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A FORCE FOR CHANGE

FORCEAfter even one meeting, it’s apparent that the grassroots organization Facing Our Risk of Cancer Empowered, also known as FORCE, isn’t your average support group. It might be the laughing, which happens at every meeting, that clues you in, or it might be the bubbly personalities of local chapter founders Sandra Cohen and Rebecca Carr. But most likely, it’s the show and tell.

Oh yes—in a forum dedicated to women dealing with elevated genetic risk of ovarian and breast cancer and tough decisions like whether to have prophylactic mastectomies, show and tell means just what you think it does: women unabashedly flashing their reconstructed breasts.

“Show and tells are incredibly awesome, because until you can actually see what’s been done for other people with surgery, you don’t feel comfortable,” Cohen enthuses. When you’re contemplating a mastectomy, “you think you’re going to be mutated, that you’re going to be a freak. And when you see how beautiful so many women are after surgery, it takes some of the fear away.”

Taking away the fear and replacing it with knowledge is exactly what FORCE is about. This grassroots organization was one of the first to focus on tackling issues faced by women with BRCA1 and BRCA2 genetic mutations. Women with these mutations have up to an 85 percent risk of getting breast cancer, and a 45 percent risk of ovarian cancer. (Only around 10 percent of all breast cancers are genetically linked, but they tend to strike much younger women). FORCE even coined the term “pre-vivor,” to describe women with high genetic risk—and it caught on so fast that TIME named it one of last year’s “Top 10 Buzzwords.”

Cohen and Carr, both of Lafayette Hill, each joined FORCE’s online community about four years ago, when each was dealing with the possibility that she carried the so-called breast cancer gene. Carr had found a lump in her breast when she was 37—it turned out to be stage-three breast cancer. Only later did she learn that she carried the BRCA1 mutation. As for Cohen, she’s a pre-vivor. “I was always surrounded by the disease: my mother had it, my grandmother had it,” she explains. When she finally got tested, she says, “I found out that yes, I have the mutation, but I could actually do something about it. And I decided to do the surgeries: a prophylactic double mastectomy and a hysterectomy.”

Finding others in the same situation, says Carr, “was an incredible source of strength for me. It really was a lifeline for me.” So two years ago, the pair decided they wanted to do more, by starting a FORCE group here in the Philadelphia area. From eight or 10 at their first meeting, they now have more than 100 members across the region.

At the quarterly meetings, they pass around doctors’ and genetic counselors’ names, they discuss non-surgical options such as surveillance, and they share their stories, hopes and fears—for themselves and for their children, to whom they have a 50 percent chance of passing along the mutation. “People are just amazed when they come to the meetings at how easy it is to open up to others in the same situation,” says Cohen. “They’re sharing the most intimate details of their life, and their worries.”

And, of course, they’re sharing the show-and-tells—not to mention the occasional one-on-one flash in a Starbucks bathroom. After all, says Cohen, “That’s what people did for me, and it helped me so much. So if that’s what will help other people, that’s what I’ll do.”

FORCE Philadelphia: 866-288-RISK, ext. 707; facingourrisk.org.


Section: Beauty and WellnessLIFESTYLEPrint EditionsSeptember/October 2008
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