I might not be around to see their full-fruition 10 years from now. And it made met think my little nieces and nephews might not remember me. Which makes me sad. On a level we are here to glorify God so my memory matters only so much in that it leads to God’s glory and not my own.

My doctor’s note from last week, in spite of tumor shrinkage, did note my goals of treatment are palliative to lengthen life while maintaining quality of life. I read that on Monday as well. Science says I can’t be cured. Science says my tumor won’t go away and will kill me. There are laws of disease that God has put into motion in my life. But there are often times when God works miracles either by providing new treatments that halt it’s progression or by other means. Jesus stills heals, but it’s not always what’s best. Ironically my BSF was on Monday night and we are studying Revelation, the end of the bible. We don’t know the when, but Earth will pass away and there will be a New Heaven and a New Earth and we’ll dwell with God and there will be no more sickness or crying or pain. I needed some fresh hope.

Cancer is a cycle. Test Result, lost hope, go to treatment and get response, have hope, more tests and realize not enough response, lost hope. Read Revelation and see God as future get hope. (well my cycle anyways). We don’t know what tomorrow will bring. Sometimes it’s okay to be sad, but then to realize tomorrow isn’t hear and worrying about it claims today’s joys.

So I am putting together a diaper bag for Our Niece’s birthday as she has been really into playing with her baby doll. I sewed 3 little diapers, and made a receiving type blanket out of some flannel y material my friends gave me, put it in a mini, multi-pocketed craft bag I found along with a pretend bottle and sippy cup. Today I may make a simple little pretend wipes container.

Thank-you for your love and support. I really appreciate it.
I could use prayers to have happy days this week as well as for my cold to go away and for the sore on my bottom to heal up.
Much Love,
Betsy

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i Every once in a while, the Introduction may cite to previous studies that you may find useful, but that is not common.

ii https://concerningcancer.substack.com/p/absence-noted?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iii https://datafeed-icg.medium.com/myth-busting-monday-more-data-better-decisions-db097ba6cf9e

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He didn’t show up. Something had not come up. There was no emergency. He just never planned to show up.

The “he” to whom I am referring was my wife’s second opinion oncologist. The guy who had been calling all the shots regarding her care. He decided which chemo regimen she would do. He brought in the surgeons and other doctors. He was in charge. And he decided he no longer cared to show up.

Every two months since Betsy’s diagnosis, we had taken a week off of treatment to go see him. If Betsy’s medical team was like a symphony orchestra, the second opinion guy was the conductor. He made the treatment decisions, and the primary oncologist, the surgeons, and whoever else was involved executed his plan.

It was not easy to see him. We drove hours round trip to see him. We spent many hours at his clinic. Betsy did some of her scans at his clinic. Betsy had her labs drawn at his clinic, the same labs drawn at her primary oncologist’s office just done at the second opinion guy’s lab so the second opinion guy would have confidence in the labs. Those scans and labs took far longer to get results at the second opinion guy’s clinic than the primary oncologist’s clinic. Where her primary oncologist would turn around those labs in a few minutes, the second opinion guy’s clinic would take hours, sometimes more than a day. So, we sometimes had drive back and forth multiple days or get a hotel room. We put a lot of time and effort into going to see the second opinion guy because he was one of the world’s foremost authorities on Betsy’s cancer.

Two months earlier, he had told us that Betsy was terminal. That had been a tough appointment. This was not our only tough one, but it was one of the toughest. That prognosis had taken our hope that she would get through this and we could get back to our regularly scheduled lives.

Still, he had left us with some hope that we could manage her cancer and get her a number of fairly decent years. We just had to trust his skill in knowing which treatment regimen or trial she should do. So we had walked out of that opinion and booked another appointment with him for today, just like we had done seven times previously. No one had told us he was unavailable or that we could not see him. Instead, they had verified we were seeing him as usual.

This appointment had started off pretty normally with the usual labs and hours of wait time. We had checked in and said we were there to see Betsy’s doctor, and the receptionist had checked us in like usual. When the door to the exam room opened, though, the second opinion oncologist was not the person who walked in. Instead, it was some nurse practitioner (NP). We had never seen her before and had no idea who she was.

Betsy and I were both awfully puzzled she came in. When she started talking, my reaction was, “Why are you here? Where is Betsy’s oncologist?” She did not want to answer. Instead, she spoke as if she were the reason we had come and should care what she thought.

My attitude was and still is, “Why would I care what you have to say?” Betsy had two oncologists already, and they were far more qualified to make treatment decisions for Betsy than the NP. We did not spend all those hours in the car and waiting room not to mention delaying Betsy’s treatment by a week to speak to some random nurse practitioner. That may sound arrogant or harsh, but there it is. We were there to see the expert, not his assistant.

When we were done speaking with the NP, I went around the clinic to find out what had happened to Betsy’s doctor and why he had not shown up to her appointment. The NP had refused to answer, but that refusal did not sit well with me.

What I learned is that he had never intended to show up. He had scheduled himself to attend a conference during Betsy’s appointment, but no one had told us. The scheduler in the clinic had known he would not be attending Betsy’s appointment when we had scheduled it two months prior. The scheduler knew Betsy was scheduling specifically with the oncologist, and the scheduler had told us the appointment was with him.

My assumption is that once he decided Betsy was terminal, she was no longer worth much of his time. I cannot prove this, but I suspect the word had gone out that his attendance at Betsy’s appointments going forward was optional. I say this because, in the future, he only attended roughly half of Betsy’s appointments.

After this, his communication with Betsy would also become much more sporadic. Realistically, if he had nothing to gain, like getting Betsy into a trial he was running and away from a trial he was not involved with, he either would not respond or would give little information and then only in an untimely fashion.

I further suspect there were only two reasons why he kept Betsy as a patient. The first was financial. Betsy’s appointments with them included scans, labs, and the appointment. If you can run the actual appointment cheaply, you can make this profitable. More importantly, from a financial perspective, I think he was hoping to keep her around in case he could convince her to treat at his hospital or if a procedure his hospital offered became available so he could refer her to that doctor and keep the money in house, as he had done with her surgeries.

The second reason is because he needed patients for his trials. He was very active in running clinical trials, publishing about them, and speaking about them. That means he needs patients, a lot of patients. Why let go of a patient who might qualify for a trial when you need lots of patients?

This may sound conspiratorial to you; that would be reasonable on your part. However, I think what would happen in the future would justify my skepticism of his motivations. I will write more about this in the future, but here is a short synopsis of how things worked for him.

Realistically, his whole business revolved around his clinical trials. I know, most doctors do not get paid a lot for doing clinical trials. That is not what I mean.

He worked for a number of major pharmaceutical companies. He would conduct the trials and then publish and speak about those trials. It was not publicized as such, but this work was realistically on behalf of those drug companies. It was publicized that he was an expert simply sharing his expertise, and this made him very famous in oncology circles.

That led other doctors, such as Betsy’s primary oncologist, to refer patients to him. His entire business was focused around getting those referrals, which only came from doing the trials and getting publicity from those trials.

Once he got the referral for Betsy, he did not want to let her go. Instead, he frequently tried to draw her further into his clinic and away from her other doctor. He would push his own clinic’s treatment, whether it be surgery or interventional radiology or radiation or a trial, even if the same option was offered elsewhere that would be a better option for Betsy. Even if he was not doing the work, he tried to keep the work in the clinic and made it and the other doctors rich. This gave him both income and job security because he is what we call a “rain maker.”

As a business owner, I can tell you it is a lot easier to find someone to do the work than it is to find a rain maker. Every business needs rain makers, regardless of their skill at doing the actual job (I am not saying he was not skilled or knowledgeable; he was skilled and knowledgeable). Rain makers tend to have great job security and get highly compensated because the business fails without the rain maker. A business can more easily survive with losing the people who do the actual work because you can usually replace them. It is very hard to replace the rain makers; they are frequently irreplaceable.

Betsy’s and my drive home that day was not like our previous drives home. We argued. We had never argued about what to do with her care before. We did not scream at each other or even raise our voices, but we did not agree.

I wanted to be done with the guy. If he was not going to show up, what was the point of going to his clinic? To be honest, I was furious that we had been duped into going to his clinic. It was a bit of a sacrifice for us to go there, and they had intentionally wasted our time. We knew Betsy’s clock was ticking, and they stole some of that time. My position was and is that a doctor who does not care enough to show up is not a doctor you should keep.

Betsy wanted to remain his patient. She defended him that he is a BIG DEAL, and we cannot expect him to skip conferences for her. He has other things to do. What is more, he was one of the most knowledgeable oncologists in the world regarding his cancer. She wanted his expertise.

Ultimately, it was Betsy’s call. She was the patient. So, she got to decide who her doctor would be. She stuck with the guy.

MEDICAL NOTE – What the studies mean? – Understanding Medical Research Part 5

This is a huge topic, and one that cannot be done justice in one post. There will be future posts on this topic.

If you have not previously read my article on the types of studies and resultant papers I think are most relevant to cancer patients and caregivers and are not familiar with the types of studies, I suggest reading that first. It is available here:

Once you know what these studies are, the question then becomes, what are these studies telling you? What are the strengths and more importantly the weaknesses of these studies?

Case note. These papers are typically written by a doctor regarding something they think is noteworthy about something they observed in one or a small number of patients. This is not meant to be an exhaustive, in depth study of a particular treatment. It is just something the author thought others should know about.

Often, that noteworthy thing is something that the author has previously observed or else was extremely unusual but important. Frequently, the author chooses to write a case note because the author lacks the ability to create a more robust study.

You may think good data should just control, but that is not the real world. The truth is that financial considerations greatly affect what information is available.

Put yourselves in the shoes of a conscientious doctor who has been willing to try something unique or have seen a concerning side effect. You have done it for several patients and consistently gotten good results with this novel treatment or have seen this unreported side effect several times. If you care about others, you want other doctors to start using this treatment.

The problem is that you are still a practicing doctor who sees patients full time. You do not have the ability to spend hundreds of hours running a clinical trial. What is more, you do not have the connections to get a clinical trial up and running. You do not have the finances to hire someone to do that work for you. You have reviewed the medical literature and know there is not much discussing what you have observed.

One solution is to write a case note. You can let others know about your experience. It takes you a few hours to write it, but it does not require you to deal with hundreds of patients, pour over charts, or raise millions of dollars. If you are meticulous, you can accurately convey very worthwhile information to those who are open minded.

That is an example of a good use of a case note. Unfortunately, plenty of people write case notes for the wrong reason.

A wrong reason may be because that person wants create a veneer of scientific respectability for something that is nonsense. Your point is not to convey accurate information without incurring great cost but to persuade people who do not understand what this is to do something.

Regardless of whether the case note is a good one or a bad one, you need to understand what it is conveying. It is telling you the experience of one or a very few people. Too often, patients see a case note and conclude what happened there is broadly applicable. To be sure, it COULD be broadly applicable, but that is not what a case note is saying. It is merely discussing the experiences of one or a very few patients. In other words, this is anecdotal data.ⁱ

Candidly, it is in the same category of data as what you might find in some random person’s Facebook, X, or whatever social media post about their personal experience with something. A Case Note is USUALLY a bit more valuable because it is a bit more systematic and possibly from a more reliable source than some random person on the internet who may just be a scammer, but that is not always the case.

Here are some of the benefits of case notes:

1. They are cheap and easy. This means there is a low barrier to producing them. There is more diversity of what they say and produce because they are cheap and easy.
2. They are frequently the first to introduce a new treatment or way of doing things. For many complimentary treatments, case notes will be the only human data.
3. They are in humans. It is important we know whether something actually works in human and not just theoretically.
4. Sometimes, these are the most honest studies you will see. By that, I mean quite a few (not all but quite a few) are written by people who have little or no financial incentive in what they are saying; they are just conveying information they think others should have.
5. These may be your best source for human data on out of the box thinking.

Case notes are by no means perfect. Here are some of their drawbacks:

1. They are anecdotal. This means their findings may not be broadly applicable. This is the most important drawback and one you need to clearly grasp. Just because one person had a particular response does not make terribly likely you will have the same response.
2. Some are not worth the (virtual) paper they are written on. Because the barriers to writing them are low, some are exceedingly low quality if not actual lies due to the lack of rigor in them.
3. They have a bad reputation among doctors. This is unfair, but there you have it. Almost every doctor will dismiss these out of hand and will not consider anything they say simply because it is the report of just one person.

I will be honest, I have made a personal treatment decision primarily on a few case notes and some personal attestations in a Facebook group. It was a fantastic decision and is easily the best thing I have done for my personal situation in years. That is not my norm, though.

I did it because (a) the standard treatments are very harsh and not very effective, (b) the case notes and personal attestations were really solid, (c) the laboratory data on the mechanism of action suggested it would help, (d) the voluminous empirical data for other uses shows the treatment is extremely safe, and (e) the treatment is pretty cheap. In other words, my personal balancing testⁱⁱ told me to go for it despite the evidence supporting it for my purpose not being very good basically because it essentially could not hurt me either physically or financially.

So, I have used case notes as my best (although not only) evidence for myself personally to make a treatment decision. Normally, I use a case note more as a starting point, though. Hopefully, after that I can find some solid empirical, human data on the matter. At the least, I want to know if others have made a similar observation. I certainly want to know about the safety, expense, and difficulty of accessing the treatment.

Sometimes, you will get many case notes regarding the same treatment. There is usually one of two possible reasons for that: (a) someone is trying to sell you a load of nonsense by getting similar anecdotes published repeatedly or (b) someone or multiple people who do not have the ability to do a legitimate study (for any number of valid reasons) want to alert the world to something they see and think is important. It can be hard to tell the difference between the two, but, if you can find the latter, you might be on to something truly novel and helpful.

Clinical trial report. Many people view this is the best evidence you can get. Certainly, sometimes that is true.

A clinical trial is a human experiment, but not all clinical trials are the same. Some are randomized while others are not. Some are placebo controlled but not all. Some are blinded but that, again, is by no means universal. What they all have in common is that they are human experiments.

Not all reports or trials are equally well done. Be very, very clear about that. Some are absolute trash with trials that were never going to do anything worth doing and reports that never should have been published. Others are rock solid with fantastic trials that really move the needle and reports that should be published far more broadly than they are.

Here are some of the positive aspects of clinical trials:

1. They are empirical. This means it is not just the results of one, two, or three people but of a larger group. Something people forget is that empirical data is just a collection of anecdotes, but if you have 10,000 people’s experience to draw on, that is a lot more reliable than the experience of one person.

2. They tell you the dosing, method of delivery, timing, and more used in the trial. This does not mean those are the optimal way to do things, but it tells you if that way of doing things worked. In other words, if you are looking at doing something unusual such as a lot of complimentary treatments, this can guide you in deciding both WHAT to do and HOW to do it. In the absence of any other way to do it, this gives you guidance.

3. This is in humans. Lots of things work in labs. Lots of things work in mice. Few things work in humans. If the trial is well done and shows a treatment worked, that is good evidence it works in at least some humans when done that way.

4. They can frequently be better controlled, meaning fewer variables, than pretty much any other human study.

All of those pieces of information are extremely valuable. They may be available in other types of papers, but they are almost always available in clinical trial reports.

When a clinical trial is well done with good design, enough patients, and sufficient time, it is excellent evidence. If it is repeated by a different group of researchers with a completely different group of patients, then it becomes extremely solid. If you find that, then you are really on to something that should really draw your attention and likely guide your treatment decision.

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There are some MAJOR downsides to clinical trials, though. These downsides are rarely discussed and typically minimized, though. In the near future, I will write a post about the pitfalls of clinical trials because the topic is so big and so important.

Here some of the major problems with clinical trials:

1. They are EXPENSIVE. No other study mentioned in this article comes remotely close to the cost of a clinical trial. That cost does not necessarily make them better; it just means they cost more.

2. They are SLOW. In the cancer context, most trials take many years to have any sort of validity if the goal is to examine overall survival. Even if it has a different endpoint, it takes a lot of time to run a trial. It takes more time to write the report. That means, the information you are reading is at least somewhat dated and that an ongoing trial will not be able to give you any useful information anytime soon.

3. Trials are most commonly done for commercial purposes. None of the other studies listed here can be used to obtain FDA approval of a treatment, with the very rare exception that a few observational studies can be used in certain circumstances. Because trials are typically done for monetary reasons, they are the most likely to be manipulated to get a desired result.

4. The requirements of trial necessarily means the trial findings may actually be much more narrowly applicable than most people realize. This is particularly concerning because so many doctors think trials are more broadly applicable than they frequently are.

5. There can be ethical problems with trials. Some treatments simply cannot be studied with a trial ethically. Attempts to remedy ethics problems can make some trials very unreliable. Other trials simply ignore the ethical problems and frankly are very dubious as a result.

6. Trials are viewed with essentially a religious devotion. This means that all too frequently, doctors and health authorities do not actually consider the merits of the trial on its own. Trials are worshiped, particularly when they reach the right result.

As I was writing this, Dr. Pierre Kory published a piece showing exactly how randomized controlled trials were utilized to incorrectly “debunk” intravenous Vitamin C for both sepsis and cancer. His experience is not unique, and his work bears reading.

Pierre Kory’s Medical Musings

Professor Paul Marik Identified The Cure for Sepsis. I Watched Medicine Bury It.

*Excerpted from The Silent Aquifer, Chapter 48: Who Decides What’s True: How Modern Medicine Buries What Works…

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a month ago · 1551 likes · 170 comments · Pierre Kory, MD, MPA

Whenever you look at any kind of study, whether it be a case note, a clinical trial report, an observational study, or anything else, you need to look at a host of factors to see if the information presented has validity. Among the pieces of information you need to consider are the controls in place, dosage, timing, and delivery of the treatment. I will write more about this in the future, but those over hyping the value of trials routinely ignore these problems.

I do not want anyone to mistake me for saying clinical trials are categorically or even mostly useless. Clinical trial reports are a major piece of evidence for me. I much more frequently base my decisions on clinical trials than any other study. More often than not, I ascribe more value to a clinical trial report than anything else.

Knowing exactly what the results were for a group of people given a particular dose, method of delivery, schedule, and treatment for a particular malady is extremely useful. That is what a well done trial report does. So, understand very clearly that I am saying a well done trial and well written report, particularly if it is confirmed in a separate trial, is extremely valuable to you, possibly more valuable than anything else.

Systematic review/meta analysis. As I said before, these try to find many papers on a particular treatment. In practice, they basically never find everything there is to find. Usually, they find a lot. What they find might be clinical trials or case notes or observational studies or a combination of all those.

This can make them very useful in most cases. Without you needing to go research for hours to find a number of clinical trial reports or observational reports or whatever, they give them to you in one paper. So, the research can be very powerful and a tremendous time saver.

Here are some of the good points about a systematic review/meta analysis:

1. Citations to multiple other studies for further study.
2. A bigger view of the topic being researched than just a single study.
3. This is cheap to do, particularly when compared to a clinical trial.
4. They show if there is confirmation of a theory.

There are two big concerns, though:

1. These studies rarely (ever?) find every applicable paper out there. Often, there are huge, gaping holes in their research. Typically, the authors tell you which databases they searched and what their search queries were. This can be useful for you in making your own search either with different search terms or in different databases.

2. All too frequently, the authors are not accurately stating what every study found, often because of some kind of bias the authors have. So, you need to be careful in relying on their own conclusions.

Fortunately, the authors typically cite all of the studies they are discussing. So, you should go to the citations and read the individual studies for yourself. In my view, that is the best use of these types of papers. They give you a fantastic starting place. I rarely care about the authors’ conclusions, but I very much care to read the studies they cite.

Realistically, a meta analysis is probably my favorite type of research to find. In the future, I will write about what “science” is, but one of the big things to know is that a piece of research, such as a clinical trial report or a case note, is not scientifically valid unless it can be reproduced. A meta analysis or systematic review typically cites the initial study as well as the later studies that support or undermine the first study (assuming the authors are playing it straight). If it is well done, that generally makes it more reliable than the other types of papers I have discussed.

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Observational study

Particularly for a lot of complimentary or alternative treatments, this may be the best evidence you can get. Yes, I would personally prefer a bunch of well done clinical trials, but that is frequently unrealistic. (In fact, all too frequently, there are extremely bad clinical trials that “debunk” these treatments without a solid evidentiary basis). Observational studies, if done well, can be good and maybe even better evidence than a clinical trial.

Here are some good points about observational studies:

1. They can be very robust.
2. They are far cheaper than a clinical trial.
3. They are typically “real” data based on “real” people, not highly controlled data that may be designed to get a particular result.
4. They can be used to test more treatments than a clinical trial because they raise fewer ethical problems.
5. They are more likely that a trial to see something unexpected.

Here are some problems:

1. There may be selection bias in the group that is observed.
2. It may be hard to tell if they are showing causation and not just correlation, particularly if they are poorly done.

I expect some people will challenge me that there is at least one more major potential problem, which is the potential for confounding variables. Yes that is a problem, but it applies to all studies and is not unique to observational studies. I actually view this as a strength when compared to something like a clinical trial because the confounding variables are often more apparent with an observational study than with a trial.

Many people like to downplay the significance of observational studies. Certainly, some are nonsense, but that is true of every kind of research ever done. Others are extremely useful and are great evidence.

I frequently use these, particularly when a clinical trial is not available. If there is a a clinical trial, I look to see whether it supports the observational study or undermines it. If the former, great; I now have confirmation of the initial observation.

If the clinical trial undermines the observation, then I need to examine things more closely. Was the trial’s methods the same as those of the observation? Were both the trial and the observation robust enough, meaning they had enough people over enough time? Was one of the studies manipulated? Did the two studies actually compare the same thing or just something that on the surface seems the same but is actually not the same? Those are all big questions.

Laboratory reports

A big thing to understand about laboratory reports is that they are nowhere near as strong evidence of efficacy as anything you can get from a human. Every month or two, I see some headline in the news that a cure for cancer has been found. I have seen this for over a decade; so I usually just ignore those headlines now. Every once in a while, though, I look because someone asks me about it.

Almost invariably, the treatment was only tested in a test tube; occasionally it was tested in mice. I have seen this dozens of times. Exactly none of these “cures” have been anything even approaching a cure.

Lots of things work in a test tube. Fewer work in mice. Even fewer work in humans. Here are some of the reasons why medicine works in test tube but not necessarily in people:

a. There are no problems with actually getting the treatment into the tumor.
b. There are no side effects to worry about.
c. Dosages can be as high as the researcher wants.
d. Cancer is not hiding anywhere else.

There are loads more reasons why things work in a laboratory and not the real world, but you hopefully get the point. The bottom line is that it is much easier to treat something in a test tube than it is to treat a living animal.

Even mice are easier to treat than humans, though. Mice and humans are different; so they can give you different responses to the same treatments. What is more, you still do not have the concerns with side effects on mice that you do with humans, i.e. the researcher may make the mouse much sicker than a human would tolerate. That may seem cruel, but that is the reality.

So, it is very important to understand that just because something works in a laboratory report does NOT mean it will work for you. That does not mean it will not work for you, but success in a lab by no means guarantees success in a human.

For this reason, laboratory reports are often pretty much dismissed by doctors, particularly when they are about complimentary or alternative treatments. I do not think that is right, either. Here are some of the benefits of a laboratory report:

1. They tell you HOW a treatment works.
2. They give you a basis for thinking the treatment might work in a human. This is usually the starting point for developing a treatment. If you do not start, you cannot reach the finish line.
3. They eliminate variables more effectively than probably any other study.
4. They generally more accurately judge causation than any other study.

Now, here are the drawbacks:

1. This is not in humans. That drawback cannot be overstated.

Honestly, every other drawback to lab data is secondary to the fact that it is not in humans. Never, ever, assume that something that worked in a lab will work on you.

As I said above, a lab report can tell you HOW a treatment works. Once you know that a treatment works, you usually want to know how and why it works. This is important so you can (a) use different pathwaysⁱⁱⁱ and (b) have multiple options to hit a particular pathway. This can reduce toxicity, improve efficacy, and more.

A WORD OF CAUTION. Particularly in the complimentary and alternative treatment world, lots of people will say things work based on laboratory studies. They base this on theoretical data, such as a pathway or a target for the treatment. Be very clear that none of that proves the treatment works. It shows HOW it MIGHT work.

I think there is real value to laboratory reports in that they give you the theoretical underpinning of a treatment, but you need to know how to use them. The fact these are not studies based on humans necessarily means these studies may not apply at all in the real world with real humans.

CONCLUSION

Different studies tell you different things and have different benefits and drawbacks. Understanding the pros and cons of the various studies helps you figure out what the study is telling you and how persuasive that information should be to you.

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BETSY IN HER OWN WORDS

The result found in yesterday’s testing- A shrinking tumor and a further drop in my CEA (it is now 79... yes Two digits only). Yippee!

