When Sue Friedman was diagnosed with breast cancer at age 33, she joined the close-knit and supportive community of breast cancer survivors. One year later, a genetic test indicated that she had inherited a BRCA2 genetic mutation which predisposed her to further cancers, forever changing how she viewed her future risk.
"After my diagnosis of cancer, I found many Websites which allowed me to connect with other cancer survivors. When I found out about my genetic mutation, I searched the Internet for others who were facing a hereditary risk of cancer. I couldn’t find a specific forum or support group for this high-risk community.”
“I did manage to connect online with other women at risk of cancer. Those who had not had cancer often told me that they felt uncomfortable seeking support from women who had already been diagnosed," says Friedman.
That's when Friedman started FORCE: Facing Our Risk of Cancer Empowered, a 501(c) 3 nonprofit organization and Website for women at risk for hereditary breast and/or ovarian cancer.
"Many of the women who come to our site have not been diagnosed with cancer but instead have been diagnosed with ‘risk’. They face some of the same fears as cancer survivors, and they undergo similar tests and medical management. Some have even had surgery to lower their risk. Yet these women also face their own unique concerns such as the emotional, medical, and privacy implications which result from having a genetic predisposition to cancer.”
“These women are survivors in every sense of the word. They need a way to identify their common needs and concerns.”
It started as an item on the FORCE main message board. Jordan*, a regular on the FORCE website, posted the challenge: “I need a label!” The term "Cancer Pre-vivor" was chosen as a title to identify those living with risk. Cancer Pre-vivor stands for "survivor of a predisposition to cancer".
Friedman hopes that the label will catch on.
"The general population and the medical community will have a better understanding of our situation. Physicians often misunderstand the medical and psychosocial issues faced by pre-vivors. The “pre-vivor” title can help unify us, while also helping the health-care community recognize that our group has serious and unmet needs."
FORCE has launched its “I’m a cancer pre-vivor” campaign this fall. On Monday nights FORCE will feature a pre-vivor chat. Pre-vivor t-shirts will be available on the website.
You can visit FORCE at www.facingourrisk.org.