I run cancer clinical trials at my institution, and I could immediately see how this might create some serious ethical problems. It just did not pass my sniff test.

But…gut reactions are not always right, so I spent more time thinking through the arguments in favor of it. I was also surprised when I read ’s support for the idea.

Sensible Medicine

Betting on clinical trials

The debate about whether online platforms, such as Kalshi, should be allowed to create a marketplace to bet on clinical trials is confused. Major news outlets, such as the New York Times, depict this as a dystopian scenario where gamblers hope drugs fail and patients suffer. The news coverage has forgotten that America already allows bets to be placed…

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a month ago · 58 likes · 6 comments · Vinay Prasad MD MPH

To be fair, Dr. Prasad makes some valid points. Our clinical trial system needs serious reform. I agree that some studies use weak or outdated control groups, although I see this far less often in modern trial design. And some trials do seem designed more to produce a positive result than to answer the question patients and physicians really care about.

Prediction markets might expose some of that.

Kalshi has also put some reasonable safeguards around its initial pilot. The markets are limited to late-stage trials, they do not open until enrollment has closed, employment verification is required, and people with material nonpublic information are prohibited from trading.

But I still think this is not the way to fix it.

Why would we rely on strangers placing bets to pressure companies into designing better and more ethical trials? That responsibility belongs to regulators, ethics committees, investigators, sponsors, journals, and health systems that open these studies. If a control group is inappropriate, it should be challenged long before the trial opens. It should not require a betting market to expose the problem after patients have already enrolled. The market might embarrass a sponsor or influence a future trial. It cannot fix the study those patients are already in.

A market can estimate whether a trial will meet its stated endpoint, but it cannot tell us whether a control arm is ethical, whether an endpoint is clinically meaningful, or whether the outcome will actually improve our patients’ lives. Strong early data may make us fairly confident that a treatment works while important questions remain about the size and durability of the benefit, toxicity, quality of life, overall survival, or which patients are most likely to benefit.

Clinical equipoise is much more complicated than 50/50 betting odds.

I also think Prasad is partly right about the stock market. A small biotech company with one lead product can function almost like a wager on one clinical trial. But the fact that people can already profit indirectly from clinical trial results is not a great reason to create an easier way to do it. Expanding that financial incentive does not somehow make the system more fair or ethical.

Clinical trials involve a huge network of people: investigators, research nurses, coordinators, pharmacists, statisticians, vendors, sponsors, and referring physicians. Many of us notice small pieces of information along the way—more safety/toxicity letters, unusual protocol amendments, patients remaining on treatment longer than expected, or a lack of communication from the sponsor. Being in the clinical trial arena, I see this every day. While no one person may know the final outcome, once money is attached, this creates a new incentive to gather those fragments, or share them, or exaggerate them, or bet on them. Employment verification and insider-trading rules may lower that risk. I do not think they remove it.

Of course, we hope most people will behave responsibly. But Dr. Prasad has argued for years that our healthcare system is distorted by financial incentives and that people often respond predictably to them. That is exactly why his support for this surprises me.

Systems should be judged, at least in part, by the behavior they encourage.

Creating a direct financial incentive to collect, share, exaggerate, or trade on information from an ongoing clinical trial seems likely to create more of the behavior he has spent years warning us about

One of the biggest risks of all is confusing patients. A market showing a 78% chance that a trial will “succeed” does not mean an individual patient has a 78% chance of benefiting. It only means the study is likely to meet a statistical endpoint. The actual benefit could be small, based on a surrogate measure, or outweighed by toxicity. Whether the result is clinically meaningful—or improves overall survival, something Dr. Prasad has appropriately emphasized for years—may not be known for quite some time. This distinction is already difficult to explain, and I am not convinced adding betting odds makes informed consent any easier.

Patients join clinical trials because they trust us. They accept uncertainty, inconvenience, and sometimes serious risk because they hope the treatment may help them, but also because the knowledge gained may help people who come after them (altruism). We should be extraordinarily cautious about building a new financial market around what happens to these patients.

I agree that we need to address weak trials, misleading endpoints, and inappropriate control groups. But the answer is to do the hard work to fix the system responsible for approving and running them, not outsource part of our ethical oversight to a betting market.

After thinking it through some more, I still land back where I started: this still feels like a terrible idea.

Cancer prevention is something I care deeply about. If you have spent much time reading my earlier articles, you have probably noticed that many of them focus on lifestyle changes that may help reduce cancer risk.

A lot of us in oncology were drawn to this field after watching someone we love go through cancer. For me, it was watching my mom undergo breast cancer treatment when I was a teenager and eventually losing her to the disease. That experience made me think hard about how we might prevent this from happening to someone else in my family.

I have now had two immediate family members develop cancer, along with several close relatives. As I approach 50, I have started thinking more seriously about my own risk. If my goal were to reduce my lifetime burden of cancer, how should I invest my own time and energy to have the biggest impact?

Exercise, nutrition, avoiding tobacco, limiting alcohol, appropriate vaccination, sun safety, and regular cancer screening are all important. These recommendations form the foundation of cancer prevention, but they tell us relatively little about which risks deserve the most attention for a particular person. They also provide limited guidance about what someone might do differently based on their own biology, exposures, or family history.

The tools now being developed may allow us to understand cancer risk more clearly and, in some cases, act on it earlier. Genetics, family history, prior exposures, metabolic health, imaging, and emerging biomarkers can help us develop a more complete picture of a person’s individual risk.

I am increasingly convinced that a personalized approach to cancer prevention makes more sense than offering everyone the same general list of recommendations.

We already personalize cancer treatment

Over the past decade, I have watched cancer treatment become remarkably personalized.

When I meet a patient today, we may use genomic sequencing, immune biomarkers, pharmacogenomic testing, and genomic assays like Oncotype Dx to help select a treatment—or determine if treatment is needed at all. We can use circulating tumor DNA (ctDNA) and liquid biopsy to follow response or detect emerging resistance. These tools can increasingly find evidence of cancer remaining after treatment before it becomes visible on a CT or PET scan.

Two people with the same type of cancer may receive completely different treatments.

Cancer prevention is beginning to move in the same direction.

We are not yet at the point where we can predict with certainty who will develop cancer. But we are getting much better at understanding individual risk and using that information to make smarter decisions: which cancers may require urgent treatment and which can be followed safely, when screening programs should begin, and what type of screening procedure makes the most sense for that person.

Cancer risk is personal

We know cancer doesn’t develop because of one isolated factor. It emerges from what I think of as a person’s “cancer ecosystem”—the interaction among aging, inherited genetics, immune function, infections, metabolism, environmental exposures, and random chance.

That ecosystem looks different for everyone.

Someone with a BRCA1 mutation may need earlier breast screening. A person with Lynch syndrome may need frequent colonoscopy beginning at a young age. Someone without an inherited mutation may have decades of tobacco use, extensive sun damage, or significant workplace exposure to a carcinogen.

All three may benefit from exercise and a healthy diet. But offering them the same prevention plan would miss the risks that make each of them different.

Personalized prevention begins by asking a better question:

What is most likely to place this particular person at risk?

Genetics doesn’t tell us the whole story

Genetic testing has become one of the more familiar parts of personalized cancer prevention. If testing identifies an inherited syndrome, the result can meaningfully impact a patient’s plan. It may change the timing of initiating screening, or the cadence of surveillance, preventative medications, or sometimes prophylactic surgery to remove an at-risk organ.

However, genetics alone often provides an incomplete assessment of overall risk. Most cancers are not explained by a single inherited gene. Cancer can occur within a family even when testing does not reveal a recognized syndrome. Other contributing factors may include undiscovered genetic changes, the combined effect of multiple smaller genetic risks, shared environmental exposures within families, or a combination of these elements.

This is why family history remains so valuable, even though its often just lines that get copied and pasted from one preventative visit to the next.

Simply knowing that “cancer runs in my family” doesn’t tell us very much. Which relatives developed cancer? What type? What was their age at diagnosis? Was genetic testing completed and how extensive was the testing?

We are developing increasingly sophisticated models that can estimate cancer risk. A careful family history helps those models become more accurate and the decisions that follow more useful.

Biomarkers may allow us to act earlier

The part of cancer prevention that I find most interesting is our growing ability to detect biological signals before someone develops an obvious cancer.

In my own practice, I have a habit of looking back through a patient’s chart and trying to identify the first changes that, with the benefit of hindsight, may have been an earlier sign. Sometimes we find the signal, but we simply did not understand its meaning at the time.

A lot of our traditional risk assessments also look backward. We look at the genes someone inherited, cancers that have already occurred in the family, and the exposures a patient may have accumulated over a lifetime.

Emerging biomarkers may help us understand current and future changes in the body.

AI has now enabled the identification of new patterns in cancer development, including novel proteins, immune signatures, epigenetic modifications, and aspects of the microbiome, allowing us to detect alterations in an individual long before cancer appears on imaging or physical examination.

This leads to the idea of cancer interception.

This the idea that we can identify a dangerous biological process while it is still reversible. Or we can we distinguish precancerous changes that are likely to progress from those that can safely be observed. We then may be able to design a personalized vaccine, immune therapy, or metabolic intervention to disrupt that process before cancer fully develops.

To me, these are some of the most exciting questions in medicine. But…they also require a lot of caution.

Finding these abnormal signals helps only if we understand what it means and leads us toward knowing what to do next. Otherwise, we may give a healthy person an expensive test, an invasive or risky workup, and potentially years of anxiety without improving the outcome.

A useful biomarker should do more than tell us that something might be wrong. It must lead to an action that has a reasonable chance of helping.

Personalized does not always mean more testing

I think this point needs to be emphasized. In this space, more is not always better.

For someone at high inherited risk, personalization may mean earlier screening, more frequent surveillance, preventive medication, or surgery. For someone else, it may mean choosing a different screening test or concentrating on a particular exposure.

And sometimes it will mean doing less.

Personalized cancer interception may mean avoiding a commercial blood test that has not been shown to improve outcomes or declining a whole-body MRI without a clear indication. It may mean resisting the temptation to investigate every mildly abnormal biomarker or take multiple supplements marketed as a cancer preventative.

A personalized plan should not simply produce more testing. It should produce better decisions and, ultimately, better outcomes.

The plan should also be dynamic. Family histories do evolve, and new exposures become apparent. Better biomarkers are constantly being developed. As evidence improves, we may need to abandon tests or interventions that once appeared promising.

Personalized prevention should be revisited over time rather than treated as a one-time effort.

Prevention is never entirely under our control

We also need to discuss cancer prevention without turning it into a personal failure.

People who exercise, eat a healthy diet, avoid tobacco, limit alcohol, and complete all the recommended screening tests still go on to develop cancer. Other people live with mutliple known risk factors and never do.

Risk can often be reduced, but it can never be eliminated.

A person with cancer should never feel that the disease developed because they ate the wrong foods, or failed to exercise enough. It should never be because the patient missed the supplement stack that might have saved them.

Cancer is influenced by inheritance, aging, exposures, and biology we are only beginning to understand. Chance is still part of this equation.

Our growing ability to measure risk should allow people to make better choices. It should never leave them with a greater burden of guilt.

I cannot change the cancers that have occurred in my family, and I cannot reduce my own risk to zero. But I can try to better understand my risk more clearly and make thoughtful decisions with the information available today.

That is what personalized cancer prevention can offer.

A new perspective on cancer

Over the next few months, this is the direction I plan to explore more deeply through this Substack.

I will continue writing about cancer treatment and the human experience of caring for people with this disease. But I want to spend more time studying and learning what happens before treatment is needed: inherited risk, preventable exposures, metabolic health, screening, early detection, emerging biomarkers, and the science of cancer interception.

Some of this is already being used in clinical practice. We are working on a cancer interception clinic at our cancer center. But we are moving slowly. Some is this promising but still unproven. Distinguishing between the two will be an important part of this work.

For most of my 15 years in Oncology, I have met cancer after it has already declared itself—after a symptom developed, a scan found a mass, or a biopsy provided the diagnosis.

I aim to spend more time now looking upstream.

Can we better understand who is at risk? Can we recognize dangerous changes sooner? Can we intervene before cancer becomes much harder to cure—or perhaps before it fully develops?

We are still learning how to answer these questions. I would like Curative to be a place where we explore them honestly, without hype or false promises, while never losing sight of the human side of this.

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“You good?”

I looked up from my computer and nodded, “Yep, I’m good.”

Clinic had been busy, filled with its usual mix of complexity and difficult conversations — each patient at very different parts of their journey. This part of my day is mainly to catch my breath and start weeding through my inbox and the results that slowly accumulate throughout the day.

The familiar list appeared in Epic with unread CT scans, PET scans, and pathology results. As I filtered through them by date and time, the first one that appeared was an unread breast ultrasound.

I immediately associated the result with a patient I had met with a few months earlier.

She had just been diagnosed with a recurrence of an aggressive form of breast cancer. This was her second time facing this disease, so she had already experienced the side effects of chemotherapy, the long waits between scans, and a great deal of uncertainty. The news of her recurrence was, of course, devastating.

After reviewing her case with our breast cancer team, we recommended starting back on chemotherapy, this time with a more intensive regimen, hoping it would be more effective in shrinking the breast cancer before surgery again. So, when I saw her follow-up ultrasound in my inbox, I knew what this represented.

Even after reviewing thousands of scans in my career, I still felt the familiar pit in my stomach as I clicked on the result. That pit is a mix of hope, fear, and the reality that the result is entirely out of my control. I understood what those results also represented to her: weeks of side effects, hair loss, nausea and fatigue, and hopes that this would be a result that made all of that worth it.

I opened the report and saw that the breast cancer had not responded to the treatments. It had grown slightly.

The radiologist’s impression was more straightforward: “progression of disease.”

These days, a lot of patients are receiving these results on MyChart at the same time we do. I wasn’t sure if she had read the report, so I wanted her to have the information in context before reading through it alone at home. I sent her a message that I had read the ultrasound and was already working on the next steps with our team, and we would get her back into clinic as soon as possible to discuss a plan together.

This situation isn’t very common, but every oncologist experiences it. Sometimes the treatment we believe gives a person their best chance simply doesn’t work.

These are difficult days for everyone. But I also know it is my responsibility to move quickly beyond disappointment and find the next path forward to help the patient meet their goals.

When we met in the office, I went over things in more detail. I explained that the chemotherapy didn’t accomplish what we had hoped for, but it also helped answer an important question. It told us this cancer was going to require a different approach.