What does this mean? More chemo! or Continue the current course. Four more rounds of my high power chemo and then a reprieve to low-powered/maintenance chemo until the cancer starts growing again (which today’s NP thought average would be about four months). I hadn’t talked much about the low-powered chemo before. I have been looking forward to being off high powered chemo, but it sounds like the low-powered chemo isn’t going to be as easy as I thought, but that is also borrowing trouble from tomorrow.

It means working towards living life as normally as we can. It means living with cancer, or just like any chronic disease you always have to take medicine for (like diabetes or heart disease). So I believe Daniel and I are going to pursue the dream of home ownership. I think it means looking at the best way to go back to work as I can tolerate.

But it is also terminal. I hate to tell you this, but you all are terminal too. (My 5th grade Math teacher, XXX, used to say the only things you HAVE to do are pay taxes and die). Having cancer gives me the benefit of knowing what and when (sooner then most of you, I probable won’t make it to 60). It gives me the benefit of having people appreciate me. I had the fortunate business of day-tripping to XXX by myself yesterday and spend an hour visiting work and multiple hours visit with friends and running into old co-workers while at my appointments. Everyone told me my hair looks great (I said it sticks up in the morning and was going to post of photo of my hair sticking up 2-3 inches from my head, but it didn’t stick up that way today) and that I look great and have great color (apparently I looked a little gray this spring) and that I was laughing more often then on my other visits. I felt so loved. I was an awkward child who struggled with friendships in middle and high school and felt the same way in the workplace. Having cancer has taught me that more people care about me then I imagined. THANK YOU.

After such a great day I found myself composing a list of things that are worse then having cancer. And it’s not short. I think it would be harder to be divorced or have divorced parents or have an addiction or a close family member with one, or to be my family having to watch me be sick, or to be persecuted for what I believe such as all the displaced people pouring into Europe from Syria or Christians in Northern Nigeria, or to struggle with mental illness and to having the daily struggle just to get out of bed each day... I’m sure many of you might have things on this list and I’m saying I think what you’re dealing with has many challenges and wish I could give you the some of the support that has been given to me.

I was asked this week by many people how I was coping with waiting for test results. Waiting. Waiting is such an interesting thing. Waiting often involves worry over what is coming. Before the results came in today I had figured there would be 5 possible outcomes- tumor gone, tumor shrinking, tumor stayed the same size, tumor growing, tumor everywhere. When I told that to Daniel he said “so you got a B”. I personally, am always hoping for the best (tumor gone) and preparing for the worst (tumor everywhere). It was a little sad not to get the best and but happy not to get the worst. I found most of my life is like that. Things usually don’t go as well as hoped, but nor do they end up in worst case scenario. As I mentioned last week we are studying Revelation 4 this year in my BSF. This past week we continued to look at biblical Prophecy. My husband pointed out that since God exists outside time, all prophecy from him is basically God revealing facts to us. In Isaiah you hear facts about the now (they are unrepentant) and the future of Israel (destruction for unrepentence) and the messiah and heaven. Facts were revealed and then there is/was waiting to see them happen. Same thing for
Abraham and waiting for a son.... Waiting. We wait a lot. I waited 32 years for a husband. He waited 36 years for me. Waiting involves hope (see what I did there- brought it back to hope). Before the test results there is hope that they can be best case scenario. Afterwards that hope changes. I hoped for a husband, but there were many years that didn’t seem like it was going to happen. Just like it doesn’t seem like my cancer will ever go away. But there is hope. The facts yet to happen... or promises revealed in prophecy. So I continue to hope it’ll go completely away and know that it will not be there in the New Heaven and New Earth. I have found great inspiration in a new song from the concert I attended last week. I’m posting the lyrics below, It is about a boy who dies and go to heaven. I enjoy listening to it... The chorus says he was feeling new as is everything sad came untrue. Such will be the case is heaven. Even if it doesn’t happen in my lifetime, there is heaven to look forward to.

Falling down a hill I hit my head
The people shouted, Oh no, Jack is dead
But I woke up and found myself instead
In a brand new world

I met a king who sent out all his men
To see a man who’d fallen off his wall and then
They put him back together and up again
And he was made brand new

Then a chorus rang throughout the land
Tower bells and trumpets sounded and
We were singing Mary had a Lamb
And he was white as snow

And we feeling new
We were feeling new
We were feeling new
As if everything sad came untrue

We feeling new
We were feeling new
We were feeling new
As if everything sad came untrue

So I set off to seek the famous Lamb
A little boy named Jack said take me man
Cuz I believed and five seeds in my hand
Became the vine that saved my soul

So row, row, row your boat over the
River and then through the woods we go
I looked around and I saw thousands more
And we were singing louder than before
Yeah we were getting close

Then we set our eyes open that hill
City walls of rock and gold were built
Then at once my heart was calmed and stilled
When I saw the Lamb

And we feeling new
We were feeling new
We were feeling new
As if everything sad came untrue

We feeling new
We were feeling new

We were feeling new
As if everything sad came untrue

So I said hello, I know
I don’t deserve this place
Could you find me some work
To earn my stay here, let me stay
He cried, no I saved my robe and my ring for you
Yes, I’ll throw you a feast
As soon as the cow gets back from the moon
We will dance and sing hallelujah
Hallelujah, you are home

I fell and found the deepest love I know
Come sing my song
I’ll teach you how it goes
Mary had a Lamb and he was white as snow
White as snow, white as snow, white as snow

And we feeling new
We were feeling new
We were feeling new
As if everything sad came untrue

And we feeling new
We were feeling new
We were feeling new
As if everything sad came untrue
credits
from Fire and Stone, released 06 January 2015
Jack and Jill Pt. 2- The Gray Havens - Fire and Stone - Copyright 2014 The Gray Havens - Lyrics by Dave
Radford - Music by Dave Radford (SESAC) and Mitch Dane (Satellite Serenade, ASCAP).

To listen:

How wonderful heaven will be. If you don’t already know God, look for Him and repent so you can be there too.

Much love, Betsy

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i https://open.substack.com/pub/concerningcancer/p/wheres-the-evidence?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ii https://open.substack.com/pub/concerningcancer/p/weighing-the-evidence?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iii See https://open.substack.com/pub/concerningcancer/p/catching-the-cancer-criminal?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web for why you want to hit multiple pathways.

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It was September 2015, and I felt terrible. My wife and I had gone to a drive-in movie theater (yep, they still exist), and I had gotten sick there. Really sick.

I want to sleep in the guest bedroom that night because I knew I was sick and wanted to stay away from Betsy so she would not get it. I woke up 16 hours later covered in sweat.

The only reason I woke up when I did is because Betsy woke me up. She had gotten concerned I had slept so much and came in to check on me. To say I was a tad grouchy would be to put a positive spin on my behavior.

Betsy had common sense and knew 16 hours of sleep was very much not normal. What is more, she was a nurse and was extremely concerned. So, she took my temperature. It came back over 104 degrees Fahrenheit.

I knew that was awfully high, but I had not grasped how concerned that made Betsy. From then on, sleep became more challenging for me because Betsy went into nurse mode and started checking on me every two or three hours. She would later tell me that in her decade of nursing experience, she could count on one hand the number of patients she had seen with a temperature as high as mine. In fact, she had contemplated calling an ambulance for me multiple times.

For several days, I was pretty incapacitated and basically got out of bed only to use the restroom. It was quite the role reversal because now Betsy had to take care of me despite not feeling on top of the world herself. Nonetheless, we got through it.

It was also now our first anniversary. I was a bum who just got his wife a card and chocolates. Betsy had done better.

Weeks earlier, she had scheduled a trip to a bed and breakfast an hour away from our house with a canoe trip. I had not actually known about that; so this was a surprise to me. Given how sick I still was, I had some trepidation about the trip, particularly with the planned canoe trip.

This was our first trip away since our honeymoon, which had been derailed by Betsy’s then undiagnosed cancer. Now, this trip was derailed by my illness. We still went through with it, but I was decidedly less than good company. I even made Betsy do most of the paddling of the canoe.

The irony is that, if we both would have been well, Betsy still probably would have done most of the paddling. One thing Betsy found terribly amusing is that I am, in my own words, “an avid indoorsman.” I have never done a canoe trip longer than an hour or two.

It had been years since I had been in a canoe. In other words, I am an barely a canoer, much less a canoeist.

Betsy liked camping, canoeing, and the like. She had done canoe and camping trips. Until cancer, she would happily portage her canoe and spent hours on the water. Me, not so much.

She was also a traditionalist who wanted her husband to be in charge. That also applied to the canoe. I was the man; so I was in charge despite the fact I had to be reminded the rowing stick is a paddle, not an oar.

Our leadership decision was a poor choice. Both because I lack skill with a canoe and because I was so sick.

After a half hour or so of me embarrassing Betsy in front of the other people canoeing on the river, we finally switched places so Betsy could steer. I further covered myself in glory by promptly lying down in the canoe and going to sleep. Yep, I made a cancer patient who weighed 100 pounds less than me paddle me down the river. Then she drove me home.

So, happy anniversary to us? We did not know how many anniversaries we would have and did not expect many; so Betsy had put real thought and effort into making our anniversary special. Alas, it had fallen somewhat flat with my illness.

On the positive side, her tumor marker, CEAⁱ, was going back down again. At diagnosis, her CEA had been just under 14,000 where a normal reading is under five or even under three. It had gotten down to the double digits following her liver resection but then had spiked back up with her recurrence. Now, it was trending down again. So, we were hoping Betsy would get some years out of this chemo.

MEDICAL NOTE – THE TYPES OF RESEARCH PAPERS

In all of this series about medical research, the point is not make you into a professional researcher. The point of this series is to equip you to know what you as a patient or caregiver need to know about medical research in as short a time as possible so that you can make meaningful decisions about your or your loved one’s care. This is certainly not an exhaustive discussion of all things relating to medical research.

Unfortunately, a lot of people trying to research their own case really do not understand what they are looking at. All too often, people do not get what the different types of studies and papers are or what they mean. So, today, I will discuss the main types of papers you will probably look at.

1. Case note. “A case report is a detailed report of the symptoms, signs, diagnosis, treatment, and follow-up of an individual patient.”ⁱⁱ “The most common reasons for publishing a case are the following: 1) an unexpected association between diseases or symptoms; 2) an unexpected event in the course observing or treating a patient; 3) findings that shed new light on the possible pathogenesis of a disease or an adverse effect; 4) unique or rare features of a disease; 5) unique therapeutic approaches; variation of anatomical structures.”ⁱⁱⁱ

In other words, a case note is a paper written about one particular patient’s experience with something. Occasionally, it might be about a few patients, but it is never more than a tiny handful. This information is not carefully controlled, and this is not a clinical trial. Instead, it is basically one patient’s or a tiny handful of patients’ experience.

For example, a case note might say A patient has B condition and decided to try C treatment. The patient’s results were X. In other words, this is anecdotal data.

In format, I have found these to be the most varied. A well written one has a clear structure that tells you (a) the patient’s malady, (b) what is being studied, (c) what was done, (d) the results, and (e) a discussion. Many are not so clear in their organization, though.

2. Clinical trial report. When a researcher conducts a clinical trial, regardless of the phase, controls, randomization, or anything else, the researcher HOPEFULLY publishes a clinical trial report. This is a “narrative that explains what your trial asked, how it was executed, what it found, and why those findings are believable. When drafted well, the CSR allows regulators and external reviewers to reproduce the scientific logic from protocol to analysis to conclusion without guessing intent.”^iv In other words, this type of paper tells you what the investigators studied, how they did it, and what they discovered. (notice I left off the last bit about the findings being believable. There will be a future post on that because it is a massive topic)

In my first article on understanding medical research, I said “Publication rules all.”^v The clinical trial report is the only thing worthwhile from the perspective of a patient who does not participate in the trial. This is because this is how the results of that study are generally communicated.^vi

These reports are usually broken up into the following sections:

A. Abstract – This is a short overview of the paper.

B. Introduction – The introduction is a statement telling you why the researchers did this research.

C. Methods or Design – This section tells you how the researchers conducted the research. This is often overlooked by patients and doctors for that matter. It is very important, and there will be a future post about this.

D. Results – This tells you what the researchers found.

E. Discussion – This is typically where the researchers interpret their results. These interpretations are of widely varying quality.

Not all papers look the same, and the may have more or fewer sections (most notably a number have an “objectives” section or a “conclusion” section that is separate and distinct from the “discussion” section). However, generally all of this information will be available somewhere in the report.

Frequently, when people talk about evidence in the medical context, they mean some kind of clinical trial report. It is not the only evidence one can have, but it is a major piece of evidence.

3. Meta analysis or systematic review. Some will tell you there is a difference between a meta analysis and a systematic review. I am lumping them together because, for the purposes of most patients, the only difference is that they use different letters to create the same thing.

Technically, a systematic review finds every relevant study it can on a particular topic and summarizes them. A meta analysis likewise gathers all the studies it can, but then it analyzes those studies to draw a conclusion.^vii Often, they kind of get packaged together since a meta analysis pretty much by definition includes a systematic review, and a lot of people who do a systematic review want to put their two cents in and do a meta analysis.

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Often, although not always, the studies these things look at are clinical trial reports. So, in other words, a meta analysis or systematic review is frequently a summary and analysis of the findings of every clinical trial report the researchers can find on a particular topic.

4. Observational study report. When most people think of the two previous types of papers, they are usually looking for and thinking about interventional studies, which means studies where someone is administering some kind of treatment and researching its effect on patients. In other words, they are writing about experiments.

However, there is another kind of study you can read—the observational study. In this study, no researcher is administering any treatment. This is not a clinical trial of any sort. Instead, this type of study is one where the research purely observes.^viii

Why would they do this? Any number of good reasons. It may be that it is unethical to do a trial. It may be too expensive to do a trial. It may be too difficult to do a trial.

In format, they can vary widely. Some are written very similarly to most clinical trial reports but others are much more idiosyncratic.

4.a. Retrospective versus prospective study. Observational studies can either be prospective or retrospective.^ix In a nutshell, prospective studies identify a group of patients and track them over time. Retrospective studies look backward at existing data.^x

In a prospective study, patients are gathered before the treatment is administered and then the data collection begins. In other words, the researcher starts gathering data before the treatment starts and gathers it while the treatment is ongoing.

In a retrospective study, the opposite happens. Typically, the treatment has already started and is usually completed before the data is gathered.

With a prospective study, it is usually easier for the researcher to control things, like which patients get admitted to the study. In a retrospective study, the researcher does not get nearly as much control. The researcher gets the information as it is.

5. Laboratory report. Many, many papers are lab reports. It is important to differentiate between studies that are done on test tubes, trials on mice, and human data. A laboratory report will typically have the same format as most of the papers listed above. e.g. an introduction, methods, results, and discussion, but what they are reporting is very different than the previous types of papers.

Except for possibly the systematic review/meta analysis which can be done on laboratory reports, all the rest of the papers are reporting information gained from studying humans. Lab reports do not do that. Lab reports, instead, generally report either results from testing tissue or chemicals in a lab without any living host or testing things in animals, most commonly mice.^xi

For our purposes, laboratory information is typically used in one of two ways: (a) it can be used to learn if a treatment has any hope of working in a human or (b) it can be used to figure out HOW a treatment works. There are other uses, but for the type of research I expect almost every patient or caregiver to engage in, those are basically the two types you will likely care about.

CONCLUSION

There are literally millions of papers available to you. Pubmed alone has over 40 million, although the exact number is constantly changing. There are many different types of papers you can read, but it is important to understand what type of paper you are reading, what kind of information it is conveying, and what that information means. These are not all the same. In my next post, I will discuss some of the uses and pros of cons of these types of papers.

BETSY IN HER OWN WORDS

CEA.

I’ve spoken of this little number before. It’s something they can quantify that some tumors give off. When I first started my chemo last December it was almost 14,000. After my liver surgery it was 62. Then the cancer returned, and it was around 500. This week’s reading, taken before my chemo on Tuesday-181.4. Yippee. It’s not 62, but it’s lower than it was so we are hopeful that the chemo is doing some cancer killing. Next week we’ll know more because I have a scan on Wednesday and a meeting with my XXX oncologist on Thursday. We’re hoping we’ll get more information and some guidance on how to plan for the future with cancer (like a time table or feasibility of returning to work, do we buy a house or focus on other things???).

This has been a chemo week. Round 4 is now under my belt. The halfway point, according to what we planned when the cancer started growing again at the end of July. 4 more rounds to go to see if we can get that CEA level even lower and kick cancer’s behind.

This has also been a busy week. I had lunch with my Uncle XXX on Monday and then went to the first BSF of the fall (I have a new small group and we are studying Revelation-which we are starting out talking about prophecy. I have learned that prophecy is one way God shows us that He is real and in control. God first says he is going to do something (like the promise of a savior) and then delivers on what he said was going to happen. I had not thought of prophecy with a purpose before, it just was always something that is). Tuesday was chemo day, and I laid low afterwards. Wednesday was lazy too. Thursday evening I went to a low-key concert by a group called “The Gray Havens” because a good friend wanted to go. I found their music unique, heaven-focused and uplifting. She then spent the night, and I made breakfast this morning. I felt a little bit like I was running a bed and breakfast after staying at one last weekend for our anniversary. After my friend left I went back to bed for a few hours as I was tired.

I think I am tolerating this chemo better than the stuff I was on over the winter. I like to do what I can, it’s my way of not letting the cancer and the chemo rule.

Thank-you for the prayers. Next week is going to be a big week so prayers would be much appreciated. I still have a sore bottom and meet with a doctor about that on Monday, my tests and results will be Wednesday/Thursday, and then followed by a girls weekend (which will push me to the limit of my physical abilities). Prayer for Daniel are appreciated as well as he continues to have vertigo from the bug he had 2-3 weeks ago and they did some more testing and medications today.

Much Love,

Betsy

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i https://open.substack.com/pub/concerningcancer/p/vomiting-through-chemo?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web and

https://open.substack.com/pub/concerningcancer/p/bible-study-fellowship?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web and

ii https://pmc.ncbi.nlm.nih.gov/articles/PMC5686928/

iii Id.

iv https://www.clinicaltrials101.com/clinical-study-reports-summaries-ich-e3-compliant-writing-integrated-analyses-and-submission-ready-narratives/

v https://concerningcancer.substack.com/p/the-chemo-schedule

vi Be absolutely clear on this, not every clinical trial’s results are published. Not all are attempted to be published. This lack of publication GREATLY affects you. Frequently, the failure to publish is for nefarious reasons. I know, that sounds conspiratorial, but it is true. I will write a future post about this too, but the purpose of this article is to help you understand what this report is.

vii https://epitechresearch.com/systematic-review-vs-meta-analysis-key-differences-best-practices/

viii https://statisticsbyjim.com/basics/observational-studies/

ix https://www.statsdirect.com/help/basics/prospective.htm

x https://statisticsbyjim.com/basics/retrospective-study/#google_vignette

xi https://ccrps.org/clinical-research-blog/clinical-research-vs-lab-research

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Betsy’s recurrence and meant a lot of our dreams as a couple were not going to happen. After finding out definitively about her recurrence, we had our little pity party. We were not going to have decades as a married couple. We were not going to have children. Initially, we even gave up on the idea of buying a house together.

However, it quickly occurred to us that we could at least have a house that was OUR house. We did not need to rent. I have said this before, but, when we got married, Betsy had each moved to an area kind of halfway between the towns where each of us had been living. We had decided to rent for a year while we shopped for a house we could fill with children. Betsy’s cancer had thrown a fairly large (read – really big) wrench in those plans.

After finding out her cancer was back, it took us a few weeks to say, “Why not buy a house?” Betsy had literally never lived in a house her family owned. Why not get her something that was hers?

Our initial reaction was that it was silly to buy a house knowing she would die in a few years at most, but, when you think about it logically, we all know we will die, we just do not know when. Just because we had a better idea of Betsy’s clock did not change things. So, we went ahead with looking for a house.

At the time, much of my legal practice was in real estate. Realistically, I know a lot more about real estate than most people. Looking for a house still taught me a few things.

The first thing I had always known (I guess) but never thought about is that banks never ask the life expectancy of the loan applicant. Before looking for a house, we decided to get pre-qualified to borrow for a house. Even though we knew Betsy was not likely to have many years more in the world, we literally could not tell the bank that. We told the mortgage broker we were working with about Betsy’s prognosis, and he told us it was irrelevant because the process was totally driven by forms with no form for saying one of the applicants was terminally ill.

I had known that going in. It still felt weird, though, getting a 30 year loan knowing it was extremely unlikely Betsy would be alive that long.

The second thing I learned is that some people are weird. I mean really, really weird. One house had a finished basement. The whole basement was fitted in an Old West theme, which was a little peculiar. What was very peculiar is that EVERYTHING was red. The walls were painted red. The doors were red. The lights had red light bulbs in them. The windows were covered with a red covering. Our real estate agent referred to it as, “The Texas vampire bordello.” I think he described it quite accurately.

Another house had torn out their floor. It was a split level house, and you walked into the area between the upper and lower floors. What you walked into were stairs surrounded by a gaping pit. I guess it made the lower level more open, but it came at the expense of having a death trap on the upper floor where there was abruptly a hole where the living room had been. No railing or anything to stop people in the kitchen from falling in, just a hole where the living room had been.

We were looking at – unique(?) homes because Betsy had the same reaction to basically every “normal” house. She would say, “It reminds me of my dad’s house.” I do not know why that was such a showstopper for her, but it was.

Betsy and I both had strong feelings about what we were looking for in a house. So, it took a lot of looking for us to find the house for us. Pretty much every weekend she felt up to it, we went house shopping.

At first, it felt weird to do something so normal knowing her clock was ticking. Then we decided that it was nice to do something so normal and unrelated to cancer. Cancer did not need to rule our lives.

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MEDICAL NOTE – DON’T WASTE ON YOUR TIME – UNDERSTANDING MEDICAL RESEARCH PART 3

You have talked to your doctor or other patients, you have seen people on Substack or Facebook or Youtube or wherever talking about various cancer treatments, and now you have decided to look into them for yourself.ⁱ So far, so good. What specifically should you look for in research when you start out?

If you have not already, I highly suggest reading this article:

In this article, I will try to cut through the noise. There are plenty of things you want to know, but one piece of information is paramount. The question you always need to ask is, “Does this treatment work?” More specifically, you should ask, “Will this work for my purpose?”

You might think it is simple, but the fact is that a great deal of research actually does not answer either of those questions. The questions some research answers may be valuable for all kinds of things, but you the patient or caregiver do not have the time to mess about with those questions until you know the treatment works.

You are not academics who want to know for the sake of knowing. You are people with a very real problem and a ticking clock.

To know if a treatment works, you should ask yourself, “What am I hoping to get out of this treatment?” Most commonly, your answer will be one of two things: (1) live longer or (2) feel better. There are plenty of other entirely valid questions; so do not think those are the only valid questions. Those are just the most common actual questions. Regardless of what your actual question is, when you are first looking into a treatment, you should ignore all research unless it answers your actual question. Otherwise, it is a waste of your time.

Too many patients waste their time on research that is not actually helpful. Here are some specific ways research can waste your time:

1. It tells you HOW something should work, not whether it actually works. A lot of research tells you how, in theory, some treatment works. They will say something like, “This targets the mTOR pathway,” or “this inhibits the EGFR receptor.”

There is a time when you want to know how a treatment works. I want to be very clear that before you decide on doing something on your own, that you want to know HOW it works. Knowing how it works helps you to avoid treatments that could interfere with each other, protect you from overloading one pathway, and can head off unnecessary side effects. So, I am not saying this is not worthwhile information.

The time when you want to know this is not when you are first looking into a treatment, though (unless that treatment is a trial in which case all you may have is theoretical information). Before learning how a treatment is supposed to work, you need to know that it actually works. You only care HOW it works once you know it actually WORKS.

2. It provides proxy information on efficacy. Figuring out if something actually works can be difficult, time consuming and expensive, particularly when what you want to know is if the patient lives longer.

So, a lot of research cuts corners. In fact, a lot (not all or even most mind but still quite a few) of FDA-approved treatments are based on research that cuts corners. Instead of determining if the treatment actually fulfills its real mission, they rely on some other piece of information and hope that information means the treatment is doing what it is supposed to do. I am calling this proxy information but there are other terms, such as surrogate information or surrogate endpoint.

In cancer some common proxy information are whether the treatment makes a tumor shrink.ⁱⁱ Or it might talk about Progression Free Survival (PFS). Or maybe it will refer to an increase in a certain type of white blood cells. Proxy information on survival is anything other than actual survival data.

Now, it may be that you want tumor shrinkage so you qualify for a surgery, ablation, or some other treatment. If so, finding out the treatment made most patients’ tumors shrink a great deal is the information you want. That was the case with Betsy before her liver surgery. We needed some shrinkage to get her to surgery, and surgery had the data showing it was likely to give her a longer life.

