Listen to Episode 44: Cancer, Aging and the New Science of Survivorship

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In the podcast, I talked about a moment from nearly a decade ago that has stayed with me. At the 2018 NCI Think Tank on Cancer and Accelerated Aging, my late mentor, colleague and friend, Dr. Arti Hurria, described watching some of her patients seemingly age in front of her during cancer treatment.

Her observation was simple: “We’re the ones aging them.”

Cancer and its treatments can affect many of the same biological systems involved in aging. In some survivors, frailty, cardiovascular disease, cognitive impairment, loss of muscle mass, and functional decline appear earlier than we would expect. Some of the strongest evidence comes from survivors of childhood cancer, where aging-related conditions can emerge remarkably early.

Oncology has understandably focused on whether treatment worked and whether the cancer returned. Those questions remain essential. But for someone who may live another 10, 20, or 30 years after cancer, we also need to ask what those years will look like.

• Are they maintaining strength and mobility?

• How is their cardiovascular, metabolic, and cognitive health?

• Are they able to work, maintain relationships, and participate in the activities that give their life meaning?

Well-researched measures, such as gait speed, grip strength, physical function, symptoms, and patient-reported outcomes can tell us a great deal. Exercise, sleep, social connection, and rehabilitation may also help preserve function and resilience.

But knowing what to measure is only part of the problem.

There is a chasm between what survivorship research tells us and what routinely happens in practice.

The World Health Organization’s newly released Global Status Report on Cancer 2026 describes the same broader problem: the primary gap is increasingly not between what we know and what we do not know, but between what we know and what we actually implement. Survivorship care and rehabilitation are specifically identified as areas where progress remains insufficient.

That closely mirrors something I said in the podcast: survivorship is actually quite well researched. What we have not done nearly as well is build the infrastructure to consistently translate that knowledge into care.

The WHO report also argues that the value of cancer care should be measured not only through survival, but through function and quality of life.

For people living years or decades after cancer, success should mean more than being alive. It should also mean preserving health, function, independence, cognition, and the ability to participate in a meaningful life.

That is where I think the next phase of survivorship needs to focus. I’d be grateful if you gave the podcast a listen.

Listen to Episode 44: Cancer, Aging and the New Science of Survivorship

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A cancer diagnosis often comes with an overwhelming amount of information and an equally overwhelming number of unanswered questions.

Stressed, frightened and facing cognitive overload, patients often leave appointments trying to remember what was discussed, sort through conflicting information online, and make sense of their symptoms, treatment decisions, side effects, relationships, and life after cancer. Even the best healthcare teams cannot be available every time a question arises.

Ellyn Winters-Robinson understands this experience firsthand. After her own breast cancer diagnosis four years ago, she wrote a book to help others navigate the challenges she encountered. But she soon realized that a book, while valuable, could only go so far. Patients needed information that was accessible, personalized, and available when and where they needed it most.

That insight ultimately led to AskEllyn, an AI-powered companion designed to help people affected by breast cancer find answers, support, and guidance throughout their journey. What began as one survivor’s effort to share what she had learned has evolved into a tool used in 100+ countries, 50+ languages and by organizations seeking new ways to digitally support the people they serve.

In this interview, I speak with Ellyn about her own cancer experience, the inspiration behind AskEllyn, the promise and limitations of artificial intelligence in healthcare, and what patients really need when navigating cancer.

Interview with Ellyn Winters-Robinson

1. Can you tell us a little about your own cancer experience and what inspired you to write your book?

I was diagnosed 4 years ago with multifocal, hormone receptive-positive breast cancer. I had three tumors in my left breast. I ended up with a double mastectomy, chemotherapy and radiation, and was in active treatment for the better part of a year. It was obviously a devastating diagnosis that came out of the blue. I had no family history of breast cancer and had always gone for regular mammograms. I remember feeling so bewildered, scared and alone. So, I turned to other women who had gone through a breast cancer diagnosis for support and wisdom and what they shared was immensely valuable. It inspired me to bottle up the knowledge and wisdom I had gained through my experience into a book to help others.

2. What problem were you trying to solve when you created AskEllyn? What needs were you hearing from patients that weren’t being met through traditional sources of information and support?

What I have learned over the last few years is that the psychosocial and emotional needs of patients and caregivers are often treated as “out of scope” in healthcare. Doctors are focused on the disease and saving your life – vitally important work, but they don’t really appreciate that the fallout from a diagnosis is far greater than the disease itself and extends far beyond the scope of care. From the moment of diagnosis, women and their families are scared out of their minds, they are lonely, they don’t know where to turn. Traditional support models that depend on peers in the cancer community are also limited in capacity. Online forums can sometimes amplify fear and collective trauma. In cultures where breast cancer is still regarded as a shameful diagnosis, people are reluctant to engage in peer support at all, or advocate for themselves in care.

Furthermore, the trauma for everyone continues for years after treatment ends.

AskEllyn takes my lived experience shared in my book and brings it to life in every language and in a format that can be accessed at any time of day the world over. It’s support at scale.

3. For people unfamiliar with the platform, how does AskEllyn actually work? What kinds of questions do people ask most often?

AskEllyn is a conversational AI that is infused with my lived experience as a breast cancer survivor. She is non-medical, designed to be private and will always be free to those who need her. You can literally chat with her about anything.

Think of her as a “breastie” that is available to talk and comfort you at any time of the day and in any language.

She is able to match the emotions you are expressing, help you prepare for appointments, make sense of what you are going through, and coach caregivers on how to support a loved one. I had one woman reach out to say that AskEllyn helped her see her scars for the first time. We’ve had others get her advice on curating a gift basket for a friend who was recently diagnosed. Some folks have told me they talk to her every day.

4. What have you learned about what patients need after a cancer diagnosis? Are there questions or concerns that consistently surprise you?

I don’t think it surprises me, but the emotional upheaval and trauma that comes with a diagnosis is profound and it affects the caregivers as well as the patient. I’ll often say we are on the trauma bus together. It did surprise me to learn that clinical care teams don’t really appreciate how significant this trauma is and how greatly it impacts individuals and families. They don’t see it. People hold it together in appointments, then fall apart in parking lots, or at 2 am. Breast cancer is particularly cruel because it leaves you scarred, infertile, in menopause, and in some cases bald and burned. Relationships crumble under the strain. One study showed that women with a cancer (or other life threatening) diagnosis are 6X more likely to experience partner abandonment than men who are diagnosed with a life-threatening disease. Breast cancer is also a trigger for domestic violence.

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5. Many people are excited about AI, while others are understandably cautious. How do you think about the role of AI in supporting patients with cancer? Where are its strengths, and where are its limitations? What guardrails are in place?

We were keenly aware in building AskEllyn that we would be placing a technology into the hands of a vulnerable individual, so we took great precautions to implement guardrails to ensure she would do no harm. She is strictly non-medical. She stays firmly in the friend zone. She is built to be fully private. We gather no data. The platform was developed using the contents of my book to help keep its responses grounded in my story and perspective.

Stepping away from AskEllyn, I think AI has significant potential to empower patients and to give them more agency in their healthcare conversations, and enable more meaningful shared decision making. That said, I am wildly uncomfortable with LLM implementations where patients are uploading their patient data. It is truly helpful to patients who are trying to connect the dots in care, but where is that data going and who is capitalizing on it? I worry that patients are being victimized by technology vendors who put their capital interests first. Organizations such as the Light Collective are addressing this concern with a Patient AI Bill of Rights Initiative. We want to make sure people are always protected.

6. AskEllyn has been adopted by organizations such as Cigna and you have ambitions to expand beyond breast cancer. What do you think made the model resonate with patients and healthcare organizations?

People emotionally connect with the lived experience they find in AskEllyn. It feels like you are talking to a friend who really understands and can empathize with your situation. I have been told it feels like she has a soul, which I take as a great compliment. So, this is a very different and unique form of audience engagement, which is what is attracting insurers like Cigna and others in retail health, cancer support and beyond. In a licensed model, we can enhance AskEllyn’s knowledge to make her organizationally, geographically and resource aware. Just imagine talking to a really smart friend you trust who is guiding you to the information you need in that moment. It’s easy, it’s not overwhelming, and it is experiential. We can also do really cool things, like have AskEllyn text you or talk to you on the phone.

I do have a vision for expanding this model – I call it conversational care – where every diagnosis has lived experience and patient intelligence baked into the care journey. It’s happening organically already. My desire is to accelerate that and expand faster, because it is absolutely needed.

7. Looking ahead, how do you think AI will change the cancer experience over the next decade? What opportunities excite you most, and what concerns do you think we should be paying attention to?

Oh my gosh, there are so many exciting advancements and uses of AI in cancer care and the cancer experience, from giving radiologists superpowers to spot cancer sooner, to analyzing genomes for faster drug discovery and precision oncology treatments, to offering emotional support and coaching for patients and families across every diagnosis through conversational care, so that no one diagnosed walks alone.

Jen’s Reflection

What stands out to me is how Ellyn used her own cancer experience to create something interactive and responsive to needs we know are common across the cancer continuum: loneliness, emotional distress, uncertainty, and the desire to connect with someone who understands.

Many of these needs emerge outside the clinic. They surface in parking lots, late at night, between appointments, and long after active treatment has ended. Even when psychosocial support is available, it may be difficult to access, unaffordable, or unable to meet people at the exact moment they need it. AskEllyn attempts to fill part of that space by offering a form of support that is available whenever someone needs to engage with it.

I expect AI will increasingly be used to respond to the changing needs of people living with and beyond cancer. Its value may lie partly in its availability and adaptability: it can help people prepare questions, process an experience, find language for what they are feeling, or feel less alone in a difficult moment.

But availability should not be confused with safety, clinical expertise, or human connection. As these tools become more common, we will need to remain clear about what they can and cannot provide, when someone should be connected to professional help, how responses are developed and evaluated, and what happens to the information people share.

Those protections are especially important when people turn to AI because mental health care is often difficult to access. The promise is meaningful, but so is the responsibility to ensure that people seeking support are not asked to trade privacy, safety, or appropriate care for convenience.

If you would like to learn more about Ellyn and her work, you can follow her on:

• Instagram @flatplease

• Substack, Linkedin, TikTok, Facebook @

Ellyn Winters-Robinson is a breast cancer survivor, entrepreneur, and founder of AskEllyn.ai, an AI-powered companion providing 24/7 psychosocial support to women navigating cancer. She is a leading voice in empathetic AI, patient advocacy, and the power of storytelling in healthcare. Ellyn works at the intersection of lived experience and technology to improve access, equity, and emotional support for patients worldwide.

A bipartisan bill called the Lainie Jones Comprehensive Cancer Survivorship Act of 2026 was introduced in Congress in May as H.R. 8839. It has not passed, but I think it is worth paying attention to because it focuses on survivorship care across the cancer continuum, including care planning, coordination between oncology and primary care, employment support, quality-of-life services, fertility services, pediatric and adolescent survivorship transitions, and better standards for survivorship care.

One part that stood out to me is survivorship care planning. A survivorship care plan is supposed to summarize a person’s cancer diagnosis and treatment, outline recommended follow-up care, and identify possible late and long-term health effects.

In theory, it is a bridge between cancer treatment and the rest of someone’s life. In practice, many survivors never receive one. Advocates commonly cite that only 1 in 3 survivors receive a survivorship care plan, and published estimates suggest survivorship care plan implementation varies widely across cancer programs.

So I want to ask this community:

I’m asking because survivorship care plans raise a bigger question about what information people with cancer are given after diagnosis or when treatment ends.

My guess is that most people need more than a static plan, but I would rather hear from you.

• What information did you actually receive?

• What did you have to figure out on your own?

• What would have helped you feel more prepared for life after cancer treatment?

If you feel comfortable sharing more, I would love to hear your experience either in the comments or DM.

Want to learn more or take action?

If this issue matters to you, you can read more about the bill through Cancer Nation or Children’s Cancer Cause.

Children’s Cancer Cause also has a Write Congress option for people who want a guided way to contact their elected officials.

Cancer Nation suggests asking your U.S. Representative to co-sponsor H.R. 8839, the Lainie Jones Comprehensive Cancer Survivorship Act, and sharing why survivorship care matters to you.

When we talk about cancer, we often focus on diagnosis, treatment, and survival. Less often do we talk about who gets to make those decisions in the first place.

For most adults, medical decision-making is difficult enough. But what happens when a serious diagnosis arrives during adolescence, when independence is still emerging and family beliefs, values, and fears can profoundly shape the path forward?

Kati Rae was 17 years old when she was diagnosed with a rare head and neck cancer. While she wanted to pursue conventional treatment, her parents believed a different approach was the better path. What followed was not only a battle against cancer, but also a struggle for agency, autonomy, and the right to make decisions about her own body and future.

Today, more than a decade later, Kati reflects on that experience with remarkable thoughtfulness and nuance. Our conversation explores what it means to advocate for yourself when you’re still a teenager, how those experiences shaped her relationships and sense of identity, and why she has spent years grappling with a question many survivors may recognize: what does it actually mean to call yourself a cancer survivor?

This interview is about understanding the complexity of decision-making for people with cancer, the importance of patient voice, and the long-lasting impact that cancer can have after treatment ends.

Interview with Kati Rae

1. Can you tell us a little about yourself and your cancer diagnosis? What do you remember most about being diagnosed with a rare head and neck cancer at age 17?

I had just turned 17 when I was diagnosed with low-grade fibromyxoid sarcoma—a rare soft tissue cancer sitting at the base of my skull, near my spinal cord. I remember the first thing my oncologist said after the biopsy came back positive: “This is not your fault.” It was the first thing out of his mouth. I’ve thought about that a lot since. He felt the need to lead with it, which means enough people walk out of that office believing they caused their own cancer that it became part of his script. That detail has never left me.

The treatment plan was blunt. Radiation first, to try to shrink the tumor. Then surgery—the only real option, since chemotherapy doesn’t work for this type. The surgeon described it as taking “an ice cream scoop” out of my neck. Permanent disability. Limited mobility. Possible paralysis. Nerve damage. Skin grafts. I had just gotten my driver’s license, and one of my first thoughts was that I wouldn’t be able to drive.

Then my parents and I left to get a “second opinion.”

But, we didn’t go back.

2. One of the most unique parts of your story is that you wanted treatment, but your parents did not. Can you share what that experience was like? How did you navigate those disagreements, and what ultimately led you to pursue treatment at Mayo Clinic?

My parents didn’t believe in conventional medicine. My dad had gone deep into alternative medicine and conspiracy thinking years before my diagnosis. My grandmother’s (his mom’s) terminal breast cancer diagnosis six months earlier had only accelerated it. She believed, because of an alternative cancer cure, that she was cancer free. She announced this to the entire family, despite looking very ill. So, after my biopsy came back positive, they took me to see this supposed “healer” named John in a motel room in rural South Dakota.

John ran what I now recognize as a completely standard alternative cancer cure operation: organic raw foods, supplements, and detox. The detox was ipecac—a vomiting agent that isn’t even manufactured anymore—three times a day, every day. Vomiting has been my biggest fear my entire life. I was the only child in the room, and the only person there who thought the whole thing was ridiculous. John eventually declared me cured and sent me home with a visible tumor still on my neck.

