Today is Thanksgiving Day in Canada, when we eat a lot and hopefully find some time to pause, reflect and feel grateful. It’s also Metastatic Breast Cancer (MBC) Awareness Day. And for people living with MBC, gratitude can be a little complicated.
For many in the MBC community, there’s gratitude for stable scans, for making more milestones than they ever dreamed possible when first diagnosed, for another year of gathering with loved ones for turkey and pumpkin pie. But we also know that not everyone with MBC is living longer. We’ve had a wave of loss once again, including Clare Li from our Make Me Count campaign who lived just over 4 years with MBC. We know many are currently receiving news of progression and wondering what’s next. I was supposed to be teaming up with an MBC advocate from Europe in a few weeks to share the stage at a conference. She jokingly self-identified as “a dinosaur” because of her years of stability. But she’s just had to bow out of our engagement because of progression. It’s devastating. And I hate to play into cliché by admitting how shocked I was by her news. But I was. Because she didn’t “look sick” on the briefing Zoom a couple weeks earlier—energetic, cool, funny, had just come from travelling to attend a live performance by her favourite 80s band.
And that’s MBC. It can be an invisible illness.
That contrast between what’s visible and what’s hidden is exactly what inspired this year’s theme: The MBC Iceberg.
On the surface, the public often sees progress, especially in Breast Cancer Awareness Month, which is filled with fundraising events, pink ribbons, stories of survival. And yes, there’s so much progress to be grateful for, including on MBC issues. Just days ago, the Ontario Government announced the FAST program, a direct response to advocacy from our community and our Break Through the Bullsht* campaign. This new pilot will fast-track access to innovative cancer drugs and could help cancer patients get life-saving treatments nearly a year sooner. We celebrate this as an important advocacy win for the MBC community.
But below the surface, there’s still so much work to do.
We don’t understand why some respond so well to treatment while others with the same subtype progress quite quickly. We still don’t even know how many people are currently living with MBC in Canada. Through our Make Me Count initiative and the work we are doing on the ground in Canada and with global partners and the ABC Global Alliance, we’re pushing for better MBC data and visibility. Because we can’t fix what we can’t see. While new treatments mean that people with MBC are living longer—on average five years instead of two or three—they continue to face complex health challenges. They need higher levels of support. Specialist care. But if we’re not accurately counting them, our cancer care systems can’t properly plan for their treatment and support.
Why do people with MBC need more support? Because on-going treatment means on-going, cumulative side-effects. Even if they don’t necessarily “look that sick.” So, as more people are living longer with MBC, the growing community is also navigating the invisible weight that comes with it: constant appointments, side effects, fatigue, fear of progression, and the emotional work of holding on to their new normal.
It’s all part of the MBC iceberg — what the world sees above the water, and everything it misses below. The invisible pain. The invisible financial costs. The invisible work.
This year, we want to shine a light on what’s happening below the surface for those living with MBC.
On our Instagram Stories, we’ve posted an MBC Iceberg template so those living with MBC can share their truth, telling us what’s visible on the surface and what isn’t. For those living with MBC, it’s a way to show your truth and tell us what’s visible on the surface and what isn’t.
For allies, it’s an invitation to look closer. To understand that MBC isn’t one thing. To see that it’s many, many things, each story with its own depth and complexity. And to understand why an accurate “counting” of the number of people living longer with MBC matters is essential to ensuring better outcomes, including both living longer and living well longer.
So, this Metastatic Breast Cancer Awareness Day, my gratitude goes to everyone who keeps pushing for visibility — those living with MBC, their families, their care teams, and the advocates who refuse to let these stories stay hidden.
When we finally see all that lies beneath the surface, we can begin to change it.
MJ DeCoteau
Founder + Executive Director
Rethink Breast Cancer