In that case, the research showing shrinkage answered the question we were asking when it came to her first chemo regimen. We only cared about shrinkage, though, because we knew shrinkage opened up the door to the treatment that made her live longer. So, in the case of surgery, our concern was whether it made her live longer, not something else like Progression Free Survival.

You might think answering this proxy information necessarily means you will live longer. This is logical. After all, if your tumors are shrinking, your cancer is getting better, right? If it takes longer for your tumors to grow, you live longer, right?

The answer, unequivocally, is not always. In fact, plenty of the time, there is no correlation between this proxy information and actual survival.ⁱⁱⁱ To be sure, sometimes there is a correlation, but that is not always the case.

CONCLUSION

Do not ask me why treatments with solid proxy information or that really do a number on a pathway that seems to be crucial in cancer do not always work. A lot of what happens in medicine is not logical based on our understanding. Sometimes 1 + 1 = 2, and sometimes 1 + 1 = 42. The best answer I can give is that there are significant gaps in our knowledge.

If you do not verify from the outset that the treatment actually has a realistic chance of helping you address the issue you need addressed, then you will, at best, fritter away your time on pointless research.

Worse, you may start taking a treatment that you have no reason to think will actually help you. That is, at best, a waste of your time and money. At worst, it could be dangerous.

So, when you are first looking into a treatment, insist on data that answers the question you actually have about it. Until you have that information, ignore everything else.

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BETSY IN HER OWN WORDS

I was reading Romans this evening and journaling on what God was showing me and thought that it might make for an insightful post. So here I am at midnight sharing.

Most people don’t know that I had a season of mild depression after my mother died. I was 28 and single. So many things I had hoped for had not come to pass and now there was this big empty hole in my life. Yet, I had my dream job, yet wondered why did God bother creating me? I prayed for Joy. God answered by taking me on a journey that led to an understanding of joy and happiness that sustains. (If you happened to be on my Christmas card mailing list a year or two later I may have said a few things about joy). I learned that happiness is transient. I learned looking for joy in this world and worldly things comes up empty handed. I was led to memorize Bible passages such as 1 Peter 1:3-9, “Praised be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil, or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory, and honor when Jesus Christ is revealed. Though you have not seen him, you love him, and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls.” and 1 Peter 1:13, “Therefore, with minds that are alert and fully sober, set your hope on the grace to be brought to you when Jesus Christ is revealed at his coming.” I received a book specifically on the Joy found in Christ, unasked for. I was led to read John Piper’s book Desiring God, which earned Piper the title of Christian Hedonist, where his thesis is that we were created to worship God and was are most happy when we are worshiping Him. At the end of it I had joy. Smiles that bubble up from within, because as it says in Romans nothing can separate us from the love of God once we have Christ and with Christ we are more than Conquerors. External circumstances can’t take that away.

I realized tonight that God is now taking me on a journey through hope. Hope is a relative of joy. That if we hope in things eternal it won’t disappoint (see above 1 Peter 1:13), but it gets dashed to pieces by the world if we hope in other things. In reading Romans, it talks about hope and how it is something longer for and doesn’t exist if it is obtained. (I have a question yet – If Faith, Hope, and Love abide (last forever/remain; 1 Corinthians 13:13) how is it not obtained when we get to heaven, but this is not my current point). There is a sustaining power when there is hope. There is a devastation when there is none.

Cancer can be full of hope that the treatment might work and maybe the next scan will show less cancer and more Betsy, maybe research will yield a new breakthrough and I’ll get a miraculous cure (or God work through some other avenue) and I’ll get decades and babies.

I received news via Facebook that an old friend of mine (she got married and busy with life; so we really just followed each other on Facebook), her husband was just diagnosed with stage 4 Lung cancer complete with brain and bones metastasis (he used to play hockey with Daniel the brief time he lived in XXX and was responsible for Daniel and I being acquaintances years ago). They have 3 small children. I sent her a message with a few things I’ve found helpful as being young with cancer is devastating and not common. And she messaged back with a hint at how hopeless it looks. This is cancer. Hope stealer. The odds are now against you. For every miraculous cure how many more didn’t get one? Time is short. The tumor is growing. More chemo. More nausea. More pains. No babies or retirement. No growing old with the man I love... Which is why we need hope. Hope in everlasting things.

So hope is like joy. With Christ looking heavenward it is strong and sustaining. If we’re not careful we’ll start looking to the world and the world will come in and steal it.

My Daniel is still getting over his sickness from a week ago (he has vertigo and small sore throat yet). But this has forced me to be more independent. I’ve done the cooking and cleaning this week. And I’m getting out with friends and family. If I have more days like these I could get back into working.

On Sunday Daniel and I will celebrate 1 year of marriage. We got sickness a little sooner than anticipated, but we are both still glad we married each other a year ago.:)

Thank-you for the prayers and support. Please pray for my friend and her husband. Pray for my future scan (2 weeks from today) and that my hopes of shrinkage will come to pass. Pray for Daniel’s recovery from this tough bug he caught and that I continue to be free of it. And pray as the Spirit leads (Romans also has the passage where it talks about the Spirit interceding for us and knows better than we what we need).

Much love, Betsy.

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i https://concerningcancer.substack.com/p/wheres-the-evidence?r=xwnqz

ii See https://open.substack.com/pub/concerningcancer/p/the-first-scan?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iii https://www.sciencedirect.com/science/article/pii/S1470204524001529

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When Betsy was first diagnosed, her oncology clinic offered her a class. They call it “chemo class.”

The class was taught by one of the oncology nurses. In that class, she basically run through what the day of the infusion looks like, told the patients in the class which specific drugs they will each be getting, and provided them a list of side effects those drugs normally inflict. I do not believe most clinics offer a class like this, but it is a good idea.

One of the things that a lot of people do not get is what a chemo day actually looks like. Last time, I wrote about the schedule. This time, I thought I would write about what the day actually looks like.

One of the things the nurse said that really stuck with me for some reason was, “You see this scale? Every time you walk past it, you will step on it. There will never be a time you are here that you do not step on this scale.” She was not kidding.

Every other Tuesday was Betsy’s chemo day. Like any appointment, we started off by checking in with the receptionist and waiting a few minutes in the lobby. In pretty short order, Betsy was called back to start the day. The first thing she did, which she did every single time, was step on that scale.

The scale is a huge thing for two reasons. First and foremost, the dosage of every anti-cancer drug Betsy ever got was based very specifically on her weight. It was not based on a large range of weights like many drugs; it was based on her specific weight. There was a pharmacist at the clinic who would mix up the precise amount of chemo and other drugs Betsy needed. The amount for everybody else, even if that person were doing the same regimen as Betsy, was different.

The other big thing about the scale was to watch out for excessive weight loss. That is a very bad prognostic sign. During Betsy’s first chemo regimen, it had gotten a little scary, but it was never a problem thereafter.

After being weighed, she had to give the clinic a urine sample. Then, she would go into the lab and have her portⁱ accessed and blood drawn. After that, we would wait a few minutes before being called back into the exam room.

Once in the exam room, it started like pretty much every other appointment. The nurse or nurse’s aide would take Betsy’s blood pressure, double check her medicines and supplements (which was QUITE a lengthy list), and then get the doctor. Usually, the doctor would come into the room 15-20 minutes after the blood draw.

To some, this may seem fast. Betsy’s first clinic was small. It had five oncologists I believe. It was part of a much bigger practice, but the clinic itself was pretty small. This had pros and cons, but one of the big pros was that it was usually really quick to get things done. Such a quick turnaround on labs is not always the norm.

Once the oncologist walked in, he sat down at the computer and started clicking his mouse. What he was doing was clicking boxes necessary for her insurance company to authorize her chemo. Every doctor now has to click boxes, but the amount he had to do was truly extraordinary. It was typically, by far, the longest part of the appointment.

In fact, it took so much time, that we held our discussions while he was clicking. By this point, it was not that big a deal because Betsy had done 10 rounds of chemo and knew what to expect. What is more, she was on a less aggressive chemo regimen than she had been for her first eight rounds, and the side effects were not nearly as bad.

For all of our conversations with her primary oncologist, the main topic of conversation was side effects. Yes, we discussed other things, but the biggest issue was always side effects and what to do about them.

Regardless of our talk, though, the doctor was always at least partially distracted because he had so many boxes to check or uncheck on his computer. Even though it did not take much brain power for him to check or uncheck the boxes on screen after screen, the fact he had to split his attention necessarily meant he was not operating at peak capacity.ⁱⁱ There really was no other option, though, because he had to spend so much time clicking or unclicking boxes that once he was done, the appointment was nearly up.

He routinely concluded by feeling Betsy’s abdomen so he could feel her liver tumors. Once that was done, he sent us on our merry(?) way to the infusion room to get chemo.

The infusion room had 24 recliners for patients to sit in while they got their chemo. The room was fairly nondescript. In the future, we would go to other infusion rooms that were much nicer in many ways, but every infusion I have ever been to all offered recliners for the patients.

They all also offered loads of high simple carbohydrate snacks. Crackers, cookies, and other such things are found at all but one of the infusion rooms I have ever been to. In the chemo class, the nurse made sure to point them out to us and told us that patients should eat them since they need to eat as much as they can to keep their weight up.

Betsy would select one and spend the next many hours in that recliner getting her drugs. The infusion started with infusions of various pre-medications. These are drugs to help with side effects. With the easier chemo regimen, she got fewer pre-medications because she did not have such terrible side effects. All of them went through her port.

After the pre-medications, she would get infusions through her port of various drugs that would last anywhere from 1-2 hours. After those, the nurse would come and give her a “push” (basically a shot) of 5-FU and then the nurse would attach a pump of 5-FU to Betsy’s port that Betsy would take home and get infused over the next 46 hours.

All told, we spent many hours in the infusion room. Even if the actual chemo infusion would be two hours, we would probably be there more like three or more likely four or even five. This is because there were other infusions for pre-medications and other drugs. Those added significantly to the total infusion time.

Even more, every time an infusion ended, there would be a wait for the nurse. When the infusion ends, the pump starts beeping to let a nurse know to come change it. A nurse is not always immediately available, though. While a nurse typically comes right away to stop the beeping, it may take some people before the nurse can remove the bag with the finished drug and bring the next drug. So, a wait is typical. Usually, the wait is pretty short, like 5 minutes, but sometimes the wait could be 20, 30, even 45 minutes. With Betsy having multiple drugs to be infused, only some of which could be done concurrently, that wait time could add up. Still, this was a significant improvement over Betsy’s first chemo regimen as this only took most of the day, not the whole day.

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MEDICAL NOTE – WHY YOU SHOULD DO YOUR OWN RESEARCH – UNDERSTANDING MEDICAL RESEARCH PART 2

“Your Google search is not the same as my medical degree.” Anyone every heard that? No one saying they are the same.

That is in large part the point. Your doctor has a set of knowledge. Much of it is helpful, some of it is not, and some of it is just plain wrong. Some, probably many, will argue with the foregoing sentence, particularly the last phrase. So, let me tell you a little story about 2 patients I know.

Both are colon cancer patients with liver mets. One has 2 small ones; the other has a whole bunch. They see different medical oncologists.

The one with 2 small mets has only done chemotherapy because his oncologist told him that was his only option. He recently joined one of my Facebook groups and learned about histotripsy. In fact, he learned he was an ideal candidate for histotripsy according to its treatment requirements.

Histotripsy is a relatively new treatment that destroys liver tumors with sound waves.ⁱⁱⁱ He was upset his oncologist never told him about it. After all, it is non-invasive and highly effective at killing liver tumors, which are the threat to his life.

So, he went to his oncologist and asked about it. His oncologist refused to answer. After much pressing, his oncologist finally got frustrated and, “We don’t do that here.” That was the sum total of the reason why that patient could not get histotripsy according to the oncologist. He has active tumors in his liver but is not actively pursuing histotripsy with another practice.

Now, the other patient is in a totally different boat. He has a lot of liver tumors, and he knew that spells trouble. He did his research immediately and went around to various doctors.

He finally decided on liver resection with hepatic arterial infusion.^iv There was one problem; he had a liver tumor that could not be neither resected nor ablated. He did his research and found out about histotripsy and asked his doctors what they thought about histotripsy. Specifically, whether it would be a good idea to do histotripsy on that unresectable tumor.

They were open to the idea and sent him to an interventional radiologist to look into it. That interventional radiologist performed histotripsy on him. Then the liver surgeon resected his tumor and implanted the hepatic pump. Now, he has no evidence of disease.

These outcomes show you a lot. Specifically, it shows you how doing research can be helpful. The second patient is already NED because he did his research. With luck, the first patient will also get there. Here are a few lessons I take from those two gentlemen:

1. You can more easily become the expert on your cancer than your doctor

As long as I am making incendiary statements, I might as well start with this proposition. Your doctor, regardless of intelligence, skill, experience, practice area, or anything else is not in a position to know your cancer as well as you if you put your mind to it. I suspect a lot of people will argue with that assertion, but they are wrong.

What no one can reasonably argue with, though, is my next assertion. Your doctor does not know everything. More relevantly, your doctor does not know everything that affects you and your cancer.

In my previous article, I said that just typing in “lung cancer” into Pubmed, I got 233,492 free, full text articles to read.^v No one, and I mean no one, is reading all of those articles. That is way too much information.

If you read five articles a day, every day without fail, it would take you almost 13 years to read 10% of those articles. It would take about 128 years at that rate to read all 233,492 articles.

Don’t be deceived. Reading five articles a day every day is an extraordinary amount of work. Imagine, after 13 years, you will have read just a tiny fraction of the what is available in full text, for free just on Pubmed with just one search. That is a lot of modifiers in conditions on that.

No one, and, again, I mean no one, is reading five articles per day every day for 13 years much less 128 years. And this is by no means everything there is out there on lung cancer. In other words, even if you have a doctor that only treats lung cancer and has done it for decades, your doctor still knows only a tiny fraction of the information available out there about lung cancer.

Of course, there is a lot more that doctor needs to know than just lung cancer itself. He needs to know how to treat the side effects from the treatment he prescribes. He needs to know how to diagnose and treat any number of other conditions that might arise, like liver toxicity, sepsis, thrush, and more.

That is a lot of information your doctor needs to know. What is more, your doctor likely has hundreds of patients. It is entirely unreasonable to think your doctor will be an expert on all of your issues.

You, on the other hand, have only one person to worry about. You have the tools to go research your own medical issues. Given your singular focus, it is much easier for you to do it than your doctor.

2. Your doctor is not there to educate you

A lot of people think, “My doctor has a doctorate in this. He is supposed to know all there is to know about my condition and teach what I need to know.” As I pointed out above, your doctor most definitely does NOT know everything about your condition or even a majority of the information about your condition. Your doctor is also not your teacher; your doctor is your salesman.

You might think the purpose of an oncology appointment is to educate the patient and address the patient’s issues. Occasionally, that is true, but that is the exception, not the rule. The real reason for almost all cancer appointments, regardless of whether you are talking about medical oncology, surgery, integrative medicine, or whatever, is to get you that doctor’s treatment.

Betsy’s sample appointment I illustrated above is a case in point. The purpose of that appointment was to get Betsy chemo. It is hard to grasp this, but the key thing the doctor was doing was clicking his mouse. It was not what he had to say to Betsy.

The doctor had two big objectives in almost all of Betsy’s appointments: (1) Verify her labs qualified her for that day’s chemo dose and (2) Check or uncheck all the necessary boxes for her insurance company to approve the chemo. Essentially, once those tasks were accomplished, the appointment was about to wrap up. Realistically, the doctor probably had 17-23 other patients that day he needed to see, emails he needed to address, orders to write, phone calls to make, charts to complete, and other tasks.

There simply is not time in his or any other doctor’s day to educate you. So, even if the doctor knew everything there is to know about your cancer, which is definitively untrue, your doctor does not have time to do that. The entire practice of medicine is not structured to do this. It is structured to sell you a treatment and then move on to the next patient.

If you want to know about your cancer, to find your teacher, find a mirror or enlist the aid of a loved one. There is no one else.

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3. Research is how you find other treatments

Regardless of which country you live in, never forget that your doctor’s job is to sell you specific treatments. The entire way we think of medicine revolves around the treatments your doctor sells.^vi

Just because your doctor is a salesman does not mean your doctor is not trying to help you. I asked AI the following question, “What is the easiest way to be a good salesman?”

Here is what it told me, “Building strong relationships with customers and having a deep understanding of the product you are selling are key to becoming a good salesman.”

That is literally exactly what your doctor is doing. Your doctor is trying to build a relationship with you, a relationship in which you put your trust in your doctor. The doctor then uses that trust to sell you products, products that the doctor has put years into learning.

Realistically, that is more mercenary than most (though not all) doctors feel about things. The truth is, most good salesmen really and truly believe in the products they sell. Doctors are usually no different; they believe in their treatments.

This also means conversely that they do not know about and frequently do not believe in other treatments. This does not mean those treatments are not good for you, though.

Even if your doctor refers you to another doctor for a different type of treatment, frequently your doctor really does not know that much about it or about that medical specialty differently. After all, that is not what your doctor does. So, even if your doctor sends you to a different specialty, that does not mean your doctor is sending you to the best treatment within that specialty.

The solution to this problem is for you to do your own research. Since you know your specific cancer (information you probably mostly got from your doctor), you can look for the treatments that are best for you specifically.

4. Research is how you can check your doctor’s work

Ronald Reagan famously said, “The trouble with our liberal friends is not that they’re ignorant; it’s just that they know so much that isn’t so.” That is true for all of us.

Including doctors.

Never, ever put all your trust in your doctor if you want the best care. There is a simple reason here; your doctor is not always right. Your doctor is a human, and humans are fallible. No matter how confident your doctor is, your doctor is not always right.

I previously introduced you to Rae.^vii Rae’s doctor gave Rae exceptionally common advice regarding Rae’s colon cancer. Unfortunately, much of that doctor’s advice, like most colon cancer oncologists’ advice, was wrong. That is not my opinion; it is a fact as stated by the guidelines that doctor claimed to follow. That wrong advice killed Rae.

I had seen this wrong advice many times before meeting Rae, and I had decided to poll patients who had Rae’s same diagnosis what their doctors told them. A super majority of patients were given the same wrong advice Rae was given. This is despite clear, unequivocal, and simple directions to the contrary in the guidelines all of those doctors claimed to follow.

Let that be your lesson. This is an uncomfortable truth, but many doctors have learned many things that are simply untrue. It is these false teachings to which many hold most firm.

You can research things for yourself and see if your doctor is right. Even if you do not have the confidence to conclude your doctor is wrong, it gives you the opportunity to have an informed discussion with your doctor.

5. Research is how you become a good self-advocate

In the future, I will discuss how you can become a good advocate for yourself or your loved one. The foundation of advocacy, though, is being informed. Knowing what you want and why you want it is the most important part of being an advocate, whether for yourself or others.

This is where research comes in. Research helps guide you in deciding what you want. It also provides the foundation for the argument you make to the provider who can give it to you.

CONCLUSION

You are by no means obligated to do research. In fact, for a lot of patients, there is not a much reason to do a lot of research.

For others, though, research can lead to a life saving change in treatment. That only works, though, if you do the research.

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BETSY IN HER OWN WORDS

When I was a little kid I spent a lot of time playing with boys. From my boy cousins in XXX to the house of boy that lived down the street I often was the only female from the ages of 5-8. Somewhere along the line I learned a song that fit this week’s struggles. My mother used to lament she was raising a bunch of savages...
Note: If potty humor disgusts/offends you just skip the next paragraph...

When you’re slidin’ into first and you feel a little burst... Diarrhea uh-uh diarrhea

When you’re slidin’ into second you feel something let it (?) … Diarrhea uh-uh diarrhea

When you’re slidin’ into third and you feel a little turd; Diarrhea uh-uh diarrhea

When you slide into home and you feel a little foam;...

We thought we were smart and funny when we sang the song. I hope this made you giggle and not gross you out.

Yep so this is supposed to be my good week. Daniel and I have both been plagued by a GI bug. But I think we are on the end of it as I haven’t had my bowels move for twelve hours (though I did sleep for most of that). Though I was extra nauseated Monday and Tuesday before the bottom end symptoms started and was thinking that my good weeks weren’t going to be that good after all. Right now I am hoping that Daniel and I don’t share, because before I knew I was really sick we had family over. Tuesday we did a little impromptu celebrating of my dad’s birthday (He turns 70 this weekend, so be sure to congratulate him on his spring-chicken-like age :) especially since I’ve been feeling a little guilty about not seeing him on his big day, and his children have been negligent in planning a big party for him). My liquid bowels started when we met for lunch with my dad and older brother. We then had supper with my dad and little brother. Yesterday I laid on the couch taking it easy and watching movies in between frequenting the bathroom. Though I am proud to say I was able to keep myself sufficiently hydrated.

Being on chemo every time I get a normal sickness (one that puts you on the couch watching movies for a day or two and then you get over it) I wonder if/when I’ll get landed in the hospital because my body can’t handle the sufficient onslaught. We had a Doctor’s appointment Tuesday morning for my sore bottom and I got a fresh glance at my poor body. It has basically been facing onslaught after onslaught since last November. From chemo to 2 surgeries to back on chemo again. My body basically has had any time to be normal. No wonder I feel cruddy and icky and little things set me back. It was a good shot of perspective and expectation setting. Like there are valid reasons why I’m weaker than I used to be. Which is helpful. For my grown-up life I’ve done my best to exercise and eat my veggies and I get rewarded with cancer??? and that is a frustrating thought. But if you say I did all that and it has allowed me to withstand all these onslaughts and still do fairly well and that is a hopeful thought.

I have been promising to share my ‘bucket list.’ So I thought I would write down a few things that are on it. But I believe in finding the things you can do and cross them off and adding as God gives you more time, so it will be an evolving work in progress.

Buy a house and settle in

Go on the European River Cruise Daniel and I had planned for April buy had to cancel because I got cancer.

Go on a vacation with my dad and brothers and their families for a week, something memorable and epic and relaxing. (The short list is Hawaii, a Cruise, or Florida Keys).

Get together with my coworkers from XXX.

Write letters to my loved ones.

Make it many birthdays and Christmases.

Finding something beautiful each day.

These are just some of the items.

Thank-you for the prayers and support,

Much love,

Betsy

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i A port, more formally known as a port-a-cath, is a small device implanted, typically in the chest, and connected to a vein. It makes blood draws and infusions safer and easier (assuming the person accessing the port knows how to do it, which it turns out is not always a good assumption).

ii https://www.verywellmind.com/multitasking-2795003

iii https://my.clevelandclinic.org/health/procedures/histotripsy

iv See https://open.substack.com/pub/concerningcancer/p/one-plan-to-rule-them-all?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

v https://concerningcancer.substack.com/p/the-chemo-schedule?r=xwnqz

vi https://open.substack.com/pub/concerningcancer/p/what-does-that-guy-do?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

vii https://open.substack.com/pub/concerningcancer/p/change-of-plans?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

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Now that Betsy was back on chemo, life returned to a familiar rhythm. We went to the chemo clinic every other Tuesday for Betsy to get poisoned. She left that afternoon, felt bad for a few days, and then she started to recover.

Our days and weeks had a similar schedule. It looked something like this:

Chemo Day – Tuesday:

9:00 Arrive at the chemo clinic

9:05 Weigh Betsy

9:06 Access port and blood draw

9:40 Appointment with oncologistⁱ

10:00 Enter infusion room

10:05 Begin pre-medications (e.g. Kytril, Atropine, Dexomethasone)

10:30 Begin Leucovorin infusion

12:45 Begin Irinotecan infusion

2:30 Avastin infusion

3:10 5-FU bolus infusion

3:20 Attach take-home 5-FU pump

3:25 Leave the clinic

Chemo Day +1 Wednesday

At home – Betsy feels bad

Chemo Day +2 Thursday

1:00 - Return to clinic for pump disconnect. Possibly get IV fluids


That was it for treatment. It was quite a change from her first four months, which were on the much tougher regimen of FOLFOXIRI. Here was what her schedule looked like

Chemo Day – Tuesday

8:00 Arrive at the chemo clinic

8:05 Weigh Betsy

8:06 Access port and blood draw

8:30 Appointment with oncologist

8:55 Enter infusion room

9:05 Start pre-medications

10:15 Start Leucovorin plus Oxaliplatin infusion

12:45 Start Irinotecan infusion

2:30 Start Avastin infusion

3:15 Attach 5-FU pump

3:30 Leave the clinic

(Note this was really much more of an ideal situation. I do not think it ever happened this quickly. I do not believe we ever left before 4:00 and sometimes left well after 5:00)

Chemo Day +1 Wednesday

At home, Betsy feels terrible

Chemo Day +2 Thursday

1:30 Return to clinic for pump disconnect and IV fluid infusion

Chemo Day +3 Friday

1:30 Return to clinic for Neulasta injection and IV fluid infusion

Chemo Day +4 and +5 Saturday and Sunday

At home, Betsy feel terrible but starts recovering Sunday afternoon

Chemo Day +6 Monday

Betsy gets an IV fluid infusion sometime during the day

Chemo Day +8 Wednesday

Betsy gets an IV fluid infusion sometime during the day

Chemo Day +10 Friday

Betsy gets an IV fluid infusion sometime during the day

So, with this new regimen, we had a lot more free time if for no other reason than because we were not spending so much time in the chemo clinic. What is more Betsy felt better. Unlike her first few months, this seemed like something Betsy could actually have a life with. It was not ideal, but, as we had learned, things could certainly be worse.