Disappointing news in oncology is rarely the end of the story. Over the years, I have learned that cancer often forces us to adapt. Plans will change, sometimes right in the middle of treatment. As long as we do this thoughtfully and stay aligned with the patient’s goals, there may still be another path forward.

My hope with each patient is to continue down that path with honesty, while acknowledging that uncertainty has grown. Even then, there may still be a way toward a good outcome, and hopefully a cure.

When a treatment doesn’t work, I try to resist the instinct to move immediately to the next option without first asking why.

This is where much of the work happens behind the scenes. I usually start by going back through the pathology, reviewing the scans and biomarkers again, and looking for anything that might explain why the cancer behaved differently than we expected.

We meet again with the surgeon, radiologist, and pathologist to reconsider the case together at tumor board. We still rely heavily on proven treatment pathways, but today we have more ways to ask whether the cancer has changed or whether there is a biological reason to choose one treatment over another. Sometimes a repeat biopsy is helpful to look for new mutations through molecular profiling, changes in the tumor’s biomarkers, or evidence of tumor heterogeneity that wasn’t apparent at the time of diagnosis.

Despite all the advances in technology, sometimes we just don’t find the answer. I often tell my patients that cancer rarely follows the rules and remains frustratingly unpredictable. This uncertainty is one reason why oncology continues to humble me every day.

I sometimes wonder if our patients assume once we leave the room, we’ve already moved on to the next patient. Like each patient is just a blip in our busy schedule. The truth for most of us is that we take these experiences or conversations home with us. We think about them in the car, at dinner meetings, conferences, or on a phone call to a colleague across the country for another opinion. This work often extends beyond the walls of the clinic. None of us want to feel like we’re not doing everything possible or leaving a reasonable option unexplored.

For this patient, we developed a new plan. It wasn’t the one we had hoped for in the beginning, but it gave us a renewed sense of hope and fit well with her goals.

That is really my role as an oncologist. I have to be honest when things don’t go the way we hoped, but I also have to help find a path forward. Sometimes that path changes, but we keep moving together.

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Fred was in his early 70s and was definitely a character. He was warm, funny, kind, and easy to talk to. Even when things were hard and his health was starting to decline, he never stopped being himself.

Later in his treatment course, we reached a point where we knew the cancer was advancing. We were still caring for him and trying to help him feel as good as possible, but the overall direction was becoming more clear.

Around that time, he made a bucket list, and believe it or not, one of the things on that list was skydiving.

He asked me what I thought about the idea.

As his oncologist, I was well aware of his medical issues. He had heart disease, recent blood pressure problems, progressive cancer, and several other conditions that made the idea seem medically risky. He wasn’t exactly who you’d picture as the ideal candidate for jumping out of an airplane.

I did what doctors usually do—I weighed the risks. I thought about all the ways it could go wrong: he could have chest pain, faint, experience a blood pressure issue, or, worst-case scenario, not make it through. I called his daughter, a critical care physician, and she agreed that with everything going on medically, skydiving probably wasn’t the best idea.

So I told him I did not think it was the safest plan. He heard my advice.

And then he went skydiving anyway.

I found out at his next appointment that he had gone through with it. I also found out one of my own nurses had accompanied him, which somehow made the story even better. Not only did he do great, but he also came back and told me all about it.

I can still remember his excitement. He lit up as he told me how incredible it was and how glad he was to do something he had always wanted to do. He had this joy on his face that I can still picture.

And I remember thinking, maybe I got that one wrong?

Maybe not medically wrong, exactly. From a pure medical risk standpoint, I still understand why I was hesitant. This was a high-risk activity for a man with his medical problems.

But cancer care is not only about avoiding risk. It is also about helping people live.

That sounds obvious, but it is surprisingly easy to lose sight of in oncology.

When someone has advanced cancer, the focus in the medical world often shifts to what could go wrong. We carefully track blood counts, watch for infections and disease progression, ask about symptoms, and consider all the risks that might make someone worse: falls, blood clots, dehydration, side effects, oxygen levels, heart issues, and whether they’re strong enough for the next step.

It is a lot, and it is important. But if we are not careful, care can become mostly about preventing bad things instead of helping good things still happen.

I think I was more cautious earlier in my career. Probably too cautious at times. I remember being much stricter about things like whether a neutropenic (low white cell count) patient should go to church, attend a family gathering, or be around grandchildren. My instinct was often to protect, and of course that instinct comes from the right place. Infection risk is real. Some patients are very vulnerable, and there are times when avoiding a crowd or delaying a trip is absolutely the right call.

Over time, my philosophy has changed.

I still talk openly about the risks and share my concerns when they come up. If someone is neutropenic, I make sure they understand that a fever is a medical emergency. If they are planning to travel, we talk through what could get complicated and how quickly illness can change. But these days, I work harder to make sure my caution does not become paternalism.

There’s a big difference between saying, “Here’s what concerns me, here’s what might happen, and here’s how we can make this safer,” and saying, “You shouldn’t do this,” as if the medical risk is the only factor in the decision.

Over the years, many patients with advanced cancer have asked me some form of the same question. Can I take that cruise? Can I travel to Europe? Can I fly to see my grandchild? Can I spend time at the beach? Can I attend the wedding? Can I finally check this off my bucket list?

Earlier in my career, I would think through all the possible complications first. What if they get short of breath? What if they need a transfusion? What if they get admitted somewhere far from home? What if the pain gets worse? What if they decline while they are away?

Those are genuine questions I still find myself asking. I’ve seen patients end up in hospitals far from home, sometimes even in other countries, and it can be a harrowing experience for them and their families.

So I never want to pretend these decisions are simple. To me, it is about being honest with our patients while also being humble about how much we really know. As physicians, we can often estimate the medical concerns around something like travel, a cruise, or a bucket-list experience, but we cannot perfectly predict what will happen. We also cannot fully measure what that experience might mean to the person sitting across from us.

What if this is the last chance they have to go? What if the memory is worth more than the risk? What if staying home is not actually safer in the way that counts? What if the goal is not just to stay alive, but to feel alive?

There is a version of oncology that can become too conservative. We can become so focused on keeping patients safe that we unintentionally make their world smaller and smaller. No travel, no big plans, no adventure, no “let’s just try.”

We’re great at keeping tabs on negative outcomes—hospitalizations, falls, blood clots, ICU stays, treatment delays, abnormal lab results. But we’re not nearly as good at recognizing the real worth of a once-in-a-lifetime experience.

Fred’s experience taught me an important lesson. He listened to my cautious medical advice, respected it, and then chose his own path. In doing so, he reminded me that my role isn’t to control every decision a patient makes, but to inform, guide, support, and care.

Sometimes, my job is to get out of the way a little.

I think about that more often now when patients ask about travel or bucket list plans. I still give my medical opinion, and I still let them know when I am worried. But I am much more likely now to say, “Yes, go. Let’s just plan for it.”

Go see your family. Go to the beach. Take the trip. Go to the wedding. Sit by the ocean. Eat the meal. Watch the sunset. Do the thing that makes you feel like yourself. Be alive.

Now I realize more than ever that letting patients live is not separate from cancer care. It is cancer care.

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This week I met an 82-year-old man from rural Kentucky.

He was sun-weathered and clearly someone who had spent much of his life outdoors. He came to see me because a mass on his arm had grown rapidly and became painful. The biopsy came back as carcinosarcoma, a rare type of skin cancer that can follow an aggressive course. I recognized the seriousness of that diagnosis right away, but he did not yet have that context. He only knew a dermatologist had told him it was cancer.

His electronic medical record was remarkably empty, and I thought about that just before I walked into the room. Usually that means a patient has spent as little time as possible in doctors’ offices over the course of his life. It also suggested that he had stayed active, lived simply, avoided smoking and alcohol, and at 82 was still pretty healthy.

His daughter was with him. As we started talking, I asked him a few personal questions about what he enjoyed and what kept him busy. He seemed a little surprised I was asking. He answered in short sentences; he wasn’t unfriendly at all, but he did not offer much beyond what was asked.

As we turned to the medical details, I could feel his hesitation.

On paper, the workup was straightforward enough. Before we could make a plan, we needed more information: PET imaging to see whether the cancer was confined to the arm or had spread, evaluation of the lymph nodes, and then a decision about surgery, possibly radiation, or something systemic depending on what we found.

In oncology, we call this a “workup,” as if it is a neat sequence of reasonable steps. But for the person going through it, every step can feel like overkill. Another imaging test, another appointment, another trip, another blood draw, another waiting period. And then, almost suddenly, the calendar begins to fill with appointments he had spent a lifetime avoiding.

I felt his trepidation, and at some point I stopped laying out the plan and asked him honestly whether all of this seemed like too much. He was 82. He had been healthy his whole life. He had clearly kept his distance from medicine. I told him this cancer could be aggressive, that going after it was going to mean a real commitment of time and energy, and that I wanted to understand whether pursuing a cure was truly what he wanted.

He struggled to find the words.

Most people do not walk around with a fully formed philosophy of cancer care ready to call on, especially people who have mostly avoided the medical system in the first place. They are scared. They are trying to absorb something their minds were never built to absorb quickly. They are trying to figure out whether they will be okay. And now someone is asking them to weigh scans, biopsies, surgery, radiation, and quality of life all at once, against the backdrop of a diagnosis that is very hard to understand.

Eventually, he looked at me.

“Doc, you’re the doctor,” he said. “Do what you’ve got to do. That’s why I came to you.”

The implication was clear. This was not an area where he felt comfortable weighing in.

To me, that sentence summed up one of the biggest challenges in modern cancer care.

We talk a great deal about patient autonomy, and rightly so. People deserve honesty. They deserve clarity about their options, their risks, and the uncertainty in much of what we do. The older paternalistic model, where the physician simply decided and the patient was expected to comply, needed to change. That much is settled.

Sometimes it feels like we’ve gone too far in the opposite direction, and the results can end up making things even harder for the patient.

In the name of autonomy, we can inadvertently hand people an impossible burden. We lay out every option, describe every tradeoff, present every possible outcome, and then leave the patient feeling as though the entire weight of the decision now belongs to them. That may look like shared decision-making from the outside. But to the patient it can feel more like the responsibility is being transferred rather than shared.

True shared decision-making happens when medical expertise and personal values come together. The patient offers their story: their fears, priorities, family, and their sense of what’s worth facing or avoiding. The doctor brings an understanding of the illness, experience from similar cases, and a clear, honest view of what the data reveals and where its limits lie.

In cancer care, that space is complicated.

Some patients want every statistic; others want a broader orientation. Some want to make the final call themselves; others want a clear recommendation. Some say they want everything done, and what they mean is that they are afraid of not doing enough. Others say they want to avoid aggressive treatment, and what they mean is that they want to protect their independence, stay out of hospitals, and spend whatever time they have doing things they care about.

I’ve learned over time to try to listen for the meaning underneath what people are saying.

When someone says, “Do everything,” I try to understand what everything actually means to them. Does it mean everything that might help? Everything that prolongs life, regardless of how that life is lived? Everything that gives them a chance to see a grandchild born, make it to a reunion, or have one more Christmas with their family?

And when someone says they want to avoid all of that, I try to understand that too. Are they declining treatment, or are they declining hospitals? Are they saying no to weakness, dependence, or treatments whose benefit is small and whose burden is real?

One of the most useful adjustments I have made over the years is to stop leading with the question many doctors reach for first: What do you want to do?

For many patients, that question is way too broad. They have not yet worked out what they want, because they have not worked out what any of it really means. They have not learned how to weigh a PET scan against a lymph node biopsy, or surgery against radiation, or a small absolute benefit against a real chance of harm. They came because they need help thinking through a decision.

So I try to ask smaller, more human questions.

What are you hoping this process will allow you to keep doing? What are you most worried about losing? If treatments were hard on you, what would feel unacceptable? Are you someone who wants all the options laid out, or would you rather I give you my best recommendation?

Even so, some patients will say, “You decide.” I take that as a turning point in the conversation and a sort of invitation.

When a patient asks for guidance, they’re really asking for care. Responding in a way that respects that request means keeping them involved while fully embracing the responsibility of being their doctor.

My response to this patient as I recall, was something like this: “I hear you. I know you are asking me to guide you through this, and I’m comfortable doing that. I just want to make sure we keep making these decisions together. Based on what I know medically, and based on what I’m hearing from you, here is what I would recommend.”

It’s okay for patients to feel that we have an opinion and are genuinely engaged with them as individuals, not just presenting a list of medical options. They should sense that if it were one of our loved ones, we’d share the same perspective. This means being honest about uncertainty while still providing guidance.

Above all, it comes down to trust.

Shared decision-making sounds easy in policy language. In the clinic it is much more complicated and more human than that. It requires giving conversations more time to unfold. It means watching a patient’s face as carefully as reading their scan. It requires knowing when more explanation helps and when the better thing is to just stop talking and let someone process things for a minute. It requires understanding that some patients feel empowered by options, while others feel paralyzed by them, and that both responses are OK.

The best goals-of-care conversations don’t depend on perfectly worded questions to uncover everything. Instead, they’re a process that might unfold over several visits, guided by what the patient discovers and what we come to understand about them.

Most patients are not asking us to take over. They are asking us to stay engaged, offer our best judgment, and help them find a path that feels like theirs.

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To be clear, I’m increasingly encouraged by the science. Cancer treatments have advanced dramatically. Testing has become more precise. Supportive care has improved. We now have treatment options that would have been hard to imagine when I was in training. I see this progress every week, and it is a big part of why I remain so hopeful about the future of oncology.

But the experience of cancer care has not kept pace. That is the part I want to talk about here, the part patients actually have to live through.

Even at excellent cancer centers, cancer care still feels confusing, fragmented, rushed, and hard to navigate. Those of us inside the system know why each step is happening. We know why a biopsy takes time, why the biomarkers are important, why a scan has to be repeated, or why the surgeon comes before the oncologist in one case and after the oncologist in another. But from the patient’s perspective — it can feel like being dropped into a maze.

Over the past decade, I’ve put a lot of effort into improving my communication. I make an effort to explain things more clearly. I take my time when decisions are difficult. I try to be upfront about any uncertainty in outcomes. That helps, but only so much. Many of these gaps are rooted in how cancer care is structured, which means they’re shared by all of us working in this space.

