Where the Data Ends: Why I Advocate

A Personal Reflection by Jennifer Pogue

With a freshly poured coffee mug in one hand and a plate of sticky continental muffins in the other, I scan the grand, windowless ballroom buried in the basement of Toronto’s Hilton Hotel. I’ve swapped my usual tee for the most professional blazer I own, which I’m now realizing is 100% unbreathable polyester. Peering through a sea of polished faces cloaked in expensive suits, my chest tightens. Why am I here?

A rolodex of exit strategies races through my mind until I spot my friend Kelly near the stage, which displays slick white chairs, microphones, and a podium. I make my way to the empty seat next to her, nearly spilling my coffee as I clock the pink and indigo title graphics projected overhead: Canadian Breast Cancer Symposium 2025: Shaping the Future of Breast Cancer Research & Care.

I set my things down to claim my spot and give Kelly a wholehearted “happy to see you” hug, with the kind of squeeze that two friends living with stage 4 breast cancer mean in every sense, then make my way around the table to shake the hands of the other lovely attendees we’ve been grouped with. Alongside our name badges, I catch familiar glows in their eyes — a quiet pride in being here, shadowed by the weight of what it took to arrive. Or perhaps that’s just my own reflection, though I suspect not.

We are not the usual attendees – we’re not oncologists, pathologists, radiologists, or researchers. We’re a newer table. We are breast cancer patients of various stages and subtypes — the living humans who make up the research and data that impacts our life plans, appointments, and lorazepam doses. We are patient advocates, invited by Rethink Breast Cancer, an organization that has long championed the patient voice in shaping more inclusive care. We’re here to represent, listen, reflect, and carry this knowledge back to communities that count on it.

Not my usual Thursday morning. Then again, nothing has felt usual since being diagnosed with stage 4 breast cancer.

As the room quiets for the 9 a.m. opening remarks, I cringe as various math and figures begin to fill the screens. I know firsthand that statistical literacy is essential in clinical practice, but it makes my head want to explode. Why am I doing this? But I already know the answers. I take a breath and sit taller. I’ve been invited to participate — that alone is huge for someone who is continuing training as an active partner in their care. And as a compelled patient advocate, this is my job now.

Advocacy began for me long before I fully understood what it meant. I was 36 when I first found a strange breast lump — an age that doesn’t fit the typical breast cancer profile. In Canada, fewer than 5% of breast cancers cases occur in people under 40. (Canadian Cancer Society). My subtype, triple-negative breast cancer, is rare and aggressive, accounting for only 10–15% of diagnoses (American Cancer Society). It is resistant to hormone therapies which makes it harder to treat, and carries a high risk of recurrence (breastcancer.org). Because I didn’t match the stats — no family history or alarming risk factors — my growing breast lump was brushed off multiple times as something that would likely “go away.” But it didn’t. I had to keep pushing for follow ups and insisting something wasn’t right. Nearly a year passed before I finally received a formal diagnosis. By then the cancer had already spread to my lungs and bones.

This meant that early-stage curative treatment was off the table, and I was suddenly and brusquely deemed as an incurable stage 4 metastatic breast cancer (MBC) patient. With a single scan result I was ripped out of my flirty thirties and thrust into palliative care — a jarring detour in a life still so full of plans. It was disorienting, isolating, and statistically rare: fewer than 5% of breast cancer patients are diagnosed at stage 4 from the outset (Canadian Cancer Society).

Nearly five years later, I’m still here — in a space where only about 32% of MBC patients survive this long (National Breast Cancer Foundation). Thanks to the lucky timing of a clinical trial, I gained access to 50+ cutting-edge therapy treatments over 2 years and had a full response, allowing me to spend my time since with no evidence of disease, while staying off any systemic treatment whatsoever. That path is so rare it isn’t even tracked in Canadian registries. I’m no statistician, but even though I’m not considered “cured,” it’s pretty clear I’ve defied odds that were stacked high against me – proof of both medical progress possibilities and the extraordinary uncertainty of living with metastatic disease.