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MEDICAL NOTE – UNDERSTANDING MEDICAL RESEARCH PART 1

As a patient, you may think it is not your job to understand medical research. That is your doctor’s job, right? In fact, you may have heard something like, “Your Google search is not the same as my medical degree.”

To be sure, you are not REQUIRED to know anything about medical research. However, if you want to be an informed patient, if you want to actually make informed decisions about your care, if you want to effectively advocate for yourself, if you want to get the best care available, then you need to understand medical research.

As a result, I will write a number of posts to help you understand medical research. Oxen will be gored in this.

I have previously written about how to find and evaluate medical evidence. I suggest you read those posts. Here are links:

and

In this series, I intend to expand on those articles. This article will be an overview of some key concepts about medical research.

What is medical research? You might think it is just about clinical trials. In that thinking, it is just about doctors and other researchers conducting randomized controlled trials. To be sure, that is part of it, but that is only part.

Research is actually about much more than just randomized controlled trials. In fact, those trials are only a small part of medical research.

1. Publication rules all

The biggest and most important part of medical research is what gets published. This is such a major issue, and most people do not grasp the significance of it. Whatever happens in the randomized controlled trial, whatever happens in a lab, whatever happens ANYWHERE is basically irrelevant unless and until it is published.

I say that because, unless you know about it, no discovery is useful to you. The way we find out about discoveries is through publication. Publishing findings is how the world learns new things.

I will not go too far in this essay about publication because I will write more about publication in the future. For now, though, understand that the most important thing about medical research is not what breakthroughs or paradigm shifting discoveries are made but rather what gets published.

2. Medical research is a business

In one of my first essays, I wrote, “Every bit of research I ever read is always, without exception, affected by the business side of things.”ⁱⁱ That was, is, and will always be true.

Medical research is NOT a purely scientific endeavor. It is not just somebody interested in expanding humanity’s knowledge solely for the sake of knowing it.

Instead, medical research generally has two goals: (1) address a specific malady and (2) make money. The first goal is actually optional. The second goal is not optional.

3. It is at least as important what does not get published as what does get published

If a tree falls in a forest and nothing hears it, does it make a sound? You may have heard that question posed in a physics class. That answer, of course, is, “No.” It makes sound waves, but it does not make sound. Sound only occurs when a sound wave is perceived by something.

That does not mean the tree did not fall though. It also does not mean it was imperceptible. In fact, it does not mean that the tree’s toppling does not affect you. All the lack of sound means is that you did not perceive the falling.

It is the same way with medical research. Just because something is not published does not mean it is not true. Likewise, it does not mean it does not affect you.

Just because something is not published does not mean it is not true. Nor does it mean it does not affect you. It just means it is not published.

4. Facts matter

For all of what seems like bellyaching above, none of that should detract from what matters here. While medical research has limitations, the fact is this is the best system we have ever had for finding and disseminating facts. As a patient, what you want is facts.

Hype, unfounded opinions, and lies are deadly. You should base your decisions on facts. Doing your research is how you determine what the facts are.

5. We have more and better information available now than ever before

Everything I wrote above would be pointless if this were not also true – the general public has more and better information available to us than at any time in history. It is no longer the case that your doctors have all the information, and you have no ability to see the actual data for yourself. Among other places, right now, you can go to

https://pubmed.ncbi.nlm.nih.gov

and read millions of pieces of information about all manner of medical issues.

To give you an idea how big this is, I did a terrible search on Pubmed and just searched for “lung cancer.” Without any restrictions on what it shows me, I got 504,690 results. If I restrict it to just being able to read the whole text of whatever paper we are talking about and do so for free, I get 233,492 results.

Is anyone actually going to read 233,492 articles about lung cancer generally? No, but the point is that you have more information available to you than you can possibly read.

Here is something else, there is actually a great deal more about lung cancer on Pubmed than what I just told you about. You just need to change your search a little bit, and you will get different results. Pubmed is one of the world’s major repositories of medical information, but it is not even the only one.

For example, I have previously recommended looking at the patient guide to the guidelines for your cancer as published by the National Comprehensive Cancer Network (NCCN).ⁱⁱⁱ The NCCN publishes much more than just patient guides to the guidelines. You simply need to go to its website, www.nccn.org, to see what it has for itself.

Or you can go to the Independent Medical Alliance at www.imahealth.org. They approach things from a very different point of view than the NCCN, and they also publish loads of information.

The purpose of this is to show you how much information is out there. If you do some digging, you can easily make yourself highly educated.

The quantity of information should also tell you that it is absurd to think your doctor knows everything there is to know about your cancer or every treatment for your cancer. This is particularly the case because you are not your doctor’s only patient.

You have the information at your fingertips. You have the tools to go out and make yourself THE expert on your cancer. Do not squander that.

CONCLUSION

Medical research clearly has limitations and imperfections. It also has many, many benefits. If you want to get the best care you can, you should understand those limitations and imperfections while working to gather the facts. The facts are there just waiting for you to educate yourself.

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BETSY IN HER OWN WORDS

I had the opportunity to visit with a good friend last weekend. She was in the process of packing and leaving the next day with an eventual destination of working in a food distribution program in a refugee camp in Africa. I think she wouldn’t disagree with me, but her getting there all started with a broken foot.

6-8 years ago doing the terribly normal act of running bases in a kickball game she heard a “pop” and went down. Thus began a 6-9 month period of finding out it was a rather severe tendon injury and to decrease the likelihood of arthritis later she needed a surgery to put a pin in to help it heal right and another to remove the pin. She spent months on crutches. In the ice of winter. She was a floor nurse. When she was finally cleared to go back to work she couldn’t keep up with being on her feet all day so she said goodbye to working with sick kids and took a less physical job as a phone triage nurse, not her first choice. But then it led to her next position as an Asthma Coordinator at the clinic she triaged out of. She loved this job because she got to work with kids again. But God wouldn’t let her rest here. After a little while she felt called and found a position with a relief organization helping to run a local clinic in Haiti for almost 2 years. Then she went to Africa to run a food program and now after a few months in the state she is returning again. Had she not broken her foot she would not have felt the need to leave floor nursing and develop the people managing skills needed for her work in Haiti and Africa.

We had a deep discussion once shortly after she had started working with asthma kids again. We had been talking about giving thanks. 1 Thessalonians 5: 16-18 says, “Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.” We were talking do we truly give thanks for all things. What about the hard things? And she made the incredible statement that her broken foot was one of the hardest things she had to go through and yet she was thankful for it, because it had brought a lot of good to her life. Both with the time off from work to make better friendships to the eventual career change because of it. I admired that in her.

AT the time I thought about what was hardest in my life, which was losing my mom and wondered how I would ever be able to give thanks for that. And it seemed cruel that God would ask that. Probably about a year after this conversation I became thankful for it. Now this doesn’t mean I wish she still wasn’t here, that I don’t miss her. But this was given to us by a good God. And I realized that I would be a completely different person if my mother hadn’t become sick when I was so young. That Betsy would have been different. And I liked who I was. And I liked the maturity it brought to my brothers and the closeness it also brought to us. So I could be thankful for it.

Next God challenged me to be thankful in my singleness, because it is quite tough to be single in your 30s watching other people getting married. I eventually got to the point where I saw God using my singleness as refining me into a better person than if I was married. Then I had much joy when I met Daniel and we were so alike and complimented each other so well.

Now I’m working on this thing called cancer. This has upended and stole much of my life. Because I have seen how God works through the tough stuff, I can trust that he’s working for good. Though I don’t like it very much.

Yesterday was a chemo day. With one less medication that I am receiving, I get out of the chemo clinic earlier, around 2 instead of 4. So then I get to go home and feel crummy on my couch. My stomach is in knots, my head feels fuzzy, an all over bleh. But even today I feel a little better. And tomorrow there will be improvement on that and hopefully next week I may get a day or two in where I don’t feel sick. But we are two rounds of chemo down; 6 to go.

Last week I had felt pretty well. Daniel and I were able to take an overnight away and make some lovely memories. I also saw many friends. I am doing my best to make the most of my good days.

Thank-you for all of your care and compassion and prayers.

Love, Betsy

i Some may find this timing between the blood draw and the appointment implausible. With Betsy’s first clinic, this is fairly accurate. The timing could vary, it could be shorter or longer than I stated, but this is accurate with that clinic. It was not true for other clinics she would visit. So, I understand the skepticism.

ii https://open.substack.com/pub/concerningcancer/p/betsy-becomes-a-customer?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iii https://open.substack.com/pub/concerningcancer/p/one-plan-to-rule-them-all?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

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I recently did an internet search of the question, “What causes cancer.” The answer AI spit out was, “Cancer is caused by genetic changes that lead to uncontrolled cell growth and tumor formation. These changes can result from inherited genetic mutations, environmental factors, lifestyle choices, and exposure to certain chemicals or infections.” That seems definitive. Should it be?

To be sure, the dominant theory of cancer right now is that it is a genetic disease. If you go to basically any major hospital’s website, it will tell you that cancer is genetic. For example, when I asked the question above, the first site listed was Mayo Clinic. It says, “Cancer is caused by changes (mutations) to the DNA within cells.”ⁱ

In general, I do not think theoretical discussions about the causes of cancer are terribly helpful to patients. Every patient has a very real problem, and academic discussions are generally a distraction from tackling that problem. However, there is a big exception to that rule in that many experimental and complimentary treatments are effective if and only if a particular theory of the cause of cancer is correct.

If you cannot tell, despite the confident pronouncements of the powers that be that cancer is a genetic disease, I am unconvinced. That is the case because tens if not hundreds of billions of dollars have been spent pursuing treatments based on the genetic theory with terribly disappointing results. To be sure, there have been some advancements, but they have been rather disappointing in my view.

I would also be remiss if I did not point out that there is clearly something going on with the genes of cancer patients. Honestly, we as a species are really only scratching the surface of understanding the human genome; so, we should practice some humility. What we see, though, is the genes in cancer cells showing changes, often quick changes.

You can see this when genetic testing is needed for a treatment, as is common for many trials. Often, genetic testing needs to be repeated over time because the genes of the cancer cells change. In other words, the genetic profile of the tumor of the same person may be very different even just a year apart.

This is obvious evidence that something is going on with the genes. The question that is unanswered is whether the genetic mutation is a chicken or an egg. Put another way, did the genetic change cause the cancer or did the cancer cause the change?

That is a huge, unanswered question. Some think they know the answer, but they are wrong. No one has been able to give a satisfactory answer to that question. If the genetic change did not cause the cancer but vice versa, then cancer is not a genetic disease.

If it is not a genetic disease, then what else could cancer be? The short answer, the correct answer, is that no one knows. Yes, I am sure your doctor confidently said it is genetic, but the reality is there are other theories of cancer that have at least some level of evidence supporting them. Here are a few of the others:

1. Cancer is a metabolic disease. A lot of the people talking about complimentary or alternative treatments will tell you cancer is a metabolic disease. This is based on the work of Otto Warburg, who won a Nobel prize in 1931 on the metabolism of cancer cells.ⁱⁱ Specifically, Warburg found that “cancer cells tend to rely on fermenting glucose,”ⁱⁱⁱ in a process called the Warburg Effect. This led him to conclude that cancer is caused by a problem with cellular metabolism.^iv Today, advocates of his theory frequently say this problem with cellular metabolism is what causes the genetic change.

Warburg’s theory has largely fallen by the wayside in mainstream Western medicine today. However, integrative and functional practitioners typically embrace it and suggest any number of treatments based on that theory. Some of the treatments include the ketogenic diet, Metformin, and berberine.

To be blunt, Warburg clearly has some things right. MOST (but not all) cancer cells show the metabolism he found. This is why PET scans are used. Furthermore, a lot of the treatments that target the metabolism show some benefit.

Notice I said, “Some,” level of benefit. All of those and more are on my list of complimentary treatments, but they are compliments, not the main treatment. This is because they are nowhere near effective enough to be a primary treatment on their own. If Warburg’s theory were entirely correct, you would expect to see greater efficacy from those treatments.

2. Cancer is a bacterial disease. It is commonly stated that cancer is not communicable. Yet it is estimated that 10-20% of cancers are caused by certain strains of bacteria.^v

That would be an interesting factoid and nothing more but for the fact that some antibiotics seem to help treat cancer.^vi These benefits do not seem contained to just cancers that are sometimes agreed to be caused by bacteria.

So, what gives? Beats me, but here is a hypothesis. Maybe there is more of a bacterial component than we realize.

I expect some to dispute this and reasonably so. They will point out that we have an idea of the mechanism of action, and it is independent of it being a bacteria. That is PROBABLY true, but we do not actually know. What we know is that antibiotics seem to have a benefit, and that lends itself to the idea that there is a greater bacterial element to cancer than we realize, although it does not prove it.

Unfortunately, like the metabolic therapies, antibiotics and other treatments that help with bacterial infections are not cures for cancer. They are not close to being cures. They may help somewhat, but they are not cures by themselves.

3. Cancer is a viral disease. You may have heard of HPV, human papillomavirus, and heard that it causes cancer. Proponents of the viral theory claim this is true, but even those proponents admit, “HPV infections are very common, cancer caused by HPV is not.”^vii Other viruses are associated with cancer, too, such as Epstein-Barr.^viii

However, associating is not necessarily causation particularly when it is the exception rather than the rule that those with the virus get cancer. To be sure, it could be causation, but that is not necessarily so. Frankly, we do not know enough to be very confident cancer is viral. Maybe it is, but I doubt it.

Similar to antibiotics, some antiviral drugs are showing the potential to help with cancer.^ix So far, to my knowledge, there is essentially no human data; everything is based on lab tests and mouse studies. If you read my substack, you know that is much weaker evidence than information gathered by testing drugs on humans.^x This does not mean such data does not exist or that it will not be produced, but I have not seen it. Regardless, there is SOME evidence anti-viral drugs help treat cancer; the research is definitely lacking, though.

Something else I should mention is that a growing trend in cancer research is to take viruses and turn them into cancer fighters. To my knowledge, no such treatment has been approved by the FDA for use in cancer, but it is absolutely a thing being studied. Typically, these are called oncolytic viruses and are are modified to help your immune system kill your cancer.^xi This is a pretty hot topic in cancer research and something to keep an eye on.

Is there a connection between the reason why oncolytic viruses (might) work and the cause of cancer? Honestly, I doubt it. I could always be wrong, though.

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4. Cancer is a parasitic disease. This is one that is really growing in popularity among the alternative (and to a lesser extent the complimentary) therapy crowd. This does not have as much evidence as I think there should be, but I can believe there is at least some legitimacy here.

There are a lot of similarities between parasites and cancer, and some parasites are specifically linked to cancer.^xii In fact, a little over ten years ago, a person was discovered to have gotten cancer from a parasite.^xiii

It is probably no coincidence that some drugs that kill parasites also seem to help with cancer. For example, hydroxychloroquine and chloroquine were created to treat malaria, which is caused by a parasite, and they have known anti-cancer properties.^xiv

I do not believe this theory is rising in popularity because of the actual causation research. Instead, I think this theory is becoming more popular because of the growing popularity of the anti-parasitic drugs Ivermectin, Fenbendazole, and Mebendazole.

To be blunt, these drugs, particularly Ivermectin and Fenbendazole seem to be exploding in popularity. To be sure, there is some reason to believe they might help.^xv (Note Fenbendazole is basically the veterinary form of the drug Mebendazole.) However, the empirical evidence is not as strong as some think.

This is not to say these drugs do not work. Maybe they are great, but there is not much published research on them. So, I think it irresponsible to say these are the greatest cancer medicines out there, as some people seem to say. Like I said, though, there is published data showing they may be helpful, and I for one would really like to see more data.

5. Cancer is a fungal disease. There is a small but vocal group adamantly claiming cancer is actually caused by fungus. Candidly, I could not find any paper, study, or other scholarly work I thought you should read in support of this theory. To be blunt, I do not see much if any validity to the claim that cancer is a fungal disease.

This does not mean there are not some weird anomalies with fungus in cancer patients. There are some very peculiar things about fungus in cancer.^xvi I do not think these show causation, but they are weird.

Something that is very peculiar is that certain fungi seem to be very helpful in treating cancer. In a previous post, one of the things I said I would do differently if I could was give my late wife turkey tail mushrooms.^xvii Specifically, I should have given her PSK and PSP.

PSK and PSP are compounds derived from certain mushrooms that have solid (for complimentary treatments) data they help with cancer.^xviii Of course, this seems to be the opposite of cancer being a fungal disease, but MAYBE some fungi help treat other fungi. I am not at all sold that is true, but maybe I am wrong.

6. Cancer is an environmental disease. As I said above, the dominant theory is that cancer is a genetic disease. By far the second most common theory is that cancer is an environmental disease.^xix An environmental disease is one caused by things outside your body that get in, such as contaminants in your food or drink, pollutants in the air, and more.

This leads to the idea that what you eat and drink in particular affect your risk to get cancer. Most recently in the cross hairs of those subscribing to this theory are processed meats, which this theory says increase your risk for cancer.^xx

To be blunt, this group has some pretty good but not conclusive evidence. For example, asbestos inhalation is strongly associated with cancer. Multiple groups identify it as a “known” carcinogen.^xxi

Here is where I think this theory is weak. If this theory were entirely accurate, then everyone exposed to something “known” to cause cancer would get cancer. Yet that does not happen. Why not? Candidly, no one knows.

To be fair, most of those on the cancer as an environmental disease bandwagon usually are more accurately described as mostly environmental with a little bit of genetic causation. That seems more like trying to waffle their way out of a problem, though. They cannot explain why they get inconsistent results, so the proponents of this theory chalk up the inconsistencies to unexplained and unidentified genetic conditions. Maybe they are right, but they cannot prove it.

The bottom line is that no one can prove causation. They all point to correlations and claim causation. To be sure, just like all squares are rectangles but not all rectangles are squares, whenever you have causation you will have a correlations, but just because you have a correlation does not mean you have causation. In other words, no one knows what causes cancer.

My personal, loosely held theory is that cancer is multiple different causes with common symptoms. The big symptom being, of course, tumors or otherwise cancerous cells. I think this best explains what we see in practice.

For one patient, a trial drug focusing on a particular genetic mutation might prove curative. To most of the other patients in that cohort, all of whom have the same mutation, the drug does nothing. Why? If the genetic mutation is the cause, it should work for all of them.

Likewise, using Metformin, the keto diet, and other metabolic interventions combined with standard treatment may prove curative for one person, may not cure another but give many more years than normal, while another patient dies in just a few months. If the metabolic theory were entirely correct, those widely disparate results should not happen.

We can go on down the list of treatments based on the different theories. They will work for some but not for others, and we have no idea why those differences exist. Patients who seem to be identically situated will have totally different responses to the same treatments, and no one knows why that is.

Am I right cancer is actually multiple diseases? Maybe not. I freely concede I could be wrong. That is why I loosely hold my opinion; I am absolutely willing to change my mind if someone can produce good evidence. Until someone can explain the discrepancies, though, I think my position best explains the results we see.

CONCLUSION

Theories about the causes of cancer are all well and good, but why should you care? In many ways, you, the patient or caregiver, do not care. The fact is, the patient has cancer, and you need to deal with it. Academic discussions do not keep the patient alive.

However, the issue of causation matters for a few reasons:

1. Some patients and caregivers want to blame someone. I get it. A calamity has befallen you, and you want to blame someone (maybe even yourself). Based on what we know right now, that is unfair because no one knows what caused the cancer. So, you have to give up on the recriminations.

2. It gives you an idea if a proposed treatment might work. This is particularly true of treatments that are not standard, whether you are talking about a trial, a complimentary therapy, or an alternative treatment.

People in the cancer world often talk about finding a “cure” for cancer. I have previously written that I believe drug companies would create a cure if they could because it would make them so much money.^xxii I believe they have not made a cure is because they do not know how to.

The big reason why they do not know how to make a cure is because they do not know what causes cancer. I think a cure is impossible until the cause is definitively known.

A similar idea holds true for you in deciding which treatments you want to do. While I have long advocated patients do standard and complimentary treatments in an attempt to attack their cancer from multiple angles,^xxiii you can never do every valid treatment out there. There are way too many options. You will run out of time, money, and mental capacity to do everything. So, you need to prioritize.

In making your priorities, it may be that you will need to do something that has less evidence than you would hope for. That includes basically every complimentary treatment, alternative therapy, and trial.

One of the things you should consider is if the treatment is plausible. One big element in plausibility, is whether the treatment’s theoretical approach to the cause of the cancer is solid. Is it attacking your cancer from an avenue that makes sense?

If the treatment is based on a ludicrous theory, for example by balancing the humors (to borrow from medieval medicine), it is exceptionally unlikely to work. However, if the treatment is based on a theory that has significant legitimate support, for example it attacks the cancer’s ability to get energy based on the known metabolism of your cancer, it is much more likely to help you. (Note, while some treatments are premised on a particular cause of cancer, other treatments are not.)

The cause(s) of cancer is tricky. No one really knows, but having some understanding of the possible cause(s) may help you find treatment(s) that can help you.

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i https://www.mayoclinic.org/diseases-conditions/cancer/symptoms-causes/syc-20370588

ii https://www.nobelprize.org/prizes/medicine/1931/warburg/biographical/

iii https://en.as.com/latest_news/otto-warburg-nobel-prize-winner-in-medicine-sugar-is-the-main-fuel-for-diseased-cells-f202601-n/

iv https://link.springer.com/article/10.1007/s10863-025-10059-w

v https://asm.org/articles/2023/august/cancer-microbiology-connecting-the-dots

vi https://www.sciencedirect.com/science/article/abs/pii/S0014299923004612

vii https://www.cancer.org/cancer/risk-prevention/infections/infections-that-can-lead-to-cancer/viruses.html

viii Id.

ix https://med.stanford.edu/news/all-news/2020/01/antiviral-treatments-lead-researchers-to-develop-possible-cancer.html

x https://open.substack.com/pub/concerningcancer/p/wheres-the-evidence?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

xi https://www.nature.com/articles/s41392-025-02343-3

xii https://oncobites.blog/2024/03/13/a-parasite-cancer-relationship/

xiii https://archive.cdc.gov/www_cdc_gov/media/releases/2015/p1104-parasite-tumors.html

xiv https://www.tandfonline.com/doi/full/10.1080/15384101.2024.2402191#d1e253

xv https://zenodo.org/records/19455636?ref=focalpoints&sub_id=undefined

xvi https://www.frontiersin.org/journals/cellular-and-infection-microbiology/articles/10.3389/fcimb.2025.1596688/full

xvii https://open.substack.com/pub/concerningcancer/p/new-goals?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

xviii See id.

xix https://onlinelibrary.wiley.com/doi/full/10.1002/cdt3.148

xx https://www.mdanderson.org/cancerwise/what-to-know-about-foods-with-nitrates-and-nitrites.h00-159694389.html

xxi https://www.cancer.org/cancer/risk-prevention/understanding-cancer-risk/known-and-probable-human-carcinogens.html

xxii https://open.substack.com/pub/concerningcancer/p/medical-note-there-is-no-money-in?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

xxiii https://concerningcancer.substack.com/p/catching-the-cancer-criminal?r=xwnqz

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The other day, someone who has been off treatment for years asked if there is anything to be done to help with her ongoing neuropathy. She has tried acupuncture and been disappointed with the results. While acupuncture has consistently shown some benefit, the amount it shows is not that much, and most patients I know are disappointed with it.

Truthfully, preventing it in the first place is much more effective than treating it after neuropathy has set in. I previously wrote an article focused primarily on preventing neuropathy.ⁱ

Many people, though, do not know how to prevent it or do no realize the importance of preventing it until it is too late. They are then left with trying to treat their neuropathy after chemo ends. To be blunt, the evidence for all of these treatments is weaker than one would like. Some are dramatically weaker than one would like. However, desperate times call for desperate measures.