I want to highlight some of the biggest blind spots I see in cancer care, and rather than just pointing them out, I think it’s more helpful to share practical ideas on how we can work to close these gaps.

1. The diagnostic pathway can feel like a maze

Take breast cancer for example. A woman gets an abnormal mammogram. Then comes more imaging, maybe an ultrasound, then a biopsy, pathology, and biomarkers. After that come the referrals: surgery, medical oncology, radiation oncology, genetic counseling, and sometimes plastic surgery, an MRI, a repeat biopsy, or genomic testing on the tumor weeks later.

Before she has anything resembling a full plan, she might meet five or six people in different places. We know this sequence well and understand why each step happens. But for the patient, it’s experienced one phone call, one MyChart message, one pathology report, and one waiting period at a time. At each stage, the language can sound terrifying when taken out of context. Delays can feel personal, even when they aren’t meant to be. And despite having many doctors involved, no one may seem clearly responsible for keeping the whole picture together.

Ideas to bridge the gap

For patients and families:

• Ask early on who your main point of contact is and get one name and number you can call with questions.

• Keep a simple running file of your reports, dates, medications, and the names of everyone you’ve seen.

• At each visit, it’s OK to ask what happens next and roughly when, until the sequence feels clearer.

For the oncology or primary care team:

• Assign a nurse navigator as soon as a screening result comes back abnormal, so one person holds the whole picture.

• Give patients a simple written roadmap early on: what’s happened, what’s pending, who’s next, and rough timing of things.

• If nurse navigation is not available, make sure every patient has one reliable contact for questions while the workup is going on.

Action item: If you run a practice or a cancer center, trace your own path from an abnormal screen to the first treatment-planning visit and find out who owns the patient’s experience at each step. If the answer is no one, that’s the gap.

2. Finding the right oncologist is harder than it sounds

Patients are often told, “You should see an oncologist.” While that might sound like a step forward, it leaves a lot of questions unanswered.

Which oncologist? At which center? Does this person have real experience with my type of cancer? Will they listen? Will they want to understand what I’m hoping for? Are they open to talking about nutrition, exercise, integrative care, clinical trials, and second opinions?

Finding the right medical oncologist can feel like another maze. I’ve watched patients struggle with it, and I’ve watched my own family struggle with it too. Most referrals are made with good intent. But patients often have no idea why one oncologist or center was chosen over another. Clinical expertise is essential, and so is communication. People need someone who understands the disease and also takes the time to understand them.

This doesn’t mean every patient has to go to an academic center for every decision. Plenty of great cancer care takes place at community practices close to home. What patients really need is honest guidance on when it’s worth seeking specialized expertise, when a second opinion could help, or when a clinical trial should be part of the discussion, as well as how to know if their care team truly shares their goals.

Ideas to bridge the gap

For patients and families:

• Ask your referring doctor why they chose this particular oncologist or center for your kind of cancer.

• Know that asking for a second opinion is normal and expected. A good oncologist will welcome it.

• Before the first visit, write down what you want to know: their experience with your cancer, clinical trial options, and how they communicate.

For the oncology or primary care team:

• When you refer, say why this oncologist or center fits the patient’s cancer instead of handing over only a name.

• Bring up second opinions yourself, so patients do not feel like they are being disloyal by asking.

• Give patients a few plain questions to ask a prospective oncologist.

Action item: If you’re the patient, it is completely reasonable to seek a second opinion before you commit to a plan, and the right team will support you in doing it.

*Related articles that you might find helpful:

• What Patients Need to Know When Choosing Cancer Care

• 10 Questions Worth Asking Your Oncologist

• Second Opinions in Cancer Care

3. We need to understand the person before the plan

Before I talk with someone about surgery, chemotherapy, radiation, immunotherapy, hormone therapy, or any other direction a treatment plan can take, I need to understand the person in front of me. That sounds obvious, but I’m convinced it happens less often than it should.

In oncology, it’s easy to jump straight to the medical facts since the pathology, stage, guidelines, and typical sequence are already known. Meanwhile, the patient is often still grappling with how cancer became a part of their life in the first place.

So, I try to slow down and pay attention first. What does this person already understand? What scares them most? Who helps them make decisions? Are they still working, or caring for kids, a spouse, or an aging parent? What does a good outcome actually look like to them?

The same treatment lands very differently for a young parent, a teacher, someone who lives alone, or someone who has already watched a loved one go through cancer treatment. If I miss that context, I can still recommend the right guideline-based treatment and completely miss the patient. These questions are part of cancer care, every bit as real as the staging and the pathology.

Ideas to bridge the gap

For patients and families:

• Tell your team early what you are most worried about and what a good outcome looks like to you.

• Bring the people who help you make decisions to the first few visits.

• Say how much detail you want right now, whether that is all of it or just the headlines for the moment.

For the oncology team:

• Spend the first few minutes of a new visit on the person rather than the pathology.

• Use a short pre-visit questionnaire about goals, worries, support at home, and how much detail the patient wants.

• Write the patient’s goals into the chart next to the stage, so the whole team can see them.

Action item: If you’re the patient, before the treatment talk begins, tell your oncologist the one thing you’re most worried about and the one part of your life you most want to protect.

*Related articles that you might find helpful:

Beyond the Numbers

Cancer Staging: You Are Not a Number

4. Treatment options are not a menu

When a diagnosis is new, the options can get laid out like a menu. Surgery, chemotherapy, immunotherapy, radiation, hormone-blocking treatment, targeted drugs, close monitoring, or a clinical trial. The side effects get reviewed, the schedule gets explained, a few percentages get mentioned. The patient nods, the family nods, and everyone is just trying to keep up.

A new cancer diagnosis can be terrifying, and someone might appear calm while actually processing only a small part of the conversation. Later, they head home with brochures, information, and a big decision to make. It’s a lot to expect from someone still trying to grasp the basic reality of what just happened.

A few simple questions, asked before the guideline pathway takes over, can change the whole conversation.

• What are you hoping treatment can do for you?

• How aggressive do you want to be?

• Which parts of your life do you most want to protect?

• What would make a treatment feel like too much?

How we frame the numbers makes a difference here too. A treatment described as cutting the chance of recurrence by a third sounds like an easy yes. The same treatment described as lowering someone’s risk from 12% to 8%, which spares about four people in a hundred, invites a more honest conversation.

Both descriptions are accurate. People deserve the version that lets them weigh the trade-off against the life they actually want, whether the goal is cure, long-term control, or protecting function and meaningful time.

Ideas to bridge the gap

For patients and families:

• Ask for any benefit in plain numbers: out of a hundred people like me, how many does this help?

• You do not have to decide on the spot. Ask whether you can take a day or two and talk again.

• Take notes, or bring someone to take them, since it is hard to absorb this all at once.

For the oncology team:

• Explain the benefit in plain numbers, and when possible, tell patients how many people need the treatment for one person to benefit. Do not rely only on the more impressive-sounding percentage.

• Offer a decision aid or a written summary the patient can take home and read again once they are calmer.

• When time allows, build in a second conversation before the final decision.

Action item: If you’re the patient, ask your oncologist to put the benefit in absolute terms, something like, “This helps about four people in a hundred,” so you can weigh it clearly.

*Related articles you might find helpful:

Who Actually Benefits from Cancer Treatment?

5. Integrative oncology needs to be in the conversation

Most people I meet are interested in some form of integrative or holistic care. They want to know what they can eat, how they should exercise, whether supplements are safe, whether fasting is useful or risky, and how sleep and stress affect recovery. These are good questions, and they deserve thoughtful answers.

In a lot of oncology visits, there just isn’t much time for them. Part of that is the clock. Part of it is that a lot of integrative strategies have less clinical trial data behind them than drugs do. And part of it is appropriate caution, since some supplements really can interfere with treatment. But when we leave no room for these conversations, people go looking for answers elsewhere, and the internet is always happy to oblige.

Integrative oncology should play a central role in cancer care and be talked about openly. We can be upfront about what’s backed by strong evidence, what seems promising, and what’s still uncertain. It’s important to explore options that are likely safe and point out those that carry some risk. The goal isn’t to replace cancer treatments with lifestyle changes, but to make the overall care more holistic.

Nutrition, exercise, sleep, and stress management are supportive and personal. They can help someone get through treatment, and they work best when they are tailored to the individual rather than handed out as one formula for everyone. People should be able to bring these questions up without feeling judged.

Ideas to bridge the gap

For patients and families:

• Bring up diet, supplements, exercise, and anything else you are doing or considering, so your team has the full picture.

• Tell your oncologist about every supplement you take, since some can interfere with treatment.

• Ask your team for trustworthy sources rather than leaning on the internet alone.

For the oncology team:

• Ask every patient, as a matter of routine, what they are already doing or thinking about for diet, supplements, and activity.

• Keep short, honest one-pagers handy on common questions like supplements, fasting, and exercise.

• Build a few trusted relationships with credible nutrition and integrative resources you can refer to.

Action item: If you’re the patient, bring a full list of your supplements and any practices like fasting to your next visit, and ask plainly what is safe alongside your treatment.

6. Treatments always come with real-life trade-offs, and side effects should be talked about openly

We tend to go over side effects in a technically accurate way, and patients still may not really grasp the trade-offs underneath them. Neuropathy is a good example.

We say that numbness and tingling can happen, and that it can be long term. But does the person across from us picture what that could actually mean for them? Does the golfer realize it could change their balance and feel? Does the musician realize it could reach their fingers? Does someone who works with their hands realize it could change what they do all day? Does an older patient realize it could raise the risk of a fall?

The same gap shows up with fatigue, memory or concentration changes, hormone symptoms, sexual health, fertility, bowel changes, immune side effects, swelling after lymph node treatment, and body image. Side effects are trade-offs, and they only really make sense inside a particular life.

That weighs most heavily when the expected benefit of treatment is modest or uncertain. One person will accept a hard side-effect profile because the possible benefit feels worth it. Another person, looking at the exact same numbers, will land somewhere else. Both choices can be right when they are well informed and fit that person’s values. Our job is to explain the trade-offs clearly enough that the patient can take a real part in the decision.

Ideas to bridge the gap

For patients and families:

• Tell your team what your days actually involve: your work, your hobbies, what your hands and energy need to do.

• Say which side effects would be hardest for you, so the plan can account for them.

• Speak up if a side effect changes during treatment, since the plan can often be adjusted.

For the oncology team:

• Tie each major side effect to that specific person’s daily life and work.

• Ask what the patient would find hardest to lose, and weigh the side effects against that.

• Revisit side effects during treatment, not just at the consent conversation.

Action item: If you’re the patient, tell your oncologist which side effect would disrupt your life the most, and ask how likely it is and what can be done about it.

7. Communication between visits is still too inconsistent

Electronic records and patient portals have really helped. People can see their results, send messages, check appointments, and get hold of more information than they ever could before.

Real-time communication during treatment can still be tricky. If a new symptom appears midway through, getting quick and clear guidance isn’t always easy. A patient might call the office, speak with one person, then another, and end up with slightly different advice depending on who answers, how the message is passed along, and how busy the clinic happens to be. It’s frustrating, and at times, unsafe.

Cancer care needs better systems for handling symptoms between visits. That means clearer triage pathways, better tools, smarter use of technology, and more consistent messaging. It’s important for people to know which symptoms require urgent attention, which can be managed at home, and who will help them figure it out. That’s all part of good quality care.

Ideas to bridge the gap

For patients and families:

• Ask for clear guidance in writing: which symptoms need a call right away, which can wait, and who to contact.

• Keep that one phone number somewhere easy to find, for you and for whoever helps you.

• When you call, jot down who you spoke with and what they said, in case the advice differs next time.

For the oncology or primary care team:

• Give every patient a clear, written symptom guide.

• Use consistent triage protocols so the advice does not depend on who happens to answer the phone.

• Use portal messaging and remote symptom check-ins where they genuinely help.

Action item: If you run a practice, give every patient one reliable number and a simple written symptom guide, and make sure the triage answer is the same no matter who picks up.

8. Survivorship deserves a real plan

Survivorship is still underdeveloped in a lot of cancer care. People finish surgery, chemotherapy, radiation, immunotherapy, or endocrine therapy, and then the intensity of support can fall off sharply. They might be told when the next scan or mammogram is due and still be left holding the bigger questions.

What do I do now? How do I lower my risk? Why am I still so tired? Who is watching my heart, my bones, my hormones, my neuropathy, my emotional recovery? How do I live with the fear that the cancer will come back?

Too often, survivorship becomes a handoff rather than a well-thought-out plan. Primary care doctors play a key role, but they don’t always get the details they need to step in effectively. Oncology tends to assume primary care is handling long-term health, while primary care assumes oncology is managing cancer-related effects. The patient ends up stuck in the space between those assumptions.

Life after cancer treatment needs a real plan. It should spell out the surveillance and the reason behind each piece of it, along with prevention, late effects, emotional health, physical function, sleep, sexual health, and financial strain. It should also say clearly who is responsible for what.

If we really believe more people are going to live long lives after cancer, and I think we should, then we cannot keep treating survivorship as an afterthought.

Ideas to bridge the gap

For patients and families:

• When treatment ends, ask for a written survivorship plan: your follow-up schedule, what to watch for, and who handles what.

• Make sure your primary care doctor gets a copy of that plan and a summary of your treatment.

• Bring up the things that linger, like fatigue, fear of recurrence, or sexual health, since they are part of care.

For the oncology or primary care team:

• Send everyone off with a written survivorship plan and the reasons behind each piece of it.

• Offer a dedicated survivorship visit for fatigue, function, emotional health, and fear of recurrence.

• Send primary care a clear summary, so they can manage long-term health with confidence.

Action item: If you’re the patient, ask for your survivorship plan in writing, and make sure both you and your primary care doctor are working from the same copy.

What do you see?

So those are some of the bigger gaps I see from inside cancer care:

I’m sure this list is incomplete, and that is part of why I wanted to write it down. If you are a patient, a survivor, a caregiver, a nurse, a navigator, a physician, a primary care doctor, or anyone who has lived near cancer care, I would really like to hear what you see.

Where did the system work well for you? Where did it let you down? What do you wish someone had explained sooner? What would have made the whole experience feel more connected, more honest, and more human?

I believe in modern oncology. I’ve seen so much progress and so many lives improved that it’s hard to feel otherwise. But trusting the science also means being honest about the experiences that come with it.

