Young Breast Cancer Survivors - Long-Term Side Effects & Advocacy

Writing a piece for BCAM, would love your input. Doing some research, I found out BCAM started in 1985, the same year I was born. This October we’ll both turn 41. In those 41 years, the focus has stayed on screening, early detection, and the acute crisis of diagnosis: chemo, radiation, surgery. What I haven’t seen much of is the after. The decade of OFS and AIs. Sexual dysfunction, vaginal dryness and pain. Joint pain, fatigue. Having to plan your day around a bathroom because of Verzenio. The long tail of recurrence risk. The long term cardiovascular, bone, and brain consequences of years without estrogen. Over the past year I’ve come to really appreciate the need for patient advocacy, and I think the story that needs telling is this: we’re grateful to have a target for our cancer, but the treatment is long, hard, and honestly barbaric. We want endocrine therapy to work better. We also want novel therapies that can kill ER positive cancer cells without a decade of real, lasting consequences for the women taking these drugs. Everyone knows mammograms save lives. Everyone’s heard to do self checks (still a good reminder). Almost nobody knows what surviving actually looks like. I think that’s the story that’s missing. As a younger woman with this disease, I also spent three years fighting for a diagnosis. I was told it was in my head and sent to see a psychiatrist. I compared notes once with a friend my age who had testicular cancer. All he had to say was “my ball hurts” and he was diagnosed within a week. It’s made me wonder: if men were asked to give up their hormones for a decade and watch their penis shrivel and die, would better therapies already exist? Anyway, all that to say, I’d love to hear from other survivors. What would you want highlighted during pink month? Whether we like it or not, October comes every year. I’d love to see it be more patient focused for once.