So, when I say these things, understand that there is, at best, uncertainty here. In my mind, these are worth trying because that is how I weigh the evidence for and against them,ⁱⁱ assuming one has completed cancer treatment.

With those caveats, here are some thing things that may help:

1. Chelation. This takes the heavy metals out of your body; so I expect this may be better for platinum-based chemotherapies than others. I have personally seen this work extremely well, but the empirical data is very limited. While I have seen this significantly improve neuropathy, I have not seen it cure it. What is more, chelation can be expensive and carries risks. So, this is not the top choice for some people.

2. Manual lymph drainage (MLD). This drains your lymphatic fluid. Note, if you still have cancer, there is a theoretical risk this may spread your cancer. To my knowledge, this is still theoretical, not proven. MLD is a good way to treat the neuropathy, though.

If you are NED, that theoretical risk goes away. MLD has many other benefits and is remarkably safe. So, I am a big fan of MLD.

3. Scrambler. This is an electrical therapy that has shown real promise in a number of trials.ⁱⁱⁱ A major downside is that you may have a hard time finding it.^iv

There are other electrical treatments, specifically Neubie Newfit and Sanexas, that practitioners have told me work. I like the idea of them and think it makes sense they would work. However, I have found no legitimate data they work. I have never found a patient who has told me the Newfit helped. I have heard from one patient who said the Sanexas helped, but I have heard from several that it did not help. So, I am mentioning them in case you want to pursue them, but I remain leery of them.

4. Cymbalta. This is a prescription medication and has side effects that can be of concern. However, it has consistently shown it works for at least some people.^v Gabapentin and Lyrica are more commonly prescribed, but they rarely work.

This may be the easiest treatment for you to access because you can ask your doctor for it. You will likely need to advocate for this one over gabapentin or Lyrica because most doctors incorrectly default to those, but you can likely get this if you show the doctor the studies supporting it.

5. Sauna. This is weird, but there is some implication that sauna may help. Some evidence says it is best if it is very hot, like 200 degrees Fahrenheit. I do not know if that is correct, though.

The data on this is really not great. I am basing this on anecdotal data from several patients.^vi This effect may be enhanced with combining sauna with a cold plunge.^vii

6. Nerve decompression surgery. This is new to me, but there is a group of surgeons claiming their surgery helps with neuropathy. They have published some very weak human data. Because this is surgery, I am very leery of it, but it may be something to consider, particularly if you are truly desperate.^viii

7. CBD. I am not a big fan of marijuana, but CBD is a mild painkiller that works on a different pathway that something like an opiate. Where opiates typically fail to help with chemo-induced neuropathy, CBD usually offers some pain relief.^ix

CONCLUSION

Realistically, none of these are terribly well supported. This is by no means an exhaustive list of things that may help. You should feel free to search for your own treatments^x

The truth is that chemo-induced peripheral neuropathy is not well understood nor is it well researched. I find that puzzling because it would seem that his is an untapped market with significant potential for economic gain for the major drug and device companies.^xi The fact remains, though, that there is shockingly little research into this. So, if you want to treat your neuropathy, you may need to get creative, do some research, and take some risks.

When you are in agony from chemo-induced neuropathy, though, you may be desperate to try something. Maybe one of these can help.

i https://open.substack.com/pub/concerningcancer/p/betsy-had-a-stroke?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ii https://open.substack.com/pub/concerningcancer/p/weighing-the-evidence?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iii https://ascopubs.org/doi/10.1200/JCO.2026.44.16_suppl.e24147

iv https://neuropathyresource.com/scrambler-therapy-neuropathy/

v https://www.ons.org/clinical-tools/symptom-management-resources/peripheral-neuropathy/duloxetine

vi I have previously written you should very much prefer empirical evidence over anecdotal evidence. https://open.substack.com/pub/concerningcancer/p/wheres-the-evidence?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web I am flipping that in this case because there is little evidence for anything to treat neuropathy, and those treatments that have empirical evidence, e.g. Cymbalta, often leave patients wanting more treatment options. Part of my reasoning is that sauna is relatively safe for most people compared to other options.

vii https://nerverenew.com/blogs/nerve/the-surprising-connection-between-sauna-therapy-and-nerve-health

viii https://www.advancedreconstruction.com/hubfs/IFAR/pdf/neuropathy_chapter.pdf

ix https://www.ccjm.org/content/85/12/943

x https://open.substack.com/pub/concerningcancer/p/wheres-the-evidence?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

xi I know it may seem jarring to talk about your health as if it is a profit center, but the fact is that your health IS something many people use to make money. See https://open.substack.com/pub/concerningcancer/p/betsy-becomes-a-customer?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

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After getting the news that Betsy’s cancer was now deemed terminal, we had a little “pity party” as Betsy liked to call it. Then, it was back in the chemo saddle.

The months on FOLFOXIRI had been terribly hard on her. Betsy had lost her hair, she had lost the ability to think, and she had lost the capacity to really even move many days. Having Betsy off chemo had been wonderful as she had returned to her normal self. So, we were concerned about starting chemo again that she would go back to just being a shell of a human.

She was going to do a different regimen, though. The new regimen is called FOLFIRI. It is no coincidence the names of the chemo regimens are similar.

FOLFOXIRI has three chemo agents: flourouracil (aka 5-FU), Oxaliplatin, and Irinotecan. FOLFIRI has two chemotherapies: flourouracil and Irinotecan. To both of those regimens is added Leucovorin, which is a synthetic Vitamin B9. In the future, I will write a post about Leucovorin and the implications of its use. For now, I will just say that Leucovorin does not actually fight cancer at all, but it helps the 5-FU fight cancer.

To both of those regimens she also added Avastin. This is a targeted therapy she had previously been forced to discontinue because it gave her an anal fissure, which was exceptionally painful.ⁱ We decided to give it another try because it was not chemo and worked on a completely different pathway, which should slow the cancer over and above what the chemo did.

We pretty quickly learned that adding Oxaliplatin to FOLFIRI to make FOLFOXIRI did not simply add side effects. It multiplied side effects.

While on FOLFOXIRI, the first five days following the infusion were like nothing else. Betsy rarely (ever?) walked more than 100 steps on those days. She just sat on the couch staring blankly at the TV or out the window if she was not napping. She frequently needed help getting to and from the bathroom, and I typically had to bring her food and water because she usually lacked the energy to go to the table.

So, the idea of leaving the house or having a visitor was ludicrous. The only excursions were to the chemo clinic to get treatments.

Going to a less aggressive regimen, albeit still an aggressive chemo regimen, was kind of a revelation. When the Irinotecan infusion ended the first time, Betsy said, “I did not like that one.” Otherwise, though, it was not that bad.

With FOLFOXIRI, Betsy had walked into the chemo clinic but had shambled out. I typically had to pull the car up to the door to reduce the steps she had to take and hope the 10 minute drive home would not make her vomit. With FOLFIRI, she walked in and out, and I never even thought about stopping the car for her throw up out the window.

In the days following her first chemo infusion, we either went somewhere or had a visitor over. Sure, Betsy was tired and not feeling great, but she could walk, she could think, and she was not throwing up over and over again. So, that was a win.

When Betsy had her colon resection, I thought she had handled it more easily because she had done her liver resection first. The liver resection was MUCH harder than the colon resection. Having the perspective of the liver resection made the colon resection easier.

I think the same thing happened with the change in chemo regimens. Her experience with FOLFOXIRI made FOLFIRI seem like a comparative breeze.

This is not to say FOLFIRI had no side effects. Far from it. She was still fatigued and had to start napping again. Betsy was still nauseated. In general, she felt “yucky.”

Still, the fatigue was dramatically less. The nausea was dramatically less. There was no cold sensitivity or neuropathy.

One thing people do not usually talk about with chemo is the change in taste. For a lot of people, many things take on a weird taste, often described as metallic. Betsy still got that. Oddly, that bugged her more than before because she was less nauseated now and thus much more able to and interested in eating.

The other weird difference was Betsy was suddenly afflicted with sleeplessness. With FOLFOXIRI, Betsy was so tired she would easily sleep 16 hours a day or more. Sleeplessness was not in the vocabulary.

With FOLFIRI, she was fatigued and napped for several hours per day. Yet, she sometimes had trouble sleeping at night. I think this was a mix of feeling nauseated, worry over her health, grief at the loss of her dreams, and Dexamethasone, which is notorious for causing people to have trouble sleeping.

All in all, though, if I could have this Betsy for many years to come, even with her limitations, I was happy to have it.

MEDICAL NOTE – IT IS NOT CURE OR BUST

A lot of people think the goal for cancer is to cure it. This applies to patients, doctors, and everyone else. All the time, we hear about a cure, and we start to think that should be everyone’s goal. The reality is that a cure is simply not possible some times.

A lot of people think that means the only other option is death in short order. So, they might as well throw in the towel.

A doctor might say you are “terminal.” I think that word is misleading and that this is a false dichotomy.

Normally, when someone says a person is “terminal,” there is an element of immediacy to the word. By immediacy, I mean something like six months. It could be three months or maybe a year, but most people think of some kind of immediacy to it. In fact, when legislatures typically write something in law about a “terminal” patient, they usually define as six months to live or less.

In the cancer world, plenty of doctors are not using that word to be mean immediacy as it is not uncommon for even stage four “terminal” patients to live years with the disease. Yet, the word “terminal” nearly always means giving up in some ways.

What if there were another option? Specifically, what if you could make your cancer basically a chronic condition? Most people do not think about it, but, for many cancer can be simply a chronic condition.

A chronic condition is one that lasts at least a year and requires regular medical care.ⁱⁱ Diabetes is the classic chronic condition, but I think cancer often should be treated as a chronic condition.

Here is the thing, while we often talk about “saving lives” or something similar, the fact is that no doctor can save your life. No person can save your life. You cannot save your own life. There is no such thing in medicine.

There are only two things any doctor can ever do for you: (1) help you live longer or (2) help you feel better. Some can do both, but those are the options for medicine. Put another way, all medicine is palliative.

This is not meant as an insult. It is simply a reality. Even when doctor “saves” someone’s life, what the doctor has really done is postpone the inevitable.

I realize what I am saying may seem morbid, but I do not view it as such. Instead, view it as a framework for how to evaluate your treatment options.

So often, patients and doctors decide that a patient is incurable and decide any number of valid treatment options should not be taken simply because they will not prove to be a cure. What I am suggesting is that, regardless of whether a treatment is a cure, you should feel free to pursue various treatment options, including aggressive ones. The point does not need to be to “cure” your cancer; the real point of any cancer treatment is always to extend your life. It is nice if that extension occurs as a result of a cure, but the cure is merely an add on benefit to the main goal, which is to extend the patient’s life.

I have known many patients with a grim prognosis who have lived many years longer than average. Some were cured of their cancer. Many others were not, though. They live 5, 10, or more years with active cancer the entire time.

So what specifically should you do? Here are a few thoughts:

1. Make sure your doctor is on the same page as you.

Something to watch out for is a doctor who rejects a treatment simply because it will not “cure” you. To be sure, some treatments really and truly only have a benefit or are only worth the harm they inflict if they prove curative; that is something to consider. Too often, though, doctors deny patients perfectly good treatments that could give the patient months or even years of life, simply because the treatment will not be curative even though the patient is hoping to extend the patient’s life.

To give you an example, a very common misconception among colorectal cancer oncologists is that stage 4 patients can only have systemic chemo. This is frequently not true.

One option many needlessly take off the table is resection. Resection frequently can give the patients years of life even if not curative.ⁱⁱⁱ This result is dramatically better than chemo alone.^iv

In fact, I have known stage 4 patients who were told by one doctor they were “chemo for life” only to find another doctor who rejected that approach and offered surgery, even though surgery was not expected to be curative. Those people typically have multiple surgeries but also live much longer than those who never have surgery.

To give you an idea, one person in one of my groups has had five recurrences in multiple organs over the last four and a half years and has had multiple resections as well as chemo to deal with them. Yet, most colon cancer oncologists would tell that same patient that resection is off the table because it is not expected to be curative, but the fact is that each surgery has given the patient nearly a year of life. At the time of writing, the patient is not close to death; in fact, the patient is NED^v again.

This is not to say surgery should be the goal for everyone. This is to say that simply because one is not “curable” does not mean one should abandon the most effective treatments if long term survival is the desired goal. A cure is beside the point; a perfectly fine goal is to live a long, high quality life.

If your doctor is not on board with your goal, then it is time to find a new doctor.^vi You need your doctor to effectively support your aims. If your doctor thinks your goal is not one you should pursue, then that doctor is not the doctor for you.

2. Understand you have no obligation to die.

This may seem like a weird thing to say, but a lot of doctors kind of view it as your obligation to die if you are not curable. You annoy them by pushing and asking for things. They emotionally write you off as terminal and expect you to die on a certain schedule. It is almost like they think you have an obligation to die because you are “terminal.”

I have previously said that some doctors create self-fulfilling prophecies in which they decide a patient is going to die soon, deny the patient the best treatments, and then feel justified when the patient dies.^vii Nowhere is this more prevalent than when the doctor decides the patient is not curable.

Frequently, the fatalism of doctors convinces patients there is no reason to do anything beyond what their doctor says, even when they want to live for years. You do not need to accept that.

Just because you cannot cure your cancer does not mean you need to just give up on treatment. If you can get several more years, would you want to? If so, maybe you should consider aiming for that.

3. Consider piecing smaller treatments together to make a treatment plan.

A lot of patients think they need a big treatment to get them what they want, e.g. surgery. You might think I am suggesting that you should only be looking for big treatments. I am not. I am suggesting you look for effective treatments.

Effective does not just mean it cures you or gets you years of life. The fact is, a treatment that gets you a couple of months with few or no side effects is effective too.

The reason I bring this up is that too often, patients look at something that gives them a few months of life and say that is pointless. What if you could have 10 treatments that layered on top of each other and each gave you two months of life? That would be 20 months, i.e. over a year and a half. That actually happens a lot.

Going back to an analogy I used months ago, you are trying to use as many cops to catch the cancer criminal as you can find. Having cops approach from multiple angles can often give you better odds of at least controlling the cancer criminal.

4. Create a treatment plan/strategy.

This point goes hand in hand with the previous point. I have previously discussed the importance of creating a strategy.^viii I suggest you read it.

If you want to live for an extended time with cancer as a chronic condition, it is even more important to create a strategy. This strategy probably should include standard systemic treatments, standard localized treatments if possible, clinical trials, and complimentary treatments.

What does this look like?

Very commonly, it means doing chemo with complimentary treatments for several months, then a surgery, then a trial, then radiation, then chemo with complimentary treatments, then a trial, etc. Going from treatment to treatment means either having a great medical team that facilitates this for you, which in my experience is very much the exception but far from unheard of, or significant planning and advocacy by the patient or caregiver, including using multiple doctors and hospitals. If you are like most patients and caregivers, you can do this, but you will need to do it yourself.

5. Realize that dying does not mean “losing,” and you are not “fighting” cancer.

I often see people say their loved one “lost” that person’s “fight with cancer.” I understand that language and have used similar language, but that is not the way you should look at your cancer.

Cancer is a natural part of life. Death is a part of life. No one ever lost by dying; they merely went through a natural and inevitable process. You are not giving up if you decide you do not want more treatment; you are making a decision about the kind of life you want to have.

Likewise, you are not “fighting” cancer. Cancer is a part of your body. If you fight yourself, you tear yourself apart. In a fight, you exchange blows. That leads a lot of patients to have needless suffering. Think of it more like trying to heal than to fight.

Often, it is the caregivers who are a bigger problem here. They do not want to lose their loved one and are willing to push for more and more treatment, even when the actual patient wants to stop. When the patient says, “Stop,” they push forward.

Certainly, there are times when the patient may need a cheerleader, but this should not cross over into bullying the patient. There is a very real fear by the caregiver, but the fact is the caregiver does not have to deal with the consequences of cancer treatment in the same way the patient does. So caregivers, do not be angry or accuse the patient of giving up if the patient decides to stop treatment.

This is my way of saying that you do not need permission from me or anyone else to decide to not treat your cancer. For many people, no matter what they do, they will die sooner rather than later from cancer. What is more, there are definite trade offs to treating cancer; it can be expensive, time consuming, and terribly unpleasant. You are not losing if you decide to live life the way you want, rather than what someone else wants.

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CONCLUSION

In some ways, the idea of shooting for a “cure” misses the point. Whether it is cancer or something else, one way or another, we are all going to die.

The best you can do is live long and feel good. Regardless of whether you are “curable,” you should feel free to pursue those goals if that is your wish. They are more frequently attainable than many patients realize.

BETSY IN HER OWN WORDS

When one can’t sleep …

one journals and then blogs...

This afternoon and evening we spent the evening with Daniel’s sister and her family. Their little girl has the most beautiful little ringlet(s) (the parenthesized “s” is because it is one big tight curl unless you split it up). Both of her grandpas were visiting and commenting on the curls and then ooing over her baby brother and comparing where his features had come from. I felt the sting of the loss that there will be no little Daniels to see if those curls win over my straight locks.

This is cancer. The battle. To not be overwhelmed with the losses. To fight for the joy in each day and not tire out. But perhaps that is life in general. The older I get, the more you realize that everyone has something they’re fighting whether it’s cancer or the consequences of poor choices or various losses... Life seems just full of suffering, and yet we fight so hard to keep it and get depressed when it feels unjustly shortened.

This morning after struggling to get to church (It was early and it is feeling like my rectal fissure has reappeared...) The pastor opened his sermon with the following word:

Enervate

verb

1. cause (someone) to feel drained of energy or vitality; weaken.

That about summed up how I felt for a few moments. How I feel often. Today’s sermon was on a passage from 1 Kings 19 where Elijah was fed twice by an angel, and John 6 where Jesus says he is the bread of life; and whoever eats from him will never be hungry again. I thought of my feeling tired and looking ahead to the hardness that is to come. Then having the hope that we have in Christ shining in. The ope of heaven and eternal life. I like to think of life in heaven as a continuous being in the presence of our creator, Christ, containing an absence of loneliness and the missing of love ones that is our constant companion here on Earth.

I haven’t felt too terrible on this chemo. Daniel is so impressed by how well I have been this week. :) I have been able to get out everyday or have someone come to me. There is a constant ache in my stomach since my chemo, a bit of nausea, but if I have something else to focus on, it seems to go away. So I can do stuff, with a little bit of a fight.:) I’ve really enjoyed all the bucket list suggestions and my compiling is an ongoing project. But my friend XXX who has lived in some of the roughest places suggested I look for something beautiful everyday. I have enjoyed doing this. And thought I would share my list...

My favorite Beautiful Moments this past week-

Last Sunday: Catching my curly-haired niece as she jumped into the pool at the water park we were playing at with all her glee.
Monday: 6 college friends, 10 children under 9; an organized chaos of a luncheon.
Tuesday: Having cheerleaders at chemo, and being praised by one of the nurses for my good attitude.
Wednesday: Walking into my little brother’s house and hearing his 4-month old screeching and her mother laughing at these “attempts” at talking.
Thursday: Coloring with my friend XXX (yes we colored castles, one is never too old!) and Hugs from my Daddy.
Friday: My hubby dancing to something like California Gurls as part of a ‘Let’s Dance 3’ video game in a successful attempt to get the 6-year-old twin girls that were visiting with their parents to get over their shyness and dance too.
Saturday: Watching others dance at XXX Irish Fair.
Sunday: The sound of the small church we’ve found (think 80 people on a Sunday) singing in full gusto behind us when we went up for Communion.

I hope you enjoyed these beautiful moments as much as I have. Thinking about them continues to bring me joy. Perhaps that is why we cling to our lives for all the small joys intertwined amidst our sufferings.

As always, thank you so much for your prayers and support and words of encouragement. They help with each day’s beauty.

Love, Betsy

i https://concerningcancer.substack.com/p/betsy-loves-kids?r=xwnqz

ii https://www.cdc.gov/chronic-disease/about/index.html

iii See https://www.sciencedirect.com/science/article/pii/S1091255X24000209 (showing almost 60% of colon cancer patients who had liver resection survived at least five years). Of note, half or fewer of those who survive five years are “cured.”

iv https://www.cancer.org/cancer/types/colon-rectal-cancer/detection-diagnosis-staging/survival-rates.html (showing average 5 year survival rate for all stage 4 colon cancer patients is 13%).

v https://open.substack.com/pub/concerningcancer/p/farid-fata?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

vi See https://open.substack.com/pub/concerningcancer/p/recovery-time?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web and https://open.substack.com/pub/concerningcancer/p/hello-my-old-friend?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web on finding the doctor best for you right now.

vii https://open.substack.com/pub/concerningcancer/p/valentines-on-chemo?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

viii https://open.substack.com/pub/concerningcancer/p/medical-note-creating-a-strategy?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

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A stage 4 cancer patient recently asked a group of us if she should consider doing a trial while chemo is still working. That is a valid question and one I lot of people have.

If you have read my previous posts, you know I believe trials are valuable tools and that patients should consider doing a trial essentially from the time of diagnosis.ⁱ I want to be clear that I am saying you should CONSIDER a trial; I am not saying you necessarily should DO a trial.ⁱⁱ

I think the answer depends on a host of factors. Here are some of the things I think someone in that position should consider:

1. What is the trial’s objective?

1.b. What is your objective for the trial?

Too many patients do not consider the goal of the trial and whether it lines up with their goals. They often simply assume the trial is trying to cure cancer because for many that is their goal. Many, probably most, trials have other objectives, though, such as determining whether the treatment is safe in the first place.

2. How developed is the treatment (assuming this is an interventional trial)?

A trial early in development is unlikely to be terribly effective, even if the treatment ultimately turns out to be extremely effective. Do you really want to give up on a proven treatment (i.e. chemo) that is working for you in exchange for something that is speculative?

3. Will the trial admit you without requiring you to fail your chemo?

This is a big one because most trials will not.

4. How plausible is the trial?

A trial is an experiment. It is a gamble the treatment will work. Some bets are better than others though. So, how likely is this bet to pay off?

5. How logistically easy for you is the trial?

For a lot of patients, getting chemo can be easy. For Betsy, it was a 10 minute and later 20 minute drive to the chemo clinic. For some trials, though, you may need to travel hundreds of miles or more, stay overnight in a hotel or the hospital, and more. That majorly impacts your quality of life and may make the trial unsustainable.

6. What are the side effects of the trial?

With the chemo, you have a pretty good idea what the side effects are, and your doctors have experience dealing with them. With a trial, you may get wild side effects with no effective way to treat them. So, you want to know about that before making the switch.ⁱⁱⁱ

7. Do you have insurance coverage at the hospital doing the trial?

Trials are “free” not free.^iv Presumably, you already know you have coverage for the chemo. It can be a really bitter pill to suddenly get an expected bill.

Even if you do not do the trial now, it may be worthwhile to start the work of getting setup with the trial. Sometimes, it takes 45 minutes; sometimes it takes 3 months. If it is going to take a long time, getting the ball rolling now may mean you are ready for the trial when/if your chemo fails. So, I would at least consider the trial while the chemo is working.

i https://open.substack.com/pub/concerningcancer/p/medical-note-planning-for-trials?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ii https://open.substack.com/pub/concerningcancer/p/medical-note-deciding-on-trials?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iii Id.

iv https://open.substack.com/pub/concerningcancer/p/the-scary-world-of-clinical-trials?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

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With cancer, you can do everything “right” and still get a bad result. Betsy and I had not done everything right. To be sure, we had followed the advice of the “best” doctors we could find, some of whom were considered to be among the best in the world at what they did, but their treatment plan was not the best we could have done. We had relied on them hoping that Betsy would be one of those in the minority who would be cured of stage 4 colon cancer.

At the end of July 2015, we learned that was not what had happened. A few weeks earlier, we had learned that Betsy had some suspicious new spots in her lungs that were likely metastases, and we knew she still had a tumor in her liver that looked like it was dead. We were hopeful we could ablate the liver tumor and resect the lung tumors.

That is, we were hopeful until we did a CT of Betsy’s liver at the end of July. It showed that the tumor the doctors thought was dead had been growing over the past couple of months and that she had new liver tumors. The second opinion oncologist told us very bluntly that he viewed Betsy as terminal.

No more surgery. No more ablation. Just chemo until she died. In the span of about 90 seconds, all of Betsy’s dreams vanished.

The past two months had been like a reprieve. We had been able to live nearly normal lives, albeit with some major surgeries. Betsy had felt almost normal. She had been able to think. She had been able to play with the nieces and nephews. She had been able to go visit her friends and family.

This led us to think about buying a house together. When we had gotten married 10 months earlier, we had each given up our residences and moved to a new town and rented a place with the idea we would then shop for a house over the next year at our leisure. The house shopping had not happened because chemo got in the way.

Once we bought a house, the plan had been to make use of the bedrooms with some new babies. Again, chemo had gotten in the way of that.