The next major leap in cancer care won’t just come from a breakthrough drug or biomarker, but from addressing the issues in the system patients have been calling out for years. That starts with truly listening before any treatment plan is created.

We owe it to people to take the time to understand the life their plan will fit into. That’s where better cancer care begins.

Related articles:

From the start, we talked through her treatment options carefully, considering standard therapies alongside diet, exercise, weight loss, and other ways to reduce risk. She went ahead with adjuvant chemotherapy, radiation, and both endocrine and targeted therapy, fully aware of the benefits and tradeoffs. She’s stayed involved every step of the way, and so far, I think she’s done amazingly well.

At the same time, we’ve both come to understand what her disease biology means. Even after five years, with hormone receptor-positive disease and that level of nodal involvement, there’s still a lot of uncertainty.

The aromatase inhibitor side effects were pretty rough on her from the start. She stuck with it for about eighteen months, making some adjustments along the way, until the joint pain really began to interfere with her daily routine. No matter how hard she tried, she struggled to lose any weight. Switching to tamoxifen helped in some ways but brought new issues. The hot flashes got even worse, and over the past year, the “brain fog” has become more noticeable. Overall, these medications just make her feel lousy.

Eventually during our conversation she said:

“Dr. Flora, I think we need to be done with these meds.”

She seemed more settled after we talked, and I reassured her that I supported her decision. But I could tell there was still some uneasiness there. She was anxious about stopping, and also about the fact that we hadn’t done any imaging in a while. Her last scans had been clear, and in this setting we don’t have strong data to support ongoing routine CT surveillance after curative treatment.

At this point, I mentioned a blood test we’ve been using more frequently called circulating tumor DNA, or ctDNA, as something to consider. In her case, based on what we know from surgery, it could be a way to monitor things more closely. If it stayed negative over time, it might offer some reassurance. If something showed up, it could lead to earlier imaging, exploring a clinical trial, or discussing restarting treatment.

She told me she had come across it while reading, but wasn’t sure what it was all about. This kind of conversation is coming up a lot in the clinic now.

Patients are hearing about ctDNA, multi-cancer screening tests, and advanced AI imaging, and can’t help but wonder why these tools aren’t standard in routine follow-up care. From my experience, that curiosity often masks a bigger question: after everything they’ve been through, why does cancer monitoring still feel so limited?

For early-stage breast cancer, follow-up is intentionally minimal. It consists of physical exam, history, mammography (if feasible), and conversations like this. There are no routine CT or PET scans and, in most cases, no tumor markers. That approach seems counterintuitive, especially to someone who has already lived through a high-risk diagnosis.

The reasoning behind it goes back to older trials and a Cochrane review, which showed that more intensive imaging found recurrences earlier but did not improve survival. What it did add was anxiety, incidental findings, radiation exposure and additional procedures. Over time, those data determined how we approach surveillance, not only in breast cancer but in several other cancers as well.

When patients learn about a blood test that can detect cancer earlier than imaging, though, it seems like a promising solution to a problem we’ve not yet figured out.

The tougher question is whether ctDNA actually solves that problem or just adds more confusion to the picture.

Circulating tumor DNA comes from a simple biological concept: as cancer cells divide, they release bits of DNA into the bloodstream, much like normal cells do.

With current sequencing technologies, we can detect those fragments at extremely low levels. In a patient who has completed treatment with curative intent, a positive result can indicate residual disease somewhere in the body, even when imaging is normal. In some studies, that signal appears months, sometimes longer, before anything becomes visible on a scan.

For a long time, we have been trying to treat microscopic disease without being able to measure it directly. We relied on other risk idicators like stage, grade, and tumor genomics, treating larger groups of patients in the hope of benefiting a smaller subset. ctDNA is the first tool that comes close to directly measuring that residual risk in real time.

The data as a prognostic tool are compelling. In colon cancer, the DYNAMIC trial found that patients with a negative ctDNA result could safely undergo less chemotherapy. In breast cancer, studies like PREDICT-DNA show that patients with persistent ctDNA face a much higher risk of recurrence, while those who clear the signal generally do well. This pattern of results is becoming increasingly consistent across different tumor types.

The more difficult question is whether acting on that information changes outcomes.

That is where the data becomes aren’t as reassuring. Trials in colon cancer and triple-negative breast cancer have tested whether starting treatment at the time ctDNA becomes detectable can alter the course of disease, and so far the results have been mixed or negative. In other words, we are getting better at seeing the problem earlier, but we have not yet shown that intervening earlier consistently improves what ultimately matters to patients.

This is exactly the situation my patient is in right now. The test exists, but would it really help her make any decisions? After years of treatment that have taken a toll on her quality of life, she’s thinking about stopping, even though her risk of recurrence is still high. What she needs is some guidance to help her navigate that uncertainty.

In that context, ctDNA can be helpful, but only if it is framed carefully.

For a patient like her, a persistently negative result over time may provide some reassurance as she steps away from therapy. At the same time, a positive result, particularly in the absence of a clear plan, can create a different kind of emotional burden. I have seen patients struggle more with that uncertainty than with the original question that led them to test in the first place. There is also the risk of overtreatment, since some patients who become ctDNA-positive may remain clinically stable for a prolonged period without intervention.

In my practice, I use ctDNA sparingly, mostly in higher-risk situations where the results could genuinely influence our next steps. Before ordering it, I make sure we’re on the same page about how we’d act on either outcome. If a negative result wouldn’t change how a patient feels or our follow-up plan, the test may not add much value. But if a positive result would clearly lead to action, like imaging, a clinical trial, or a therapy change, it becomes more worthwhile. Still, I’m careful to point out that the test doesn’t always eliminate uncertainty.

Patients may approach this differently. Some want as much information as possible and feel more comfortable having data, even if it is incomplete. Others prefer to avoid information that does not clearly translate into action. Both perspectives are reasonable, and the same test can feel either reassuring or scary depending on the person.

This field is evolving quickly and right now there are still a number of unanswered questions. Does acting on ctDNA improve outcomes? If it does, this will likely become part of standard care. If it does not, we will need to be more careful about how we incorporate it into practice. For now, we are in a transitional period where the technology has advanced faster than our ability to apply it.

So now I ask…

The technology is real, and the biology backing it is solid. What we’re still figuring out is how to use it in a way that truly benefits the patient sitting in front of us.

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The surgery went well, and he came back to review the final pathology. The surgeon told him:

“Everything went well. We removed it all, and the margins were clear. However, we did find melanoma in one of the lymph nodes, so we’d like you to meet with a medical oncologist to discuss ways to reduce the risk of it returning.”

This is often where things get trickier and, for many patients, confusing. After surgery, everything seems reassuring, with the hope of simply healing, recovering, and moving on. But for some, this is when some of the toughest decisions in oncology arise—what to do next after the visible part of the cancer has been removed.

The patient came to me after doing some research before his appointment, trying to understand why we might consider additional treatment. It’s a question that comes up often in my practice.

He seemed a little frustrated at the start of our meeting.

“Doc, if we got it all, why am I here?”

I took some time to listen and understand his frustration. The communication had been a bit unclear, and he’d only received a few highlights of what I might cover. He’d heard something about immunotherapy but didn’t have much context beyond that. Surgeons can’t always predict exactly what we’ll recommend, so they tend to keep things a bit general when referring patients to us.

These are the kinds of discussions oncologists often have with patients after surgery, focusing on what’s known as adjuvant treatment. This refers to therapy given after the tumor has been removed, with the aim of reducing the risk of it coming back. It can be difficult to grasp because the decision is based on possibility rather than something visible or measurable, which can be pretty overwhelming when someone is just starting to understand their condition.

In these cases, the focus is on the potential presence of microscopic disease that might still exist even when everything appears clear.

I usually try to break this down in simple terms. Think about a dandelion in your yard. You pull the weed or dig it out, making sure the roots are intact, and it looks like you got it. But if it already released seeds, those seeds are now scattered even though you can’t see them. Over time, new dandelions show up.

Cancer can behave in a similar way. It’s opportunistic, like a weed, but far more complex. The main tumor is removed, but tiny clusters of cells may have already traveled elsewhere. They’re too small to show up on scans, but they have the potential to grow over time.

At the same time, the body plays an active role in all of this. The immune system is constantly surveying and, in many cases, eliminating abnormal cells before they ever become a problem. Part of what we’re trying to do with treatment in this setting is to strengthen that immune surveillance, and in some cases directly target any remaining cancer cells in a way that makes it harder for them to survive and grow.

Treatment after surgery is an attempt to deal with those seeds before they grow into something we can see.

And not all cancers are at the same point in that process.

Some are more like a small yellow dandelion that hasn’t released its seeds yet. That’s closer to what we see in many early-stage cancers, where surgery alone can be enough and additional treatment is not needed.

Others are more like the dandelion after it’s turned white, when the seeds are already dispersing. That’s more in line with higher-risk cancers, including many stage III cases, where we know there has already been some spread beyond the original site, often to nearby lymph nodes.

That distinction is important, because it changes how likely it is that those “seeds” are already out there and how we think about further treatment.

To make sense of this, it helps to step back and look at how we think about cancer across different stages.

In early-stage disease, surgery is often enough. The risk of recurrence is low, and additional treatment usually doesn’t make sense.

In advanced or metastatic disease, we are treating something we can directly measure on a scan, and decisions tend to feel more direct because we can track what is happening in real time.

In between is where things become more nuanced.

Stage II and stage III cancers sit in that middle space where many patients are still curable, but the risk of recurrence is meaningful. The challenge is that we cannot tell who still has microscopic disease and who doesn’t, so every decision becomes a conversation about probability.

I’m thinking about this patient with stage IIIA melanoma. The surgery went smoothly, the primary tumor is gone, and a sentinel lymph node revealed a small focus of melanoma. The rest of the workup looks reassuring. By all our tests, there’s no visible disease, yet the risk of recurrence remains in the range of 20–30%. About one in four patients with this diagnosis will face recurrence at some point.

That’s when we start talking about treatment after surgery, which in melanoma today often means immunotherapy, but in other cancers can include chemotherapy, targeted therapy, or a combination depending on the biology of the disease.

Drugs like nivolumab and pembrolizumab have changed melanoma care. They help the immune system recognize and attack cancer cells more effectively, and when we use them after surgery, fewer patients have their cancer come back over time.

Where this becomes more nuanced is translating what that benefit actually means for an individual patient.

I often frame it in practical terms. If we lined up a hundred patients with stage IIIA melanoma, some are going to do well regardless of what we do next. Some will have recurrence even if we treat them. And then there is a group in the middle where treatment likely makes the difference.

The reality is that we don’t know which group any one person belongs to at the time we are making the decision.

We often talk about concepts like absolute risk reduction and number needed to treat, which are helpful because they turn broad statements into something more concrete. In practical terms, this could mean treating 8 to 12 patients to prevent a single recurrence.

At the same time, we have to be honest about the risks.

Immunotherapy is often described as easier than chemotherapy, and in many cases it is, but it can still cause serious immune-related side effects. I treat enough patients with these therapies to know that these complications are real. Most patients do well, but some develop significant inflammation affecting organs like the lungs, liver, colon, or endocrine system. Some of these effects require prolonged treatment, and some can be permanent.

So now we are weighing a reduction in recurrence risk against the possibility of meaningful, sometimes long-lasting toxicity. For a patient with stage IIIA disease, those two sides can feel fairly close to each other.

Deciding on treatment is a pivotal moment. The oncologist’s role is to listen and understand what feels right for each person. Some patients choose to pursue every option to reduce risk, even for a small benefit. Others focus on the possibility that they may never need treatment at all.

This is what being “on the fence” looks like in cancer care.

It should also be recognized that these decisions often happen during times of uncertainty, stress, and emotional strain. They should never be rushed or influenced by pressure.

In the last few years, we’ve had another piece of information that has started to shape these discussions. Circulating tumor DNA, or ctDNA, gives us a way to look for fragments of cancer DNA in the bloodstream after surgery. If it is present, it suggests that microscopic disease may still be there. If it is not detected, the risk of recurrence is likely lower.

For a patient with stage IIIA melanoma, that kind of information can be helpful. It adds a biologic signal to what has traditionally been a statistical discussion. At the same time, we are still early. The data is evolving, and while ctDNA is clearly prognostic, we are still learning how best to use it to guide decisions in a way that improves outcomes.

So it becomes part of the discussion rather than the answer.

Over time, I’ve learned there’s no one “right” decision in this space—only the decision that best suits the person in front of you. My job is to make sure they understand all their options* as clearly as possible, including the benefits, the limitations, and the uncertainty that comes with each.

After a thoughtful conversation with my patient, he chose not to pursue additional treatment. I fully supported his decision, even though it’s not what I would have chosen for myself. Spending that time together helped me understand his priorities, and avoiding toxicity was high on his list—important enough that he was willing to accept some risk.

*For patients who opt out of treatment, I place even more focus on metabolic health. I make sure to discuss ways to improve it through diet and exercise, and I connect them with our cancer dietitian and integrative oncology team.

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How do you decide where to get cancer care, whether at a community hospital, a university medical center, or a large cancer center? And how do you know if you’ve found the right oncologist?

Getting a cancer diagnosis is overwhelming and full of uncertainty. Patients have to navigate where to get treatment and decide who they can rely on, all while worrying about how those decisions might impact their outcome.

I recently went through this with a family member and helped a close friend navigate it as well. Even with an oncology background, it’s not straightforward. There are several reasonable paths, but not much guidance out there to help patients figure this out.

One challenge is that many people don’t fully understand how cancer care is organized. Terms like “community center” or “academic center” get thrown around, but their exact meaning isn’t always clear.

There is also a personal element. Even within the same system, the patient experience can vary depending on the oncologist you work with.

I thought it might be helpful to walk through how I approach thinking about cancer centers and when certain differences could influence early decision-making.

Understanding the Types of Cancer Centers

Most cancer care in the U.S. happens across a few types of centers, and each plays an important role.

Most patients receive care at community cancer centers, which are local hospitals or oncology practices. This is where treatments like chemotherapy, immunotherapy, and routine follow-up care happen.

People often underestimate how capable these centers are. Many community oncologists manage common cancers every day and do it very well. They tend to act quickly when something changes. Follow-up is often easier because everything is local.

A practical example:
If someone is diagnosed with early-stage breast cancer or colon cancer with a clear treatment plan, I would feel comfortable starting care in a strong community center. In many cases, I would keep care there, especially if the team communicates well.