I went back to senior year like everything was normal. I was panicking internally.

A friend’s parent gave me the idea to pursue emancipation. I told my parents I’d hired a lawyer (I hadn’t) and that I would find a way to get treatment with or without them. They knew they’d lose in court and potentially face criminal charges. So, they took me to Mayo Clinic. My dad demanded a second biopsy to prove I no longer had cancer.

The second biopsy showed that I still had cancer and it had gotten worse.

The doctors asked if I wanted surgery. I said yes. They operated the next day.

3. Looking back now, how do you think about agency and decision-making in healthcare, especially for adolescents facing serious illnesses? What do you wish clinicians, parents, and policymakers better understood?

No one asked me directly what I wanted until I went to Mayo Clinic.

Every other conversation happened without me. Documents, decisions, and treatment plans were all routed through my parents by design.

I don’t blame the original medical team. My parents told them they were seeking a second opinion, which is their right. They were lying, but there was no mechanism to know that. The system assumed parental consent was the same as parental care. Those aren’t always the same thing.

What I’d want clinicians to understand is simple: ask the patient. Not just the parents. Create space—even briefly, even informally—for the adolescent to say what they want. It costs nothing and it might be the only opening they get.

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The policy piece is harder. Waiting until 18 for any real bodily autonomy can have permanent, life-altering consequences. Mine almost did. We need to seriously consider a legal age of medical consent that comes before 18. But that reform exists inside a system where a teenager can’t walk into a hospital alone and demand treatment. You need insurance. You need money. You need an adult. I had to invent a lawyer to get my parents to take me to Mayo, and it’s only because they feared the potential consequences.

What that typically looks like is forcing parents to comply with treatment plans through CPS. But the doctors have to know that’s happening. The first one didn’t. Courts can also be slow, and children often get worse and die during that process. Many times, criminal charges aren’t brought against the parents unless the child has already died. Then they might face child abuse, neglect, endangerment, or manslaughter charges, depending on the situation and state. But those meaningful criminal consequences often come too late—after the child has died.

4. Your story is often framed through the lens of treatment decisions, but I’m curious about the emotional side. How did it affect your sense of self?

Emotionally, I shut down. It was the only way to protect myself.

I went to follow-up appointments alone every 3 to 6 months to find out if the cancer had come back. With my type of cancer, there’s no five-year window of safety—it can return at any point. So that’s how I lived my twenties. Waiting. Numb. Disconnected from the experience in a way that probably looked like fine from the outside. Then, 5 years passed and I was somehow still alive and faced with the decision: what am I going to make of my life if I live?

I didn’t come out of it with a new appreciation for life or my body. That’s the expected arc—the cancer survivor who learns to be grateful. I was just in survival mode, and then I stayed in survival mode long after the immediate threat was gone. Preparing for the shoe to drop isn’t the same as living. It also didn’t make me feel like a particularly ‘good’ cancer survivor. I thought about other survivors fighting long battles with people around them who desperately wanted them to survive. I didn’t have that. Sometimes I wished I could trade places with them.

5. How did those experiences affect your relationships with your family?

It affected every relationship in my family. I was estranged from my extended family for a long time. What we eventually learned was that my dad had been lying to all of us in order to keep me isolated and keep the secret about treatment. That isolation wasn’t incidental. It was how the whole thing worked. I didn’t understand the full scope of what had happened until I reconnected with family and got access to my medical records years later.

My immediate family is a different situation. I don’t have much of a relationship with them. They’ve never reckoned with the harm they caused. They don’t see it as harm. That’s probably the hardest part. Not the anger, but the absence of any acknowledgment that there’s something to be angry about.

6. You’ve spoken openly about struggling to identify as a cancer survivor because your treatment experience looked different from many others’. Can you tell us more about that? Where do you think those feelings come from?

Cancer has a script. Chemotherapy. Hair loss. Months of treatment. A slow, hard fight toward remission. That’s what survivorship looks like culturally. My experience didn’t match that at all.

I had one surgery. One day I had cancer; the next I didn’t. And because my experience wasn’t as grueling as what most people picture when they hear “cancer survivor,” I internalized the idea that I hadn’t really earned the label. I was suffering in a different way, but not one I was sure that counted because I couldn’t find anyone that I related to. I barely had anyone to talk about it with.

I still hesitate sometimes. There’s an unspoken hierarchy in how we talk about cancer—the harder the treatment, the more legitimate the survivor. The “battle” framing does that. It implies there’s a fight to be measured, a level of suffering that qualifies you. If you didn’t go through the right kind of hell, you’re not quite in the club.

I don’t know exactly where that feeling comes from, whether it’s something I absorbed from culture, my awe at other survivors, or from my own need to make sense of an experience that didn’t follow a normal path. Probably all three.

7. How has your understanding of survivorship changed as you’ve gotten older?

Yeah, I’ve made peace with not fitting the mold. My survivorship is weird and nonlinear and doesn’t map onto the cultural script. And that’s ok. The experience is mine.

I wish I would have had access to more resources for support at the time. I think that would have made a huge difference. The part about feeling ‘left out’ has never come from other cancer survivors, just my own internal worries. Being a part of that community probably would have done me wonders in my healing journey. I say that, knowing even that phrase is loaded.

Writing has helped me process things a lot, and I hope that the things I write about will help other people out there too. I know that I was always searching for other people like me, so maybe putting my voice out there will mean someone finds me and feels a little less alone.

8. What would you want other young people facing difficult medical decisions to know? And what gives you hope today?

Trust yourself. Especially if your instincts are being overridden by the adults around them. I was 17, I had a visible tumor on my neck, and I knew something was wrong with what was happening to me. Vitamins and organic produce was never going to fix it. I wasn’t crazy. I was right. That knowledge, my stubbornness, and my willingness to be tenacious is what got me to Mayo Clinic and it’s the only reason I’m alive today.

Find an ally if you can. Tell someone. Know that emancipation exists. The legal system is slow and imperfect, but it’s there. It’s better than being polite and dying.

As for hope, I find it in the people doing the work of pulling back the curtain on wellness information and alternative medicine. Writers, medical professionals, researchers, and journalists are making it harder for these industries to operate in the dark. That work matters to me personally, and it’s part of why I do what I do now.

What I hope is that knowledge can reach people before desperation does. Because desperation is exactly what alternative medicine preys on. Fear. Exhaustion. The feeling that conventional medicine has failed you. Those are real feelings. The exploitation of them is what’s unforgivable. If stories like mine make even one person pause before handing money to someone in a motel room with a supplement protocol, that’s enough.

Jen’s Reflection

Kati’s story brought me to tears.

What affected me most was not only that she developed a rare cancer at 17, but that she had to fight for the right to receive treatment while she was still legally a child. She understood that she was seriously ill and wanted conventional care, yet she was not old enough to independently access the treatment that could save her life.

Her story exposes a profound vulnerability in how we care for adolescents with serious illness. Healthcare systems generally assume that parents will act in their child’s best interests, but parental authority and parental protection are not always the same thing. When clinicians communicate only through parents, a young person’s wishes, fears, and understanding of their own illness can disappear from the conversation.

The lesson Kati offers clinicians is simple and urgent: ask the patient. Speak with adolescents directly. Give them an opportunity to explain privately what they understand, what they want, and whether they feel safe with the decisions being made on their behalf. That conversation may be the only way to recognize when something is wrong.

Kati ultimately survived because she trusted her own judgment and continued to advocate for herself. Her story is a reminder that listening to young patients is an essential part of caring for them well. Their understanding, instincts, and wishes deserve a meaningful place in decisions about their bodies and their futures.

If you would like to learn more about Kati, you can follow her on Substack and Instagram at @thehealingdelusion.

Kati is a tech UX designer by trade who has spent her career conducting in-depth research, mapping systems, and designing visuals. In her spare time, she has been writing a book about wellness grifters for the past two years that she hopes to publish someday.

What should recovery after cancer actually look like?

For many survivors, fatigue, pain, anxiety, cognitive changes, sexual dysfunction, and difficulty returning to work can persist long after treatment ends. But perhaps we’ve become too quick to assume these are simply the price of surviving cancer.

That question became the focus of my conversation with Kelly McCabe, CEO and co-founder of Perci Health, the UK’s largest virtual cancer clinic. Prior to founding Perci, she worked as an oncology dietitian and later served as Chief Operating Officer of one of the UK’s largest private cancer hospital networks.

In our conversation, we discuss why universal healthcare does not automatically translate into effective survivorship care, why so many survivors quietly accept treatable symptoms as their “new normal,” and why Kelly believes oncology must move beyond helping people survive cancer toward helping them fully recover from it.

Interview with Kelly McCabe

Can you tell people a little about yourself and what specifically made you want to start Perci Health?

I trained as a cancer dietitian and spent many years working as a Macmillan professional, caring for people with cancer as part of multidisciplinary teams. Some of the most formative years were with head and neck cancer patients, where I got a real window into what excellent, coordinated care could look like during active treatment. The teams were extraordinary. The structure was there.

But there was always this moment where treatment would end, and everything would just... stop. Patients would describe it as a kind of abandonment. The intensity of support that had surrounded them for months would disappear almost overnight, even as they were dealing with fatigue, pain, difficulty eating, anxiety, loss of mobility, sexual dysfunction. Real, persistent, often preventable consequences that could go on for years.

What frustrated me most wasn’t the absence of evidence, it was the absence of ambition. The system kept asking people to cope. ‘This is your new normal,’ patients were told. Adapt. Manage. Be grateful you survived. I remember sitting with someone who’d been through intensive chemoradiation and was struggling enormously, and thinking: we have interventions for this. Why are we asking them to tolerate it?

There was also an unspoken social contract around gratitude, an expectation that surviving should be enough. But surviving and recovering are not the same thing. I kept seeing that gap, and eventually I couldn’t unsee it.

The other thing I noticed was that cancer itself was changing. People were living for years, sometimes decades, during and after treatment. Cancer was starting to behave more like a long-term condition. But our care systems were still organised around episodes; treatment, then discharge, then periodic follow-up. The mismatch between that structure and what patients actually needed felt increasingly impossible to ignore. That’s ultimately what became Perci.

How is care actually delivered at Perci Health, and what makes it different from what patients typically experience?

We built Perci around a simple observation: cancer doesn’t affect one organ, or one moment in time. It affects the whole person, across years. So often we heard from our members that they felt “their cancer was being treated, but not them as a person.”

We call our approach Performance Oncology. The term borrows from performance medicine, the idea of preparing people to tolerate challenges, recover faster, and maintain function, but we apply it to cancer care. It’s a whole-person, connected, data-driven way of supporting people through and beyond treatment.

In practice, that means every member has a dedicated cancer nurse who does a thorough holistic assessment and helps coordinate support across psychology, dietetics, physiotherapy, exercise medicine and other specialisms. The care is truly multidisciplinary, but crucially, the patient isn’t the one doing the coordinating, which is what happens far too often in traditional healthcare.

What I think makes us genuinely different is how we think about time. Cancer isn’t a single event anymore. For many people it’s a long-term condition, with needs that wax and wane over years. Someone might need intensive support during treatment, then very little for several months, then develop late effects or psychological distress much later. Traditional pathways assume a kind of linear progression that doesn’t reflect reality.

We use technology and remote monitoring to continuously understand how someone is doing, so we can respond when needs change rather than waiting for a crisis. The question we’re always trying to answer isn’t ‘where should this person be on the pathway?’, it’s ‘what does this person need right now?’. We are a million miles away from one-size-fits all solutions or time-bound rehab programmes.

When patients arrive at Perci, what do they think they need, and what do they actually end up needing?

This is one of the most important things we’ve learned, and honestly it came from getting it wrong early on.

We originally launched almost as a marketplace, assuming patients would know what kind of support they needed. We thought people would arrive saying ‘I need a psychologist’ or ‘I need a dietitian.’ What we quickly discovered is that people know what they’re experiencing, e.g. fatigue, difficulty eating, anxiety, pain, but they don’t necessarily know what will help.

Someone presenting with exhaustion might actually be dealing with sleep disruption, deconditioning, nutritional deficiency and anxiety all at once. Someone seeking emotional support might be living with significant physical limitations that are driving their distress. You pull on one thread and you find several others.

The other thing that struck me was how many people arrived having already accepted that their symptoms were permanent. They’d been told, sometimes explicitly, sometimes just through the absence of anyone offering to help, that this was just what life after cancer looked like. The bar had been set so low that they’d stopped asking whether things could be better.

That’s why we moved toward structured care pathways with defined outcomes rather than a menu of services. Survivorship isn’t about giving people options, it’s about helping them navigate complexity and actively restoring health wherever we can.

What has had the biggest impact on patients’ quality of life and recovery?

Mental health is often the foundation (and more than 70% of our multidisciplinary appointments are with psycho-oncology teams) but I think that framing can actually obscure what’s happening, because it treats emotional and physical wellbeing as separate things when they’re deeply intertwined.

It’s very hard to feel psychologically well when you’re living with persistent pain, fatigue, or side effects that change how you function every single day. And conversely, unaddressed anxiety and distress will amplify physical symptoms. You can’t successfully treat one in isolation.

The biggest improvements we see come from a genuine biopsychosocial approach, taking seriously the physical, emotional and practical dimensions of someone’s life, and recognising how they influence each other.

I think the shift from ‘helping people cope’ to ‘optimising recovery’ is more than a semantic one. It changes what you look for, what you offer, and what you believe is possible. We should be asking: can we prevent this? Can we treat it? Can we restore function? Not just: how do we help people live with it?

One area that I think is profoundly undervalued is vocational rehabilitation — supporting people to stay in work during treatment, or return to work afterwards. The financial impact of losing your income is obvious, but the psychological consequences are just as significant and much less talked about.

Work gives people structure, identity, a sense of purpose. When cancer strips that away, it strips away something fundamental about how people see themselves. We’ve seen time and again that helping someone get back to meaningful work, even part-time, even in a modified capacity, has a ripple effect through their whole quality of life that goes far beyond the financial. It deserves to be treated as a clinical outcome, not an administrative one.

People often assume universal health coverage in the UK solves survivorship. Where does that assumption fall short, and what lessons translate to the US?

This is a really common misconception, and I understand why it exists. But universal access to treatment doesn’t automatically mean universal access to recovery.

In practice, most patients in the UK are discharged back to their GP after treatment. GPs are remarkable generalists, but it’s genuinely not realistic to expect any individual clinician to hold deep expertise across every cancer type, treatment regimen and late effect. The complexity is just too vast.

Access is also fragmented. Patients often find themselves trying to navigate between oncology, primary care, and whichever specialist might be relevant, without any coordinating infrastructure. Macmillan and other charities have filled enormous gaps here, which speaks well of those organisations, but it also means we’ve effectively delegated a core healthcare responsibility to the voluntary sector.