Still, until we got the scan, we had the dream. Prior to the July 2015 scan, we had been hoping we could put life on pause, kill off Betsy’s cancer, and get back to our regularly scheduled lives. That had been the dream, and the last two months had felt like we were starting to live the dream.

Dreams end, though. This news was the end of it for Betsy. It was what she had feared when she had first found out she had stage 4 cancer.

While the doctors were saying this cancer was going to kill Betsy, no one knew when it would happen. She probably had a few years left, but that left us with a big question. How do you plan to live when you know you only have a year or two, maybe three, to live?

What should be our goals for Betsy’s care? What goals should we have for her life?

Those were questions we had to wrestle with. Well, that and grief at the death of the dream.

MEDICAL NOTE – WHAT I WOULD DO DIFFERENTLY IF I COULD

Looking back, it is clear there are some things we should have done differently. This is not meant to be an act of self-recrimination but an exercise in helping others see what they can do to improve their situation.

Here is the reality of what had happened:

1. Betsy had done the strongest chemotherapy regimen for her cancer with the goal of getting to liver resection.

2. Betsy had a liver and a colon resection. Resection offers the best chance for long term survival or even a cure for Betsy’s cancer.

3. Betsy had what most people would consider to be probably the best possible medical team in the world. Her second opinion guy was one of the most prominent colon cancer oncologists in the world, with a number of doctors saying he was THE best colon cancer oncologist. Her liver surgeon was possibly the best liver surgeon at one of the best hospitals in the world. Realistically, few patients get all of those advantages.

Yet, there are a number of things she and I could have done differently that we should have done that could have changed what happened. Here are the top things I wish we had done:

1. A palliative doctor.ⁱ

2. Hepatic Arterial Infusion.ⁱⁱ

3. The Fasting Mimicking Diet.ⁱⁱⁱ

4. The ketogenic diet.^iv

5. Curcumin.^v

6. Vitamin D^vi

7. High dose Vitamin C

8. Turkey Tail Mushrooms

9. Decline Dexamethasone and Neulasta^vii

10. An integrative or functional medicine practitioner^viii

11. A cardiologist^ix

12. Ice Betsy’s hands and feet during chemo^x

13. Chemo sensitivity testing

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To expand on each of those:

1. A palliative doctor

That doctor’s sole job is to help the patient feel better. At the time, I was heavily focused on treating Betsy’s cancer, and while dealing with side effects consumed a lot of time and energy, that was still very secondary to treating the cancer. Betsy was too sick to do anything but exist; so she was not in a position to be pushing for a palliative doctor. That should have been a huge clue I should have gotten one.

I have mentioned this before, but it bears repeating. By improving the quality of life for patients, palliative doctors frequently help patients with advanced cancer live longer.^xi Betsy’s case illustrates how that can work.

Betsy was so sick from her chemo that she had her resections before she actually completed her full course of chemo. The instant she was eligible for surgery, her oncologist suggested stopping the chemo, recovering for surgery, and then doing surgery. He did this both because she was eligible for surgery and because she had been very badly hurt by the chemo, and it is questionable if she could do four more rounds of it.

There were signs, though, that more chemo would have been a good idea. First off, her tumor marker, CEA, was still quite elevated.^xii It had come down a great deal, but it was still much higher than normal. This is a poor prognostic sign.^xiii

What is more, not all of her tumors were “dead.” A number of them were still active, and getting more of them dormant would likely have reduced her risk of recurrence too.

The long and short of it is that, if Betsy had felt better, she probably could have done more chemo, and that likely would have resulted in giving her better odds. So, besides the benefit of not ruining her life so much, getting Betsy a palliative care doctor offered her better odds to not have her cancer come back immediately after surgery.

2. Hepatic Arterial Infusion

Hepatic Arterial Infusion (HAI) is a game changing treatment for liver metastases from colorectal cancer.¹ It results in dramatically improved odds for long term survival. Getting this could have significantly changed things.

If you have read my previous posts, you know that by July 2015, Betsy did not just have tumors in her liver but also her lungs. A reasonable question you would have is why I think HAI in May 2015 still had potential to change her outcome.

The reason is two fold. First, did her liver tumor essentially spread to her lungs? There is no way to know, but, if so, the HAI pump maybe could have kept that liver tumor better in check and prevented the spread. Second and more importantly is because when she just had lung tumors, she had the possibility of treating them with a localized treatment like surgery or ablation. The regrowth of her liver tumors, though, meant she could not do that. This is because when we focused on one organ, the tumors in the other would rapidly grow.

If she had done HAI, though, those liver tumors may not have recurred so quickly. This would open up the possibility of treating the lung tumors with a localized treatment.

3. The Fasting Mimicking Diet

Fasting or doing the Fasting Mimicking Diet (FMD) specifically around the chemo infusion both increases the efficacy of the chemo and reduces the side effects. Those benefits are each very valuable. This reduction in side effects also means Dexamethasone should not be given, which is great because you want to avoid it if possible, and it probably would have rendered the Neulasta unnecessary (see below for why that matters).

In Betsy’s case, I would not have had her fast if I could do it over again. I would have had her do the FMD. This is both because Betsy refused to fast and because the colon cancer chemo regimen is so frequent that the fasting is too much.

For colorectal cancer, it is typical to do chemo every other week, which was Betsy’s schedule. You need to fast at least three days every round of chemo for the fast to work as intended. Doing that every two weeks is too much in my view. So, I would want to do the FMD so that she was still getting some calories.

4. Ketogenic diet

If I could do it over again, when not doing the FMD, I would have had Betsy do the ketogenic diet. This also seems to reduce side effects and probably has some cancer benefits.

To do it, what I would ideally have done in my mind is start the FMD on Sunday since her chemo infusion was on Tuesdays. I would have her continue it until Wednesday afternoon. Then, I would have a transition period for the next 24 hours where I get her body used to eating food again. After that, it would be the ketogenic diet for a week and a half until we started the process over again.

5. Curcumin

This is a supplement derived from the spice turmeric. I will write more about it in the future, but curcumin specifically with some of the colorectal cancer chemotherapies, specifically Flourouracil and Oxaliplatin, has been shown to have a synergistic effect, and Betsy was on both of those drugs. In other words, it makes Betsy’s chemo more effective.^xiv

In other words, it likely would have made her chemo more effective. It is also safe with Betsy’s chemo (although there is a concern it can harm the liver if taken too long or at doses that are too high).^xv So, it is something relatively safe with some benefit to her cancer.

6. Vitamin D

For colorectal cancer in particular, probably no complimentary treatment has data as good as Vitamin D. A study published in 2017 showed even rather low doses (although the researchers misleadingly called them high doses) were safe and improved progression free survival.^xvi Having something cheap, safe, and effective is a huge deal.

7. High dose Vitamin C

I have never mentioned this before, but I absolutely should have done this. I think it is a tremendous travesty there has not been more research into high dose Vitamin C because it has shown spectacular promise in some studies. For example, multiple studies on advanced pancreatic cancer, which has long been deemed “undrugable” (although there has been a recent breakthrough), high dose Vitamin C given with standard treatments dramatically improved responses.^xvii Lung cancer and glioblastoma, which are similarly deadly, also had great responses.^xviii What is more, high dose Vitamin C has consistently been shown to reduce side effects.^xix So, this is a treatment I absolutely should have gotten for Betsy.

8. Turkey Tail Mushrooms

More accurately, I should have given Betsy Polysaccharide K (PSK) and maybe Polysaccharide-Peptide (PSP), which are the active ingredients in turkey tail. PSK has consistently, in study after study, helped cancer patients who take it live longer and have a reduce risk of recurrence.^xx Of particular note, these are human studies, not laboratory studies, and some were randomized while others were not. This should be a much bigger deal than it is. Frankly, this is huge.

A fair question is why turkey tail is not better known. There are a few reasons. The first is the age old problem that it is not profitable. That is not a good medical reason, but it is a reason.

There is a legitimate medical problem, though. Quality control is terrible with mushrooms and nearly impossible if not actually impossible. The issue is not a safety one. The issue is whether they work.

In a nutshell, you may get a batch from a manufacturer that is full of PSK and PSP and does a treat on your cancer. The very next batch may have next to no PSK or PSP and do nothing for your cancer. You have no way of knowing what you are getting and if it is working at the time you take it. That makes turkey tail … frustrating. Nonetheless, since there is no indication this is a safety issue, the biggest problem is that whatever batch you get might be a waste of money.

9. Decline Dexamethasone and Neulasta

In multiple articles, I have discussed the harms associated with Dexamethasone and Neulasta. There are lots of problems with these drugs, but the one I am concerned with at the moment is that they both may help your cancer grow and/or spread. Sometimes, you need the benefits these drugs offer, but that is a huge risk to take. If we had done a better job of controlling Betsy’s side effects through other means, such as by using the FMD, the ketogenic diet, and high dose Vitamin C, these drugs may not have been necessary.

10. An integrative or functional medicine practitioner

When my wife was first diagnosed with cancer, I was like most people and really had no idea which complimentary or alternative treatments, if any, were actually useful. I do now, but that knowledge does my late wife no good. Realistically, there was too much to do in the first few months to really learn about many of the options out there.

Thus, a integrative or functional medicine practitioner would have been a good idea. To be clear, I prefer integrative practitioners over function medicine folks because I believe there is more consistency with integrative practitioners.

Regardless of which you use, the reason I think you should have one is to get help in selecting complimentary treatments. Those treatments might help the patient feel better or might help tackle the cancer directly. Regardless, this is a very valuable thing.

Something I have consistently observed is that those who really access a number of complimentary treatments are more likely to live significantly longer than those who do not. I am talking double, triple, quadruple, or larger gains in life expectancy. Certainly, that is not everyone, but there is a definite trend in what I have observed.

So, especially when you are new and do not have the skills, time, or energy to go researching all kinds of complimentary treatments, I think an integrative or functional medicine practitioner is helpful. I certainly wish I had used one for Betsy.

11. A cardiologist

Spoiler alert, in the future, we would find that Betsy’s heart was damaged by her chemo. Heart and liver damage are things I have warned about before.^xxi These can become serious buggers. In Betsy’s case, her heart became a bit of an issue.

The liver can be harder to deal with since you will necessarily be looking at complimentary treatments and not standard treatments as my experience has been that hepatologists (liver doctors) are terribly unhelpful. Cardiologists, though, would later prove helpful to Betsy.

The first cardiologist we met remarked that he lobbies every medical oncologist to refer patients starting chemo to him because he has drugs that can protect their hearts from the chemo damage. This is no idle boast; the evidence backs up his claims.^xxii

So, I wish I had gotten Betsy a cardiologist. It is simple and would have done a fair bit to improve her life.

12. Ice Betsy’s hands and feet

In my previous posts, I have probably not been clear how devastating the cold sensitivity and neuropathy were for Betsy. The neuropathy absolutely wreaked her. She is not alone.

Chemo-induced peripheral neuropathy is extremely painful and is a horrendous side effect. It is hard to overstate how bad it is. Unfortunately, most oncologists downplay how awful it is, and Betsy’s oncologists were no exception. To be blunt, it was not until it was too late that I realized how destructive it is.

The need to address the neuropathy often leads patient to reduce the dosage or completely eliminate chemo agents that are very helpful. This leads to worse outcomes because patients lose one of their best weapons.

Probably the best way to avoid that is to ice the hands and feet. I have written a pretty good breakdown (if I do say so myself) of the neuropathy treatments and how to do icing. Read it here

https://open.substack.com/pub/concerningcancer/p/betsy-had-a-stroke?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

This is absolutely something I should have done from the very beginning. Particularly in the case of neuropathy, an ounce of prevention is worth a lot more than a pound of cure.

13. Chemo sensitivity testing

This is something I will discuss in more depth in the future. This is testing to see which drugs are actually best to treat the patient’s cancer. It was tried decades ago and was an absolute disaster.

Based on that and the fact that insurance coverage could be a problem if a weird drug was found to be effective, Betsy’s primary oncologist talked us out of doing it. Would it have changed anything? I have no way of knowing. Tailoring treatment to the patient and not giving everyone the same treatment strikes me as a good idea, and there are some indications medicine is moving in this direction in some ways.

14. NSAID or cimetidine around surgery

I have previously written about the use of NSAIDs and/or cimetidine (Tagamet) around surgery.^xxiii This is simple, cheap, easy, and comparatively safe. I doubt it would have helped with Betsy’s situation given how quickly her tumors regrew, but it is highly unlikely to have hurt her. So, I view it as worth trying.

CONCLUSION

You may have noticed everything I would have done differently falls into one of two categories: (a) things that fight the cancer in addition to the standard things or (b) things that improve quality of life. This is no accident. For many cancer patients, there are lots of things you can do to accomplish either of those goals, and both of those goals are vital to achieve and are pretty well equal in importance.

So, why did we not do these things? To be blunt,we put too much trust in Betsy’s doctors. I am not saying we should have put no trust in them, but we did not consider how much the business affects their decisions. We thought her doctors were just there to treat her and were doing the absolute best anyone could do to treat her. That was and always will be untrue for everyone. I want to reiterate, you can nearly always do better than simply doing what your doctor says. This holds true regardless of your doctor’s specialty.

While I do not believe Betsy’s second opinion guy believed everything he told us (specifically about HAI), I firmly believe her primary oncologist believed everything he said and that he was legitimately doing his best. So, do not mistake what I am saying. I am not saying her doctor set out to sabotage Betsy. I am saying almost all doctors have huge blind spots, have been taught things that are untrue, and rarely think beyond the goods and services they sell.

Would any of these changes have prevented the rapid regrowth of Betsy’s cancer? I do not know. Her cancer spread very rapidly; so nothing may have helped. Even if they did not stop the growth in July 2015, I am confident they would have ultimately helped Betsy live longer if for no other reason than because they would have preserved her strength down the road.

Are all of these things you should do? You probably should not do all of them. These are the things I would do specifically for my wife’s situation, which was necessarily unique to her, but you probably should do at least some of them if you are not already. Every treatment here is something that is intended to address a particular challenge Betsy encountered. You probably do not have all of the same issues as Betsy, but you may have a lot of the same or at least similar issues.

What is more, many (but not all) complimentary treatments offer similar benefits for many types of cancer. So, a lot of these treatments are probably things you want to incorporate. Others you will not want to use because they are specific to my wife’s situation, but you can likely find a treatment for whatever problem you are having that is outside what your doctors told you to do that is a significant improvement on the standard approach.

More than these specific treatments, the approach is something you should consider. The approach I am talking about is to not simply accept what your oncologist or surgeon tells you. A key element of the approach is that we put way too much stock in the advice of the doctors. I know it is hard because they are the “experts,” but their expertise is much more limited than many realize.

This is why I specifically said I should have incorporated a number of other doctors, such as palliative care, integrative medicine, and cardiology. Their expertise is also limited, but it is a different area of expertise. This is also why I have previously suggested you review the evidence for various treatments for yourself and make your own decisions.^xxiv

The last thing to know is the time to do this is NOW. It is not in the future. Betsy’s oncologists counseled us to wait on doing these things and that we should give their therapies the chance to work without adding things. That was TERRIBLE advice, and I should not have listened.

Most of these things work better in combination with everything else.^xxv What is more, almost everything works better earlier rather than later when resistance sets in.^xxvi Do not wait. Waiting is deadly.

I hope you will learn from my mistakes. Most patients make the same mistakes. That does not change the fact that these are mistakes. Hopefully, seeing my mistakes will empower you to not sit back and hope the “best” doctors are actually the best you can do. You can do better.

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BETSY IN HER OWN WORDS

Wednesday I was down in XXX for blood work and a CT scan. Thursday we went back down to meet with Dr. XXX (My Colon Cancer Oncologist). As it turns out, I had misnamed the two large tumors in my liver, they were a Bert (not Bertha) and Brunhilde and they procreated... The one remaining spot in my liver had grown larger, and there were 2 or 3 new ones on my liver, as well as the two little spots in my lung. This is why stage 4 is so challenging, you can get the stuff you see, but it’s been in your blood and dropped naughty cells (that’s what cancer is, naughty cells, or cells that have deformed and cease to function as they were meant to) all over and naughty cells like to encourage more cells to become naughty. I figured with stage 4 cancer, that someday I’d go in for that CT scan and there would be spots in new places, but I had started to think maybe I’d be special and skid by, those naughty cells all properly disciplined by the chemo, or that I’d have a few years of living with the hope of a cure (though we knew last fall a cure was probably less than a percent of a chance) was possible.

Now we are changing goals. Instead of pushing as hard as possible for a cure, we are slowing down to run a marathon. We are hoping for a remission or to slow down the growth of cancer so I get more time. Tuesday morning I restart high dose chemo, in hopes of inducing a remission. After 4 months of that, if all goes well, I’ll be switched to a low-dose chemo (i.e. pills I take at home) in hope of getting me many years.

Here’s a breakdown of the difference
Cure – decades, babies, buying a house, growing gray, push hard (tough sprint), get close to killing self but succeed in killing cancer and then self comes back etc...
Remission – years, no babies, no house, but Christmases and birthdays and trips, push slow and steady (marathon like) slow the growth of cancer while preserving the self...

That’s the hard part. How do you plan for years, but not decades? I suppose if I was 60 I could. And it breaks my heart to let go of the dream of having little Daniel’s. So it’s been a hard pill to swallow. I don’t want this to be my life. I don’t want to submit to God’s plan/God’s will. I like my own better. And I, of course, know best (this is a sarcastic sentence). I ask why does have to be me? (strange I haven’t done this until now). Why do I have to drag my family and friends through this? My wise husband responded to these questions yesterday, “it must be what’s best.” God has a different plan than mine. He, who created the world and everything that’s in it (including me) has a bigger view than we do. While I think my plan is best, He exists outside of time and knows these trials and sufferings will be better for all of us, will be better at achieving my life’s purpose “which according to the Bible is humankind’s purpose of glorifying God and enjoying him forever). So in a hundred years from now when I’m partying with Jesus in heaven, this will not matter or I’ll be able to see the blessings that come from it.

So my head know the Truth, but my emotions are sad, mourning the loss of a dream. A year ago I was moving away from being footloose and fancy free towards ties of a husband and a house and an eventual family. Not wanting to do much more traveling. I’ve always had a little bit of an avoidance of what are called Bucket Lists, and since I’ve turned 30 I’ve had a “do it now” attitude (I’ve even jumped out of a perfectly good airplane). So I’ve decided I’d take an inventory of those of you who read my blog. What would you do if you had years, not decades, to live or looking back on your life what is something you’re really glad you did? In other words I want to come up with the longest bucket list ever (though I suspect there is something in the Guinness book of World Records that I would want to compete with, but you get the idea). So that I never get to the end of it and give up... I’ve seen patients die, I’ve seen my own mother die. Often those that see this frequently report a deathly ill family member hanging on until that child that lives far away comes in to say goodbye. Or the phenomenon of patients, especially those with cancer, doing great until they achieve a specific goal and then quickly declining. I figure if I have lots of goals to achieve then maybe I’ll kick this cancer into remission and get more than years. Maybe this is grasping at straws, but why not?

What can you do? Pray. God is good and God is big, a doer of massive things as long as it is what’s best. Encouraging phone calls and letters and notes. Come visit, but not all at once. Call my husband while I am on chemo and see what he needs help with (food, chores, shopping). Right now I feel good, it’s the beginning of a years long race. The longer I run it, the more help we’ll need to finish it. Encouragement now is great, but I will need more in a month and two months and six months and a year and two years...

Thank-you for all your support and prayers,
Love, Betsy

1 Please understand, I am speaking specifically about liver mets in colorectal cancer. I do not know if the data is as good for other indications.

i https://concerningcancer.substack.com/p/what-does-that-guy-do?r=xwnqz

ii https://open.substack.com/pub/concerningcancer/p/one-plan-to-rule-them-all?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iii https://concerningcancer.substack.com/p/betsy-gets-hit-by-a-train?r=xwnqz

iv https://concerningcancer.substack.com/p/feeding-and-cancer?r=xwnqz

v https://open.substack.com/pub/concerningcancer/p/one-plan-to-rule-them-all?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

vi https://open.substack.com/pub/concerningcancer/p/one-plan-to-rule-them-all?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

vii https://open.substack.com/pub/concerningcancer/p/betsy-gets-hit-by-a-train?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web and

viii https://open.substack.com/pub/concerningcancer/p/what-does-that-guy-do?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ix https://open.substack.com/pub/concerningcancer/p/medical-note-the-hidden-harms-of?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

x https://open.substack.com/pub/concerningcancer/p/betsy-had-a-stroke?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

xi https://concerningcancer.substack.com/p/what-does-that-guy-do?r=xwnqz

xii https://open.substack.com/pub/concerningcancer/p/bible-study-fellowship?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

xiii https://link.springer.com/article/10.1007/s12029-025-01244-6

xiv https://pmc.ncbi.nlm.nih.gov/articles/PMC3836443/ and

https://pmc.ncbi.nlm.nih.gov/articles/PMC2781082/

(Note, these studies I am citing are laboratory studies and are thus not overly strong. I cited them specifically because they are talking about Betsy’s chemotherapy agents. There are stronger studies on curcumin that are less specific to Betsy’s cancer).
See e.g. https://www.mdpi.com/1467-3045/47/9/716

xv https://www.sciencedirect.com/science/article/pii/S0022316622166575

xvi https://ascopubs.org/doi/10.1200/JCO.2017.35.15_suppl.3506

xvii https://www.cancer.gov/about-cancer/treatment/cam/patient/vitamin-c-pdq

xviii Id.

xix Id.

xx https://www.cancer.gov/about-cancer/treatment/cam/patient/mushrooms-pdq

xxi https://concerningcancer.substack.com/p/medical-note-the-hidden-harms-of?r=xwnqz

xxii See id.

xxiii https://open.substack.com/pub/concerningcancer/p/i-like-boring?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

xxiv https://open.substack.com/pub/concerningcancer/p/weighing-the-evidence?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

xxv https://open.substack.com/pub/concerningcancer/p/catching-the-cancer-criminal?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

xxvi https://concerningcancer.substack.com/p/chemo-can-stop-working?r=xwnqz

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By July 2015, my wife had been off chemo for three months. In that time, she had done a liver resection in May and a colon resection in June. She had one tumor left in her liver that we were close to ablating.

Once that was done, the plan was to give her chemo for six more months. Then wait. We were hoping she would be cured but understood realistically the odds of a recurrence were very high. Nonetheless, we were hoping to at least get a year or two without treatment.

We were still newlyweds, but my wife had gotten sick two days after we had been married. It had significantly detracted from our honeymoon to have her sick, and we were hoping to have something of a second honeymoon, one where she was not sick. Her cancer had to cooperate, though.

Of course, if her cancer really cooperated, Betsy was desperately hoping to have children. Being a mother had long been her dream. She had nieces and nephews who were kind of like her kids, but it is not the same thing. If she could just get to NED, then kids might be possible.

In the meantime, we had been out and about while she was recovering from her surgeries. Without chemo, even though Betsy was recovering from surgery, she felt dramatically better than she had while on chemo. We did not go crazy; just relatively short walks. Even short walks were a lot more than she was used to, though, after the months of an especially tough chemo regimen.

Even though they were short, easy walks, Betsy still overdid it. She ended up with a pain in her side that would not go away. So, she got a CT scan.

On the bright side, the CT showed no blood clot or anything else that would cause the pain, meaning it was just a muscle issue. Then came the down side.

Suspicious spots. The CT showed what looked like a small tumor in each lung. They were very small, but they looked like cancer. The radiologist could not be sure, and, and she would need testing for that.

Of course, the radiologist finished reading the scan just about 5 p.m. on a Friday. That meant no immediate answers for us. It meant we had to wait at least the weekend to find out.

Fortunately, Betsy had two wonderful friends come visit. These two men did not live anywhere near us. They each lived well over a thousand miles away and flew in. She had done a number of medical missions with these men, and they had decided to come visit Betsy now that she was the patient.

If you have never been truly sick, it is hard to understand how much impact a visit makes. Whether it be a short visit or a multi-day visit, a visit is a huge ray of sunshine because being sick is extremely isolating. What is more, it is easy to focus on your fears and pains. When someone visits, you have something to think about besides your fears and pains.

For us, knowing Betsy had suspicious spots on her lungs, having those two around made the waiting much more tolerable. In fact, those guys were fun.

Betsy had been excited for weeks that they were coming. Nearly every day before they visited, Betsy reminded me they were coming. It was very clear she both liked and respected them, but I knew basically nothing about them.

I was somewhat taken aback when I met them, one in particular. Betsy’s friends were overwhelmingly female and around her age, early 30s. What’s more, they were not usually terribly lighthearted. Sure, a few were, but most of her friends were quite serious. They were fairly serious women, not jocular men.