Academic or university cancer centers are typically affiliated with a medical school. Physicians in these centers often focus on a narrower group of cancers.

In practice, that leads to more subspecialization and more collaboration across disciplines. A case may be reviewed by surgery, radiation oncology, pathology, and radiology. There is also a closer connection to research, which can open additional options when decisions are less clear.

If a case has an unusual presentation or the plan is not obvious, I would often get additional input from an academic center. That does not always mean transferring care. It can be a way to make sure the plan holds up when reviewed by a specialist in a specific cancer.

Large or high-volume cancer centers are often regional or national referral centers. These places see a high number of patients with specific cancers, including rare or complex ones.

Experience can become important in certain diseases. In cancers like sarcoma, complex GI tumors, or certain leukemias, familiarity with similar cases can influence decisions. It can also affect access to specialized treatments such as CAR-T therapy or bone marrow transplant.

If someone has sarcoma, I would almost always get an opinion from a center that sees a lot of it. That does not mean all care has to move there, but I would want that level of experience involved early.

What Does “NCI-Designated” Mean?

There is one more layer that can be helpful, especially when comparing centers.

You may come across the term NCI-designated cancer center. This comes from the National Cancer Institute, part of the NIH. These centers go through a formal review process and are recognized for the strength of their research programs.

Some are designated as Comprehensive Cancer Centers. These meet additional criteria and tend to have broader clinical trial programs.

For patients, that often translates into:

• Access to a wider range of clinical trials

• Physicians who focus on specific cancer types

• Collaboration across specialties

That said, this designation does not automatically mean better care in every situation.

For many common cancers with established treatment plans, a strong community center can deliver excellent care. The difference is often not the treatment itself. It tends to show up in how care is organized.

Geography and Practical Reality

Geography plays a bigger role than people expect.

If you live in a city like New York, Boston, or Chicago, you may have several academic centers nearby. Getting more than one opinion is relatively easy.

If you live in a more rural area, the nearest tertiary center may be hours away. That changes what is realistic.

In those situations, a hybrid model often works well:

• Initial consultation at a larger center

• Ongoing treatment closer to home

How to Find the Right Oncologist

That brings up the second part of the question.

How do you know if you’ve found the right oncologist?

This is where things become more personal.

Even within the same system, two oncologists can approach the same case very differently. Training and experience are important, but so are communication, judgment, and how they involve you in decisions.

A few practical ways to approach this early:

• Ask trusted healthcare professionals who they would recommend for a family member
  This is often the quickest way to find a strong option. Clinicians usually think about judgment as well as credentials when answering that question.

• Look at physician bios or short videos
  Many centers include short clips or written bios. You can often get a sense of how someone explains things and how they think.

• Pay attention to how you feel after the first visit
  Did you feel heard? Did you leave with a clearer understanding? You do not need to understand everything, but you should feel that someone is helping you make sense of it.

There are also a few additional signals that can help:

• How do they handle uncertainty?
  When things are less clear, do they walk you through options, or do they give one answer without much explanation?

• Openness to another opinion
  If you ask about a second opinion, you should feel supported. Good oncologists are comfortable with collaboration.

It is also worth remembering that you are allowed to choose.

Sometimes the first oncologist you meet is simply the one who had availability or was on service that week. That is how the system works. It does not mean that is your only option.

If you want to see someone else, you can:

• Ask to schedule with a different physician

• Ask your current oncologist for recommendations

• Reach out to another center for a second opinion

When Should You Look Outside Your Local System?

Most patients don’t know if their situation is straightforward or more complex. That is not something you are expected to figure out on your own.

Instead of trying to categorize your case, I would focus on a few simple questions:

• “Is this a standard situation, or is there anything about this that makes it more complicated?”

• “Do you see this type of cancer often?”

• “Would you get another opinion if this were your family member?”

• “Are there other options or clinical trials we should be thinking about early?”

Those questions will usually give you a clear sense of whether it makes sense to involve another center.

A Note on Integrative Care

Another piece that comes up more often now is integrative care.

Many centers place more emphasis on areas like nutrition, exercise, and symptom management.

If this is important to you, it is worth asking:

• “Do you offer integrative oncology support?”

• “Is there someone here who focuses on that?”

Not every practice approaches this the same way.

Final Thoughts

That first step is about getting connected and getting information. From there, decisions can evolve.

You are not locked into where you start.

If something does not feel right, whether it is the setting or the plan, it is reasonable to get another perspective.

Most oncologists understand this. We would approach it the same way for our own families.

I understand that going through this as a patient feels very different. There is a strong pull to get every decision right because it feels like such a high-stakes moment.

In most cases, there is more than one reasonable path forward.

The goal is to start in a good place, ask thoughtful questions, and build a plan with a team you trust.

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Every now and then, I get a message from a pharmacy student or resident pharmacist wondering if they should make the same move. I’m guessing they feel some of the same pull I did. I wanted to be more directly involved in decision-making, and I missed the opportunity for longer-term relationships with patients and families. I also loved diagnostics and the challenge of working through difficult cases when the answer wasn’t clear. Looking back, I think it was probably that curiosity that sealed it for me.

I’m really glad I made the change. I love what I do, and I do feel a strong sense of purpose in it.

But I also see things differently now from the other side. Medicine is meaningful work, but it comes with a lot that I didn’t fully understand until I got here.

The clinic grind is real. There is not much time to reset or recharge. You’re pulled in many directions, and the pace can wear on you. The responsibility, and Epic, never really turns off.

As a pharmacist, I could usually clock out at the end of the day. I thought about my patients then too, but it was easier to transition back to home life. Now it feels different. There are sleepless nights, not just from overnight call, but from conversations or decisions that stay in my head longer than I expect.

And honestly, the thing I underestimated most was life outside of work.

Raising a family is a whole life on its own. It takes time, energy, and presence. Medicine doesn’t always make that easy. I missed more things than I would have liked. Weekend rounds, late nights, moments with my kids that I wish I could get back now that they’re older. Even when I was there, there were times when I wasn’t fully present after a hard day.

I still remember telling one of my favorite pharmacy preceptors that I was thinking about going back to medical school. She said, “You know the world needs excellent pharmacists too, Dan.”

She was absolutely right.

Pharmacy can offer a great deal of impact and purpose. My father certainly found that, and it’s shaped the way I’ve always viewed the profession.

If you’re considering it, be clear with yourself about why. Know what you want and what you’re willing to give up, and be sure you’re ready for those trade-offs. I’m thankful for the path I took, but it’s important that it works for your life as a whole, not just your career.

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In his article, What happens when you don’t die on time? Deachman tells the stories of three people who outlived their prognoses and now exist in a sort of strange, undefined place. They had spent much of their savings crossing off bucket list items and arranging to say their goodbyes. But then the end never came.

One woman, 34, broke but alive, is debating whether to look for work. A man whose stage 4 liver cancer went into remission is dealing with anger after already going through the emotional process of dying. Another patient with breast cancer saw her prognosis shift from five years to much longer, leaving her to walk out of her oncologist’s office puzzled over why she didn’t feel happy.

We see this in oncology. I’ve had patients surpass their prognosis by years, and it can be a real challenge for both them and me as their oncologist. How do you move forward after accepting an ending, reshaping your entire life around it, and then finding yourself still alive?

I wrote one of my favorite Curative pieces about this, about a patient named Fred and our first prognosis conversation. It was early in my career, and I explained to Fred that he likely had a life expectancy of about twelve months. He went on to live nearly seven years. That experience changed how I approach the question of “how long do I have” forever, and it’s a piece I’d encourage you to read if you haven’t.

The Deachman article goes much further, though. It explores what happens when someone has to rebuild a life they had already finished arranging.

When someone receives a serious diagnosis like cancer, life can shift in days or weeks. I’ve seen people move up weddings, finally take trips they’d been postponing, and have conversations they’d long avoided. There’s a clarity that comes with that urgency, and I’ve always admired it.

I’ve often helped patients plan treatments around those milestones, and I’ve never been disappointed when someone gets to celebrate twice because things turned out better than expected. One patient once told me he only hoped to live long enough to see his first grandchild. Recently, he told me he’s now expecting his fifth.

But we don’t often talk about what happens when the urgency is gone and the person is still here.

I’ve seen patients doing well on treatment, with scans showing stability or improvement, and instead of feeling relief there can be a kind of disorientation. They’ve built their entire outlook around heading in one direction. When that direction suddenly shifts, their emotions don’t always catch up right away. Good news can be surprisingly hard to absorb when your life has been shaped around preparing for an ending.

As an oncologist, I’ve never used the word “terminal” because it doesn’t feel right. It’s common in the media, in conversations, and even among patients, but it closes a mental door. It implies the ending is already set, and in my experience that’s rarely the case.

I’m honest about the seriousness of a cancer diagnosis. I share what the data shows and the range of possible outcomes. But I try to steer clear of labels that might define someone’s future in their own mind, as I know that can affect how a person sleeps, talks to their kids, or feels about making plans.

Lately, I’ve been writing about outliers in oncology because they’re showing up more often in my practice. With the rise of immunotherapy and targeted treatments, I have stage 4 lung cancer patients I started treating years ago who are still doing well, still coming to the clinic, still living full lives. Some may even be cured, though we’re careful about using that word too soon. It’s real progress, but we need our support systems need to catch up with the biology.

What I think every person living with metastatic cancer deserves is access to mental health support from someone who understands this particular kind of uncertainty.

And not just any therapist. Someone who understands how the next scan could change everything again. Someone who understands that “you’re doing great” feels a little hollow when your life is measured in three-month intervals between CT scans. Someone who appreciates that remission doesn’t always feel like relief, and that planning a future feels different when you weren’t supposed to have one.

In community oncology, where I practice, this gap is wide. Many patients don’t have easy access to anyone who specializes in this kind of counseling. Sometimes they end up talking to me about it, and while I do my best, there are things these patients need that go beyond what I can offer in a clinic visit.

So, for many patients, they find their own way through this.

Some, like my patient Fred, take on a “house money” mentality and go fully back to living their lives. Others feel lost or stranded. Some find a kind of peace that is real but complicated. And some never talk about it at all. They just keep showing up and deal with it in their own way on their own time.

I’ve stopped expecting a specific reaction. Instead, I focus on creating space for whatever the patient is truly feeling, even if it doesn’t align with what others think they should feel.

In oncology we spend a lot of time talking about survival rates. We should also spend more time talking about what surviving actually feels like.

For many patients it is far more complicated than anyone expects, and they shouldn’t have to figure that out on their own.

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The story usually goes like this: A patient presents with an advanced cancer. We recommend our most effective treatment but are honest that it may work for some percentage of patients, but not for many. And then the unexpected happens. The disease responds far beyond what the data would predict. Sometimes the cancer ends up completely regressing.

In oncology, we call these patients exceptional responders. We share their stories between visits, at our case conferences. These cases stick with you for years. But we almost never do anything formal with what we’ve observed. I think that’s a missed opportunity.

A Patient Who Defied the Numbers

A few years ago, a man in his fifties came to see me with a large mass on the back of his scalp. He will admit he was not someone who liked going to doctors. He had noticed the lesion growing for a long time and had tried a number of things on his own, various alternative remedies and home treatments, hoping it would improve. When the mass kept growing, eventually reaching close to the size of a baseball, it became increasingly painful and started to bleed. That was what finally brought him in.

When he was evaluated, the clinical picture was that of a large cutaneous squamous cell carcinoma and biopsy confirmed it as such. The surgeons were concerned that there was early suggestion of skull invasion, and resection did not appear to be a safe or curative option. He was referred to me for systemic therapy.

We had a good conversation that day. He was quite desperate at that point to control his symptoms.

Quick science: Cutaneous squamous cell carcinoma tends to have a high mutational burden, largely from years of ultraviolet exposure, and that makes it a tumor type that often responds well to checkpoint inhibition. I recommended cemiplimab, an anti-PD-1 agent approved specifically for advanced cutaneous squamous cell carcinoma. In the trials for advanced cancer, the objective response rate runs roughly 40-60%, with complete responses in the range of 13-50% depending on the population studied. Those are encouraging numbers, but they also mean that a significant proportion of patients don’t respond, and a complete response is not the most common outcome.

After a discussion of the risks and benefits, he agreed to proceed with treatment. After his first infusion, something remarkable started happening. Within about seven to ten days, the bleeding slowed and his pain started to ease. By three weeks, the tumor was visibly smaller. He was feeling well, and we moved forward with a second treatment.

During the second infusion, we ran into a problem. He developed shortness of breath and throat itching, which appeared to be an infusion reaction. This is rare but can happen with monoclonal antibodies. We stopped about halfway through. He recovered without difficulty, but afterward told me he wanted to be done. He’d received one and a half treatments and didn’t want to risk another reaction. The tumor was already regressing. He wanted to wait and see.

In a standard treatment paradigm, we plan for up to twelve months of therapy. He’d had about six weeks’ worth. I understood his trepidation. That reaction was a scary moment for him, and after that he didn’t want to take the chance again.

Over the next few weeks, he came in for regular check-ups, and the mass kept shrinking. I talked to him about nutrition, noting that high-fiber foods are recommended during immunotherapy. He had already started making changes on his own, cutting back on sugar and cleaning up his eating habits. However, he was still smoking marijuana regularly, and I advised him to cut back or quit altogether.

He missed several appointments and didn’t follow up for months, so our office reached out. When he finally came back four months later, he said he’d had a lot going on and needed some time away. In that time, he’d had no treatments, and I expected the mass would have returned. But when I saw him I was shocked—the cancer was completely gone, leaving only a scar where it had been. In all my years, I’d never seen such a response after just one or two treatments. The staff who saw him at his first visit came to the exam room to witness it themselves.

He’s now several years out with no evidence of disease. He didn’t overhaul his lifestyle. He didn’t start a supplement regimen. He received a fraction of the intended therapy and had one of the most dramatic responses I’ve seen in practice.

We All See This, But We Don’t Study It

I’m sharing this not because it’s unique to my clinic, but because some version of it exists in every oncologist’s practice. It happens with chemotherapy, immunotherapy, and targeted therapy. Sometimes it occurs in patients whose tumor biology or clinical profile suggests they shouldn’t do well at all. We notice these cases, we remember them, but we rarely act on that observation beyond mentioning it to a colleague.

