How Community Was Created for Those Living Metastatic Breast Cancer

Sharon Schlesinger | Oct 15, 2020 | Care, Community

In 2010, a metastatic patient attending a Race for the Cure event in California posted a blog complaining there wasn’t a place for her at the event. She pointed out the lack of attention the metastatic breast cancer (MBC) community received from Susan G. Komen LA County.

It started us questioning the truth of her statement about the lack of focus on metastatic disease, even the lack of understanding of what it was like to live day after day with a disease that couldn’t be cured, the frustration of a patient no one seemed to listen to. Concern about finding a cure, sounding the alarm about the importance of early detection; yes, but little conversation about or attention paid to this segment of the community. That truth was hard to swallow.

We formed an MBC Committee of a few metastatic patients, an oncologist, and some patient advocates. The rest is history: seven physical conferences later, with patients attending from all over California and from across the country, with content live-streamed in five languages, a community has been created for those living with metastatic breast cancer.

Today, Susan G. Komen hosts similar events across the country as part of a new MBC Impact Series.  It reaches men, women and their loved ones to help educate and empower them with information and resources so they can get the best care.

During the month of October alone, Komen is hosting 11 conferences, which are being offered virtually so that the commitment to supporting the patient and their caregivers could continue. In light of COVID-19, Komen created programs that matched patients to clinical trials and provided financial aid for everything from food to childcare, in addition to offering the educational sessions that have become the staple of these conferences.

The truth we faced so many years ago has blossomed into greater funding for metastatic research, a larger focus on understanding the needs of the metastatic community and a renewed dedication to finding a way to stop patients from dying.

Learn more about the MBC Impact Series and events near you at mbc.komen.org.

*Schlesinger is the Chair of the MBC Committee and Chair of Diversity Advocacy for Susan G. Komen LA County.