These guys were not like her other friends at all. They were decades older and much more, uh, boisterous. They were GUYS, and treated Betsy and me like guys.

When I first opened the door to greet them, the second comment after, “Hi,” I got from them was something to the effect of they were surprised Betsy had not married someone better looking. After almost exclusively being around fairly serious women for many months, women who would never have considered making a comment like that, it was a welcome shock to be the butt of good natured teasing, albeit from someone I had never met. That was the way a number of my guy friends spoke to each other, but I’m still a little surprised this gentleman had the guts to say that to a complete stranger. I still admire the courage, although I have long suspected Betsy at least gave him the green light to do it.

Betsy got some ribbing of course, but Betsy always not so secretly loved when people picked on her out of love. These guys knew that, and they spoke Betsy’s language. Even though they were visiting because Betsy was sick and were careful to do things that would not tax her, Betsy was not some sick lady to them; she was just their friend.

The time with them helped with the waiting, but we still had plenty of anxiety. The waiting was easier because they were there, but it was always in the back of our minds.

Throughout, we were hoping those spots were not tumors. Could they be scarring from her chemo? Could they be something else?

If they were tumors, though, they were small. Hopefully they could be resected or ablate.

Before getting sick, Betsy had been a nurse in a thoracic (i.e. lung) surgery recovery unit. Her hospital primarily did Video-Assisted Thoracoscopic Surgery (VATS). Betsy had always said she did not want a VATS after seeing what her patients went through. So, she very much did not want to undergo a VATS.

Now, though, I was desperately hoping Betsy could have a VATS. While we did not KNOW if those spots were tumors, we knew they were. They were new, they were growing, Betsy had metastatic cancer, and she had been off chemo and doing things that suppressed her immune system for months. There was basically no way this was anything but cancer.

The question was, could we cut it out?

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MEDICAL NOTE – Finding the BEST Doctor Part 2

This is part two of the series on finding the “best” doctor. I suggest reading part one first. https://concerningcancer.substack.com/p/recovery-time?r=xwnqz

To summarize, there is no one “best” doctor for any one type of cancer. In fact, there probably is not one “best” doctor for a lot of patients. There MAY be a “best” doctor for someone RIGHT NOW.

Specifically, I suggested all patients should take the following steps:

A. Figure out their biggest treatment need(s).
B. Determine the best treatment(s) for that need.
C. Work with your limitations to access the best treatment you can feasibly do.

Only once those steps have been accomplished should patients and caregivers start looking at individual doctors. In looking at individual doctors, here are some key things to know:

1. Understand the doctor/patient dynamic

I have a confession. I hate the word “patient.” It creates a power dynamic that is unhealthy. It makes doctors and patients think the doctor is in charge, and the patient just goes along for the ride. In other words, it strips patients of agency.

While that is the practical power dynamic, the fact is, legally it is untrue. In fact, your doctor will insist on paperwork that says this is untrue. You sign consent forms that say you the patient have decided on a treatment.ⁱ In other words, the legal power structure is that the patient is in charge. It just often does not feel that way.

The real relationship is of an independent contractor (the doctor) contracting with another party (the patient) for the provision of medical goods and services.ⁱⁱ To many people, this sounds too transactional and possibly even as too mercenary to adequately explain the relationship, but that feeling does not change the actual relationship. This does not mean you cannot be friendly with your doctor. It does not mean you cannot have a rapport with your doctor. It does mean, though, that your doctor is there to do a job. Your duty to yourself or your loved one is to select the person who can do the job best.

Understanding that this is a contractual relationship very much matters when it comes to both selecting and in deciding to keep treating with your doctor. It may not feel like this, but when you go see a doctor, in some ways, EVERY interaction is a job interview by the doctor. You may choose to fire your doctor whenever you wish. Do not be afraid to do that. It is part of business.

I am not suggesting you fire your doctor because you feel like it or because your doctor does something mildly irksome. I am suggesting, though, that, if you can get significantly better care from a different doctor, you can and should end your relationship with your doctor. Y

All too often, patients feel helpless when they are unhappy with their doctor’s performance. They feel the doctor is the boss, and they need to go along with whatever the doctor says. Your doctor is an advisor and merchant, no more. Never forget that.

2. Get referrals

This is probably not surprising. Referrals are a common way to find goods and services. That is for good reason.

Most people go to their doctor for referrals. In some cases, doctors are excellent referral sources. However, they are not universally good. Here is why.

When a doctor (or really any professional) gives a referral to another doctor, it is rarely because that other doctor will do the possible possible job for the patient. Instead, the referral is typically to someone who offers something the referring doctor does not offer and is someone whom the doctor knows or otherwise has a professional relationship. That last phrase is the key.

Generally speaking, doctors, like all professionals, give referrals in the following order of preference:

A. Colleagues in their clinic or an affiliated (not necessarily legally affiliated mind you) clinic. In other words, typically there is a formal referral situation or at least an informal one. Certainly, if there is another doctor in the clinic who practices in a specialty the patient needs, that is the guy to whom your doctor is most likely to refer you, if for no other reason than because that is who the doctor knows. Often, though, there are various pressures asserted to make sure that referral stays in house, such as compensation for the referral or interpersonal conflict if a referral is sent out that could have been handled in house.

B. Anyone else the doctor knows who practices in the appropriate specialty. Doctors know plenty of other doctors, but how many of different specialties do they know? Of those in other specialties, how many employ the best technology or treatment for the individual patient? In fact, what does the referring doctor know about the efficacy of various treatments employed by different specialties? Often, the answer to that question is, “A lot less than a well informed patient does about the patient’s specific issues.” That is not always the case, but it often is.

C. Someone who is well known in the field, typically by extensively publishing. This is what Betsy’s primary oncologist did.ⁱⁱⁱ When a doctor does this, that doctor is almost always doing the best for you that doctor knows. Doctors who are widely published are usually at major medical institutions and are highly respected. That does NOT mean that is the best doctor, though.

In fact, it generally means they are working for a major pharmaceutical company.^iv This is a symbiotic relationship where, sure they get paid some from the drug company but often more importantly, they get fame in the medical community which leads to referrals. In exchange, they frequently are little more than part of a very sophisticated marketing machine that is working to maximize the monetary value of drugs, not help patients.^v This is such a vast topic that I will write one or likely quite a few posts on the serious ethical and scientific problems with what gets published and by whom. For now, the key thing for you to understand is that just because a doctor is widely published and famous among other cancer doctors does not by any means indicate that doctor is best for you.

If you should not put the most trust in a referral from your doctor, then from whom should you trust a referral? The other patients. Experienced patients who have virtually identical or at least similar issues as you will be your best referral sources.

They have been in the room with the doctor they are talking about. They know how that doctor acts. They know what results they got. They know what kind of care they received. Other doctors do not have nearly that kind of experience.

The problem with patients, though, is that they tend to vary widely in the quality of the referral, much more so than doctors. For example, many of them do not realize they have a bad doctor. Pretty much by definition, nearly half of all patients have a below average doctor, but most think their doctor is above average.

What is more, like most doctors, many patients do NOT know which treatment is best for you and will refer the one person in the specialty they know, their own doctor, and will not know that doctor is not best for you. In fact, some patients will provide insane referrals to absolute quacks or to do doctors who do things completely irrelevant for your situation. Caution is thus warranted with patient referrals.

That said, some patients really know their stuff and have actually accessed the most effective treatment for your condition with the best or one of the best doctors for your specific issue. Hearing what they have to say is gold. Until you speak to the doctor who is actually best for you, probably no one else you ever speak with will give you information nearly as good as those patients.

Whenever you get a referral, you always want to ask questions about WHY the doctor being referred is good. Make sure you know what you want and why you want it. Ask questions to respond specifically to your issues.

In short, you should get referrals to doctors from both other doctors and from other patients. Doctors will more consistently give you at least somewhat appropriate referrals. However, the referral to the best doctor for you is more likely to come from another patient, but you are also more likely to get a terrible referral from a fellow patient.

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3. Be prepared

Before you meet with a doctor, you always, without exception, want to be prepared. How prepared you are will change over time. When you are first diagnosed, you likely know very little and thus have little chance of preparing the same way you will later when you know more. Nonetheless, always do what you can.

I previously wrote a post on what I would do if I were newly diagnosed. If that is you, I suggest reading that post. https://open.substack.com/pub/concerningcancer/p/what-i-would-do-first?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

Regardless of where you are in treatment and what kind of doctor you are meeting with, make sure you know which guidelines treatment are applicable to your biggest health need, particularly in that doctor’s specialty. This does not mean you need to follow the guidelines, and you may be visiting a doctor who does not, but it is very important you know what the standard options are. https://concerningcancer.substack.com/p/one-plan-to-rule-them-all?r=xwnqz

Once you know have that prepared, you will want to know more specific things and know more specific things. For example, you will want to know about your own tumor markers, cell biology, and genetic mutations. You will want to know where your tumor(s) is/are and what that means for you. You will want to know what the major side effects expected from that doctor’s treatment are.

Some of these may be things you need to ask the doctor about, but the more you know before you walk in to speak with the doctor, the more you can get out of your appointment with your doctor.

4. Interview your doctor

This is likely to be controversial, but never forget that your relationship with your doctor is a business relationship. No matter what else, this is a business deal. Just like with most jobs, this is an at-will arrangement (more or less, there are some exceptions).

Most people do not like to think of their doctors that way, and doctors do not like to think about their patients that way. It is true, though. A major implication of understanding this dynamic is that you should interview your doctor before deciding to treat or follow up with the doctor, and you should be continually interviewing your treating doctor.

Most appointments do not seem like the doctor is applying for a job. Instead, the patient goes in almost like a supplicant. The doctor tells the patient what to do, and that is what happens.

Obviously, there is a reason for that. The patient, especially if newly diagnosed, does not know much about cancer or how to treat it typically. The physician is laying out the physician’s plan. When you do not know much, it is hard to argue too much with that approach.

However, when you are trying to select the best doctor for yourself, that should not be the dynamic, at least not entirely. Instead, at least part of this should be a job interview, and you are the one hiring.

At least in America, you have options with regard to your doctor. If you want the best results, you absolutely should be interviewing the doctor. The doctor may know some things you do not, but that does not mean you need to work with that doctor.

Remember, the purpose of the care is to get the best care of yourself. That necessarily requires you to probe if this doctor is right for you. So, prepare some interview questions.

I do not mean silly questions like, “What is your best attribute,” or “why do you want this job.” Instead, ask real questions that matter to you about your care. If you are there specifically because the doctor does a particular treatment you think is best for you, ask about it. Are you candidate for the treatment? Why or why not?

If you want a doctor who will think outside the box (understanding very few will actually do so), then ask about that. Will the doctor consider using an atypical chemo schedule if that works better for your? How about a different drug combination? Will the doctor work to get your treatment approved by your insurance company, including filing an appeal of a denial?

Is the doctor really knowledgeable? You might be surprised how many doctors do not know things about cancer care they really should.

Is the doctor honest? Again, this is a huge concern. I know way too many oncologists who are not. They tell the patient what the doctor wants the patient to know or think, not what is necessarily the unvarnished truth or even true at all.

These issue beg the question, how do you determine if your doctor is competent and honest? One major technique you can use to filter out bad doctors is to ask questions to which you already know the answer. This may seem stupid, after all, isn’t the point of questions to get information?

The point of the question is indeed to get information, but the information you want is not necessarily the answer to the question. The information you want is whether you can trust the doctor.

You cannot simply ask your doctor if you doctor is good at the job. Everyone is going to answer in the affirmative. Most are probably even going to believe it.

There is actually a technical term for this bias; it is called the Dunning-Kruger effect. The name for this effect is not important, but what is important to know is that the worse one is at a task, the more likely that person is to overestimate that person’s skill.^vi So, there is no reason to simply ask your doctor if your doctor is good at what the doctor does; that doctor may well be literally the worst person to judge the doctor’s performance.

Likewise, there is no point in asking your doctor if the doctor is honest. First, that is an offensive question. Second, everyone will, again, answer in the affirmative. Why would a liar tell the truth to such a vital question?

So, you need to exercise caution and look for ways to determine if your doctor is being honest and straightforward with you. All the technical skill in the world does not make up for a lack of honesty. To be sure, plenty are completely honest; so, go with an honest one. To find an honest one, ask tough questions they may want to lie about (e.g. about a treatment they do not do) to which you already know the answer.

The idea your interactions with the doctor are at least partly an interview should continue throughout your time treating with the doctor. Things change, and the doctor who is best for you now may well not be the best one for you in future. There are a host of reasons why that may change, but it is important you know that it can change. If you are always at least keeping that in your mind and asking some questions to probe if this is still the best doctor for you helps you keep making an accurate assessment.

CONCLUSION

Finding a good doctor is HARD. You can do everything right and still get a bad doctor. I have found following this advice helps me to find the doctors that are best for me and my loved ones minimize time with doctors who are not the best. Above all, remember that your health depends on you getting the best doctor. Choose wisely.

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BETSY IN HER OWN WORDS

So last week after I overdid it I sat on my couch. When I walked or stood for any period of time I have been (and still do) having a pain around my right lower ribs. By Friday I decided I should call in and see what was the matter. I was told I needed to go in and get ruled out for a PE (ie pulmonary embolism or blood clot in the lung). This scored me a CT scan at the clinic here in XXX. (You know you’ve become a frequent flier when the CT tech recognizes you). So the scan showed no blood clot (yea, but this means my pain is Musculoskeletal and will take time to get better), unfortunately it also showed something I was hoping to never hear again... 2 new spots (about 4-5 mm), one on my right lung and one on my left lung, probably metastases. :( I am supposed to be beating cancer so I don’t know what they are doing there... But there they are. We, of course, got the results around 5 on Friday and this left no time to talk to our oncologist. So that is what we get to do this week. We don’t really know what this means. Maybe they can be ablated with my remaining spot on my liver, maybe I’ll need more surgery, maybe this doesn’t change anything, maybe this is the beginning of scans showing more and more cancer (the big fear).

Thankfully, in God ordained time, I had two dear friends visiting from the East Coast. XXX and XXX, the two gentlemen who I had the privilege to travel and work in Moldova with (they led the week long mission trips and have been encouraging and praying for me through all this). So instead of worrying and being sad, Daniel and I were able to cook for them on Friday and then have them take us out for dinner on Saturday followed by a production of The Music Man at the XXX theater in XXX. They also joined us for church and brunch today before they had to leave to catch their plane back home. It was a good time.

Today’s sermon was on rest. Resting in the Lord (the pastor actually gave a funny illustration of visiting with one of the people at church who was saying he was so tired he would probably sleep through the sermon today, but maybe not resting in that sense... I know of a XXX or two who have been guilty of that...). Anyways, the pastor was talking from Mark 6, looking at just before and after the feeding of the 5000, and how Jesus took his disciples and they went away and rested. He expounded on how as Christians, we often work hard for little results, and there is rest, but there is also rest in the Lord, and how that is different. The Bible talks (this is now me and not the pastor’s sermon talking) about Peace in Christ, Peace in the Lord, Peace for those who follow God. I think it often gets confused with world peace and freedom from battle. But looking at church history that is not what followers of Christ get; they often get persecution and hardships. That isn’t peace. But, Christians have peace and it’s not in the situation around them, but from being with Christ and in the hope of what is to come. One of my favorite Bible verses is 1 Peter 1:13 “Therefore, with minds that are alert and fully sober, set your hope on the grace to be brought to you when Jesus Christ is revealed at his coming (NIV).”

My pastor this morning also had a sermon illustration of a hiker who got injured in the mountains and when his rescue helicopter showed up, the rescuer became injured and the hiker helped his rescuer. We are often like the hiker, injured (or ill), but that doesn’t mean we lose our ability to assist others. Since I’ve had cancer I received many wonderful encouragements (from letter and flowers to visitors and prayers). I have often felt what do I have left to give? I am no longer strong and full of energy. I am no longer reliable and being able to make plans and keep them. It was a nice reminder that sickness does not make one helpless, and that there are many ways God can use this.

So putting both together was inspiring. 1 – resting in the Lord. Once again God has a plan and He is in control and we shouldn’t need to worry. And 2 – Even though I’ve lost some of my health, I still have plenty to give.

This evening we are spending time with family and praying that this week things go okay.:)

So, more prayers are needed once again to make the Cancer go away.

Much love,

Betsy

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i https://open.substack.com/pub/concerningcancer/p/medical-note-be-the-captain-of-your?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ii Id.

iii https://open.substack.com/pub/concerningcancer/p/betsy-becomes-a-customer?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

iv https://ajph.aphapublications.org/doi/full/10.2105/AJPH.2011.300187

v Id.

vi https://www.verywellmind.com/an-overview-of-the-dunning-kruger-effect-4160740

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The weeks following Betsy’s colon resection were good weeks. Colon resection is a major surgery, but her colon resection was nowhere near as major as her liver resection. Her previous experience with liver surgery made the colon resection seem relatively easy. She felt pretty good; so we decided to spend time traveling to family.

For the past six months, we had not spent much time with our families. For both of us, family time had always been a priority. We did not know what the future held, but we were pretty confident that Betsy should be doing chemo again pretty soon. That meant she would not feel good, which, in turn, meant we should see family now if we wanted to see them anytime soon.

It was also nice to get out of the house. We had spent so much time inside the house with Betsy’s incapacity from chemo that we were both a little stir crazy.

On a completely different note, we had learned a few weird things most people do not think about. I had learned a lot with Betsy being sick, like how scary the emergency room is with an immunocompromised person since the ER is full of sick people. That is not terribly weird, but there were some weird lessons.

The first was that it is a no-no to wear a scent in the chemo clinic or any number of other places with really sick people. By a “scent,” I mean something like cologne, perfume, after shave, even scented soap or shampoo. When someone is quite sick, certainly patients on chemo who almost always have nausea, the scent can make them feel worse.

The second was that flowers are verboten in the ICU. There are several reasons for this, but the main ones are possible infection and because some people in the ICU can react to them even absent an infection. This was a shame because several people brought Betsy flowers in the ICU, and we had to throw them away. That was frustrating for a lot of people because they had just bought them in the hospital gift shop, but them’s the rules.

The last thing was that fresh fruits and vegetables are not a good idea shortly after a colon resection. Betsy’s surgeon explained that the fiber in fresh fruits and vegetables can be hard on the colon after a resection. So, she had to give it some time before she could have fresh fruits or vegetables.

Those were weird lessons, but they were worth learning since things were looking up. We planned to ablate Betsy’s last liver tumor soon, do six months of chemo, and then wait and see what happened. If learning those lessons resulted in a cure or long term remission, they were worth it.

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MEDICAL NOTE – FINDING THE BEST DOCTOR PART 1

A question a lot of people ask is, “Who is the best doctor,” or “What is the best hospital.” I can answer that categorically. There is no such thing.

This is not to say there is not one specific hospital or even one specific doctor who is the best for you right now. Those last three words are the key, though.

There is no one BEST doctor in the world. There is no best oncologist or surgeon or whatever specialist you want to know about. Breaking it down further, there is no single doctor who is best at any one type of cancer whether it be chemo or surgery or radiation or anything else.ⁱThere is certainly no best cancer doctor, whatever that means, in the world.

I say this because there are too many issues and variables to say one guy is best. This does not stop patients from asking, and I get it. They want to know where to go to get the best odds. If only it were that simple.

Maybe there is a doctor who is best for you, but who that doctor is will vary depending on a host of factors. What is more, the doctor who is best for you may well vary from time to time.

1. When trying to figure out which doctor is best for you, the first thing you need to determine is what your biggest treatment need is right now. Every cancer patient has multiple needs. All need to treat their cancer. All need to manage side effects. Some need mental health help. Some may have other health conditions to manage, and more. No doctor can be expected to be the best or even good at all those things.ⁱⁱ

A doctor who is the best at an issue that is not something you need is great, but that is not the best doctor for you. Even if you need that doctor in the future, if that is not what you need right now, that doctor is not the best for you.

Even within those broad categories, you need to get much more granular in determining your biggest need. Saying something vague like, “Treating your cancer,” is much too broad. Specifically, what exactly do you need?

Is there a specific organ that must be handled? Are there specific genetic mutations that are giving you the most grief? Are the side effects preventing you from getting treatment? Do you need a systemic treatment while experiencing significant treatment resistance?ⁱⁱⁱ

What your biggest need is will likely vary from time to time. My late wife’s situation is illustrative.

When she was first diagnosed with cancer, her biggest need was liver surgery. However, in order to get liver resection, she needed systemic control of her cancer; so that control was her biggest need.

As she was getting systemic control, her biggest need shifted to managing the toxicity from her treatment because the treatment was taking too big a toll on her. Unfortunately, we did not adequately meet that need. In retrospect, she could have benefited from several more rounds of chemo, but she could not have handled more chemo.

After several months, when she had somewhat gotten systemic control, her need shifted to addressing her liver mets directly. Once the liver was addressed, her primary tumor in her colon became the most pressing issue. A different doctor was the best one to accomplish each of those needs.

2. Once you determine your biggest treatment need, figure out the best treatment for that need. You might have thought I was going to say once you know your treatment need that you know which doctor is best, but that is not correct. One of the most important things for any patient to understand is that each doctor and each hospital make decisions regarding which treatments within their specialty they are going to provide.^iv So, just because a doctor deals with your biggest problem does not mean that doctor is the best doctor for you. A key element to finding the best doctor for you is finding the doctor who provides the best treatment for your biggest need.

Again, my late wife’s experience is illustrative. I have previously said that we made a catastrophic mistake with treating her liver.^v Specifically, we did NOT get her the best treatment for her liver, which was Hepatic Arterial Infusion (HAI).

For her stage and condition, she had a few options. In order of value to her, they were: (1) liver resection with HAI, (2) liver transplant, (3) liver resection alone, (4) systemic chemo.

To be honest, the liver surgeon we got was realistically one of the very best. He was one of the “best” at one of the “best” hospitals in the world. I know we viewed him as being exceptionally skilled because he could resect a tumor that two other liver surgeons said they could not. So, he was at least really good.

Furthermore, he was in the right specialty. The best type of doctor for Betsy was a liver surgeon. What luck, she had one of the very best liver surgeons in the world willing and able to operate on her.

However, he was not the best doctor for Betsy because he did not do the best or second best option for her. It does not matter if he has better technique than every other liver surgeon in the world because the fact is the surgery he did was definitively not Betsy’s best option. The moral is that picking the best treatment is a major component in finding the “best” doctor for you right now.

2.a. How to determine what the best treatment is

The previous section might make it sound like it is easy figure out what the best treatment is. To be sure, sometimes that is true. Often, though, it is not so easy, and you may get conflicting opinions.

I have written several articles relevant to this decision. The first and most important thing to do is to weigh the evidence of efficacy and of harm. https://open.substack.com/pub/concerningcancer/p/weighing-the-evidence?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

The short answer is that you want to know how effective the treatment is and how strong the evidence is supporting that benefit. You then compare it to how toxic the treatment is and how strong the evidence showing that harm is. You should weigh the risks versus rewards and the strength of the evidence for each to figure out which treatment is best for you.

In reviewing the evidence, you will naturally get some, most, or even all of your information from your doctors. You should absolutely be asking your doctors questions. However, you should also understand their biases and limitations. These can greatly affect their presentation of the evidence and even their grasp of the medical literature.^vi

For instance, a huge number of oncologists tell patients exactly in my late wife’s position that chemotherapy if their best treatment option; sometimes they say it is the only option. They do this without consulting any other doctor or even sometimes contradicting what other specialists said at the tumor board.^vii This is maddening because Betsy was not unique. Almost every colon cancer patient with metastases confined to the liver would be better served by other treatments if they can get them.

So, do your own research. Consult the guidelines.^viii Find patient groups that are full of knowledgeable patients (note, I am specifically saying you want patients who know what they are talking about; many groups are full of people promoting quackery, so caution is warranted).^ix Look things up on the internet; “Doctor Google” is not necessarily always wrong. Last but by no means least, speak to doctors with differing specialties and at different hospitals. You might be surprised what you find.

2.b. The “best” treatment is really a ranking

I have been talking about the “best” treatment, but getting the absolutely best thing for you may not be possible. For any number of reasons, some of which are discussed below, you may not be able to access the actual “best” treatment. Rather than holding out for the absolute best one if you cannot do it, you should instead create a hierarchy of treatments.

That is what I did above in laying out my late wife’s options for her liver. Once you have your hierarchy, you pick the best one you can feasibly do. The one that is theoretically best is not the best for you if you cannot actually do it.

3. Determine what limitations you have

EVERYBODY has limitations on what they can do. There are all kinds of limitations. You are limited by money. You are limited by time. You are limited by the ability to travel. You are limited by your own health. You are limited by government regulations. The limitations go on and on.