The formal term is “exceptional responder.” The NCI defines it as a patient who achieves a partial or complete response to a treatment that is effective in fewer than ten percent of similar patients, with a response lasting at least three times longer than the median. But even below that threshold, there are patients across every tumor type whose responses are meaningfully better than expected. And we have almost no infrastructure in community oncology to capture or study those cases.

What the Research Has Shown So Far

The NCI recognized this gap and launched the Exceptional Responders Initiative in 2014, a retrospective study that collected histories and tumor samples from 111 patients with various cancers who had experienced unusually strong responses to standard treatments. The results were published in Cancer Cell in 2020. Researchers were able to identify molecular features that could potentially explain the exceptional response in about 26 of those patients, roughly 23 percent. The mechanisms included dysregulated signaling pathways, altered DNA damage response, immune cell infiltration of the tumor, and rare co-occurring genomic alterations. Notably, tumors from exceptional responders showed higher levels of B lymphocytes, suggesting the host immune system was contributing to the response beyond the direct mechanism of the drug.

But for the remaining 77 percent, the researchers could not find a clear molecular explanation, even with extensive analytic tools. I actually find that encouraging, because it tells us there’s more to learn. We are still early in understanding what drives these responses, and that looking at tumor genomics alone may not be enough.

Beyond the Tumor: The Whole Patient

This is where the work coming out of Harvard’s Network of Enigmatic Exceptional Responders, or NEER, becomes interesting. Unlike the NCI study, which focused primarily on what was happening inside the cancer cell, NEER cast a much wider net. They collected genomic data, but also detailed information on diet, exercise, medical history, lifestyle habits, environmental exposures, microbiome composition, and even psychological and social factors. The premise was that an exceptional response might not be explained by the tumor alone. It might also involve the host, the whole person.

One thing I find particularly worth noting about NEER is that it was designed to be patient-directed. Patients can enroll themselves through the study’s website at peoplepoweredmedicine.org/neer and share their own health information online. They maintain control of their data and can choose to make it available to researchers. That model addresses one of the biggest practical barriers in this whole conversation: time. Community oncologists don’t have time to fill out lengthy research forms for every remarkable response they see. But patients do have time, and many of them are motivated. If a patient knows their response was unusual and wants to contribute to understanding why, giving them a way to share their own story, their diet, their lifestyle, their medical history, in a structured format that researchers can actually use, that changes the equation.

I find that thinking compelling, and I think it points toward something important. What some researchers are beginning to call the “phenome,” the totality of a patient’s biological and personal characteristics at the time of treatment, may matter more than we appreciate. This includes things like immune cell subsets, NK cell activity, cytokine profiles, and gut microbiome composition. But it also includes nutritional status, metabolic health, and the many ways these factors interact with immune function. When I think about my patient with the scalp lesion, I find myself less focused on what was happening in his tumor and more curious about was happening in him. What was his immune profile like? How was his microbiome behaving? Was there something in his biology that set him up for such a remarkable response to even a short course of checkpoint inhibition? We don’t know, because we didn’t check. We almost never do.

The Community Oncology Gap

The vast majority of cancer in this country is treated in the community setting. Community oncologists are the ones most likely to encounter exceptional responders in routine practice, and we are the least equipped to study them. There is no straightforward way for us to report these cases to a central database, no workflow that prompts tissue collection or structured documentation. When I see a patient like this man, I’m amazed, I tell a few colleagues, and then I move on. The infrastructure simply doesn’t exist, and the pace of clinical care doesn’t accommodate it. But the consequence is that across thousands of practices, there are exceptional responders whose cases are never captured or studied.

I think about what happened in HIV research. Early in the epidemic, investigators noticed that certain individuals were repeatedly exposed to HIV and never developed infection. They studied those outliers carefully, and it led to the discovery of the CCR5-delta32 mutation, a finding that eventually contributed to the development of maraviroc and informed gene therapy approaches still being explored today. Someone decided those outliers were worth investigating, and it changed our understanding of the disease.

Data, Not Anecdotes

I think we should be doing more of that in oncology. And I want to be clear about what I mean. I’m not talking about individual case reports. We’ve seen how isolated case reports, without context or controls, can be used to support all kinds of claims that don’t hold up under scrutiny. What we need is organized, systematic data collection with outcomes tracking, a way to pool these cases across practices so they can be analyzed together with real scientific rigor.

The interesting thing is that some of the infrastructure may already be closer than we think. Many community oncologists are now getting comprehensive immune and genomic profiling through companies like Tempus. That data, if it could be responsibly aggregated and linked to treatment outcomes, represents an enormous untapped resource. Imagine being able to identify patterns across hundreds or thousands of exceptional responders, their immune profiles, their genomic features, their microbiome data, and correlate that with what they received and how they did. That’s a very different thing from a collection of anecdotal case reports. That’s real data, and it could move the science forward in ways that individual stories, no matter how compelling, cannot.

We need easier pathways to get this kind of data from community practices into organized research efforts. And we need to start treating these cases as biological signals rather than just good stories for tumor board. One exceptional responder is an anecdote. A thousand of them, carefully characterized and systematically analyzed, could be something much more.

What We Might Be Missing

I still think about cases like the one I shared. I wonder what his tumor might have revealed under deeper molecular analysis, and if a better understanding of his immune biomarkers or microenvironment could explain why just one and a half doses of cemiplimab were enough. I don’t have those answers. His tissue sits in a pathology lab somewhere, untouched and unstudied.

It feels like a bit of a waste—not his story, which ended well and finds him doing great—but of the valuable knowledge that case could offer. Thinking about how many patients like him pass through community practices each year makes it clear just how much we might be leaving untapped.

We learned from the people who didn’t get HIV. I think we should be learning just as deliberately from the patients who beat their cancers in ways we can’t yet explain. The data is out there, in our clinics. We just need better ways to capture it.

What are your thoughts on exceptional responders, and do you agree we should be investing more in studying these patients? Comments appreciated. Restacks appreciated.

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But stage II melanoma carries substantial recurrence risk. Recurrence in this setting is commonly systemic, meaning it can spread to organs like the lungs or the brain. And we now have data showing that adjuvant immunotherapy, drugs that activate the immune system to seek and destroy remaining cancer cells, reduces that risk meaningfully. So the question on the table was: should he get a year of treatment to protect against recurrence?

What followed was one of the better conversations I’ve had in clinic. He’s an engineer and he thinks in systems, probabilities, and risk calculations. He wanted to understand the data, not just the recommendation. We talked through the trial results, the absolute risk reduction, the uncertainty in the numbers. He asked good questions and I gave him honest answers, including the unsatisfying ones.

Because here is what I also had to tell him. A meaningful portion of patients with stage II melanoma would never have recurred anyway, because the surgery was their cure. Another group will recur regardless of treatment. That leaves a middle group who genuinely benefit from the drug. And I have no reliable way to tell him which group he’s in. What I do know is that roughly one in five patients who receive this class of drug, called checkpoint inhibitors with pembrolizumab being one of the most commonly used, will develop a significant immune-related side effect. Because these drugs work by removing the brakes on the immune system, they can sometimes cause it to attack healthy tissue including the colon, the lungs, the thyroid, and the heart. In rare cases patients develop permanent diabetes from destruction of the insulin-producing cells in the pancreas. These are not minor inconveniences but life-altering consequences that follow patients long after treatment ends.

He sat thoughtfully with that for a moment. “So you’re telling me there’s a real chance this does nothing for my cancer and still gives me a lifelong auto-immune condition?”

Yes. That’s exactly what I was telling him.

He has young kids and he’s 43 years old. The fear of recurrence is not abstract for him, it’s the fear of not being there. So we made the decision together to treat, weighing his anxiety about recurrence against the real risks of harm. It was a reasonable decision and it was also, in part, an emotional one. But it was made in the absence of the one thing that would have made it a truly informed decision: a way to know whether his host biology, his immune system, his individual makeup, his particular capacity to respond or to be harmed, actually positioned him to benefit from this drug.

Six months in, he developed immune-related thyroid failure and will be on replacement hormone for the rest of his life. He’s two years out now with no recurrence and doing well. But I still don’t know if the drug saved him or if he was always going to be fine and paid a permanent price for nothing.

This is what the absence of predictive and prognostic host biomarkers actually costs, not just in statistics but in people.

It’s Time to Study the Other Half of the Equation

Modern oncology has done a remarkable job of characterizing the tumor. We understand its mutations, its drivers, and its vulnerabilities. Genetic sequencing of tumors, molecular profiling, and blood tests that detect cancer DNA circulating in the bloodstream have transformed how we diagnose and monitor cancer, and these are real and important advances.

What we have not done nearly well enough is understand the host, meaning the person carrying the cancer.

Did his immune system have the capacity to respond to immunotherapy in the first place? What was the composition of his immune cells, the soldiers of his immune system, and were they primed to fight or exhausted before we even started? What does his microbiome, the vast ecosystem of bacteria and other organisms living in and on his body, tell us about how he would respond to a drug that depends entirely on immune activation? And beyond what we currently measure, what other markers of host biology, ones we haven’t yet discovered or thought to look for, might hold the key to predicting response and toxicity?

These are the questions we need to be asking. They are questions about the patient and not just the cancer. And we are still very early in answering them. The validated tools that would let oncologists individualize these decisions don’t fully exist yet, and I think building them is the most important work oncology can do over the decade.

Why This Research Isn’t Getting Done

The honest answer is that it requires a lot more funding.

Pharmaceutical companies develop drugs, and that is their core mission. Within that mission they have produced remarkable therapies that have saved countless lives. But asking pharma to fund research that identifies which patients don’t need their drugs is asking them to act against their shareholders’ interests, and it won’t happen at the scale we need. That was never going to be their role, and we shouldn’t pretend otherwise.

This is precisely the work that federal research funding exists to do, and the NIH has a long track record of delivering on it. CAR-T cell therapy, tumor infiltrating lymphocyte therapy, and the checkpoint inhibitors now standard of care across dozens of cancer types all trace their lineage to NIH-funded basic immunology research. We got these treatments not because a pharmaceutical company decided to fund curiosity-driven science, but because the federal government invested in understanding how the immune system works over decades, without knowing exactly where it would lead. That is how transformative medicine happens, and that is the model we need to protect and build upon.

What’s at Stake Right Now

This research ecosystem is now under serious threat. Across the NIH, funding is being cut and research programs are being eliminated. Investigators who have spent careers building the scientific infrastructure for this kind of work are losing support, and the graduate students and postdoctoral researchers who would carry it forward are facing an uncertain future.

This is happening at precisely the moment when the field is positioned to make the advances we most need. The scientific questions are clear, the technology is increasingly capable, and the clinical need is urgent. What’s required now is sustained federal investment in understanding host biology in its fullest sense, including immune cell composition and function, the microbiome and its influence on treatment response, genetic predisposition to toxicity, and the markers we haven’t yet discovered that will redefine how we think about individual patients.

The US has led the world in cancer immunology research, and that leadership represents one of the genuine competitive advantages this country holds in biomedical science. Dismantling it now in the name of short-term budget savings would be a profound mistake, one whose costs would be measured not in dollars but in patients harmed by treatments that couldn’t help them and in lives lost to cancers we might have learned to manage more wisely.

A Call to Action:

To patients and patient advocates: the research that will one day tell your oncologist whether a given treatment is right for your biology, not just your tumor type, is federal research. When that funding is cut, the timeline for answering these questions gets longer. Ask your representatives to protect it.

To researchers and students entering biomedical science: host biomarker research is one of the most important open frontiers in medicine. The question of who actually benefits from cancer treatment, answered at the level of individual biology including immune cells, the microbiome, and markers we have yet to even identify, is waiting for the scientists willing to pursue it. It is hard work, slow work, and deeply necessary work, and we need you here.

To policymakers and those who control federal research budgets: the NIH’s investment in cancer immunology has already paid for itself many times over. The next return on that investment, the tools that tell us who benefits and who will be harmed, requires continued commitment and not retreat. This is exactly what federal funding is for.

We know more about cancer than we ever have. The immune system’s role in fighting it has gone from theory to clinical reality within a single generation, built on the strength of federal investment in basic science. The next step, understanding each patient’s host biology deeply enough to treat them as a true individual, is within reach.

But only if we fund it.

That 43-year-old engineer deserved better information than I could give him, and so does every patient sitting in a clinic right now facing a decision that shouldn’t have to be made in the dark. The science to illuminate that darkness exists. What’s needed is the will and the investment to pursue it.

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I was traveling separately that morning. I had stayed back from the rest of the group to attend a close friend’s wedding in Cincinnati, so I was driving alone to meet the others in Jamaica one day later. My future wife, Sarah, was already there traveling with the larger team.

The mission trip was organized through a Christian-based outreach organization helping communities in and around Port Maria. Our team was made up of medical students, pharmacists, and dentists, all working together to run temporary clinics in areas where access to medical care was extremely limited.

In my trunk were two large suitcases filled with medical supplies that we were bringing to support the clinic we had helped establish months earlier.

And then, somewhere along I-74, the rear tire of my car blew out.

I managed to remain pretty calm during the situation and was able to get my car pulled off to the side of the highway. There was not a soul on the road at that time, and I knew I would need to rely on myself to get the tire changed in enough time to make my flight.

For the next 30 minutes I struggled furiously to dislodge the rusty aluminum wheel from the car. It had apparently fused to the axle and despite my best efforts the tire was not coming off. The rain had turned into a drizzling sleet and my hands ached from being exposed to the cold.

I leaned against the car, despondent and frustrated, feeling sick with disappointment.

At some point I just stopped and prayed. I asked God for a little help and then told myself I would try one more time to get the wheel to loosen from the rusted bolts.

I went back at it again, but it still wouldn’t move.

A number of thoughts went through my head, most of them centered around the fact that I likely wouldn’t be making my flight. But more than that, I kept thinking about the suitcases in my trunk that would never reach their destination. I thought about not being able to help run the makeshift Jamaican clinic my colleagues and I had helped create months earlier.

I felt completely stranded standing on the side of that interstate.

In my frustration I had barely noticed that a small red pickup truck had passed me and pulled off the highway. A thin, bearded man and his teenage son got out and walked over to assess the situation. They told me they had passed earlier, saw me struggling, and decided to turn around to help.

With all our might, the three of us still failed to get the tire off the axle.

He asked where I was going and I replied that I was trying to make a flight in Indianapolis. The man then offered to drive me to the airport since he too was heading through the city.