I think the deeper issue is structural. Our healthcare systems, in the UK and elsewhere, were designed around acute illness. You get sick, you’re treated, you recover, you’re discharged. Cancer increasingly doesn’t follow that model. People live with and beyond it for years, with evolving needs that don’t fit neatly into a fixed pathway.

The lesson for any healthcare system is the same: coverage of cancer treatment is not coverage of survivorship. They require different infrastructure, different thinking, and frankly a different philosophy about what healthcare is for.

What has surprised you most since starting Perci and what has been harder than you expected?

The thing that genuinely surprised me is how universal the agreement is that this matters. I’ve never met anyone, clinician, payer, health system leader, who didn’t immediately understand why survivorship care is important. No one argues with the need.

What’s been harder is the gap between that shared understanding and how care actually gets funded. Reimbursement structures still largely reward intervention over prevention, and activity over outcomes. There’s very good evidence that survivorship interventions improve quality of life and function, but the datasets that capture downstream savings, e.g. through reduced emergency presentations, avoided long-term complications, better return-to-work, take longer to build. The economic case is coming together, but healthcare payment systems are impatient.

There’s a real irony there. We often end up paying for the consequences of poor survivorship care anyway, just later, in a more expensive form, and usually without connecting the dots back to what wasn’t done years earlier.

I still worry about this. The need is so obvious, the agreement is so broad, and yet the structural levers haven’t caught up. That’s probably the most frustrating part of the work.

What has made this model financially viable, and can survivorship care fit into traditional payment structures long term?

We’ve built viability primarily through partnerships with private health and protection insurers. The reason those partnerships work is that we can demonstrate outcomes that create financial value relatively quickly such as improving return-to-work, reducing claim complexity, helping people recover function faster.

Cancer isn’t a single claims event for insurers. It has long, rippling consequences, for the individual, their employer, and the health system. When you invest in recovery early, those consequences become less severe and less costly. The value becomes visible.

The longer-term question about traditional payment structures is one I think about a lot. I genuinely hope they evolve, because right now, access to quality survivorship care is too dependent on where someone happens to seek care, or who they happen to be insured by. That’s not equitable.

I think the models are coming. We’re starting to see payers and health systems connect the dots between early investment in recovery and downstream cost reduction. But we’re not there yet at scale.

If you could redesign survivorship care from scratch, what would you prioritize first?

The first thing I’d do is stop treating survivorship as something that starts when treatment ends. That framing is one of the most deeply embedded problems in oncology. Survivorship should begin on day one, woven into the cancer treatment pathway from the outset, not bolted on afterwards.

I’d also rebuild care around the reality that cancer is increasingly a long-term condition. People don’t move through recovery in a straight line. They improve, plateau, struggle, recover again. A rigid pathway that assumes otherwise will always fail a significant proportion of people. We need adaptive models, supported by technology and remote monitoring, that can flex according to what someone needs at each point in their journey.

But honestly, the change I’d most want to make is a philosophical one. I’d reorient the entire system away from helping people cope, and towards optimising recovery. The first question should never be ‘how do we help people live with this?’ It should be: can we prevent this? Can we treat it? Can we restore what was lost?

Patients should never feel pressured to quietly accept a diminished quality of life simply because they’re supposed to be grateful for surviving. That expectation is doing real harm, and it’s baked into how we talk about cancer, in clinics, in the media, in the stories we tell.

Survivorship is not the period after cancer. For many people, it becomes the longest phase of the cancer journey. We should be designing systems worthy of that.

A note for Jennifer’s readers

Jennifer’s Dividends Health newsletter frames survivorship as one of the next great challenges in modern medicine — and asks why the knowledge-to-implementation gap remains so stubborn. At Perci, we live inside that gap every day. The science on survivorship interventions is strong. The need is unambiguous. The barrier is structural: reimbursement models, care pathway design, and a persistent cultural assumption that survival is itself the destination. We’d love to be part of the conversation Jennifer is building — connecting clinicians, researchers and health system innovators who believe the standard of care for cancer survivors can and must be higher.

Jen’s Reflections

One of the things I appreciated most about Kelly’s perspective is that she challenged a common assumption: that if we could just fix access to care, survivorship would take care of itself. Yet many of the same challenges we see in the United States exist in the UK, despite universal healthcare coverage.

I was also struck by Kelly’s observation that survivors often know exactly what symptoms they’re experiencing, but don’t necessarily know what can be done about them. Over time, many of these side effects become accepted as the “new normal.” The absence of support gets interpreted and reinforced as evidence that nothing can be done.

But, what resonated with me most was Kelly’s shift from helping people cope toward optimizing recovery. That mindset - preserving function, rebuilding resilience, and restoring capacity - is something I’ve explored previously in the context of aging and longevity. We don’t measure success by whether someone simply survives into older age. We care about whether they remain strong, independent, cognitively engaged, and able to participate in the activities that matter to them.

Cancer survivorship shouldn’t be any different.

The goal isn’t simply to help people live with the consequences of cancer and its treatment. The goal should be to help people recover as much health, function, and quality of life and maintain that for as long as possible. Recovery deserves to be an outcome we measure, support, and expect.

To learn more about Kelly and Perci Health, you can follow her on LinkedIn or visit https://percihealth.com.

Kelly McCabe is the CEO and co-founder of Perci Health, the UK’s largest virtual cancer clinic combining early detection and comprehensive cancer management before, during, and after a diagnosis. Previously a registered oncology dietitian with NHS experience and former COO of the UK’s largest private network of cancer hospitals, Kelly has a deep understanding of the challenges faced by cancer patients and their care teams. She is committed to redefining cancer care by bridging critical healthcare gaps and empowering patients to live well beyond diagnosis.

Last week, one of the biggest stories coming out of ASCO, one of the world’s leading cancer conferences, was a new pancreatic cancer drug that nearly doubled survival in a phase 3 clinical trial (read more here). The presentation reportedly received a standing ovation.

For anyone who follows pancreatic cancer, it is easy to understand why.

Pancreatic cancer remains one of the most difficult cancers to treat. It is often diagnosed late, progresses quickly, and has had far fewer therapeutic breakthroughs than many other solid tumors. For patients with metastatic disease whose cancer has already progressed after receiving previous treatment, the available options have historically been limited, and the expected survival benefit from second-line chemotherapy has often been measured in months.

So, when a randomized trial reports that a new oral targeted therapy extended median overall survival from about 6.7 months to 13.2 months, it is not surprising that oncologists paid attention.

The drug, daraxonrasib, is a RAS inhibitor designed to target a pathway that has long been central to pancreatic cancer biology and notoriously difficult to block with medication. In the phase 3 RASolute 302 trial, patients with previously treated metastatic pancreatic ductal adenocarcinoma were randomized to receive daraxonrasib or chemotherapy. The survival difference was striking. Median overall survival nearly doubled. Progression-free survival also improved. And importantly, the drug appeared to have fewer severe side effects and fewer treatment discontinuations than chemotherapy.

Adverse events were nearly universal in both arms, occurring in 100% of patients receiving daraxonrasib and 97.7% receiving chemotherapy. This is not surprising in a population with previously treated metastatic pancreatic cancer. What matters is the severity and consequences of those events. Grade 3 or higher treatment-related adverse events occurred in 43.6% of patients on daraxonrasib, compared with 57.5% on chemotherapy. Treatment-related serious adverse events occurred in 10.8% versus 18.7%, respectively. And only 1.2% of patients on daraxonrasib discontinued treatment due to side effects, compared with 11.2% on chemotherapy.

That is real progress. Because from my perspective, clinical trial endpoints do not always translate easily into what treatment feels like day to day. This does not make survival less important. Survival is foundational. Without time, nothing else is possible.

But survival alone does not tell us how that time is experienced. Time at home is different from time in the hospital. Time with manageable symptoms is different from time dominated by pain, fatigue, nausea, diarrhea, neuropathy, or cognitive fog. Time that preserves independence and agency is different from time that does neither of those things.

That is why tolerability matters. If two treatments extend survival by a similar amount, but one causes far greater toxicity, hospitalization, or loss of function, they are not equivalent from a patient-centered perspective. And if a new therapy extends life while also reducing treatment burden, that deserves a different kind of attention. This is especially important in advanced cancer, where patients and families are often making decisions under uncertainty, urgency, and emotional strain.

The daraxonrasib results may prove to be a major advance for patients with previously treated metastatic pancreatic cancer. More data, regulatory review, real-world experience, and longer follow-up will matter. This is still an investigational therapy after all, and no single trial answers every question.

But the excitement around this drug offers an opportunity to think carefully about what kind of progress we are celebrating. In metastatic pancreatic cancer, more time is profoundly meaningful. What makes this story especially worth watching is the possibility that the familiar tradeoff may become less fixed.

Not having to choose between survival or quality of life, but rather survival with more of it.

Most of medicine is designed to detect disease.

We wait for symptoms to appear, for scans to change, or for lab values to cross a threshold that signals something is wrong. In cancer survivorship, this often means monitoring for recurrence and managing acute and chronic side effects from treatment.

But many survivors experience changes long before a diagnosis or a clinical event occurs. Fatigue, reduced exercise tolerance, sleep disruption, metabolic dysfunction, loss of muscle mass, and slower recovery from stressors can emerge months or years after treatment ends. Increasingly, researchers are recognizing that some of these changes resemble aspects of accelerated aging, even in relatively young survivors.1,2,3

The challenge is that our healthcare system is still not particularly good at measuring long-term functional health and physiological resilience, or how well the body adapts, recovers, and maintains capacity across interconnected systems like metabolism, cardiovascular fitness, inflammation, sleep, and muscle health.

A growing area of research is now asking a different question: how do we identify early changes before overt disease develops?

I recently spoke with Brooks Leitner, MD, PhD, CEO and co-founder of VO Health, whose work focuses on measuring health through a systems-based lens that integrates physiology, metabolism, molecular profiling, and physical performance. His company, VO Health, is exploring whether molecular and physiological data can eventually make measures of fitness and functional capacity more scalable outside specialized exercise laboratories. His work offers a useful lens for thinking about populations where these changes may occur earlier or more rapidly, including cancer survivors. While many of these approaches are still evolving, they reflect a broader shift in medicine: moving from a reactive model of disease detection toward earlier measurement of functional decline and physiological reserve.

For cancer survivors and others interested in long-term health and aging, that shift may ultimately prove just as important as treating disease itself.

Rethinking How We Define Health: Interview with Dr. Brooks Leitner

1. For readers who may not be familiar with your work, how do you define health and how does that differ from how medicine typically measures health today?

Modern medicine defines health as the absence of disease. The field was largely built on frameworks for identifying and eradicating infectious diseases, and more recently for targeting genetically-driven cancer subtypes with selective treatments. The core logic is: detect disease, treat disease, declare the patient healthy. Even though the World Health Organization has long championed a broader definition, the toolkit to measure health at scale beyond that binary simply does not yet exist.

My work aims to build that toolkit, one grounded in defining health as functional capacity rather than disease detection. Health is a spectrum, not a switch.

2. What are the earliest indicators that a physiological system is beginning to decline before clinical symptoms appear?

Measures like exercise capacity, body composition (muscle mass, visceral fat), and insulin sensitivity reflect the functional underpinnings of health long before disease appears on a standard lab panel. Take insulin sensitivity as an example: when measured by a hyperinsulinemic euglycemic clamp, it predicts diabetes risk up to 20 years in advance, well before fasting glucose, fasting insulin, or hemoglobin A1c become abnormal (Warram et al., 1990, Annals of Internal Medicine). These aren’t exotic research tools; they’re signals the body is already broadcasting. We just haven’t built the infrastructure to listen at scale.

3. What are we measuring today that looks reassuring on paper, but doesn’t necessarily mean someone is actually doing well?

LDL cholesterol is the classic example. For decades it has been the default marker for cardiovascular risk and the primary trigger for statin prescriptions. But cardiology guidelines only recently began advocating for apolipoprotein B (ApoB) as a more accurate measure, and emerging research suggests that millions of people currently on statins may be unlikely to benefit from them.

Rather than debating which cholesterol marker is superior, though, I think the more important shift is this: we spend too much energy optimizing downstream markers once dysfunction has already taken hold, and not enough targeting the upstream physiology that drives them. When you actually improve exercise capacity or body composition, as we’re now seeing with GLP-1 agonists, the downstream biomarkers tend to improve across the board. That’s the direction the field needs to move.

4. When you think about health as a system, which physiological domains are most important to monitor and how do they interact?

The most informative assessments are those that stress the system and capture how multiple organ systems respond in concert. Maximal exercise testing is a prime example: in a single test, it integrates the heart, lungs, vasculature, skeletal muscle, and mitochondria, making it one of the most powerful windows we have into whole-organism physiology. The hyperinsulinemic euglycemic clamp is another. It simultaneously probes the metabolic capacity of the liver, muscle, and adipose tissue, revealing how effectively the body disposes of glucose, which is a function that touches nearly everything downstream.

Inflammation is the third pillar. Every organ has its own resident immune compartment, and systemic inflammation links them all, shaping how the body adapts to both acute stressors like infection and chronic ones like obesity.

The through line here is stress and integration. Assessments that challenge the system and capture cross-organ responses will always outperform those that isolate a single marker or organ. Looking at one thing in isolation can falsely reassure, or miss early functional decline entirely.

5. Which aspects of health are most responsive to intervention once early changes are detected?

Insulin sensitivity is among the most immediate. It can improve within minutes of a single bout of exercise, making it one of the most sensitive and actionable markers of metabolic function, with downstream relevance to cardiovascular disease, cancer risk, and neurodegeneration, not just diabetes.

Exercise capacity takes longer to move, often weeks to months, but the payoff is broader. Few interventions we know of produce benefits as wide-ranging or as durable across healthspan. If you could only improve one thing about someone’s physiology and hold it there, maximal aerobic capacity would be a strong argument.

6. If a patient had access to this kind of data about their physiology, how would it change what they do day-to-day? What becomes actionable?

Real-time feedback changes behavior in ways that abstract risk scores never have. If someone could monitor insulin sensitivity continuously, say through a next-generation wearable, they would feel the physiological return on a walk after dinner or a morning workout almost immediately. That kind of signal closes the loop between action and outcome in a way that a lab result once a year simply cannot.

Pair that with more durable benchmarks like exercise capacity, and you get both dimensions of motivation: the immediate feedback that reinforces daily habits, and the longer-arc data that shows how those habits are building functional reserve over years and decades. Together, they give people something concrete to work toward, not just a number to worry about.

7. Where do you think the first real use case will emerge? What population or setting makes this most immediately viable?

The first adopters will likely be the same people who buy life insurance in their thirties: younger, healthier individuals who aren’t sick yet but want evidence that they’re protected against future risk. Functional capacity metrics serve as a kind of health account, a running measure of physiological reserve that tells you whether you’re building toward long-term resilience or quietly losing ground.

The second clear population is those with elevated risk from family or personal history, whether that’s heart disease, cancer, or metabolic disease. For them, the value proposition is even more direct. Functional capacity is one of the few dimensions of health they can actually move with their own behavior, and having objective data about where they stand turns an abstract worry into something they can act on.

