By Sandy Cohen

My story, like many of your patients, is unfortunately not that uncommon: I’m a motherless daughter. I lost my mom to breast cancer when I was 26 years old; she lost her mother to the disease before she graduated high school. The BRCA1 mutation has been passed down in my family, and I, too, carry the mutation. Even though it was expected, I was devastated and desperately looking for resources to help manage my cancer risk. It was scary not knowing where to turn. I needed to know that I wasn’t alone. 

Hereditary cancer survivors and previvors (those at high risk who have not been diagnosed with cancer) have unique information and support needs. We, and our family members, face increased risk of breast, ovarian, and related cancers such as pancreatic, prostate, colon, melanoma, and others. We often develop cancer at younger ages and are in different stages of life compared to people without mutations. Consequently, we may require different cancer screening regimens, timelines, and family planning decisions (see sidebar).

In the United States, we’re fortunate to have a variety of cancer advocacy organizations serving the survivor community. It’s impossible to name them all, but a few stand out. For instance, with about 40 locations across the country and its digital community, the Cancer Support Community provides programs for people diagnosed with cancer, their families, and caretakers. For those who don’t have access to in-person support, Imerman Angels offers a virtual “Mentor Angel” program that partners survivors or caregivers with a peer who has faced the same type of cancer or challenges.

Cancer-specific organizations such as the Young Survival Coalition, Susan G. Komen, and Living Beyond Breast Cancer are excellent sources of support for those with breast cancer. The National Ovarian Cancer Coalition, Ovarian Cancer Research Fund Alliance, and Foundation for Women’s Cancer serve those diagnosed with ovarian or other gynecologic cancers. Sharsheret is specifically dedicated to Jewish women diagnosed with breast cancer or at increased genetic risk for the disease. And FORCE, a national nonprofit specifically for people affected by hereditary cancer syndromes, provides an extensive virtual library of evidence-based information and resources that help people impacted by hereditary cancers make informed decisions.

With these specialized support services, I no longer felt alone. I found an extended family that understood what I was going through.