The Gap Nobody Wants to Talk About: Who's Really Caring for Cancer Survivors?
Here's a question that keeps me up at night: What happens after you've "beaten" cancer?
I'm not talking about the celebration dinner or the relief of hearing "clear scans." I'm talking about six months later, when you're sitting in your doctor's office trying to explain that something feels off, and you watch their eyes glaze over because you're no longer the "active cancer patient" they know how to treat.
Dr. Ilana Yurkiewicz just published a piece in Harvard Medicine that made me want to stand up and cheer—and also made my stomach drop. She's describing something I lived through and something millions of us know intimately: the void between oncology and primary care where cancer survivors fall through the cracks.
The Void Is Real—And It's Growing
When I finished my treatment and surgery, I felt that massive relief I wrote about in Crushing the Cancer Curveball. But then came something I wasn't prepared for: a strange emptiness. The center of my universe was no longer cancer treatment. The gravitational pull was gone, leaving me floating in space, not knowing exactly where I belonged in the medical world.
My sister Tracey described it perfectly: "People expect to feel relieved at the end of their cancer journey... The doctors tell you that you are healthy. Don't smoke. Exercise regularly. Good luck to you. Which, after being in the thick of the fight, feels like a little bit of a letdown."
Dr. Yurkiewicz calls this the gap between oncology and primary care. I call it medical no-man's-land. And here's the kicker: by 2040, there will be 26 million of us living in this void.
Meet Kate—She Could Be Any of Us
Dr. Yurkiewicz tells the story of Kate, a software engineer who survived not one but two rare cancers before age 40, only to discover she carries Li-Fraumeni syndrome—a genetic condition that gives her a 90% lifetime cancer risk.
Kate's questions sound painfully familiar: Are these night sweats menopause or something sinister? Will this surgical scar numbness last forever? How do I live knowing cancer could strike again?
But here's what broke my heart: Kate hesitates to even call herself a cancer survivor.
How many of us feel that way? Like we're stuck in limbo—not sick enough for oncology, too complicated for regular primary care?
The Questions No One Knows How to Answer
I've been there. Sitting across from well-meaning doctors who punt my concerns back and forth:
“How do I deal with the persistent weight gain?”; “What can I take for libido and hot flashes?”; “When should I be concerned about aches and digestive issues"?”
"Your oncologist should handle the neuropathy questions." "That's really more of a primary care issue."
Meanwhile, you're thinking: I just want ONE doctor who understands that my body has been through hell and back, and maybe—just maybe—that context matters when I'm trying to figure out why I can't remember words or why my hip aches in a way it never did before.
I’m very excited to be meeting with one of these doctors in June - I’ll post an update.
The 99% Nobody Talks About
Here's what's maddening: We talk endlessly about the fight against cancer, but we barely whisper about what happens to the 99% of us with early-stage breast cancer who survive.
We're told we're "lucky." We're expected to be grateful and move on. But nobody prepared us for:
The cognitive fog that lingers years later
The anxiety that turns every ache into a potential recurrence
The way cancer changes your relationship with your own body
The impact of cancer on your sex drive
The financial aftermath that follows you long after treatment ends
Dr. Yurkiewicz is doing something revolutionary at Stanford—she's created a primary care practice specifically for cancer survivors and "previvors" (people with genetic risk factors). She's filling the void.
The Hard Questions We Need to Ask
Why doesn't this model exist everywhere? Why are there no billing codes for survivorship care? Why are we training more oncologists to treat cancer but not teaching anyone to care for the millions of us living after it?
And here's the big one: Why do we act like survivorship is a luxury instead of a medical necessity?
Dr. Yurkiewicz mentions that medical students are increasingly interested in cancer survivorship as a career, but she has to tell them the truth: "There is still no career path."
That needs to change. Tomorrow.
What This Means for You
If you're reading this as a survivor, know this: Your concerns are valid. Your fatigue isn't "just in your head." That anxiety about every new symptom? Completely normal. The way you feel caught between two worlds of medical care? You're not imagining it.
And if you're supporting someone through or after cancer, understand that the "celebration" of being cancer-free can feel surprisingly hollow when they're struggling with problems no one seems equipped to handle.
The Future We Need to Fight For
Dr. Yurkiewicz envisions survivorship fellowships, team-based care with nutritionists and social workers, and billing codes that cover this essential care (I also want a billing code for nurse navigators - angels on earth). She imagines a world where being a cancer survivor doesn't mean being medically homeless.
I'm imagining it too. A world where Kate doesn't hesitate to call herself a survivor. Where that void between oncology and primary care gets filled with doctors who understand that surviving cancer is just the beginning of a whole new medical journey.
Until then, we will continue to speak up. We keep sharing our stories. We keep insisting that the 99% of us who survive deserve care that matches the complexity of what we've been through.
What has been your experience with survivorship care? Have you felt caught in this medical void? I'd love to hear your story.
Dr. Yurkiewicz's full article is worth reading if you're interested in the clinical details of how survivorship care could be transformed. You can find it in the latest issue of Harvard Medicine magazine.