8. What is the economic value of measuring and intervening earlier? What would need to be true for this to be adopted at scale?

Americans are living longer, but they are spending more than 12 of those years in poor health on average. Annual healthcare costs for a typical 70-year-old in the US exceed $20,000, much of it absorbed by Medicare. If biannual functional screening and a longitudinal lifestyle program could be delivered for under $1,000 per year, even a modest reduction in emergency visits and hospitalizations driven by chronic disease or falls could plausibly save $10,000 or more per person. The math is not complicated.

Getting there requires three things: screening tools that are reproducible, scalable, and actually capture functional capacity; low-cost diagnostics; and community-based interventions that can be individualized. The good news is that the technology is catching up fast. Full proteome analysis, covering more than 1,000 circulating proteins, now costs under $200. Large language models can deliver personalized guidance at a scale no clinical workforce ever could. The missing ingredient is the data: the longitudinal datasets needed to identify which biomarkers reliably predict functional decline and respond to intervention. Build that evidence base, and the rest becomes deployable.

9. If you were to redesign how we monitor and manage health over time, what would that system look like in practice, and what would need to change for it to become part of routine care?

Health is not made at the hospital. The hospital is where we prevent death and manage acute crises. Health is made where people live, work, and play, and the system needs to follow them there.

In practice, that means diagnostics conducted by mobile phlebotomists or through minimally invasive home collection. It means wearables and ambient sensors that feed continuous data into personalized guidance without requiring a clinic visit. It means community and workplace-based programs that meet people inside their existing routines rather than asking them to opt into healthcare.

The deeper shift is cultural as much as structural. The best healthcare is largely invisible to the person receiving it. Prevention should be the default, woven into daily life, so that maintaining health requires no more conscious effort than it already takes to lose it. The goal is a system where dysfunction is the exception that triggers an alert, not the baseline we wait to treat.

Jen’s Reflections

Thanks, Brooks for this thought-provoking conversation. What struck me most was not the promise of any single biomarker, wearable, or blood test, but the broader shift in perspective it represents.

For decades, medicine has largely been organized around detecting and treating disease once it becomes clinically visible. That model has saved countless lives, including many of those living after cancer. But life after cancer treatment often reveals the limitations of a system built primarily around acute care and disease detection. Many survivors are left navigating persistent fatigue, reduced physical capacity, metabolic dysfunction, sleep disruption, cognitive changes, or a general sense that their body no longer functions the way it once did, even when scans and routine lab work appear “normal.”

As someone who has studied how cancer survivors age, I find this emerging focus on functional health especially compelling. Increasingly, research suggests that physiological decline may begin long before overt disease develops, and that changes in exercise capacity, muscle health, metabolism, inflammation, and recovery may offer earlier insight into long-term health trajectories.

At the same time, it is important to approach this space thoughtfully. Not every new biomarker or technology will prove clinically meaningful, scalable, or actionable. Many of these tools are still evolving and require rigorous longitudinal validation before they become part of routine care. Medicine has seen no shortage of health trends that promised more than the evidence could support. Still, I believe the larger question raised in this conversation is an important one: what if we spent more time measuring and supporting physiological resilience before people reached a point of crisis, disability, or disease?

For cancer survivors, that question matters deeply. Survivorship is not simply about living longer. As one person recently told me, survivors do not want to choose between survival and quality of life. They want both. They want to maintain strength, independence, cognitive function, energy, and the ability to engage in the relationships, work, and activities that bring meaning and purpose throughout their lives.

And perhaps that is where this field becomes most interesting, not as a pursuit of optimization or longevity for its own sake, but as a way of thinking more carefully about how we preserve health across the lifespan.

If you’d like to learn more about Brooks’ work, you can follow VO Health.

Brooks Leitner, MD, PhD, is the CEO and Co-Founder of VO Health. An accomplished physician–scientist, Brooks trained at Yale University and the National Institutes of Health, where his work spanned human physiology, metabolism, molecular profiling, and translational science.

With dozens of peer-reviewed publications and thousands of citations, his research integrates multi-omics approaches with real-world performance and health data, shaping how cutting-edge discovery can be translated into practical, scalable solutions. Brooks also serves on the Physician Advisory Council of the Medical Fitness Association and brings cross-disciplinary experience across biomedical research, venture capital, and company building.

Brooks has also worked in venture capital as an investor, as well as a personal trainer at Washington, DC’s top performance gym, grounding his scientific work in a deep connection to real-world human health and performance.

Introduction

Many people assume cancer care is better in countries with universal healthcare systems and strong public health infrastructure, like Finland. Surely, if you can get through treatment in a system like that, you should be in good hands.

But when I wrote about survivorship infrastructure a few weeks back, one of the most consistent responses I received across multiple countries, healthcare systems, and cancer types was this:

the moment treatment ends is the moment the system lets go.

Sanna Tiensuu-Piirainen reached out to me after reading that piece. She is a breast cancer survivor living in Finland, but also an organizational strategist. She has spent over two decades in consulting, project management, and HR, bringing that organizational lens to everything, including her own experience as a patient. And she knows from the inside what it looks like when systems work, and when they don’t.

And yet, when it came to survivorship, she found herself in a system that didn’t.

Her experience highlights something uncomfortable but important: even in high-functioning healthcare systems, survivorship, especially psychosocial care, remains fragmented, underprioritized, and often invisible.

This conversation sits at the intersection of personal experience and systems design. It’s about what breaks when treatment ends and what it would take to build something better in its place.

This interview has been edited and condensed for clarity.

Interview with Sanna Tiensuu-Piirainen

The Structure of Treatment

You’ve experienced cancer care firsthand as a breast cancer survivor in Finland. Can you walk me through what that journey felt like from diagnosis through treatment, and especially what happened when treatment ended?

I was living the life of most women in their forties. Hectic, full, oriented toward everyone else. I’d been unusually tired for a while, but I blamed it on stress. Then for a couple of months I had a strange physical sensation, the kind you get when you’re breastfeeding, but I was not pregnant. My husband, more pragmatic than me in that moment, suggested I get an ultrasound for peace of mind.

The ultrasound found something. A biopsy followed. And then the diagnosis came over the phone while I was on holiday in Crete. I couldn’t believe it. I cried that first night with a very specific fear: that I might not get to see my girls grow up. Then I started googling. The need for information was insatiable, and in hindsight, I think that was my way of taking back some sense of control.

Treatment began quickly. A lumpectomy, six rounds of chemotherapy, twenty rounds of radiation. In many ways life continued. I was still a mother, still making food, still giving rides – just wearing a beanie and some days, barely functioning. My radiation clinic was 200 kilometers away (400km roundtrip) and I made that journey daily by taxi so that everything else could stay as normal as possible. The system held me well during this phase. My cancer was treated and I knew what was coming and when.

The last appointment with my oncologist came after radiation. She looked at me and said: “Sanna, you are now healthy and can start to plan your life forward.”

I believed her.

What followed was something nobody had prepared me for. I started tamoxifen. Chemotherapy-induced menopause hit hard. My calendar, which had been full of appointments and things to manage, was suddenly empty. And I did not feel like myself. Far from it. Because everything had moved so fast during treatment, I hadn’t had space to actually process what had happened to me. Now I had time, but I didn’t look like myself. I felt like an old woman with my aches and pains. And I felt profoundly alone.

What I didn’t understand then, and what took me a long time to name is that cancer is a traumatic crisis. It has psychological stages. And the system that had treated my cancer so competently had never once mentioned this to me.

From the outside, many people assume countries like Finland have better, more comprehensive healthcare systems. In your experience, where does that hold true and where does it break down for cancer survivors?

From the outside, Finland looks like the answer. Universal coverage, no financial catastrophe from a diagnosis, and a well-functioning public health infrastructure.

But the picture is more complicated. In recent years, particularly in cancer care, Finland has fallen behind. Survival rates for several cancers are lower, and access to newer treatments like immunotherapy are more limited, in part due to cost. Finland is also the only Nordic country without standardized national cancer care pathways. A national cancer strategy was finally published last year. It’s a meaningful document, but a strategy published is not a strategy implemented.

For me, survivorship meant years of hormone therapy and side effects I was not prepared for. It meant a body I didn’t recognize. And once treatment ended, it meant almost no psychosocial support.

What I did find (through late-night googling) was a private Facebook group for breast cancer patients. It became one of the most important sources of support during my treatment. Not because I was an active voice there, but because the feeling of the community was real. Others facing the same disease, coping, sharing. That sense of community mattered enormously.

But it shouldn’t work like that. A private Facebook group should not be the primary psychosocial infrastructure for cancer survivors. Emotional and psychological support should be integrated into care from the beginning and not something patients are left to find for themselves. Because treating the tumor is only part of the work. The fear of recurrence, the long-term effects of treatment, the psychological impact, these don’t end when treatment does.

A system that treats the disease and considers the job done has only done half the work.

You mentioned to me that when “active treatment” ends, patients often feel left alone to cope. Why does that transition fail so consistently, even in a system that works well in other phases of care?

I wish I had a clear answer to this. If I did, perhaps the system would already be different. What I do know is this: the system is designed to treat cancer, and it does that with focus and competence. There are clear pathways, clear responsibilities, and clear endpoints. But we are not just patients with cancer. We are people with relationships, identities, and lives that exist outside the treatment room. Cancer and its treatments are profoundly invasive, not just physically, but across every dimension of a person’s life. And yet once the disease is treated, the system considers its work largely done. I don’t think this is an oversight. I think it’s a blind spot built into the system itself. Oncology has metrics: tumor response, survival rates, treatment completion. Psychosocial wellbeing after treatment is harder to measure and nobody owns it, so it falls through.

You also described psychosocial support as “really poor.” What does that look like in practice for survivors? What’s missing that people might not realize?

In practice, psychosocial support for cancer survivors in Finland is largely invisible and what little exists depends heavily on where you live. Follow-up care is minimal. Over a five-year period, patients may have only a handful of clinical visits. Many are transferred to primary care immediately after treatment ends.

The system is designed to detect recurrence. It is not designed to support the person living with the aftermath of treatment. What makes this difficult is that survivors often don’t know what “wrong” feels like anymore. Their bodies have changed. Their sense of normal has changed. And the fear of recurrence, which is persistent and often debilitating, is never directly addressed.

There are no tools. No framework. Often, no acknowledgment. Much of the support that does exist comes from patient associations and peer groups. And yet even these are under pressure, as funding is reduced despite being recognized as essential. So, survivors are left navigating side effects, fatigue, anxiety, and identity changes largely on their own.

The system defines survivorship as something that begins at diagnosis and continues throughout life. But in practice, it does not support it that way.

Recovery is Not a Return to Normal

You’ve spoken about how cancer changed your understanding of transitions and identity. What does recovery actually feel like when treatment ends and what do people misunderstand about this phase?

The word “recovery” is part of the problem. It implies a return to the life you had before. But that’s not what happens. Cancer changes you in ways that make “going back” the wrong destination entirely. What follows is closer to reconstruction.

You are building a life under new conditions with a body, a sense of self, and a set of priorities that have been fundamentally altered. For many survivors, this is also their closest encounter with mortality. It raises questions that don’t resolve when treatment ends:

Who am I now?

What actually matters?

What do I do with the time I have?

These are not small questions. And they are rarely acknowledged within the system.

There is often an unspoken expectation that once treatment ends, life returns to normal. You survived. You should be grateful. And that gratitude, however real, can become a kind of constraint. It silences the side effects you are still living with, the fear that hasn’t left, the identity that no longer quite fits. You cannot easily complain when the social script tells you that you should simply be thankful to be alive.

The emotional reality is rarely given the space it deserves, and so it goes unspoken, unaddressed, and unresolved. Needing support in this phase is not a failure, it is a normal response to a traumatic experience. But the system does not treat it that way.

My own aha-moment came in my third year after cancer, during a retreat in France, while I was studying health coaching. I realized suddenly and clearly that this approach, this orientation toward the future, toward possibility, toward what is still within a person’s reach, was exactly what cancer patients needed and were not getting. That path eventually led to the book. My co-author Tiina Huhtanen was encountering the same questions in her work with patients. Between my coaching and brief therapy studies and our shared understanding of what survivors needed, we began to think: what if we could create something like a healing path? A guided journey through the aftermath of cancer, with writing prompts and structured reflections and different kinds of interventions, that could ease the process of building a new life. That became Hyvinvointikirja rintasyövästä toipuvalle, a wellness book for breast cancer survivors, published in 2025.

It is, in many ways, the book I wish I had been given at the end of my own treatment.

Survivorship as a Systems Design Problem

You’ve spent your career building organizations and systems that are designed to function under pressure. When you look at survivorship care through that lens, what feels most structurally broken?

When I look at survivorship care through the lens of someone who has spent decades managing projects and developing processes, the diagnosis is uncomfortable but clear: this is a project without an owner.

In any well-functioning system, success depends on a few things:

• Clear ownership

• Meaningful outcomes

• Communication across phases

• And the ability to adapt when something isn’t working

Cancer treatment reflects this. It is structured, coordinated, and responsive.

But survivorship does not. There is no clear owner. No defined outcome beyond survival, no coordinated transition from treatment to life after cancer, no change management. In a software implementation, for example, the most technically perfect system will fail if the end-users are never properly onboarded. This means the end-users are never trained, prepared, or supported through the transition to a new way of working. In any other system, you would never launch something without preparing the person expected to use it.

But that is exactly what happens here. Treatment ends. The system steps back. And the patient—the end user of survivorship—is left to figure it out alone.

If you mapped the cancer care journey as a system (from diagnosis to long-term survivorship) where exactly does it break down? And why hasn’t that gap been solved?

If I map this on a whiteboard, two breaking points stand out clearly.

The first is at diagnosis. In Finland, a cancer diagnosis is often delivered over the phone. After that, there may be weeks of waiting before meeting a specialist. Behind the scenes, the system is already moving. But the patient cannot see that. What she experiences is silence. And in that silence, the questions are immediate and overwhelming: What is happening to me? Will I die? Will I see my children grow up? The system is almost entirely absent at the moment when psychological need is highest.

The second breaking point is at the end of treatment. The structure disappears, clinical visits stop, and the patient steps into survivorship carrying the long-term effects of treatment, often feeling alone. And yet, this is precisely the moment that the mind finally has space to process what has happened. The crisis arrives after the crisis is supposed to be over.

If you had the opportunity to redesign survivorship care from the ground up, what would you build differently and what would you prioritize first?

If I could redesign survivorship care, I would start with one thing: integrating psychosocial support from the beginning.

Not as an optional referral. Not as a crisis response. But as a standard part of care that follows the patient across the entire journey. This doesn’t require years of therapy. There are structured, evidence-based approaches that can support people in just a few sessions that can help them process what has happened, rebuild their sense of self, and move forward.

The tools already exist. The question is whether we choose to use them.

I also believe digital tools have a role to play. They can help scale access to information, symptom tracking, and support. But they cannot replace human connection. The most important moments in survivorship are still the ones where a person feels seen and understood. And that requires another person.

