Questions come up when you are living in this ‘after.’ Not about your diagnosis, but mid-scroll of a new trial report on the shifting standard of practice for endometrial cancer — your exact profile — your gut frames the question before your brain is even fully engaged: should I be on that? And even though you are actively trying to shift from living in ‘patient’ mode to living your full life, the rabbit hole of research opens, and you’re off — chasing a question that, on paper, might have been better answered two years ago.
The pace of change is fast
Somewhat like how the conversation around shoe tech and supplements has changed running record comparisons, the practice notes for endometrial cancer treatment are rapidly evolving. I landed as a Stage IIIA1, NSMP/p53 wild-type diagnosis in 2024 — the exact year the subgroup was being operationalized into standard care. I’m not looking back at an old diagnosis through a new lens; I’m living the lag between ‘your classification exists’ and ‘your classification has new therapies built for it.’
I’m grateful that my first line of treatment: six rounds of CarboTaxol, followed by 25 EBRT sessions and one brachytherapy boost, led me to being NED since I finished treatment. These days, though, I wonder if the newer treatment protocols might have yielded less toxic results, and whether my lymphocytes would be in better shape? A strange thing to feel when you actually stop and do the math.
Maintenance FOMO
The reality is these trials that are reporting now, the ones targeting my exact molecular signature, enrolled patients at the front end of treatment — newly diagnosed, post-chemo, often Stage IV or recurrent. The trials opened enrolment before I existed in this profile. I’m 2+ years out from the start of treatment, NED for my EC, and ineligible for the drug I’m reading about precisely because I did well.
But my FOMO doesn’t come from the science. Instead, it’s my chosen peer group. My primary support community skews American, and American treatment culture (fighting insurers for scans, chasing access) doesn’t map well to my gut’s ‘should I be doing more?’ question in a Canadian system that takes a different approach to the evidence.
Which makes it worth asking what Canada is actually optimizing for, since it clearly isn’t ‘less.’ The two systems answer different questions about acceptable risk and cost. Where the Americans in my community live with a system maximizing treatment — what drug to add — the Canadian system leans toward de-escalation — what’s the most effective treatment with the least intervention.
The Phase II CCTG EN10 / RAINBO trial is a great Canadian example. It’s not ‘less care’ but a structured research plan to find the floor: who can skip radiation or chemo and still be cured. It reframes the question as an active research approach. “By identifying these patients …, we can spare them many of the side effects associated with commonly used treatments,” says Dr. Jessica McAlpine, of the Vancouver General Hospital and Vancouver Coastal Health Research Institute.
What makes it interesting is that the Canadian RAINBO arm is part of a larger, international research project. And I wonder how the conversations between the Canadian and American researchers develop, given the different cultures. The study won’t be reporting results until 2028, when I come up on five years post-diagnosis, a critical milestone for any cancer survivor.
Even knowing all of this, I still open the trial updates as they are published. I’m not ready to drop my ‘patient’ orientation, it seems.
Too Well for the Trial
I’d love to tell you I’ve made peace with these questions. The truth is closer to this: I’m well enough to want to be useful, but not really helpful to the exact trials built for someone like me. That’s not a contradiction I get to resolve — just one I get to manage. So I keep tracking. And with each quarterly appointment, I keep asking my team the maintenance question.
That’s the cost of being a good outcome. Nobody warns you it’s this unglamorous.
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