But, imagine? Being on the shortest of short ends of this kind of sick stick? It’s a complicated form of lucky. I owe great thanks to advancing research and my medical team for getting me here, but there are far more questions than answers at this point, and I need to stay informed. Living on the margins of all the data – where the research runs out and the guidelines no longer apply – is a desolate space. I advocate now for altruistic intentions including awareness and info sharing for others — but also, admittedly, out of self-preservation. I advocate because I’m terrified of being forgotten entirely.

Another doctor takes the mic, gliding through graphs and acronyms, and imposter syndrome pangs hard in my chest. As an English and drama nerd who barely scraped through high school math, “Patient Advocate” is not exactly a title I trained for, especially in this medical conference setting. But there’s no time to spiral, and I continue to brace myself to absorb the nearly 50 presentations over two days. No playback speed. No subtitles. Just charts, jargon, and acronyms that sound adorable until you learn they mean your life expectancy. Medical talk might as well be its own language – and even after years of exposure, I’m far from fluent. I snap photos of slides I’ll decode later, scribble glossaries, and try to keep up as data whizzes by.

A new slide flickers into view: a trial result claiming a seven-month survival advantage for patients on a new therapy. It’s framed as progress, and it is. But I feel my temperature rise. All I see in those numbers are the faces of MBC friends who never qualified for trials like this. Friends who might’ve had more time, had the door opened just a little wider. And those who did qualify – how did they feel during those seven months? What happened next? I want someone to name them, the people who handed over their bodies so this graph could exist. I want someone to say: It got them to that milestone birthday, to their kid’s graduation, to that vacation spot to make lasting memories. It was worth it. But I know better now. I know the nuance. I know not to expect closure at conferences like this. There is still so far to go.

So, I stay quiet and take turns filling my notebook with notes and my plate with the generous catering, stuffing my feelings down with freshly baked churros. Some presentations include interactive case studies. “How would you treat this rare patient?” a slide asks. The room votes like it’s a game show. Watching doctors weigh in on whether a patient, with a case just like the colleague sitting to my left, would be considered for a curative intent or sent home with limited options is sobering, to say the least.

The current of statistics pulls hard and steady, but there are undertows of hope. One presentation charts treatment advancement since 1970, showing that more options for MBC exist today than ever before. It’s validating, but I catch the eye of another fellow advocate waiting to learn what treatment she qualifies for in Ontario. It’s remarkable to witness these rapid advancements in cancer care, but how do we cut through the red tape to get them to the people who need them now? I’m reminded that progress is real, but so is the bureaucracy standing in its way.

We make it to the final session. My brain (and belly) is stuffed, but I’ve been waiting for this one, a panel that speaks my language — Advocacy in Breast Cancer. It features Rethink’s founder, MJ DeCoteau, and powerhouse patient advocate, Aya McMillan. When Aya is asked why she devotes herself to advocacy, she doesn’t hesitate: “I do it to turn my pain into purpose.” It lands like a mic drop to the ribcage.

I glance at Kelly and the others at our table. I wonder if they needed this reminder too. Purpose. There is purpose in us just being here. We’re all outliers: early-onset diagnoses, uncommon subtypes, complicated cases, clinical trial participants. We are the scattered dots outside the slope. The grey spaces between bell curves. The living proof of why patient-centric care must go beyond standard textbooks.

Sharing our stories — in these medical spaces and with each other — does more than acknowledge what we’ve been through. It helps close gaps and pushes research forward. Advocacy isn’t just about surviving; it’s about working together, with our medical teams, to make survivorship better for others as well as ourselves. On my own, I might just be one digit in the data. But when we all show up, we add up. Together we become more than numbers — we become evidence. Even when I don’t know what the exact impact will be, I know showing up matters. And today, we get to do that, alongside professionals who share the same goal: shaping and building a better future for breast cancer care for all involved.

So, while I’ll still need to Google half the acronyms and decode the bar graphs before I can share any key takeaways, I’ll carry something else home with me too, and it’s something no data set can measure – I do belong. We do. Not because we have the answers, but because our stories – as messy, rare, resilient as they are – belong in the bigger picture.

And what a bold and memorable picture it is. Proof that belonging has nothing to do with blazer choices – hey, if it’s not a hospital gown, I’m happy. — Jennifer Pogue