From Jen

Sanna, thank you so much for this thoughtful and raw interview. There is so much to unpack here, but one moment in particular, reframed how I think about survivorship care:

“This is a project without an owner.”

It’s a simple statement, but it explains so much more than it should. Sanna is describing a system that was designed to treat cancer, not the aftermath. Well-run projects have clear ownership, defined timelines, and measurable outcomes. But the moment treatment ends, that structure more or less disappears with limited follow-up, psychosocial support, clear transitions, or defined responsibilities. And these issues occur even in systems that are otherwise considered high-functioning, which suggests something important: this is a resource and a design problem.

Perhaps the most uncomfortable truth in this conversation was that the patient becomes the one holding everything together, managing side effects, fear of recurrence, acute and long-term health risks, return to work, and emotional recovery. From Sanna, I heard that one of the most overlooked aspects of survivorship is identity. Recovery is often framed as a return to normal life, but for many people, that’s not possible. What follows is reconstruction and with that a rethinking of identity, priorities, relationships, and how to live in a body that feels fundamentally different. Access to supportive services that help patients process and cope with the uncertainties and realities of living with cancer from the time of diagnosis throughout their cancer journey (and especially afterward) is a necessary component of quality cancer care.

Sanna’s story challenges a common assumption—that better health systems solve this problem. Turns out they don’t because of the abrupt shift in care after treatment ends. So until we shift from focusing on survival to living well after treatment, we will continue to see the same pattern across countries, systems, and levels of resources. And until we define that more clearly, we will continue to build systems that treat tumors effectively while leaving human recovery largely unsupported.

If you’d like to learn more about Sanna, you can follow her on LinkedIn and Substack.

Sanna Tiensuu-Piirainen is a Finnish breast cancer survivor, patient advocate, and senior professional with over two decades of experience in consulting, project management, and HR leadership. She is Vice Chair of Rintasyöpäyhdistys Europa Donna Finland and a patient representative in international oncology research. She is the co-author of Hyvinvointikirja rintasyövästä toipuvalle (Tuuma, 2025), a wellness book for breast cancer survivors. She is currently seeking her next role at the intersection of health technology, people leadership, and meaningful impact.

Should cancer survivorship care be a specialty?

It’s a question I’ve been thinking about recently and the more I sit with it, the more I think it’s the wrong one.

Because survivorship doesn’t fail for lack of expertise. It fails because it doesn’t fit cleanly into the way we’ve organized care in the first place.

A colleague shared a paper with me recently that described the difference between generalist and specialist care in simple terms.

Specialists are trained to identify and classify disease, apply deep expertise, and execute a management plan. Generalists, particularly in primary care, operate differently. They recognize a broad range of problems, prioritize what matters most, and personalize care within the context of a patient’s life.

Paradoxicallly, systems built on strong primary care tend to produce better population health, despite providing less evidence-based care for individual diseases.

In other words, the value of generalist care doesn’t come from doing any one thing better. It comes from how it brings individual things together and prioritizes them. In other words, the whole is greater than the sum of its parts.

This idea of emergence is not unique to medicine.

In complex systems, outcomes are not determined by individual components, but by how those components interact.

A flock of birds moves as one, not because any single bird is directing it, but because of simple rules guiding interaction.

Biological aging works in a similar way. It is not one process, but the accumulation and interaction of many processes over time, like cellular damage, stress, environment, behavior, shaping a person’s trajectory.

Survivorship starts to look more like that than like a single disease.

Cancer care, by contrast, is deeply specialized.

Patients receive specific treatments—chemotherapy, radiation, surgery, targeted therapies—with well-characterized risks and long-term effects. That knowledge matters. It’s precise, and it’s necessary.

But survivorship doesn’t unfold one risk at a time. It unfolds across organ systems, over decades and is shaped by treatment exposures, aging, and the realities of a person’s life.

We’ve organized medicine around diseases.
Survivorship forces us to think in terms of trajectories.

So where does survivorship care belong?

In oncology?
In primary care?
In a new specialty altogether?

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Over the past decade, the field has tried to answer this.

Multiple models have been proposed to integrate primary care into survivorship. From specialized “oncogeneralists” embedded in cancer centers, to consultative models, to designated survivorship-focused primary care physicians, to community-based care with minimal survivorship training.

On paper, this looks like progress. In practice, it actually reveals something else.

We don’t have one model of survivorship care. We have several partial ones.

Each of these models solves a piece of the problem.

Specialist-led approaches bring deep knowledge of treatment effects and risk.
Primary care–based approaches bring continuity, prioritization, and whole-person context. But neither approach scales cleanly.

Even proponents of primary care–based models acknowledge a fundamental limitation: it is not feasible for primary care physicians to develop expertise across the full spectrum of cancer survivorship.

And a purely specialist model struggles for a different reason. Survivorship is not just about managing late effects. It is about managing health over time: cardiovascular risk, metabolic disease, mental health, relationships, financial strain, identity. These are not problems that can be solved through specialization alone.

So the question starts to shift. It’s not whether survivorship care should be generalist or specialist. It’s that these approaches were never designed to work together in the way survivorship requires. The result is a system where survivorship care is not intentionally designed, but instead patchy and inequitably distributed across oncology clinics and primary care offices (if available at all).

This is where the consequences become visible.

A survivor of childhood cancer, now in their 30s, doesn’t mention their prior treatment history because it feels irrelevant or too difficult to revisit.

A primary care physician doesn’t have access to treatment exposures buried in an old system.

A specialist focuses on a single organ system, without visibility into the broader trajectory.

Each decision makes sense in isolation.

But together, they create gaps.

So should survivorship care be a specialty?

I’m still not convinced that’s the right question.

Because the challenge isn’t just deciding who should deliver survivorship care.

It’s that survivorship doesn’t behave like a single disease. It unfolds across systems, over decades. And when we try to manage that complexity using models designed for something much narrower, we end up with partial solutions, like new subspecialties, new roles, and different care models. All helpful. None sufficient on their own.

So maybe the answer isn’t black and white, or even in the gray area. Maybe it’s that survivorship is asking something different of the system entirely and we haven’t fully conceptualized what that is yet.

What do you think?

Where should survivorship care live and what are we still missing?

Citations

Etz et al. (2021), Simple Rules That Guide Generalist and Specialist Care, Fam Med.

A few weeks ago, I finally read an article that has been repeatedly popping into my LinkedIn feed.

It was a short piece in Becker’s Oncology asking a group of cancer leaders a simple question: as more patients survive cancer, how should health systems rethink oncology care?

Their answers were thoughtful and familiar: survivorship care should begin earlier. Care should be coordinated across oncology and primary care. Health systems need better infrastructure to manage the long-term physical, emotional, and financial consequences of cancer.

But if you work anywhere near cancer survivorship research, the issues described in that article are not new. They have been documented and debated for literally decades.

So why does survivorship care still feel so unfinished?

The Success Story We Rarely Talk About

Modern cancer medicine has achieved something remarkable.

Today, nearly 70% of people diagnosed with cancer survive at least five years, and there are now more than 18 million cancer survivors living in the United States.

This is one of the great medical successes of the last half century.

But it has also simultaneously reshaped what cancer care needs to look like. For most survivors, cancer is no longer a short chapter of life. It is an experience that can shape their health for decades.

Many survivors live with long-term consequences of treatment, including cardiovascular disease, endocrine disorders, cognitive changes, infertility, chronic fatigue, and increased risk of secondary cancers. Large cohort studies have shown that cancer survivors experience higher rates of chronic health conditions and functional decline compared with individuals without a cancer history.

In other words, cancer survivorship is increasingly less about being finished with cancer and more about learning how to live well after it.

A System Built for Treatment, Not Survivorship

The challenge is that our healthcare system was largely designed around acute cancer treatment.

Survivorship care, by contrast, requires something much more complex: long-term health management.

Monitoring treatment-related risks.
Coordinating care across specialties.
Addressing physical, cognitive, and psychosocial consequences of therapy.
Helping survivors navigate the transition back to everyday life.

In theory, survivorship care plans and risk-based monitoring strategies exist to support this work, but in practice, implementation remains inconsistent.

Responsibility for long-term care may shift between oncology clinics, survivorship programs, primary care physicians, and subspecialists. Many survivors fall through the crack because they are left navigating these teams by themselves and they may not know who to reach out to for specific care. Some large academic cancer hospitals have long-term survivorship programs, but not all and they are inequitably distributed across the country. If a cancer survivor happens to be fortunate enough for a cancer hospital to have a long-term care follow-up program, the programs across institutions may look nothing alike, despite the existence for National Standard for Survivorship Care.

Even basic details about a patient’s cancer treatment history, such as chemotherapy exposures or radiation dose, can be difficult to retrieve from electronic medical records, let alone years later.

As a result, the long-term health of cancer survivors is often managed in a system that was never truly designed for it.

The Knowledge–Implementation Gap

One of the striking things about survivorship care is that the science is not the main problem.

Researchers have spent decades documenting the long-term effects of cancer therapy. Entire subspecialties, like cardio-oncology, onco-fertility, geriatric oncology, and psycho-oncology, have emerged in response.

Guidelines exist for monitoring many treatment-related risks. Survivorship care plans have been recommended by major organizations for nearly two decades. And yet, the field still struggles with implementation.

The reason?

It is structural problem.

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Survivorship care requires coordination across clinical disciplines, health systems, and time horizons that extend far beyond the period of active cancer treatment.

That is difficult work in a healthcare system that often operates in silos.

Survivorship Is the Longest Phase of Cancer Care

Several leaders quoted in the Becker’s article made an important point: cancer care can no longer be organized around treatment alone.

Survivorship is now the longest—and often most complex—phase of the cancer journey.

Health systems will need to think differently about how they support survivors over the long term. That likely means new models of care that integrate oncology, primary care, behavioral health, rehabilitation, and other specialties. It also means building infrastructure to help clinicians conduct long-term health management.

A Question Worth Exploring

Over the past several months, I’ve found myself returning to a simple question:

If we already understand many of the risks cancer survivors face, why is it still so difficult to manage survivorship care at scale?

This question sits at the intersection of clinical medicine, public health, and health systems design.

In the coming months, I’ll be exploring it here on Dividends Health—through conversations with clinicians, researchers, and innovators working across the survivorship landscape.

I’m particularly interested in understanding:

• How survivorship care actually works in practice.

• Where information breaks down between oncology and primary care.

• What infrastructure might help close those gaps.

Because if millions of people are now living decades beyond a cancer diagnosis, survivorship care may represent one of the next great challenges—and opportunities—in modern medicine.

If you work in cancer survivorship, primary care, oncology, or digital health, I’d love to hear your perspective.

Where do you see the biggest gaps in survivorship care today?

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More adults under 50 are being diagnosed with cancer.

Researchers now refer to this pattern as early-onset cancer, and it has become one of the more puzzling trends in cancer epidemiology.

Occasionally the story makes national headlines. Recently, Dawson’s Creek actor James Van Der Beek died from colorectal cancer at age 48, only three years after his diagnosis.

Outside the headlines, I’ve noticed these kinds of stories appearing more often in everyday conversation. When people learn that I study cancer, they often tell me about a friend, coworker, or family member who was diagnosed with cancer. Lately though, the person they’re talking about seems far younger than expected.

For decades, cancer has been understood as a disease strongly linked to aging. The older we get, the greater the risk.

But in recent years, something unexpected has started to appear in the data.

What We Know

Recent data from large national registries show that early-onset cancers have increased over the past decade, even as many cancers in older adults have stabilized or declined.^1,2

Colorectal cancer has drawn the most media attention because of its sharp increase¹ and rising death rate among younger people,³ but increases have also been observed in breast, pancreatic, kidney, uterine, and other cancers as well.²

These patterns have been observed in the United States and in parts of Europe, Oceania, and Asia, but the trend is not uniform across every cancer type or every region.

Still, the signal is strong enough that many clinicians and researchers are asking a simple question, “why is this happening?”

To be super clear: there is no single confirmed explanation about what is causing early-onset cancer.

Family history and genetics may seem like obvious culprits, but interestingly, most early-onset cancers do not appear to be driven by inherited genetic syndromes. Instead, they tend to arise sporadically — meaning they develop without a clear family history — like most cancers diagnosed later in life.

Better screening and earlier detection do not seem to be the whole story either. While expanded screening and earlier detection likely contribute to some of the increases in new early-onset cases, particularly for cancers like colorectal and breast cancer, they do not fully account for the rising incidence across multiple cancer types, including cancers without routine screening programs.²

So, then what?

A Generational Clue

One of the most compelling observations to explain the rise in early-onset cancer is what epidemiologists call a birth-cohort effect.

When researchers compare people of the same age across different generations, more recent birth cohorts often show higher cancer risk at that same age than those born earlier.⁴

In practical terms:
A 45-year-old today may face a higher risk of cancer than a 45-year-old in 1995 did.

This pattern suggests that the increase is unlikely to be explained by genetics or earlier detection alone.

So, the next logical question is: what has changed in recent generations that may be contributing to the increase in early-onset cancers?

The leading hypotheses focus on lifestyle, behavioral, and environmental changes that have occurred among more recent generations:

• Worsening metabolic health, such as rising obesity rates

• Changes in lifestyle, like low physical activity and eating a highly processed diet

• Environmental changes, like microplastics, pollution and other chemical exposures

• Psychosocial states and stressors, like depression, financial insecurity, and social isolation

• More medication use (e.g., antibiotics)

• Sleep and circadian rhythm disruptions – this one may seem out of the blue, but the International Agency for Research on Cancer (IARC) considers circadian disruption a Group 2A “probable carcinogen.” Think someone who works the graveyard shift or who travels crossing multiple time zones repeatedly, like commercial flight attendants and pilots. Read more here.

It is unlikely that any one single exposure explains the increases in early-onset cancer. More likely, multiple factors are interacting and accumulating over time. The birth-cohort signal suggests that something about the environments in which newer generations are growing up has changed, which means the search for one simple cause is probably overly simplistic.

And to be clear, we do not know how much each of these factors contributes to early-onset cancer cases, if at all. We also do not know whether these current trends will persist, plateau, or reverse in the future.

But Cancer is Not the Only Signal…

When I step back from oncology and scan the broader landscape, I see something else.

Several diseases traditionally associated with aging – including heart disease, stroke, diabetes, and dementia – are also appearing more frequently in younger adults in some regions of the world.

In the Unites States, deaths from heart disease and diabetes have risen among adults under 65. Between 1999 and 2018, heart disease deaths increased by about 9% and diabetes deaths rose by nearly 50%.⁵ Stroke incidence has also increased in younger adults in the U.S. and in several regions of the world.⁶

A 2025 age-period-cohort analysis of global data found that early-onset dementia (i.e., dementia that occurs before age 65) increased between 1990 and 2021. This increase was seen particularly among middle- and high-income countries, similar to early-onset cancer.

