Resolve — A Reflection on MBC Advocacy

Notes from the Canadian Breast Cancer Symposium

Conferences and symposiums are a wealth of information for those in the patient advocacy or patient representative space. When fellow advocates share the learning, their breadth of knowledge and understanding amazes me. It rivals the knowledge of some doctors I’ve met on my own path. This is the power of social media and connection. Sure, there’s misinformation out there and sometimes you have to wade through the nonsensical, but there are so many useful nuggets to be explored that help me live as well as possible with this cancer of mine.

The Canadian Breast Cancer Symposium offered a day of information, mostly from trusted physicians and researchers who’ve devoted their careers to understanding and/or treating breast cancer. Some of it was fascinating, some of it very technical, much of it helpful as I added to my basket of understanding one step further. Of all the sessions though, I have to say that the one that resonated through and through was the one that opened the symposium – a panel of three women invited to share their diverse stories about their experience with breast cancer. I held this space two short years ago and I understood the nerves and the planning and the preparation that went on behind the scenes as each one made an impact in their own way to help people care about those diagnosed with breast cancer at all different stages. From the starting gate, these women helped bridge the gap between petrie dish and patient.

It’s reassuring to see others tell their story, particularly in the MBC landscape, understanding the power held by the patient in getting people to care about us and our circumstances. Individuals who understand as well as I do that reminding those brilliant scientific minds of the PERSON behind the caseload and cell line and prognosis chart is what will drive the URGENCY that we seek. These patient advocates can speak to their life experience just as eloquently as I ever did. Maybe more so.

After years in the MBC advocacy space, I must admit to moments of being tired. Sometimes it’s all ‘too much.’. Too much loss. Too much inaction. Too much doubt that anything will change. Those are my not-so-good days, and the feeling doesn’t last, but they linger and gnaw in times of sadness. I know in my heart that my story has moved the needle. I’m not an “influencer” nor have vast amounts of likes and followers. But I plant my seeds and move with resolve, knowing that in the grand scheme of things, it doesn’t matter how big or how small the impact was, just that there was progress. That’s what keeps me trying.

But even with that reassurance, there’s heartache knowing that any progress in treatment options, prognosis or quality of life is so.very.slow. Despite the progress in recent years, talk of MBC is still fairly taboo in settings that integrate all stages of breast cancer patients. You can be truthful, but be wary not to overshare and incite fear, a delicate balance not for the faint of heart. Loved ones and even the general public react more favourably to inspirational posts of those trying to beat their incurable cancer, not necessarily those trying to survive the daily slog of treatment. So, while there’s undoubtedly been progress in some areas, it’s easy to get discouraged because there’s still so much work to be done. Some days are easier than others to find that resolve to keep trying. And it helps to know there are others trying to do the same. — Vesna Zic-Côté, MBC Advisory Board Member