Often the biggest limitation is money. Never, ever think you are not limited by money. You absolutely are. I do not care what your insurance is or your personal financial situation, money is always, always a limiting factor even if you do not realize it.

Now, it may not matter in your particular case. Maybe the absolutely best treatment is routinely covered by your insurance company. Great!

Not everyone is so lucky, though. Sometimes, the best treatment is one you need to pay out of pocket and have no way to afford it. That certainly happens to some people.

Some are able to figure out a way to pay for it or get it covered, but others can never do it. So, this can be an issue.

Distance can be a limitation. It is possible the best treatment is ten minutes from your house, and you feel fine to drive it. Of course, the best treatment could also be halfway around the world with no practical way to get there.

A really big limitation, though, is health. For example, maybe a giant surgery will cure you. If you are not healthy enough to survive it, though, that surgery is irrelevant to you.

Ultimately, you rank your treatments so that you can see what is the best one GIVEN YOUR LIMITATIONS. We all have limitations. Sometimes, you can get around them; other times, you cannot. If you cannot, rather than complain about the unfairness of it, you move on down your list to the next best treatment.

4. Pick the best doctor

This is probably actually the hardest thing to do. In fact, part two will be dedicated to this very question. Fortunately, if you have followed the steps above, you are already likely to get a treatment that significantly helps you. Make sure your doctor gets you that treatment, and you have gone a long way to getting the “best” doctor or hospital already.

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CONCLUSION

Selecting the “best” doctor or hospital is not simple. The fact is that the doctor or hospital or doctor that is best for you may change from time to time. Do not be afraid to switch doctors or hospitals if need be.

Never forget that your doctor and hospital are independent contractors.^x That may make it sound very transactional, but this does not mean you cannot have a rapport with your doctor. It does mean, though, that your doctor has a job to do for you. If your doctor is not the one best equipped to do the job, your life depends on you going to a doctor who is better equipped to help you.

Doing this is not a criticism of the doctor nor does it mean you should close the door on that doctor. Just because you need X now does not mean you will not need Y later. The doctor who is not best for you now may be best for you later.

Also understand that the best doctor for someone else is not necessarily the best doctor for you. If you want the “best” care, you need to take careful stock of your own personal situation. Once you have a good handle on what you need and what treatment best addresses that need, you have gone a long way toward finding the “best” doctor.

BETSY IN HER OWN WORDS

33 years ago around nine o’clock in the morning they started getting my mom ready, by 9:30 I was being rocked by my daddy in the nursery and they were sewing up my mom. After having two strapping lads, they got the most perfect baby ever... ME?.

A year ago I was hanging out with family and planning a wedding on this day. Today I am home, recovering and just excited to go out for dinner with my hubby. This has been a year that has not gone as planned, but it has been good. (When do things ever go as planned anyways? When I worked at camp there was a quote posted for all the staff to see... “Want to see God laugh? Make plans”). I like birthdays. They are like New Years, a yearly day to take stock to look back and see what God has done in the past year and to look forward with anticipation of what He’s going to do next, and look inwardly to see what I’ve done and learned and to see where I still need to grow (for example Daniel wishes I was a better housekeeper, maybe some day I’ll learn to see the mess). Today I get excited about pooping (like I’m a potty training toddler) and going for walks without hurting and watching my incisions heal. A year ago these weren’t such a big deal.

Perspective is an interesting thing. My recovery from colon surgery has felt almost like a walk in the park compared to my liver one. I move easier, have less pain, am more with it, spent less time in the hospital. Of course my incision is half as big and I spent half as much time in the operating room. I think my nurses were surprised at how little pain medication I needed. Daniel thinks and I agree that if I had had the little surgery first I would have found it a lot more difficult than I do. Though, my energy is still limited and my incision still hurts for the occasional oxycodone.

Now we get to do a little more waiting and recovering.

Much love,

Betsy

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i Actually, there may be one single best doctor for some very rare cancers simply because there may literally be only one doctor in the world with the slightest idea how to treat it. For basically everything else, the statement there is no one best doctor is true.

ii https://concerningcancer.substack.com/p/what-does-that-guy-do?r=xwnqz

iii https://concerningcancer.substack.com/p/chemo-can-stop-working?r=xwnqz

iv https://open.substack.com/pub/concerningcancer/p/gratitude-for-the-poison?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

v https://open.substack.com/pub/concerningcancer/p/one-plan-to-rule-them-all?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

vi https://open.substack.com/pub/concerningcancer/p/medical-note-be-the-captain-of-your?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

vii https://open.substack.com/pub/concerningcancer/p/another-change-of-plans?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

viii https://concerningcancer.substack.com/p/one-plan-to-rule-them-all?r=xwnqz

ix https://open.substack.com/pub/concerningcancer/p/wheres-the-evidence?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

x Id.

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June 2015 was my wife’s colon resection. The month before, Betsy had undergone a very big liver resection. She had been hospitalized for a week, including several days in the ICU. We were expecting a much easier time with the colon.

In the past month, Betsy had lived a nearly normal life. She was a little low on energy as her liver regenerated, but she had been able to participate like she had not pretty much the entire year so far.

That was fortunate because the last month had been packed full of activities. We had been to two funerals. The first was for Betsy’s grandmother who had survived supposedly terminal cancer decades earlier, and the second was for the mother of one of Betsy’s closest, who had just died of cancer.

On the bright side, Betsy had gotten to do some fun things, too. One fun thing was that she was able to babysit my year and a half old niece. Betsy had babysat her with me on one of our first dates when my niece was a month old, and, over the past month, we had babysat her several times a week, every week. She had driven us slightly crazy by making an animatronic frog sing and dance to “Fever” literally dozens of times per hour, but it was a good crazy. She was just a kid being a kid playing with her aunt and uncle.

For the past year, we had babysat her dozens of times, but Betsy had quite literally just been the sick woman in the corner. She had not been able to do much aunting. Over the last month, though, she had actually been able to be an aunt to my niece, and she loved it. This was a big change.

There was another big change. Betsy’s hair had started to regrow. I have not discussed it much, but Betsy had gone bald while on chemo. Her long hair had been one of Betsy’s few vanities, and losing it had been a particularly bitter blow. Getting it back was a huge shot in the arm.

Shortly before her colon resection, Betsy got another boost. She had a pre-op colonoscopy, and the doctor was unable to find her tumor. He only knew where the tumor was because the doctor who did her first colonoscopy had marked it. The plan was still to cut out that section of her colon, but it was great to know the chemo had shrunk her tumor that much.

While all this was good news, it can at an unexpected cost. Every day for months, Betsy had gotten at least one card in the mail every day. Often, she got multiple cards.

As someone who never has put much store in cards, I never really paid attention to them. However, for Betsy, these cards had tremendous meaning. Every single card was read, usually over and over again. She stored all those cards and kept them next to her favorite seat.

Betsy was a very sociable lady, but her chemo had forced her to become a hermit. Getting those cards let her know that people still cared about her. They were her only real connection to many of them because she lacked the energy to see them or even call them.

Initially, she had gotten many cards a day, every day. After the initial outpouring of love and support, those cards had dwindled, but at least one card still came every day. After six months of cancer, Betsy had her first day without a card, and she was profoundly disappointed. The reality is, life goes on for everyone else, even though it had essentially paused for Betsy. After awhile, it is kind of natural to forget about the sick lady you have not seen in months, and people kind of forget that the patient is still in the midst of a calamity.

After all that, Betsy had her colon resection. With a colon resection, a big chunk of the colon is taken out of the colon, wherever the tumor is, and the other sides are sewn back together. In Betsy’s case, about eighteen inches of her colon was removed.

Compared to the liver resection, it was a breeze. She never went to the ICU, she had no blood transfusions or crash cart usage. She just had some pain and precautions with certain fibrous foods since they might be hard on her colon for a few weeks.

It turned out, too, that the surgery was a really good idea. Just because the surgeon had not been able to see the tumor did not mean it was not there. It turned out the tumor was still active cancer, which we only found out after the surgery.

With that surgery done, she had one last procedure, a liver ablation, to look forward to. Then, she would follow that up with a few months of chemo and then, hopefully, she would be cancer free.

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Medical Note – Prepping for Recurrence

As I have mentioned before, surgery is the most effective treatment for my wife’s cancer. It offered a real, albeit slim, chance at a cure. It offered a much better chance that she would live at least five years.

Surviving five years does not mean one is cured, though. Recurrence is still a major concern regardless of whether the patient has surgery or not. As I pointed out in a recent post, even if all the cancer seems to be gone, current detection methods are insufficient to determine if one is cured.ⁱ Thus, cancer patients often live in the very reasonable fear that tumors will reappear, even if they are NED.

I would hope it would go without saying that a recurrence is bad. How bad it is depends on a host of factors, but I really cannot see the scenario where a recurrence is a good thing. There is a lot that can be said about recurrence, but one issue that is rarely discussed is making treatment decisions that can not only get you to NED but also set yourself up to detect the recurrence sooner rather than later.

It is generally assumed that early detection of recurrence is better than seeing it later.ⁱⁱ While the data proving this is a bit lacking, I think it makes sense. If you catch it early, it is less likely to have spread. That should mean better treatment options are available and yield better outcomes.

Besides the obvious impact on survival, early detection of recurrence has another benefit. It brings some ease of mind. I do not mean it brings complete ease of mind because it certainly does not, but it brings some ease of mind. This may seem trivial to some who have not been in the position of needing to be on the lookout for cancer recurrence, but, I assure you, knowing you have a good ability to detect recurrence early does quite a bit for your mental state.

Fear of recurrence is a major concern for many, probably most, cancer patients who get to NED. In fact, more than you might think end up with a crippling fear of recurrence.ⁱⁱⁱ I do not see how you can ever eliminate all that fear, but one thing you can do to limit it is to know you have a good method of detecting it.

Good detection methods also cut down on the stress and risks of uncertainty regarding recurrence if one is suspected. It is not uncommon that a recurrence might be suspected, but the evidence is not definitive. It is psychologically brutal and can possibly lead to a poorer prognosis to have a suspected recurrence but not be definitive.

For good reason, few doctors want to treat a recurrence unless they are sure there is actually a recurrence. That can lead many of them to wait until there is a lot more progression than you would want if the evidence is not entirely clear. Besides the fact this is likely to lead to a worse outcome and increase the risk of death, that waiting is extremely stressful. Not knowing is often worse on the psyche than knowing there is a recurrence.

What many people do not consider in their initial treatment of cancer is how their treatment decisions affects the ability to detect cancer in the future. If you are undergoing a treatment that is potentially curative, if possible, I think you want to prioritize treatments that make it easier to detect any recurrence.

For most solid tumor cancers, scans that actually look at the body are the standard technology used to look for recurrence. Sure, many clinics look for elevated tumors markers or ctDNA, but they usually will not act unless and until they see something on a scan (at least, this is the case for many solid tumor cancers). This means that most patients are reliant on a scan that shows an actual image of the cancer, e.g. a CT, ultrasound, or MRI. So, all other things being equal, you want to do things that make those scans easier to show cancer.^iv

In this regard, surgery frequently offers a major benefit over a lot of other treatments. Because, ideally, resection removes all of the tumor, it leaves behind only noncancerous tissue (hopefully). This means that, when you look at something like a CT scan, if you see something that looks like a tumor, you can have greater confidence that is a recurrence than if you were looking at tissue that had already looked like cancer.

However, a lot of the other treatments can leave tumors behind. Ablation traumatizes the tumors, hopefully to death, but the tumors are still there. Likewise, a lot of the other treatments are designed to kill the tumors, but a portion of the tumor may still be there, even if it is “dead.” This necessarily means there is guesswork when looking at something like a CT scan because you will see the tumor on the scan. The questions the doctors need to answer are things like, “Is that tumor actually growing,” or “has that tumor changed its appearance.” That can be a lot harder to determine than simply looking at the scan and seeing if there is a tumor or not.

To be sure, this is not foolproof. Surgery can leaves wounds, and those wounds can look an awful lot like small tumors. That was the debate Betsy’s liver surgeon had with himself. He saw things on her liver and had to guess if they were tumors or wounds from the surgery.

Other treatments do not have that same scarring. So, in some cases, those other treatments may be the better option if they are otherwise equal to surgery. Nonetheless, for many people, removing the tumor makes it much easier to determine if there is a recurrence.

CONCLUSION

Plenty of patients will do treatments that may be a cure. That is great. Many of them will have a choice of treatment options. That is also great.

There are a lot of things to consider when deciding on a potentially curative treatment. What are the odds it will prove curative? What are the side effects? What are the risks? Those are all valid and common questions. You should absolutely ask those questions.

There is another question you should ask, though, and that is, “How does this treatment affect the ability to detect a recurrence?” Getting to NED is a big step, but it is only a step. Recurrence is one of the great bugaboos of cancer, and detecting recurrence sooner rather than later may make a huge difference. Knowing you have the best possible ability to detect any recurrence can do wonders to ease your mind and may even be the difference between life and death.

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BETSY IN HER OWN WORDS

3 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort,

4 who comforts us in all our afflication, so that we may be able to comfort those who are in any afflication, with the comfort with which we ourselves are comforted by God.

5 For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.

6 If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer.

7 Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort.

8 For we do not want you to be unaware, brothers, of the afflication we experienced in Asia. For we were so utterly burdened beyond our strength that we despaired of life itself.

9 Indeed, we felt that we had received the sentence of death. Buth that was to make us rely not on ourselves but on God who raises the dead.

10 He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again.

11 You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many. - 2 Corinthians 1:3-11 ESV

I was reminded earlier this week when talking to my dear friend XXX on the phone of how far I’ve come since last November. It is truly a miracle. Talking to my sister-in-law, XXX, this afternoon she shared that she had read the above passage earlier today and it made her think of me. I’ve had some sufferings this past year, and my family along with me. But Christ has been present through it all and even healed me. Daniel and I made a trip up to XXX (where I grew up) and to my dad’s church. Most of the people we saw on Sunday commented on how good I looked and how they have been praying for me. Against, this evening I was on the phone with another good friend whom I traveled to Moldova with and she had met up with another mutual friend in Texas who entire bible study has been praying for me. Thus the point was driven home, many will give thanks because of me. I once thought this meant being persecuted for good deeds and deliverance from evil (which for many this may still be true), but I think, passively getting cancer and allowing God to heal me has done as much as any of my good deeds.

Tomorrow I go in for my second surgery in 6 weeks. I keep getting asked how I feel about it. Well, I was busy enjoying the time between by visiting people and shopping with my sister-in-law, XXX. I’ve learned what it is that God gives us enough for each day, and to not worry about tomorrow. When I was on chemo, I didn’t know how I would get to the end, but I could make it thru the minute, hour, day and we had such success I got off early to recover for surgery.

If all goes well I’ll have an ablation in 2-4 weeks and that could make me cancer free. I tear up just thinking about it.

If God has other plans... Another good friend of mine lost her mother last Friday (to an aggressive brain tumor). I was privileged to be able to attend her funeral on Monday. It was a lovely testament to her mother’s life. This makes the third funeral I’ve attended since my diagnosis last November. I had a few thoughts of “is this what my funeral will be like” and “I’d like that sung at my funeral” as well as “heaven is going to be wonderful.” I had to remind myself that this cancer will not be the death of me. I am fully hoping for a recovery and cure and a long, God-glorifying life with my husband, but God may have other plans. My 6^th grade Math teacher used to say the only thing we HAVE to do is “pay taxes and die” (but is we didn’t do our Math we’d get a bad grade). So if God has other plans, I suppose there are worse ways to go. XXX (my friend’s mom) made it long enough to hold her baby granddaughter, made lots of good memories knowing her time was limited, was surrounded by her family at the end and is now enjoying the presence of God.

Well, hopefully, I’ll be giving you all an update tomorrow or the next day on how colon surgery compares to liver surgery. Prayers for surgery and coping with all the stress on my family and friends would be appreciated.

Love, Betsy

i https://open.substack.com/pub/concerningcancer/p/farid-fata?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ii See e.g. https://cliffordclinic.com/detection-of-recurrence-in-cancers/

iii https://www.cancertherapyadvisor.com/factsheets/cancer-recurrence-statistics/

iv All other things are NOT always equal. So, bear that in mind.

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Medical Note – There is No Money in a Cure?

Something I hear a lot is, “There is no money in a cure.” The people who say that are expressing the belief the major drug companies are refusing to cure cancer because there is more money to be made in treating cancer than in curing it. They believe the “cure” is known but is being withheld. I think that is incorrect.

How much would you pay if you could cure your cancer? I think a lot of people would cash in their retirement accounts, sell their houses, and bankrupt themselves to get something they knew would cure their cancer.

Of course, the reality is that most people do not pay out of pocket for their medical care. Their insurance company does. What do you think your health insurer would pay? I think it would depend on the patient’s survival odds, but if we just focus on those with low odds, I think they would pay quite a bit.

What does it mean to “cure cancer?”

A lot of people talk about a “cure” for cancer. We do not all mean the same thing, though.

To be sure, right now, a great many patients are cured of their cancers. They do treatment, and the cancer goes away without ever coming back. That is a cure.

The fact some cancer patients are cured does not mean there is a “cure,” though. A cure in my view means that it works basically every time.

Think of it kind of like a bacterial infection. We, meaning humanity, have a cure for bacterial infections. If you get one, you get an antibiotic. So long as you take the right one long enough, it kills all the bacteria, and you do not have an infection anymore. You might get a new one in the future, but the existing one is dead.

This treatment works for over 99% of people That is a cure in my book. We do not have that in cancer.

Yet, a lot of people say there either is or could be a cure but for the fact that “there is no money in a cure.” Is that true?

Insurance Math

Here is a little math. My late wife’s insurance company paid roughly $1.5M for her cancer treatments. That means they were paying tens of thousands per month with no certainty when it would end. In fact, in the early going, they were paying much more than just tens of thousands.

In the first four months, when she was doing the most aggressive chemo regimen she would do, her insurance company paid $170,000 per month just for the chemo and the palliative treatments to get her chemo and basic labs.ⁱ That does not include scans, biopsies, colonoscopies, and more. That brings the total paid in one third of a year to $680,000 but does not include all bills.

So far in my narrative, I have gotten through her liver surgery. The bill for that plus the hospital stay was about $250,000. That brings the total paid to $930,000 ($680,000 + $250,000) or so. This does not include any future payments, like the imminent colon resection and hospital stay or the planned future chemo to follow that resection.

In other words, in Betsy’s insurance company’s best case scenario, it was going to pay over a million dollars for her care with no guarantee that would be their total exposure. What would happen if they could pay less? What if they could get cost certainty?

Certainly, I would expect them to be wiling to pay hundreds of thousands per patient if they could reliably cure cancer. I do not say that based on any kind of benevolence but out of cold, hard business reality. Paying tens or hundreds of thousands of dollars per month with no idea when such payments will stop wreaks havoc on your business. Insurance companies routinely pay a lot to know their costs are capped when the potential payout is very large.

The highest grossing drug for any malady in 2024 was the cancer drug Keytruda. It brought in just under $30 billion.ⁱⁱ Keytruda is a cure for some people, but it is not a cure for a great many. So, we have a great comparison drug.

The annual price per patient is around $200,000, and many of those patients will treat for years (not necessarily all with Keytruda but years of expensive treatments nonetheless).ⁱⁱⁱ So, it is logical to assume an insurance company would pay at least that much per patient for a cure because curing cancer caps their cost.

In 2023, it is estimated that 613,349 Americans (just Americans, not the rest of the world) died from cancer.^iv If we assume that only those who would otherwise die within the next year get the cure (not a good assumption, but I am trying to be very conservative here), and if the insurance companies agree to pay $200,000 per patient (again, not a good assumption, but we know they will pay that), the drug manufacturer is looking at revenue in excess of $123 billion dollars ($200,000 x 613,349) in one year just in revenues from American health insurance companies.

In fact, I suspect the health insurance companies would pay much more than that because of the cost certainty involved. Remember, in half a year, my late wife’s insurance company paid just under $1,000,000 with an unknown amount still needing to be paid. So, her company is obviously incentivized to pay something more than $200,000. Paying $500,000 would have been a bargain for her health insurer. In fact, paying $1,000,000 would have been a good deal for the company.

If insurers paid $500,000 per patient, that total sum comes to over $306 billion per year. If the insurance companies pay $1,000,000 per patient, the revenue is $613 billion per year.

Keep in mind, that is just from America. I would expect this cure to be made available worldwide and to result in a significant multiple on that revenue. The revenue could easily be in the trillions. Each year. For one drug.

To put it into perspective, the largest drug manufacturer, Johnson and Johnson, made a little over $94 billion in 2025.^v That is their total revenue across all product lines, services, etc.

In other words, if a pharmaceutical company found a cure, the revenue from the cure would instantly make that manufacturer the most profitable drug company in the world, by a lot. That would hold true even if the company did nothing else. In the worst case scenario, its revenue just from one drug would still dwarf that of the next biggest company from all of its drugs.

Imagine if you are the drug manufacturer and could make that kind of money. I think you would do it in a second if you could.

I do not think my numbers are high. I think they are low. It would not shock me if insurance companies were willing to pay much more than $200,000 per patient for a cure. After all, they are probably paying much more than that already for every terminal patient, much as the insurance company did for my wife.

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What about complimentary and alternative treatment?

While I am saying I think major drug companies would absolutely cure cancer if they could, if for no other reason than because it would be wildly profitable, that does not mean there is no benefit to be had right now from complimentary therapies (if you have read my previous articles, you know I am not a proponent of alternative treatments, assuming you do not include clinical trials in the definition of alternative treatment). I am saying, though, I do not believe complimentary or alternative treatments are cures on their own. I would suggest complimentary treatments are an important piece of the puzzle that can result in longer life and sometimes even a cure for some people, but they are not reliable cures on their own.

I realize there are those who claim some cheap treatment can cure cancer. They go on to claim Big Pharma is keeping the cure secret because the treatment is not profitable. Is that true?

I do not think so. I think that, if there were a known cure, a major pharmaceutical company would not cover it up. Instead, I think they would find a way to monetize it.

The way drug companies make money is by patenting treatments. A patent gives them a legal monopoly on the treatment for 20 years unless extended. Because the patent holder has a legal monopoly, the patent holder can make astronomical profits, profits that evaporate once the patent expires.

As a result, the major drug companies have become experts at obtaining and extending patents. In many ways, this is a core part of their business.

The most likely way a major drug company would monetize a cheap cure is to essentially engage in “evergreening.”^vi Evergreening happens when a drug manufacturer makes a slight tweak to an existing drug, whether it be changing the formula slightly, using a new delivery method, or some other slight change that “improves” the drug in some way that can be used to extend a patent.

I think they would do something very similar with an supplement or generic drug that was proven to cure cancer. In short, they would find some way to make the cure patentable and would patent it. Then, they would sell it at an extraordinary profit.

This is similar to what some smaller drug companies are attempting to do with the supplement nicotinamide mononucleotide (NMN). NMN is widely touted as a longevity supplement. It has been sold for years as a supplement, and it is so effective that several drug companies have decided to attempt to patent it.^vii

The FDA got on board and banned the sale of NMN as a supplement for several years while the drug companies worked on creating a drug but reversed course last year in the face of a lawsuit.^viii Currently, NMN is legal as a supplement, but this is far from over.^ix The drug companies are still working on creating a drug, and, once they do, you can be confident they will make money hand over fist, either by getting the FDA to ban NMN again or by overwhelming the supplement with marketing.

This is just for NMN a supplement that no one claims cures cancer. Dramatically less money is at stake with NMN than with a cure for cancer. If small drug companies can get the FDA to ban a heretofore entirely legal supplement just so they can research a drug, imagine what a major drug manufacturer could do if it found a cure for cancer.

In short, while I think some supplements and off-label drugs may legitimately be of some use in the cancer context, I do not believe the major drug companies are hiding that one or more of them are a cure. If they knew of a cure, they would figure out a way to make money off it.

CONCLUSION

This is all my way of saying I do not believe the major drug companies or doctors or anyone else is hiding the cure for cancer. There is way too much money to be made from a cure.

i https://open.substack.com/pub/concerningcancer/p/farid-fata?r=xwnqz&utm_campaign=post-expanded-share&utm_medium=web

ii https://www.genengnews.com/topics/drug-discovery/top-10-best-selling-drugs-2/

iii https://www.untravel.info/how-much-does-keytruda-pembrolizumab-cost-in-the-us-in-2025-prices-insurance-amp-savings-options

iv https://www.cdc.gov/cancer/data/index.html

v https://www.ipharmacenter.com/post/top-10-pharmaceutical-companies-by-revenues-2025-ipharmacenter

vi https://www.commonwealthfund.org/publications/explainer/2025/nov/how-drugmakers-use-patent-process-keep-prices-high

vii https://litelongevity.com/nmn-fda-ban-update/

viii Id.

ix Id.

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