The absolute number of early-onset dementia cases doubled, mostly due to population growth. But after taking into account population growth, increases were modest (age-standardized prevalence rose 2.9% and incidence 5.6%) and birth-cohort effects were observed.⁷ It is not entirely clear whether these increases reflect better diagnosis or changes in reporting. But if that were the main explanation, we would expect to see similar increases across all age groups — not just among younger people.

To be clear, these trends I am describing are not identical and they are not universally upward across all regions of the globe. These trends also do not necessarily mean there is a single unifying mechanism.

But they share some interesting features.

Where the Convergence Lies

Across many of these aging-related diseases, several risk factors overlap:

• Obesity

• Elevated fasting glucose

• Insulin resistance

• Hypertension

• Smoking (though declining overall)

In the dementia analysis, high BMI and high fasting plasma glucose were among the leading attributable risk factors.

These same metabolic exposures are implicated in colorectal, pancreatic, endometrial, and postmenopausal breast cancers. Obesity alone is considered a cause of 13 different types of cancer.⁸

Childhood and adolescent obesity rates have risen dramatically over the past four decades. Type 2 diabetes, which was once rare in adolescents, is now increasingly diagnosed in younger age groups. Same with hypertension.

That convergence does not prove causality. But when independent disease domains show parallel cohort effects and overlapping risk factor shifts, it is probably a good idea to pay attention.

A Working Framework - Accelerated Biological Aging

Last year, my colleagues at the National Cancer Institute and I wrote a viewpoint about accelerated biological aging as one possible explanation for early-onset cancer.⁹

We often think of aging as simply the number of birthdays we’ve had.

But scientists also talk about biological aging — the gradual wear-and-tear on the body’s systems over time. This includes changes in metabolism, immune function, inflammation, DNA repair, and how well our cells respond to stress.

These processes don’t suddenly switch on at age 65. They are influenced by the conditions we live in — what we eat, how much we move, how we sleep, what we’re exposed to over the course of our lives.

Many of the risk factors linked to early-onset cancer are also linked to other chronic age-related conditions. According to the geroscience hypothesis, many chronic diseases, including cancer, heart disease, dementia, and diabetes, may be connected by the same underlying biological drivers of aging processes. In other words, these diseases may have more in common than we once thought.

And so, if those factors appear earlier and accumulate faster across generations, it is plausible that diseases traditionally seen in later decades could emerge sooner.

In that view, early-onset cancer is not an isolated mystery, but rather a broader shift in how risk accumulates over the life course.

To be clear, this hypothesis requires further research. We do not yet have evidence that biological aging itself is accelerating across more recent generations.

But the parallel movement of multiple age-associated diseases earlier in life makes it a scientifically reasonable lens through which to investigate the trend.

Why This Matters

If early-onset cancers and other conditions truly reflect shifts in how biological risk accumulates over the life course, they may provide an unexpected window into these shared aging processes. Rather than treating each disease in isolation, the goal would be to understand whether targeting those shared mechanisms could prevent multiple diseases at once. This is what excites me most about longevity science.

Importantly, I note that even if my hypothesis is correct, this does not really change the core prevention advice:

• Maintain a healthy weight

• Stay physically active

• Prioritize sleep

• Avoid smoking

• Manage blood pressure and blood sugar

• Stay on top of cancer screenings and other preventive care

What may change though, is the urgency of that messaging and the timing.

If risk is beginning earlier, then prevention cannot wait until middle age. It becomes something that starts in childhood, adolescence, and early adulthood.

It also changes how we think about research. Instead of studying cancer, cardiovascular disease, and dementia in separate silos, we may need to ask whether shared upstream forces are shaping risk across multiple diseases at once, how generational exposure patterns have changed, and whether there are certain periods in life when the body may be more vulnerable to those exposures.

Finally, this framing changes how we interpret the rise in early-onset cancer. Rather than viewing it as an isolated anomaly, it may represent a signal within a broader population transition.

Again, this is a hypothesis and more research is needed. But when multiple diseases begin shifting in the same direction in more recent generations, that convergence is enough to justify asking better questions.

And usually asking the right question precedes finding the right answer.

I’m curious to hear your thoughts.

Citations

1. Koh B, et al. (2023). “Patterns in cancer incidence among people younger than 50 years in the U.S., 2010 to 2019.” JAMA Netw Open.

2. Shiels M, et al. (2025). “Trends in Cancer Incidence and Mortality Rates in Early-Onset and Older-Onset Age Groups in the United States, 2010-2019.” Cancer Disc.

3. Siegel RL, Wagle NS, & Jamel A (2026). “Leading Cancer Deaths in People Younger Than 50 Years.” JAMA.

4. Downham L, et al. (2025). “Increase of early-onset colorectal cancer: a cohort effect.” JNCI.

5. Shah N, et al. (2020). “Adverse Trends in Premature Cardiometabolic Mortality in the United States, 1999-2018.” J Am Heart Assoc.

6. Zhang M., et al. (2025). “Global Burden and Risk Factors of Stroke in Young Adults, 1990 to 2021: A Systematic Analysis of the Global Burden of Disease Study.” J Am Heart Assoc.

7. He et al. (2025). “Global burden of young-onset dementia, from 1990 to 2021: an age-period-cohort analysis from the global burden of disease study 2021.” Nature.

8. Lauby-Secretan B, et al. (2019). “Body Fatness and Cancer – Viewpoint of the IARC Working Group.” N Engl J Med.

9. Guida JL, Gallicchio L, Green PA (2025). “Are Early-Onset Cancers an Example of Accelerated Biological Aging?” JAMA Oncology.

This conversation is part of an ongoing effort to learn from people building new approaches to cancer survivorship, especially when those approaches center patient experiences in ways that are often overlooked. I’m interested in how patients seek information when clinical guidance is incomplete or inaccessible, and how shared experience can become a source of support, encouragement, and practical information when people are navigating uncharted waters.

Susan Singer is a two-time breast cancer survivor and former health tech executive. She is currently building WOVN, a community-based platform designed to help breast cancer survivors learn from one another by making shared experiences easier to search, filter, and navigate. Susan is also the founder of Salura Health, a company that translates patient experience into research and industry insights.

This conversation focuses on Susan’s path as a survivor and the origins of WOVN. I was curious about what led her to build it, what she’s learning from the community, and how she thinks about the future of survivorship care. This interview is not sponsored, and the views expressed are Susan’s own.

Interview with Susan Singer

For readers who may not know you, can you share a bit about your path and how that has shaped the way you think about healthcare, the patient voice, and what’s missing in survivorship today?

My healthcare journey became intensely personal starting with my first breast cancer diagnosis in 2019 and then again in 2023. Before that, I had spent 15+ years building products in health tech, including senior product leadership roles, and earned my MBA from Darden. I thought I understood healthcare tech from a patient point of view pretty well, at least from a strategic and operational perspective.

But being a patient completely changed my perspective. What struck me most was how fragmented and scattered the most valuable information was—not the clinical guidelines or the medical protocols, but the real wisdom from other patients who had been through it. I found myself jumping between Facebook groups, Reddit threads, online forums, all these different platforms where people were sharing what actually helped them day-to-day. The insights were there, but they were impossible to organize or search when you needed them most.

That experience showed me that we’re missing something fundamental in survivorship care. We have the clinical milestones and the medical protocols, but we don’t have good systems for capturing and organizing the lived experience—the practical wisdom that only comes from going through it. That gap is what inspired both WOVN and Salura Health.

Was there a moment (or series of moments) when you realized that while each patient’s experience is deeply personal, there were shared questions and challenges that survivors were struggling to navigate alone? How did that realization lead you to create WOVN?

It wasn’t one single moment, but rather the cumulative experience of watching the same questions come up again and again across all these disconnected platforms. Someone would ask about managing side effects, or when they could return to certain activities, or how to talk to their employer and you could see dozens of people had asked variations of that same question in different Facebook groups or forums over the months and years.

Each time, survivors would generously share their experiences and advice. But then that wisdom would just get buried in the thread, essentially lost to the next person who needed it. There was no way to surface it, no way to filter by what was relevant to your specific situation. You couldn’t search by treatment type or stage or age or any of the factors that might make someone’s experience more relevant to yours.

I realized that while each journey is absolutely unique, there are shared patterns across those experiences in what we struggle with and what we need to know. The problem wasn’t lack of patient wisdom; it was that we had no infrastructure to make that wisdom accessible and searchable. That’s what WOVN is designed to solve: turning scattered patient experiences into organized, findable community knowledge.

What have you learned from the WOVN community that you didn’t fully anticipate when you first began building it?

One thing that’s become really clear through our beta community is how much storytelling itself is healing. I built WOVN thinking primarily about information access, making wisdom searchable and organized. And that’s absolutely important.

But what I didn’t fully anticipate was how much value there is in the act of sharing itself. When survivors tell their stories or share their current feelings and see them received by others who truly understand, there’s something therapeutic about that. It’s not just about the next person who will search and find that information; it’s about the person sharing feeling heard and validated in a way that’s hard to find elsewhere.

You often emphasize the importance of the patient voice. From your perspective, what gets lost when survivorship is defined primarily by clinical milestones rather than personal experience?

Clinical milestones tell you what happened medically – what treatment you had, what your pathology showed, when you finished treatment. And those are important markers. But they don’t capture what it’s actually like to live through it and beyond it, what you did to get through it a bit easier, what were your barriers to getting care, etc.

What gets lost is the practical, day-to-day wisdom: What helped you manage fatigue? How did you decide about reconstruction? When did you realize you wouldn’t feel the same as you did before your diagnosis? How did you navigate work, parenting, and other relationships through treatment? What actually worked for the side effects that linger?

These aren’t questions with clinical answers, but they’re often the questions that matter most to quality of life. When survivorship is defined only by clinical milestones, we miss the whole human experience of what it takes to not just survive but actually live well after cancer. The patient voice captures that dimension. It’s where the real wisdom about survivorship lives.

Here is an excerpt summary from a Salura Patient Insights study about what clinical measures miss:

Standard clinical assessments can miss what patients actually need. Two breast cancer patients might score identically on an anxiety scale, but one could be anxious about her prognosis while the other is facing eviction because treatment made work impossible. Clinical measures capture the symptom, both are anxious, but miss the context that determines what help would actually work. One patient needs prognostic counseling and emotional support; the other needs emergency housing assistance and a social worker. When survivorship care focuses only on clinical measurements, we risk offering interventions that address symptoms while missing the real problems patients are living with. That’s why patient voice matters. It reveals the context and lived reality behind the numbers.

Building a patient-led community raises important questions about trust, safety, and misinformation. How do you think about creating a space where survivors feel supported while also ensuring the information being shared is accurate, responsible and helpful?

This is something I think about constantly. The power of WOVN is that it’s authentic patient experience—real people sharing what actually happened for them. But with that comes responsibility.

The way I think about it is that WOVN is a place for sharing experience, not giving medical advice. When someone shares their story, they’re not saying “you should do what I did”, but rather they’re saying, “this is what I went through, this is what helped me, this is what I wish I’d known.” That distinction matters.

We also think carefully about how information is framed and presented. Patient wisdom is incredibly valuable, but it should complement clinical guidance, not replace it. The community needs to feel safe sharing honestly while understanding that everyone’s situation is different, and what worked for one person may not be right for another.

Building trust means being transparent about what WOVN is and isn’t. It’s a place to find solidarity, share your experience, learn from others’ experiences, and feel less alone. It’s not a replacement for asking your medical team. When we’re clear about that, I think we can create a space that’s both supportive and responsible.

I get a lot of questions from survivors who feel compelled to turn their experience into something helpful to others but are not sure where to start. What advice would you give them?

Start by sharing your story in whatever way feels natural to you. It doesn’t have to be grand or formal. Sometimes the most helpful thing is simply being honest about what you went through and what you learned, because that is what helps the next person feel less alone.

If you’re looking to do more, think about what frustrated you or what you wish had existed when you were going through treatment. Often, the gaps you experienced are gaps others are experiencing too. Your insight into what’s missing is valuable.

And be patient with yourself. You don’t have to have everything figured out or turn your experience into something immediately. Sometimes just showing up and being willing to answer questions from someone else going through it is constructive work. The desire to help others is powerful. Trust that instinct and start somewhere, even if it’s small.

When you think about the future of survivorship care, what does “doing survivorship well” look like to you? What feels most urgent to get right, and how do you see patient experience shaping that insight?

Doing survivorship well means recognizing that the clinical milestones are just part of your journey. It means having systems and support that address the whole person - the physical, emotional, practical, and social dimensions of life after cancer treatment.

What feels most urgent is making sure that patient wisdom and experience have a real seat at the table in how survivorship care is designed and delivered as well as to the individuals themselves. Not as an afterthought or a nice-to-have, but as central to understanding what patients actually need.

Through WOVN and my work with Salura, I see how much patients have to teach us about what survivorship actually requires. Patient experience should be shaping survivorship care at every level. We’re working toward making those voices accessible, organized, and impossible to ignore.

For survivors who are curious to learn more, what’s the best way to find information about WOVN and decide whether it’s a good fit for them?

Go to https://wovn.health/ to learn more and join. You can also follow me on Instagram and LinkedIn.

WOVN is currently in beta. We’re charging $1/month to keep the platform safe from spam – so far so good. And while we’re focused on breast cancer survivorship right now, we envision expanding over time. Note: all registration fees will be donated to breast cancer research.

If you’re someone who’s felt frustrated by how scattered patient information is, or if you’ve wanted a community that feels organized and accessible rather than overwhelming, I encourage you to join WOVN. We’re building this for everyone who is on or supporting someone on their journey and we’d love to have you be part of it.

Closing Reflections

By: Dr. Jennifer Guida, PhD, MPH

Thank you, Susan. I learned so much from this conversation. What stayed with me most was how technology can surface patient wisdom, but that wisdom is only useful if it can be seen, organized, and understood in context. Two patients can present with similar symptoms yet be living in completely different realities that demand different kinds of treatment and support. Susan gives the example of two cancer patients experiencing anxiety – one from the cancer experience itself, and the other from housing insecurity. Same problem, two completely different experiences and solutions.

Clinical tools are essential, but they are often blunt instruments. Without listening carefully to patients and understanding the circumstances shaping their symptoms, we risk identifying the wrong problem and offering the wrong solution.

Susan’s work raises important questions about how we value patient experience, how we interpret what patients are telling us, and what it might mean to build survivorship care that reflects the realities in which people actually live.

Thank you, Susan, for sharing your perspective so generously.

Susan Singer is CEO & Founder of Salura Health and WOVN. With over two decades of executive experience in healthcare technology, she’s dedicated her career to building products and scaling teams that make a meaningful impact on patient care. Having successfully led product strategy at companies like Lark Health and Rally Health, she brings both the healthcare domain expertise and operational experience needed to build solutions that truly serve patients, while creating sustainable business value. Susan is passionate about ensuring that patient voices are heard and integrated throughout our healthcare ecosystem.

Today’s post was co-written by Drs. Jennifer Guida and Alfonso Alfini.