As we loaded my heavy bags into the back of his truck, he mentioned that they were delivering a newly crafted church door to a congregation in Indianapolis that morning.

As I abandoned my car on the side of the road that morning, I couldn’t stop thinking about this complete stranger and how he had reached out just when I needed it most.

I also remember thinking about the timing of it all. Stranded on the side of the road with medical supplies for a mission clinic… getting picked up by two strangers on their way to deliver a church door.

I did make my flight to Jamaica that morning. Medical supplies and all.

I have reflected on that experience many times over the years, as well as other moments in life where people make tremendous sacrifices to help others.

When people lose their health, they often become helpless and discouraged, much like I had nearly felt standing on the side of that road.

Throughout medical school, and later in my career, I have tried to reach out to patients when they need it most. One of the things I valued even then was having the time to sit with patients, answer their questions, and offer reassurance when they felt overwhelmed.

No patients showed more gratitude than the rural villagers of Jamaica. During that mission trip we helped provide care to hundreds of patients in villages where local physicians rarely traveled. Relying largely on physical exam and limited diagnostic tools, we treated what we could and counseled where we couldn’t.

It didn’t take long to appreciate the burden of disease that comes with limited preventive care. But it also reinforced how much patients valued time, explanation, and human connection just as much as treatment.

Looking back, that roadside experience and that mission trip shaped more of my approach to medicine than I probably realized at the time.

Both reminded me that medicine, at its core, is an act of service.

And sometimes the most meaningful thing we can do is simply pull over and help.

As I got older, I spent time behind the counter of my father’s pharmacy, watching compounds being mixed and liquids poured into smaller bottles. I remember being fascinated by the process and wanting to be part of it. That curiosity never really went away. After a brief start as a hospital pharmacist, I realized I wanted to be closer to patient care and more involved in diagnostic decision making, which ultimately led me back to medical school.

During my training, I realized that oncology, despite its emotional weight, was a good fit for me. Most days, we are faced with challenging cases and asked to come up with a thoughtful plan in the face of serious disease. The diagnostic work is a big part of that, and it remains one of the most important responsibilities of my role.

Over the years, I have also learned that not every case comes with a clear diagnosis or a straightforward solution. Oncology is complex. Cancer biology varies from patient to patient, and sometimes even within the same patient. Most of the time, the pieces eventually come together.

Sometimes they do not.

Here is a case that highlights one of those situations.

A kind man in his mid 60s recently came to see me after noticing an enlarged lymph node in his neck. Around the same time, his primary care physician had been evaluating him for fatigue and unintentional weight loss.

He underwent imaging of the chest, abdomen, and pelvis, which unfortunately revealed several abnormalities. There were enlarged lymph nodes in the neck, additional spots in his lungs, and lesions in the liver that looked consistent with metastatic disease. At that point, it was clear this was cancer, though the specific type and site of origin had yet to be determined.

We biopsied one of the lymph nodes. The pathology confirmed cancer, but the cells were poorly differentiated, meaning they did not clearly resemble a specific tissue of origin. We also biopsied a lesion in the liver, but that sample did not provide a definitive diagnosis.

Looking closely at the cancer cells under the microscope, the pathologist was able to rule out some common cancers, such as prostate or lung cancer. But it remained unclear where the cancer had originally started. We ran additional specialized tests and ordered further imaging. Each step added information, but the full picture never quite came together. This was cancer that had spread to multiple sites without a clear point of origin.

There is a name for this in oncology. It is called cancer of unknown primary, or CUP.

CUP accounts for roughly 2-5% of all cancer diagnoses. It is not very common, but it is something every oncologist encounters. Historically, outcomes were often poor. Some of that reflected aggressive biology. Some of it reflected the limitations of our diagnostic tools. Without knowing where a cancer began, treatment often relied on broad chemotherapy based on patterns of spread and clinical judgment rather than precision.

That approach has since changed.

Now, next generation sequencing (NGS) has shifted how we approach these cases. Instead of focusing only on where a cancer might have started, we can look at what is driving it. Which genes are altered. Which growth pathways are active. What immune features the tumor carries. Molecular profiling now provides useful guidance in more than half of patients who would previously have been labeled as CUP.

In addition, newer tests can sometimes predict the most likely tissue of origin based on genetic and molecular patterns. These tissue-of-origin assays are not perfect, but they can add helpful context when traditional pathology falls short and occasionally help guide treatment decisions.

Immunotherapy has also changed the landscape. Certain biomarkers, such as mismatch repair deficiency (MMR), high tumor mutational burden (TMB), or strong PD-L1 expression, can point toward treatments that work across many cancer types, regardless of where the cancer started. Some patients experience durable responses. While uncertainty still exists, it is no longer the same kind of uncertainty we faced a decade ago.

From a patient’s perspective, this diagnosis can be deeply unsettling. When scans confirm cancer but cannot answer the most basic question, it is natural to worry that something is being missed or that treatment will be less effective. Those concerns are real, and they deserve to be acknowledged.

In these moments, my role changes slightly. I spend more time explaining what we know and being honest about what we do not. I talk through why a treatment plan still makes sense based on the biology in front of us, and how we will adapt as new information emerges. The goal is not perfect certainty. The goal is to be thoughtful and keep the patient informed.

I am sharing this case to raise awareness. Cancer of unknown primary has not disappeared, but it does not look the way it once did. The diagnostic work remains challenging. The tools are better. And for many patients, that difference matters.

In this patient’s case, molecular testing revealed a biomarker that strongly suggested the tumor might respond to immunotherapy, specifically very high PD-L1 expression. After a careful discussion of risks and benefits, we chose to pursue immunotherapy as the initial approach. So far, he is tolerating treatment well, and we remain hopeful for a meaningful response.

New technologies have brought greater clarity, especially in cases like the one I’ve described. But that isn’t always the outcome. Sometimes they help us ask better questions and think in new ways, still drawing on the same curiosity that first shaped my interest in medicine. The desire to understand how one thing can change another, and how that understanding can be used to help the person in front of me. With continued curiosity and ongoing research, our tools will keep improving, even when certainty remains out of reach.

Here’s a recent review on CUP from Dr. Tony Greco, perhaps the leading expert in this space. Dr Greco has helped bring many novel ideas to this diagnostic dilemma over the years.

Cancer of Unknown Primary Site: A New Era of Practice-Changing Approaches to Diagnosis, Staging, and Precision Therapy

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More articles on diagnosis and staging of cancer:

—Dan

Imaging is part of almost every cancer conversation. At some point, we start talking about scans and why one might make more sense than another. The goal is usually the same: to get a better understanding of what’s going on with the cancer right now and to help decide how to move forward.

These decisions shouldn’t be automatic. When I’m sitting with a patient and we’re talking about imaging, we’re trying to be clear about the question in front of us and how best to answer it. “Scanxiety” is real and being thoughtful about when and why we order these tests is part of good care.

Concerns about radiation exposure over time, prior experiences with contrast dye, or discomfort with MRI related to claustrophobia often shape the plan. Patient input helps guide which test fits best and helps ensure they’re not just along for the ride.

The scan is a tool. The person is the focus.

Once the question is clear, the next step is choosing the imaging that is most likely to give us useful information.

What imaging can and cannot show

No imaging test can see individual cancer cells. Scans do not detect microscopic disease or tiny clusters of cancer cells circulating in the bloodstream. All current imaging operates at a scale where disease has to reach a certain size or level of activity to be visible.

What imaging can show are patterns that are large enough to influence decisions. Changes in tumor size. Differences in density or signal. Areas that appear more metabolically active. Those findings help us track disease over time and evaluate response to treatment, even though they are always indirect measures of what’s happening biologically.

That limitation applies to every imaging modality and explains why scans are helpful, but never definitive on their own.

CT scans: anatomic assessment and longitudinal tracking

CT scans, sometimes called CAT scans, are the most commonly used imaging test in oncology. They rely on X-rays to create detailed cross-sectional images and are particularly good at showing anatomy. Tumor size, shape, and location are where CT performs best.

CT is often the backbone of cancer imaging at diagnosis, during treatment, and in surveillance afterward. It allows for consistent measurements over time, which is critical when we’re trying to determine whether disease is responding, stable, or progressing. CT scans are fast and widely available, and the short scan time can be an advantage for patients who are uncomfortable or anxious.

CT scans do involve ionizing radiation, though typically less than PET scans. Many CT studies also use contrast, either oral, intravenous, or both. Iodine-based contrast improves visualization of organs, blood vessels, and lymph nodes, which often makes interpretation more reliable. That benefit has to be balanced against prior reactions, kidney function, and patient tolerance.

PET scans: metabolic activity and biologic signal

PET scans provide a different layer of information. Rather than focusing on structure, they assess metabolic activity. We often describe this activity as “hot” or “cold.”

Most PET scans in oncology use a glucose-based radiotracer called FDG. Because many cancer cells have altered metabolism and increased glucose uptake, areas of active disease often appear “hot” as regions of increased signal activity. This can allow PET scans to identify disease that may not yet be causing obvious anatomic changes on CT. This can be quantified as well, and this is where you see “SUV” or standard uptake value often on the PET scan reports.

This sensitivity is also what makes PET scans more challenging to interpret. FDG uptake is not specific to cancer. Inflammation, infection, tissue repair, and certain autoimmune or inflammatory conditions can all produce increased signal. Sarcoidosis is a classic example of a benign condition that can closely mimic malignancy on PET imaging.

Spatial resolution can affect things as well. For a lesion to be reliably detected on PET, it generally needs to be on the order of a centimeter or larger. Small lesions can appear PET-negative even when they are cancerous. A normal PET scan does not mean cancer is absent at a microscopic level. It means there is no metabolically active disease large enough to be detected.

PET scans expose patients to more radiation than CT alone and are more expensive. For that reason, they are typically reserved for situations where metabolic information is likely to change management. This is particularly true in cancers like lymphoma and sometimes melanoma, where treatment response can be better reflected by changes in activity than by changes in size, and where skin or soft tissue disease can be difficult to assess with CT alone.

Unlike CT scans, PET scans usually do not require oral or IV contrast, which some patients prefer.

MRI: high soft-tissue contrast without radiation

MRI uses magnetic fields and radiofrequency signals rather than ionizing radiation. It provides excellent soft-tissue contrast and is especially useful for imaging the brain, spinal cord, liver, pelvis, and certain musculoskeletal and soft-tissue tumors.

MRI is often chosen when anatomic detail is critical or when limiting radiation exposure over time is a priority, particularly in younger patients or those expected to undergo long-term surveillance. It can also help clarify findings seen on CT or PET.

The limitations of MRI are largely practical. Scan times are longer, and the confined space can be difficult for patients with claustrophobia. Motion sensitivity can also affect image quality. These are all factors we consider as part of the decision-making process.

Ultrasound: targeted evaluation without radiation

Ultrasound uses sound waves and involves no radiation exposure. It is commonly used for breast imaging, thyroid nodules, superficial lymph nodes, and for guiding biopsies.

Ultrasound is well suited for targeted questions, particularly in superficial structures. It is less useful for comprehensive staging or whole-body assessment and is more dependent on operator technique, which limits its role in many cancers.

How imaging decisions come together

Choosing an imaging test reflects a combination of disease biology, clinical context, and patient-specific factors. The type of cancer, typical patterns of spread, phase of care, and the specific clinical question all play a role.

Patient comfort and preferences matter. If MRI is intolerable for someone, that affects the plan. If cumulative radiation exposure is a concern, alternatives are considered when feasible. Some cancers behave in ways that make one modality far more informative than another.

There are also system-level constraints. Insurance coverage and prior authorization requirements can influence which scans are available and how often they can be performed. These limitations can be frustrating, but they are part of the reality clinicians and patients navigate together.

Questions people still ask after we talk about imaging

Why don’t all patients get routine scans after finishing cancer treatment to look for recurrence?
For some early-stage cancers, including early-stage breast cancer, routine surveillance scans have not been shown to improve outcomes. Recurrences in these settings are often first detected by symptoms, physical exams, or routine labs rather than imaging.

Regular scanning also increases false positives, anxiety, radiation exposure, and follow-up procedures without clear benefit for many patients. Imaging after treatment is usually tailored to recurrence risk, cancer biology, and whether early detection would clearly change management.

Can scans be combined to get the best information?
Sometimes. PET-CT is a common example, combining metabolic and anatomic information. In other cases, different scans are done at different times to answer different questions.

More imaging is not always better. Each test adds cost, radiation, and the chance of incidental findings that may not be clinically meaningful. The goal is the right information, not the most information.

Should I be worried about all this radiation?
Radiation exposure from medical imaging is real and cumulative. That said, the dose from any single scan is small, and modern imaging protocols are designed to minimize exposure.

In cancer care, scans are ordered because the information they provide is expected to outweigh that risk. For patients who need repeated imaging, especially younger patients, radiation exposure is actively considered when choosing modalities and spacing scans.

If MRI doesn’t use radiation, why don’t we use it more than CT?
MRI has advantages, but it also has limits. It takes longer, is more sensitive to motion, and can be difficult for people with claustrophobia. It is also not the best tool for every organ system or cancer type.

CT scans are faster, more widely available, and better suited for imaging the lungs and many abdominal structures. In many cases, CT provides exactly the information needed in a more practical way.

Why does contrast make me feel warm or like I have to pee?
This is common with iodine-based contrast used for CT scans. The sensation comes from temporary blood vessel dilation and how the contrast circulates through the body. It can feel intense but usually lasts only seconds and is harmless.

MRI contrast typically does not cause the same sensation.

If I’m allergic to shellfish, can I still get iodinated contrast?
Yes. Shellfish allergies are related to proteins in shellfish, not iodine itself. Having a shellfish allergy does not automatically increase the risk of a contrast reaction.

What matters more is whether you’ve had a prior reaction to contrast. That history should always be discussed, and there are strategies to reduce risk or choose alternative imaging when needed.

Imaging works best as part of an ongoing conversation, not something you’re left to interpret on your own.

Other questions about imaging in cancer? Post them here and I will run through as many as I can.

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I see this every day in clinic. Patients come in prepared and thoughtful and still walk out realizing they forgot to ask something. Sometimes it’s a big question. Sometimes it’s a small one that didn’t feel urgent until later. That doesn’t mean the visit went poorly. It just means this is new territory. Most people have never had to do this before. It’s okay. This is hard to navigate on your own.

