Count Me Among The Breast Cancer Recurrence Project

Inspiration isn’t hard to find among patients in the cancer world. We run marathons, climb mountains, answer cancer helplines, raise money and often do all this and more while undergoing treatment. Some of us are driven to make change happen in ways that can affect people far beyond ourselves and those nearby. There is an abundance of people, mostly women, with metastatic breast cancer who have single-mindedly put their determination to make change happen into real and effective actions.

When I say I’m inspired by them, I mean inspired in the most literal way—their words and actions cause me to also take action. It’s doing these things that has allowed me to make more sense of being diagnosed with metastatic breast cancer and living with it, so far, for over six years.

I first met Katherine O’Brien, former editor and volunteer with numerous cancer nonprofit organizations such as the Metastatic Breast Cancer Network, a long-time outspoken advocate for change in how the National Cancer Institute (NCI) counts people with metastatic cancer, when she tracked me down because of my writing on this very site. She was hard at work trying to get everyone with metastatic breast cancer counted by the NCI SEER database, a database that collects information on primary cancers and survival but doesn’t track instances of cancer recurrence/progression.

In breast cancer, extrapolation from the SEER data has shown that 20% to 30% of people with early-stage breast cancer will eventually progress to metastatic breast cancer. Counting all these people accurately is important for understanding what is happening in breast cancer, for research, and in the lives of real people. Missing and misidentifying cancer that has moved from “survived” to metastatic is not reasonable in this day of electronic data and healthcare surveillance.

When we met, Katherine talked to me about what was happening with SEER, but it wasn’t until I followed her advice to attend the Living Beyond Breast Cancer annual conference for people with metastatic breast cancer that I truly understood.

As we sat in a large hotel conference room, hundreds of us, Katherine stood on the stage and presented her case and it was enough to get everyone in the room to raise their own “Count Me” sign. Two years earlier, in 2015, she had started an online petition urging the NCI to count breast cancer recurrences. Her early and continued push to get this progress at SEER and other cancer registries was taken up by numerous metastatic breast cancer organizations that furthered the cause through years of talking to legislators and keeping the SEER problem front-and-center.

I’ve written before about why counting cancer recurrence accurately matters. But, like anything that involves the government, data, and health, it won’t happen immediately. This latest effort has been a long time coming. In December 2020, scientists associated with The Breast Cancer Recurrence Project, a pilot program, outlined the initial steps in a presentation (Poster Session 7, poster 07-37) at the San Antonio Breast Cancer Symposium.

In that presentation, the authors write about their long-term goals, “We envision [this] will expand researchers’ ability to formulate risk calculators for cancer patients’ individual risks and contribute to evidence-based recommendations for recurrence prevention strategies.”

For those with metastatic breast cancer initially diagnosed between stage 0 and stage 3, it is a chance to know that you will not be counted among the cured but among those whose cancer care deserves so much more attention.