Dr. Alfini is a returning guest contributor to Dividends Health. He is an Exercise Physiologist, Cognitive Neuroscientist, and a NCSA certified Strength and Conditioning Specialist who completed his doctorate at the University of Maryland and a postdoctoral fellowship at the Johns Hopkins School of Medicine. He is a former Program Director at the National Institutes of Health, National Center on Sleep Disorders Research and the Founder of E4 Strength, a muscle-driven program for brain health and resilience.

If you’ve ever seen videos of Ernestine Shepherd bodybuilding in her 80s or Johanna Quaas performing gymnastics in her 90s, you’ve probably had the same reaction most people do – that’s incredible!

These women move well, think clearly, have strength and stamina, and have lived independently longer than most of their peers. Given the choice, I think most people would want to age like this. Yet we tend to treat this kind of aging as exceptional, something reserved for the lucky or genetically gifted, rather than as the result of long-term training and preparation.

And that led us to the question: shouldn’t we all train for aging as if our lives depend on it? Which they obviously do.

Training for aging does not require exceptional genetics, endless free time, or access to boutique wellness services. Health is shaped by real constraints, including work, caregiving, illness, finances, and unequal access to resources. But research consistently shows that even small investments in movement, strength, and recovery meaningfully improve health and resilience over time (for example, see this recent Nature news feature on ‘exercise snacks’).

Preparation is not about doing everything. It’s about doing the right things, consistently, to preserve capacity as the years pass.

There are many occupations where mistakes and failure carry serious consequences, including aviation, emergency response, military operations, and elite sports – where lives and millions of dollars are often on the line. For these occupations, people train before the crisis. They assess readiness, plan years ahead, rehearse under controlled stress, and treat missteps as data.

Aging is no different. It is the most predictable, universal stressor we will all face, yet it’s the one most of us train for the least.

Elite athletes offer a visible example of this philosophy. They adopt principles that apply far beyond athletics: foresight, specificity, progressive overload, recovery, and long-term strategic planning. They don’t train at random. They train with a clear, precise end goal in mind.

Aging deserves the same level of intention.

Why Train for the Inevitable?

Aging is not a single moment or milestone. It is a constant, lifelong process that begins at conception and unfolds in the constant hum of everyday life until the day we die. While genetics, development, and the environment all influence how we age, the way we live in early and midlife strongly shapes how resilient or fragile we become down the road.

Most people do not spend much time thinking about their future older selves. But ask someone how they want to live in their 70s or 80s, and the answers are remarkably consistent: spending time with family, traveling, and continuing to do the things they’ve always enjoyed. No one says they want to be tired all the time, dependent on others for basic care, or confined by disability or pain.

But here’s the disconnect. Aging is the greatest risk factor for virtually all chronic diseases, and chronic diseases are the leading causes of death and disability in the United States. Heart disease, diabetes, cancer, stroke, and dementia do not appear overnight. They manifest gradually, and often silently beneath the surface, before symptoms force attention. Address aging and you may be able to prevent (or delay) disease and significant physical decline.

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The ability to survive and recover from unexpected events, like a fall, an acute illness, or hospitalization, depends largely on one’s reserve (stored physiologic capacity) and resilience (ability to tap that capacity). The behaviors we adopt in early and midlife—how we move, sleep, eat, and recover—compound into biological assets or liabilities.

Muscle mass, cardiorespiratory fitness, flexibility, balance, and recovery time all decline with age unless they are deliberately trained. Sometimes this decline is gradual. Other times, it happens rapidly following an injury, illness, or major life stressor. But if you prepare and train for it, a stressor may be more of a bump in the road than a major cliff.

Principles of Aging Prep

In settings where mistakes are costly and margins for error are thin, preparation must be proactive rather than reactive. Readiness is assessed continuously, stress is introduced deliberately, and performance is adjusted well before failure occurs.

Elite athletes are a visible example of this approach, but the underlying principles are universal, and preparation consistently follows the same pattern:

• They measure and reassess ability over time

• They train for future demands, not just current performance

• They periodize stress and recovery

• They treat sleep and nutrition as performance tools

• They treat injury, illness, and worsening performance as signals to course-correct

These principles translate remarkably well to aging. Aging bodies are not fragile by default, but they become fragile when reserve erodes unchecked. Training with intention builds capacity and regular reassessment prevents small problems from becoming catastrophic ones.

Many approaches to healthy aging ultimately recommend similar behaviors—strength training, aerobic exercise, balance and mobility work, adequate nutrition, etc. Where they differ is not in what they recommend, but in why and when. The framework we are presenting is oriented around preserving biological reserve and resilience across the lifespan, so that illness, injury, or aging itself is less likely to be abrupt or catastrophic. The goal here is to move from being reactive to proactive and remain adaptable, capable, and better insulated from risk over time.

Aging is unavoidable. How it unfolds is not.

In the next post, we’ll lay out the core principles of an intentional aging plan, like how to think about measuring capacity, training for future demands, managing stress and recovery, and course-correcting early, before small problems become irreversible ones.

Stay tuned.

This week, the American Cancer Society released new statistics that deserve to be celebrated.

Nearly 70% of people diagnosed with cancer now live five years or longer. Cancer death rates continue to fall, driven by better treatments and decades of progress in tobacco control. Advances in screening and imaging mean more cancers are detected earlier, sometimes before symptoms ever appear.

This is real progress. It reflects decades of work by researchers, clinicians, advocates, and patients who pushed cancer care forward.

But advances in survival have not equated to advances in quality of life or better long-term health for cancer survivors.

For millions of people, finishing treatment does not mean returning to life as it was before. Many survivors describe the post-treatment period as disorienting—marked by the abrupt end of intensive treatment, a sudden loss of support, unanswered questions, and lingering symptoms.

Fatigue, pain, cognitive changes, cardiovascular disease, mobility limitations, anxiety, depression, and fear of recurrence are not rare exceptions. They are common experiences. Some of these conditions emerge years or decades later, often after routine oncology follow-up has tapered or ended. Many survivors are not given clear guidance on what to expect, which symptoms to watch for, how to manage them, or where to turn for support.

Longer survival has transformed many cancers into chronic conditions, yet our healthcare system was never built to manage survivorship at this scale.

Mental health, primary care and oncology clinicians are already managing growing caseloads amid record workforce shortages. Oncologists are trained and resourced to treat cancer, not to provide decades of follow-up for complex late effects. Primary care clinicians, facing their own time constraints, are often asked to manage survivorship without adequate training, tools, or coordination with oncology. Expecting existing clinicians to simply “do more” within the current system is neither realistic nor sustainable.

At the same time, this moment holds real opportunity.

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We are witnessing rapid growth in health technology. Emerging models in care navigation, digital health, and longevity-informed medicine suggest ways survivorship care could be distributed across teams, supported by technology, and extended beyond clinic walls.

These approaches are about augmenting care and using remote monitoring, coordinated pathways, and truly integrated, multidisciplinary teams to ensure survivors don’t fall through the cracks once treatment ends.

But innovation must be paired with intention. Without attention to equity, new models risk benefiting only those with the most resources. The ACS data continue to show disparities in cancer outcomes, including persistent gaps by gender, race, income, and geography. Survivorship care must be designed to close gaps, not widen them.

The new survival statistics tell us something important: cancer diagnostics and treatment are working better than they ever have.

Now the next challenge is clear.

If we are succeeding at helping people live longer after cancer, we now have a responsibility to build systems that sustain health, wellbeing, and function long after treatment ends.

Survival is a milestone, not the finish line.

If you’re working to rethink survivorship care or build new models that support life after cancer, I’m always open to thoughtful conversation.

Data source: American Cancer Society, Cancer Statistics 2026.

As this year ended, I found myself returning to a simple question: why am I still writing here?

I started this Substack as a way to communicate the science of aging well and living better after cancer. My original goal was to translate research into something people could use in their daily lives. Over time, that writing evolved.

What started at the beginning of the year as deep dives into health topics has expanded into something broader: questioning the status quo in medicine, naming where it falls short, and highlighting the growing gap between what is known (scientific evidence) and what is done (standard medical practice).

Much of my professional life has been spent working at the intersection of public health, aging, and cancer survivorship. I was first trained as an anthropologist, and later as an epidemiologist—the former to understand the complexity of the individual human experience, and the latter to see how collections of those experiences shape population-level health. All of this informs how I think about care, evidence, and accountability.

This space exists because scientific information is often inaccessible – hidden behind journal paywalls, buried in technical language, or stripped of nuance once it reaches the public. The questions that matter most in health are rarely simple.

Questions like:

• How do we build a healthcare system that doesn’t just extend life, but supports living well?

• How do we translate evidence into care that is equitable, humane, and meaningfully improves people’s lives?

• How do patients and survivors advocate for themselves in systems that weren’t built for them?

• And how do decision makers – often far removed from clinical or lived experience – understand what it actually feels like to navigate healthcare as a patient, survivor, or caregiver?

These are the questions that continue to pull me back to the page.

If you’ve been reading for a while, you may have noticed that not every post looks the same. Some focus closely on science. Others pull back to look at assumptions we rarely stop to examine. That breadth is intentional. Health does not exist in isolation from policy, environment, and cultural forces, and medicine does not always move at the pace (or in the direction) that patients need.

Writing here has been a way to think out loud and to sit with this complexity, rather than rushing toward easy answers. This Substack is my attempt to hold all of that in view at once.

Looking Forward to 2026

As a new year begins and the buzz of resolutions becomes inevitable, I find myself excited by the hope and promise of new beginnings. I’ll be starting a new role, and with that comes new challenges, but also the need to be more thoughtful about how and when I write here. The goal here has never been volume, but rather sharing when I feel there is something important that needs to be said. You can expect more flexibility in the posting cadence, and more guest voices, something I’m genuinely excited about. There are many forward-thinking people doing important work in this space, and I want to make room for them to be heard.

If you’re here because you want to understand and advocate for your health better, or push for a better healthcare system, I’m glad you’re here. This space will continue to be one where science and humanity come together, and where small, thoughtful steps can compound over time into meaningful change.

I genuinely appreciate your thoughts and invite you to share your feedback. I am looking forward to continuing the conversation in the year ahead.

Happy New Year!

Jen

Earlier this year, I started to feel not like myself. My workouts felt heavier. I was easily fatigued. My brain was foggy. My sleep was already unpredictable (I have small kids), but this felt different. Not catastrophically different… just off. And persistently off.

So, I asked my doctor for a full blood work-up.

When the results came back, everything was normal.

Normal CBC panel.

Normal thyroid.

Normal iron levels.

Normal hormone levels.

Except when I looked more closely, all of my iron markers were at the very bottom of the reference range. So were my testosterone levels. “Normal” was clearly not optimal.

If I had accepted the lab report as the final word, nothing would have changed.

That disconnect—not between me and my doctor, but between me and the lab ranges we all rely on—sent me down a rabbit hole. Who decides what is “normal?”

What “Normal” Really Means (and What It Doesn’t)

Most people assume normal laboratory reference ranges reflect what’s healthy.

They don’t. They reflect what is statistically common.

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Laboratory reference ranges are usually created by collecting results from a group of people considered “disease-free” and identifying where most of those values fall (typically, the middle 95%), which becomes the reference range. It’s a simple statistical approach: most people fall within this range, so this becomes “normal.”

But treating these ranges as clinical decision tools can be problematic for a few reasons.

1. When Abnormal is Masked as Normal

One of the most important problems with reference ranges is how they are used. When a lab result is labeled “normal,” it often becomes a stopping point with no further questions and no further context. But reference ranges were never designed to classify individuals as healthy or unhealthy. They were designed to describe how common that lab value is among other people.

This creates a well-described problem in epidemiology: misclassification. This is when someone is labeled “normal” when they’re not, or flagged as abnormal when nothing is wrong.

Take ferritin as an example. Ferritin stores iron and helps your body make red blood cells.

My ferritin level was 25 µg/L, which comfortably fell within my lab’s “normal” range of 16–154 µg/L. But research shows that ferritin below 30 µg/L indicates iron deficiency in healthy adults, and in people with chronic inflammation, the cutoff jumps to 100 µg/L.

Even though I was categorized as “normal” by my lab, I was actually iron deficient. This misclassification can have major implications for a patient’s well-being. It means that a person could be classified as “normal” on paper but have iron stores low enough to affect energy, cognition, exercise tolerance, thyroid function, hormones, and cardiac health.

Getting it right requires better reference ranges, better clinical awareness, or both. This is why many clinicians rely on patient symptoms to accompany their interpretation of lab results. But also, many doctors are busy and will quickly scan for anything the laboratory flagged as abnormal, which is what happened to me.

2. “Normal” is a Moving Goal Post

As the U.S. population becomes less healthy, what is considered “normal” inherently shifts. This is one of the most under-discussed problems in modern medicine.

Take metabolic health.

Over the last few decades, the metabolic health of the U.S. population has steadily declined with more insulin resistance, higher fasting glucose, higher triglycerides, lower HDL, and increased visceral fat (fat that accumulates around the midsection). And because reference ranges are built from population averages, these shifts gradually redefine what is “normal.”

A fasting glucose reading of 99 mg/dL is technically normal. Yet multiple large studies show that people with fasting glucose in the upper 90s face significantly higher risk of developing type 2 diabetes and heart disease than those whose fasting glucose sits below 85 mg/dL. The only reason 99 is considered normal is because so many people now sit in that range.

Lipids tell a similar story. As metabolic disease becomes more common, triglycerides drift higher and HDL levels trend lower across the population. So, someone with triglycerides of 140 mg/dL or HDL of 40 mg/dL might be reassured their results fall within normal limits, even though these levels often reflect early metabolic dysfunction and increased cardiometabolic risk.

This is the paradox of population-based reference ranges: as the population becomes less healthy, the “normal” range expands to include widespread dysfunction, and “health” becomes tethered to a declining baseline.

Why “Optimal” Can’t Be One-Size-Fits-All

By this point, hopefully it is clear that falling inside the normal range does not mean you are functioning at your best. But that raises a harder question: what would functioning at your best even look like?

Part of the reason “optimal” is so hard to define is that human biology isn’t uniform. What supports healthy function for one person may not be ideal for another, even when both fall within the normal range. Sex, life stage, environmental influences, and genetic background all shape how the body regulates hormones, stores nutrients, and responds to stress. Reference ranges, by design, smooth over these differences.

Women Are Not Men

Sex-specific differences are one clear example. Hormone levels fluctuate across the menstrual cycle, pregnancy, postpartum, and perimenopause, yet most reference ranges treat women’s physiology as static. When these differences aren’t reflected in reference ranges, “normal” becomes a blunt tool that misses meaningful variation in how people feel and function.

Race vs. Genetic Ancestry Distorts Interpretation

Some labs still adjust ranges based on socially constructed racial categories (e.g., black, white, Asian) that do not map neatly onto genetic ancestry. Genetic ancestry-informed approaches are more precise, but they are rarely incorporated into routine reference ranges. As a result, population averages are often applied to individuals whose biology doesn’t match the assumptions behind those averages. This practice can distort interpretation, especially for already underserved groups, and moves us further away from true precision.

