Deciding to have a mastectomy without actually having breast cancer is not necessarily the radical alternative it might appear to be. An increasing number of high-risk women make the choice to have prophylactic mastectomymany after testing positive for BRCA gene mutations. But the routes to this difficult decision can be quite different.
Sara Daly Roter's mother had breast cancerand so did both of her grandmothers. So three years ago the Manhattanite, then 27, got tested for the BRCA gene mutations. "It was scary for me, but there was no question that I wanted to know," says Roter. "I didn't think too much about ituntil it came back positive."
Roter was reeling when the genetic counselor gave her the news. "It didn't sink in when she was first telling me. She explained that I was at greater risk, that I needed to be screened earlier. She told me there were programs for high-risk women."
Roter set up a meeting with an oncologist to discuss a screening schedulecheck-ups every six monthsbut in the end opted for prophylactic double mastectomy with immediate reconstruction, which she had in July 2007. "For me, the surgery was a no-brainer," she says. "To be tested every six months for the rest of my life; that was too nerve-wracking. I can't live like that. It's just a matter of waiting till it finally shows up, until you're diagnosed with it."
Liz Perri lost her mom to breast cancerher mother was just 39so she got the BRCA test herself when she was 26, in February 2008. The Chicago native decided in advance that if she did have the gene mutations, she'd get a preventative double mastectomy. "If I tested positive, I knew I had to do something," says Perri.
Thankfully, the results came back negative, and Perri was able to shelve the surgery. But because of her family history, she still has a higher-than-average chance of getting breast cancer. That's the main reason she enrolled to be part of a cutting-edge early detection program through the Lynn Sage Comprehensive Breast Center at Northwestern Memorial Hospital in Chicago. The screening regimen involves various combinations of MRIs, mammograms, and ultrasounds every six months.
If you're from a high-risk family and are considering the BRCA test, start by reviewing the pros and cons, then discuss options with your doctor or a genetic counselor.