Over time, I’ve noticed certain questions can help anchor these conversations. Some of the questions aren’t easy ones, but they do help make sure decisions are grounded in the right context.

Below are ten questions I think are worth asking, along with why each one is important.

*At the bottom of the list you will find a free link to a Google Doc that is printable and shareable.

1. What are the specific goals of my treatment right now?

This is often the most important question, even if it feels uncomfortable to ask. Many misunderstandings in cancer care come from assumptions about goals that were never talked about out loud.

Some treatments are meant to cure. Others are meant to control disease, prolong life, or relieve symptoms. None of those goals are wrong, but they lead to very different decisions. When patients ask this question, it helps align expectations early and gives us a shared reference point if things become complicated later.

2. What are the potential risks and benefits of my treatment options?

Every cancer treatment has tradeoffs. What matters is not just whether a treatment works in general, but how likely it is to help someone like you, and at what cost.

This question opens the door to discussing benefits in a more concrete way, including absolute risk reduction or survival benefit when that information is available. It also creates space to talk honestly about side effects and uncertainty, which is often just as important.

3. Are there any clinical trials that I might be eligible for?

Clinical trials are not a last resort. They are often how we access promising treatments earlier and how progress in cancer care actually happens.

When patients ask about trials, it signals curiosity and openness, not dissatisfaction. It also reminds us to think beyond the standard menu of options, whether that means trials available locally or elsewhere. Even when a trial isn’t the right fit, the conversation itself is valuable.

4. What lifestyle changes, if any, could help support my treatment or recovery?

This question comes up more often than it used to, and I’m glad it does. Patients want to know what they can control in a situation that often feels out of their control.

Exercise, nutrition, sleep, stress, and gut health can all matter, but this is not about guilt or perfection. It’s about support. When framed this way, the conversation stays realistic and empowering rather than overwhelming.

5. How will we know if my treatment is working?

Cancer care is not static. Plans are made, reassessed, and adjusted over time. This question helps clarify how response will be measured and what signals we are watching.

It also opens the door to discussing how often we will step back and ask whether the current plan still makes sense. Patients deserve to know how decisions will be revisited, not just how they are made.

6. What side effects should I expect, and how can they be managed?

Most patients want to know what is common, what is manageable, and what is urgent. They don’t want to be surprised, and at the same time, they don’t want to feel like they are bothering the office unnecessarily.

This question helps set expectations and gives patients clearer guidance about when to call, when to wait, and when something truly needs attention. That clarity reduces anxiety for everyone involved.

7. Are there any genetic or molecular tests that could personalize my care?

Cancer treatment is increasingly guided by molecular information, but testing is not always one-and-done. New results can be helpful later, even if they don’t change the plan today.

Asking this question helps ensure that personalization is part of the ongoing conversation and not something that gets overlooked as care moves forward.

8. How do we balance quality of life with aggressive treatment over time?

This is one of the hardest and most important questions. It acknowledges that treatment intensity and quality of life are not separate issues.

When patients ask this, it creates space to talk about tradeoffs, values, and what matters most at different stages of care. It also helps normalize conversations about palliative care as a support that can exist alongside treatment, not instead of it.

9. What happens if this treatment stops working?

Many patients worry about this, even if they don’t say it out loud. Asking the question brings uncertainty into the open.

This conversation often brings reassurance. In many cases, there are next steps, and there is time to make decisions thoughtfully rather than urgently. Knowing that ahead of time can be reassuring.

10. What support is available to help me stay mentally and emotionally strong?

Cancer affects more than the body. This question acknowledges that reality without making it the center of the visit.

Support might mean counseling, support groups, mindfulness practices, or simply knowing who to call when things feel off. By bringing up emotional health as part of care it gives patients permission to ask for help when they need it.

You do not need to ask every one of these questions at every visit. Cancer care unfolds over time. Early visits often focus on understanding the diagnosis and plan. Later visits may center on side effects, quality of life, or next steps. What’s most important now will change, and that’s expected.

Good cancer care works best as a partnership. The oncology team brings experience and medical judgment. Patients bring their lives, values, and goals. Thoughtful questions help those things meet in the same room.

If you’d like a printable version of these questions to bring to an appointment, you can download the editable handout here:

Download these questions as an editable Google Doc handout. Feel free to “restack” within Substack as well.

10 Questions to Share With Your Oncology Provider

Some may also find this helpful for navigating a cancer diagnosis:

That sometimes surprises people, especially early on, when staging feels like an important thing to know. I understand why. It’s one of the few cancer terms people recognize, and it feels like it should explain where things stand and what might come next.

But what I’ve learned when someone has just been diagnosed, they’re still trying to absorb something much more basic. They’re coming to terms with the fact that they have cancer at all. In that moment, reducing everything to a word or a number can feel like too much. People aren’t ready to be summarized by a stage before they’ve had time to understand what this diagnosis actually means for them.

So, when staging comes up, I explain it simply. Stage describes where the cancer is in the body and how far it has spread. In most cancers, it’s summarized as a number from I to IV. Lower stages usually mean the cancer is more localized. Higher stages mean it’s more widespread. That framework mostly helps guide our testing and gives oncologists a shared language.

What stage doesn’t tell me is how the cancer is behaving.

It doesn’t tell me how fast things are moving, whether treatment is needed now or later, or what living with the disease feels like day to day. I’ve taken care of many people with the same stage of cancer whose experiences look very different, and that’s actually pretty common.

I also see why focusing on stage alone can be misleading.

Some stage I cancers behave very aggressively and need prompt, intensive treatment. Triple-negative breast cancer is a good example, where biology often matters more than stage. At the same time, there are cancers diagnosed at stage IV that behave in a much more indolent way.

Follicular lymphoma is one example. I see people with stage IV follicular lymphoma who feel well, have no symptoms, and are living full, active lives. In that situation, the words “stage IV” sound alarming, but the biology tells a different story. If the lymphoma is behaving itself and not causing problems, treatment often isn’t the right next step. Careful observation usually is.

Melanoma offers another example. Even when it has spread, there are situations where stage IV disease can be treated very effectively, and often cured with immunotherapy. Diseases like multiple myeloma, similarly, can often be treated and managed for many years despite being advanced in stage.

This is why I’m careful not to let stage define the conversation, especially at the beginning.

Staging systems are useful. But we have to remember they were created to help doctors communicate with one another and to standardize how we study cancer. Even then, they’re still mostly about anatomy. They tell us location but don’t capture pace, symptoms, or how a diagnosis fits into someone’s life.

Treatment plans evolve. We learn more over time. What makes sense today may look different months or years from now. Stage helps orient us early on, but it doesn’t lock anyone into a single path.

The heart of the conversation is always about how the cancer is affecting the patient and how to move forward in a way that fits the person living with it.

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The Oncology Underground

Kind Suggestion: Eliminate "Staging" from the cancer conversation, for heaven's sake...

So therefore… If I may…

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8 months ago · 28 likes · 13 comments · Hans Casteels

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I started this Substack because I felt a growing disconnect between what cancer care actually looks like inside the clinic and how it’s talked about online. Online, it often seems that everything about cancer is framed with certainty, which feels far removed from what I see with my patients every day. Curative was my attempt to be honest about that and to create a space grounded in real-world experience.

Over the past year, Curative has grown into something I didn’t expect. What has stood out most is the community that has formed here. I hear from patients trying to better understand their risk of recurrence. I hear from caregivers looking for more clarity. I also hear from clinicians who recognize familiar challenges in their own work. I’m grateful that people have shown up with questions and continue to stay engaged.

This year I spent a lot of time talking about cancer prevention and integrative oncology because I believe they deserve more attention. We explored exercise, nutrition, alcohol, sleep, and metabolic health as factors that influence cancer risk and outcomes. We also spent time on breakthroughs such as immunotherapy, emerging biomarkers, and clinical trials, and what it takes to bring these ideas into the clinic. These conversations reflect how I think about oncology every day, grounded in evidence while remaining open to learning from new approaches and perspectives.

I also made space to talk about the human side of oncology. I wrote about conversations that never get easier and the emotional weight that comes with this job. I wrote about the privilege of being invited into people’s lives during their most vulnerable moments. I try to write the way I see things in practice, grounded in science and honest about uncertainty.

Watching this community grow to nearly 5,000 subscribers in a year tells me that people want nuance and that they’re looking for the human side of oncology to be explained more clearly. That has been deeply encouraging.

As I look ahead to 2026, I’m excited about where Curative can go. I plan to continue sharing clear, patient-centered explanations, to keep a strong focus on prevention, and to expand “Ask the Oncologist” pieces. I also hope to spend more time in conversation through live discussions and interviews, bringing more voices into this space.

Cancer care continues to evolve, and so does the way we talk about it. My goal with Curative remains to build understanding, earn trust, and help people feel more informed and supported as they navigate cancer, prevention, or survivorship.

I’m grateful you all are here.

Here’s to a hopeful 2026 ahead.

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I had just come out of fellowship. Like any new doctor, I was eager to do a good job. In my former life I was a pharmacist, so I found a lot of comfort in numbers and details. I could read a survival curve, digest a clinical trial, and analyze statistics with ease. I felt that if I knew the medical literature inside and out, I could serve my patients well.

But knowing the data is one thing. Sitting across from a human being who is asking you life-or-death questions is something else entirely. There was no faculty member or attending in the room to guide me anymore. It was just me and Fred in that exam room.

Fred was a retired dentist and an Army veteran. He was warm, funny, and honest to a fault. He was the kind of guy who looked out for everyone else before himself. It was 2014. The news was not good. He had been diagnosed with metastatic esophageal cancer. It had spread to his lymph nodes, lungs, and liver.

He came to the appointment alone. I know now that he did this to protect his wife and daughters. He wanted to absorb the blow himself first so he did not have to worry them with the raw immediate details.

We talked through the options. Chemotherapy was our main tool back then. I explained the situation as clearly as I could. Fred listened carefully. Having been in the medical field, he seemed to have a clear understanding of what was in front of him. Then he cut through the medical jargon with a question that every oncologist will hear, phrased in his own direct manner.

“Doc, how long do I got? I mean really. Tell me the honest truth so I can plan things for my family.”

The Mistake of Specificity

I was a bit taken aback. It was one of the first times I had fielded that question entirely on my own.

I leaned on the only thing I felt I could trust at that moment. The math. I mentally pulled up the survival curves from the journals I studied. For metastatic esophageal cancer at that time, the median survival was poor.

“About twelve months,” I told him.

I was not trying to be harsh. I thought I was being responsible. I believed that honesty meant giving him the specific number from the data.

Fred accepted it. He thanked me for my candor. He went home and he began to plan his life as if it were ending in a year.

But biology has a way of humbling us.

We sent his tissue out for testing. It came back HER2 positive. This allowed us to add targeted therapy to his chemotherapy. Fred did not just respond. He had a complete response. The cancer disappeared from his scans.

Fred did not live for twelve months. He lived for nearly seven years.

He stayed in remission. He traveled with his grandkids. He went on vacations. He even went skydiving to cross a big item off his bucket list. (He did this despite my medical advice. I learned from that mistake as well. The importance of letting patients live is a topic for a future article.)

I saw Fred often over those years and we became close friends. Once he had sailed past that one-year mark, he would come in with a grin and say, “Doc, you know what? I’m playing with house money now.”

He never held that initial prediction against me. In fact, he told me he appreciated the honesty because it lit a fire under him to do the things he loved. But for me, Fred was a walking lesson. He taught me that statistics describe populations. They do not define the person sitting in front of me.

The Science and Art of Prediction

Fred’s case forced me to reconcile the difference between population data and individual lives.

When patients ask “how long,” they are asking for a prophecy. But as doctors, we only have probabilities. We look at survival curves that look something like this:

The “median survival” is just the point where 50% of people are still alive. But look at the right side of that curve. There is a “long tail.” There are people who live years longer than the average due to unique genetics, immune responses, or sheer biological luck. Fred lived in the tail of the curve.

But when I first met Fred, I did not know how to explain that possibility while still being realistic.

Research shows I am not alone in this struggle. The famous “optimism gap” described by researchers shows that clinicians often struggle to predict survival accurately. In fact, studies suggest we often overestimate survival significantly. We do this because we care. We want to be hopeful and we want to believe our treatments will work.

Conversely, when we try to be “realistic,” we risk being overly rigid. That is what I did with Fred.

The stakes are high because patients need the truth. Studies have shown that patients who misunderstand their prognosis often choose aggressive treatments that do not help them rather than focusing on quality of life. Most patients want to know. They need to plan. They have anniversaries to make and affairs to get in order.

The challenge is giving them the truth without stripping away the hope of being an outlier.

How I Talk About Prognosis Now

I still carry Fred with me into the clinic every day. When a patient asks me that difficult question now, I do not just quote a journal article. I use a clearer and more human framework:

1. Ask Permission and Assess Understanding

First, I ask where they are mentally. I might ask what their sense of the situation is, or how much detail they want to handle today. Some patients are like Fred and want the cold hard numbers. Others just want to know if they can book a cruise next summer. I try to meet them where they are.

2. Name the Uncertainty Directly

I am upfront about what I know and what I do not know. I explain that I can tell them what the statistics say about the average person, but I do not know yet how their specific biology will behave. I tell them I have been surprised before.

3. Talk in Ranges

I never give a single number anymore. I discuss a “best-case scenario” (the tail of the curve), a “worst-case scenario” (what we need to prepare for), and the “typical scenario” (what most people experience). This honors the uncertainty. It allows for hope without creating false promises.

4. Connect Prognosis to Goals

We do not plan for “12 months.” We plan for the granddaughter’s wedding in June. We plan for the family reunion. We look at the calendar and ask if that is a reasonable goal.

5. Keep the Door Open

I tell them that this is not a one-time conversation. As the disease changes, or as treatments work or do not work, we will keep talking. We will adjust our map as we see the terrain.

Closing Reflections

Fred taught me that while I might know the literature, I cannot know the future.

He showed me that living with a “deadline,” even an incorrect one, can sometimes clarify what matters most. He lived his unexpected years with a joy and intensity that I still admire.

These are the hardest conversations we have in Oncology. They require us to balance the cold reality of statistics with the warm complexity of human biology.

Now, when I sit across from a patient, I am honest about the gravity of their disease. But I also leave room for skydiving. I leave room for “house money.” Because sometimes the curve is wrong and life surprises us all.

Fred helped me understand that. I am grateful for the time we had and for the lessons he gave me simply by living his life.

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