From Population Norms to Personal Baselines: The Precision Medicine Shift

Precision medicine offers an entirely different model, one that uses personal health trajectories and predictive modeling to build individualized reference ranges that don’t just tell you what is “normal,” but rather what is optimal for you.

In this future world (which is already here), each person has their own unique “set point signature.”

Over time, your personal health data (symptoms, lab trends, cycle patterns, wearable metrics) can reveal your personal baseline for when you feel your best. Because what is optimal for you may be different from what is optimal for me.

In fact, reference ranges derived from a person’s own historical data (even with fewer data points) have been shown to be more reliable than population-based reference ranges from larger datasets.

Precision models can also account for different factors that make us unique, like sex, life stage, genetic ancestry, sleep, physical activity, and more, which helps predict an optimal range for a certain outcome.

For example, instead of declaring 2–80 ng/dL as a “normal” testosterone level for a woman, like my lab (really, 2 ng/dL is normal??? That is practically zero!), we can use your unique factors to identify which testosterone levels predict:

• higher physical performance

• improved cognition

• better mental and sexual health

This is the future and, in many ways, it’s already here. It’s just that access is unevenly distributed across society in boutique medicine clinics.

So, Until That Day Comes

We need to stop mistaking normal for optimal.

Normal is a statistical artifact.

Optimal is personal, functional, and anchored to how well you feel and perform.

And until the healthcare system catches up (and it will), we each have to bridge that gap ourselves.

If something feels off, it probably is.

And if your labs say you’re fine but you know you’re not, you are allowed to keep asking questions.

The future of medicine is individualized.

You deserve care that reflects that.

Talk soon,

Jen

Disclaimer: This newsletter is for informational and educational purposes only. It is not medical advice and should not be used to diagnose, treat, or cure any condition. Always consult with a healthcare provider before making changes to your health routine.

For your reading pleasure

Hirode and Wong, Trends in the Prevalence of Metabolic Syndrome in the United States, 2011-2016, JAMA, 2020.

Manrai, A., Patel, C., & Ioannidis, J.P.A., In the Era of Precision Medicine and Big Data, Who Is Normal? JAMA, 2018.

Timbrell, N., The Role and Limitations of the Reference Interval Within Clinical Chemistry and Its Reliability for Disease Detection, BR J Biomed Sci, 2024.

That personal experience made me curious: how well does the science support these claims? As it turns out, the evidence is modest, but still points toward small, meaningful benefits.

Scientifically speaking, gratitude is difficult to define because it is a lot of things. It can be an emotion, an attitude, a coping response, a moral virtue, a personality trait, and a habit that can be cultivated. That complexity makes it tricky to study well.

The largest meta-analysis to date reviewed 64 randomized controlled trials and showed that patients who participated in gratitude interventions, like journaling about gratitude, expressing gratitude to others (verbally or in writing), drawing pictures with captions of gratitude, and thinking of things that make you feel grateful, experienced greater positive emotions, better mental health, and fewer symptoms of anxiety and depression.

While these results are encouraging, the authors also pointed out that the research has limitations. Many of the studies used different methods, had small sample sizes, or lacked strong control groups, which makes it harder to draw firm conclusions. Gratitude research also tends to appear in smaller journals and rarely involves the kind of large, highly controlled trials we rely on in medicine.

And that’s okay. Not everything that supports well-being needs to meet the standard of a Phase III clinical trial to be useful.

People report feeling better when they practice gratitude. Maybe not dramatically better, but enough to notice, which is meaningful. It is a low-cost, low-risk practice that appears to nudge the mind toward more adaptive patterns, resulting in more positive emotion, a little less worry, and a slightly sunnier tilt to the day. So, the science may not be perfect, but the practice is accessible and consistently linked to small improvements.

Sometimes, especially in complicated seasons, a small shift is enough to matter. Sometimes that is all you need.

And let me end by saying: I am deeply grateful for your readership and for supporting this publication.

Wishing you a wonderful Thanksgiving holiday.

With gratitude,

Jen

After my recent piece on digital tools in survivorship, I invited Dr. John Librett, PhD, MPH to contribute to today’s post. He has spent more than two decades working at the exact intersection I wrote about — survivorship, behavioral science, and digital health.

John is a cancer survivor himself, a clinical epidemiologist, entrepreneur, and the Chief Science Officer at Survivor Healthcare, where he leads efforts to integrate evidence-based medicine, digital tools, and real-world data to improve survivor outcomes. He has advised organizations ranging from the White House to the World Health Organization, and he has built clinical programs and policy initiatives that shape how survivorship care is delivered today.

I asked him to share his perspective because he brings something rare: scientific rigor, policy experience, and lived experience all in one voice. His response was honest, insightful, and exactly the viewpoint this conversation needs.

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Guest Perspective

By: Dr. John Librett, PhD, MPH, Chief Science Officer, Survivor Healthcare

Dr. Guida’s article describes a meeting of oncologists, digital health experts, and survivors who were all asking the same question: Can Digital Tools Help Survivors Live Better?

As a cancer survivor, clinical epidemiologist, health policy scientist, and entrepreneur, that question defines both my work and my lived experience. Dr. Guida’s article echoes a truth: technology adoption follows need, not novelty.

During my own cancer experience, I saw firsthand the power of digital tools, designed around the correct need. My cancer related fatigue (CRF) was misdiagnosed as depression. Fortunately, normative patient-reported outcomes that measure CRF and mental health as separate domains, revealed I had significant CRF, not depression. This digitally supported insight reframed my treatment approach, helping me to live better.

Cancer-related fatigue and depression can look very similar from the outside, but they are not the same problem. CRF is a whole-body exhaustion driven by cancer and its treatments that is not fixed by rest, whereas depression is primarily a mood disorder marked by persistent sadness, loss of interest or pleasure, and feelings of hopelessness. Many screening tools mix questions about sleep, appetite, low energy, and trouble concentrating – somatic symptoms from chemotherapy, radiation, and surgery as much as from depression.

In our cancer survivorship clinic, digital questionnaires that score fatigue and mood separately have shown that one out of three patients have a mismatch pattern (fatigue without depression, or depression without fatigue), demonstrating how easily a single blended score could point clinicians toward the wrong diagnosis and the wrong intervention.

For cancer survivors, families, and clinicians, a practical takeaway is to ask, “Are you measuring fatigue and my mood separately?” and “Could this be cancer-related fatigue, depression, or both?”

Genuine health care innovation depends on overcoming the inertia of entrenched practices. I often equate the implementation science effort to evolutionary biology, whereby successfully ‘crossing an adaptive valley’ means leaving a stable but suboptimal niche to reach a higher fitness peak. In a similar way to evolutionary biology, healthcare must navigate its own adaptive terrain to reach higher peaks of clinical and systemic outcomes.

Technology should fit into the rhythms of people’s lives, not demand new ones. We need digital tools designed with cancer survivors and clinicians, not for them. To this end, the greatest uptake happens when technology is developed to solve a particular user ask; not when technology is built first and then goes searching for users.

Within this framework, we begin with evidence-based guidelines, move through evidence-based medicine, and verify with evidence-based measures. When technology is built on this evidence-based chain, rather than apart from it, guidelines are turned into real-time decisions to systematically improve care for survivors.

Progress in survivorship care, like evolution, requires learning and adaptation.

We don’t need another app. We need to evolve.

Closing Reflections

By: Dr. Jennifer Guida, PhD, MPH

Reading John’s piece, I’m struck by how often survivorship care falls somewhere between good intentions and obsolete systems. The message here isn’t anti-technology, but rather a reminder that if we want to change the status quo, we have to change the assumptions we build with. Evidence before interfaces and trust before technology.

That’s the evolution survivors deserve and the one we should be building toward. Survivors don’t need more apps — they need better solutions.

A special thanks to Dr. John Librett for contributing to today’s post. If you enjoyed this post, please like, share, or comment below. We’d love to hear your thoughts.

A steaming mug, chenille blanket, soft slippers, curled up by a fire — all signals that fall is supposed to be the start of a quieter season. Introverts rejoice! But the reality is that this time of year comes with end-of-year deadlines, holiday logistics, and to-do lists that seemingly get longer as the daylight fades faster.

I’m feeling it too. Fall break slipped into weeks of daycare illnesses that swept through our house. Work stuff. Travel. Halloween. Conferences. It’s a full season, and this is just the lead-up to the holiday magic that I only now remembered I am supposed to curate.

Here’s the truth:
Fall is framed as a season of acceleration, but biologically, it’s a season of slowing down.

As light diminishes, our circadian system is nudged toward earlier melatonin release and altered internal rhythms. Mood and motivation tend to dip with reduced daylight, and behavioral studies show that energy, alertness, and sleep–wake patterns often shift with the season.

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Yet instead of listening to those cues, we press harder and try to outrun the calendar. We sprint toward year-end goals. We take on more. And our physiology, so deeply attuned to seasonal rhythms, whispers (or screams): please pause.

Maybe burnout is not just overwork, but a discrepancy between what the season asks of us and what the world demands.

In the fall, the trees pull their nutrients back into their roots. That inward movement is what allows them to bloom again. Maybe we’re built the same way.

I’ve been wondering what it would look like to rest on purpose this fall. Not a vacation. Not a retreat. Just recalibration.

For me, it could mean shorter work sprints. Longer walks outside. Stomping in more piles of leaves with my two-year-old. Closing my laptop before the sun disappears. I haven’t done any of this yet, but the intention feels like a start.

Reflection, after all, is its own form of productivity.

I wrote about defensive joy a few weeks ago (read here)… and I am totally failing at implementing it in my own life. Defensive joy is the practice of creating intentional moments of connection, meaning, or creativity and fiercely protecting them from the monotony of everyday life. It hasn’t been working out for me because the mental load to engage in any activity (which let’s be honest happens after my kids go to bed) far exceeds my current capacity.

But maybe a reframe will help? Perhaps choosing the hardcover book and the soft blanket by the cozy fire, or picking up my most cherished fountain pen and the leather-bound journal is what defensive joy looks like in this season? Fall invites us inward, so perhaps aligning with the call of the season is what is needed.

I share this because maybe you are feeling it too. If you’ve been feeling depleted or distracted, maybe the answer is not another reset plan or a perfectly optimized routine. Maybe it’s asking for less. Less urgency, less output, and less noise. More replenishment, more noticing, more quiet. And with more restoration comes clarity and recalibration.

So, take this as a quiet nudge to check in with yourself before life hits the accelerator.

What do you need to feel restored?
What is softly calling for your attention beneath the noise?

Maybe this season is not about keeping pace.
Maybe it’s about letting yourself slow down.

Talk soon,

Jen

Last week I was invited to attend a meeting hosted by the Forbeck Foundation on Digital Technology to Improve Pediatric, Adolescent, and Young Adult Survivorship Care and Outcomes.

It was a small meeting with big ideas. Pediatric oncologists, digital health experts, data scientists, and cancer survivors each brought a different lens to the same question:

How can we make survivorship care smarter, more personal, and more connected?

The Problem: Fragmented Care and Missing Information

One theme surfaced again and again: cancer survivors are falling through the cracks. Many never return for follow-up visits, some don’t know they’re supposed to, and others simply can’t access the care they need. Clinicians feel that loss too. Many spoke about the frustration of knowing their patients are out there and in need of screenings and surveillance, but have no reliable way to reach them once treatment ends. Most oncologists are already stretched thin, seeing dozens of patients a day with limited support for long-term follow-up. The result is a care system that’s reactive by design.

And then there was the survivor who stood up in the back of the room, apologetic for feeling like she had something important to say, intimidated by a room full of doctors, and unsure of how she’d be received. She had been diagnosed with a rare cancer nearly two decades before, at the age of 33. She said she received no information about what to expect after her treatment ended. She had not seen her oncologist in some time because no one told her to, despite being treated at a prominent university hospital.

Later, she privately disclosed to me that she’d been struggling with memory lapses and cognitive changes over the past few years. She could not remember anyone’s name. She felt embarrassed, scared, and unsure who to ask for help. Until that moment, she didn’t realize these symptoms might be connected to her cancer treatment. She told me that she felt like she failed herself, when in truth, the system failed her. In the absence of information, patients walk away assuming all is well.

Even when patients are informed of future risks, how well they absorb, understand, and interpret that information varies dramatically. We often throw numbers and medical jargon at people as if everyone has an advanced degree. What does it really mean to hear that “3 in 1,000” will develop some disease? Is that good or bad? What does that mean for you personally?

Worse still, patients are expected to consume unfamiliar information delivered rapid fire by clinicians and then are expected to quickly process that information and ask the right questions within a 10-minute visit, if you’re lucky. This is an experience I had recently when I attended a family member’s oncology appointment. Even with a PhD and a decade of experience as a cancer researcher, I was barely able to keep up with everything the oncologist was saying to us. They were speaking a mile a minute and then paused for 5 seconds to give us the opportunity to ask questions before dashing out the door to their next patient. I can’t imagine that practicing medicine this way leads to more trust between patients and providers or promotes more informed decision making.

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Now, I know that not all clinicians are like the one I described above, but many do not have the time or the tools to explain health information in a way that feels personal and actionable. This is where there is opportunity for innovation and empathy to intersect.

One clinician described a small but powerful intervention: their clinic now shows patients a five-minute video on the last day of treatment, explaining what complications to look out for and why follow-up matters. Afterward, the number of survivors returning for care rose dramatically. This short video didn’t fix all the gaps, but it shows the impact of a small start. It also reinforces that knowledge is preventive medicine.

Where Technology Can Help, But Must Be Thoughtful

If communication is where survivors get lost, perhaps technology can help us find them again. Digital health tools have the potential to improve the quality, consistency, and delivery of care, but only if they’re designed to fit into people’s lives, not the other way around.

Survivors don’t need another app, they need support that integrates with what they already use. Wearables, smartphones, and online communities could be transformed into engines of insight.

Imagine using data from wearables and patient-reported outcomes to spot early patterns of change in health or well-being, which prompt timely check-ins with clinicians. Artificial intelligence could help turn these data into meaningful insights and personalized guidance, improving both care delivery and survivors’ sense of agency over their health.

These innovations also hold promise for bridging inequities in survivorship care for survivors living in rural communities, lower-income settings, places where survivorship clinics don’t exist or there are major shortages of specialists. Digital health tools could extend the reach of evidence-based follow-up care to those who need it most, if we design them with inclusivity and accessibility in mind.

But technology alone isn’t enough. The human element to survivorship care is so important to build trust and rapport. Many survivors are tired of medical systems that speak in abstractions, or worse, make them feel forgotten. Meeting survivors where they are (physically, emotionally, and digitally) will matter as much as any algorithm.

Looking Ahead

Survivorship should mean living well with the tools, knowledge, and care networks that make that possible. The question that stayed with me after the forum wasn’t just about technology, but about people: How can we build systems that learn from survivors, adapt to their needs, and evolve alongside them?

That’s where the future of survivorship begins.

If you are a patient, provider, or innovator, I am curious to hear your perspectives, and I’d love to connect with you to make quality survivorship care the standard for all.

More soon,
Jen