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Some Women Choose Double Mastectomies to Guard Against Breast Cancer
Women who have had cancer in one breast and have a BRCA mutation, such as Hansen, have a risk of 3 percent per year of developing cancer in the opposite breast, says Todd Tuttle, the lead researcher on the 2007 University of Minnesota study, and the risk is cumulative. That may help explain why younger women are more likely to choose the bilateral procedure than older women. They're looking ahead to 30 or 40 more years of life, and the calculations begin to stack up against them.
However, the risk of developing cancer is a separate question from whether the surgery can extend a patient's life.
Tuttle says that in most cases, a woman receiving a diagnosis of breast cancer has the same chance of "survival" -- defined as living another five years -- whether she has a lumpectomy with radiation or a double mastectomy.
After Tuttle's 2007 study was published, he heard from lots of women about the reasons they had had the surgery and the psychological aftermath. The e-mails ranged from "I did this five years ago and I regret it" to "I knew it wasn't going to affect my breast cancer survival rate, but I wanted my breasts to look symmetrical." Others expressed relief at not expecting to face mammograms or biopsies again.
Cynthia Gilman, a lawyer who lives in Alexandria, initially considered having a lumpectomy after her 2003 breast cancer diagnosis at age 43, but a conversation with her surgeon changed her mind. Gilman had calcifications in both breasts (mineral deposits that may or may not indicate cancer) and dense breast tissue, making detection of new tumors more difficult. Her surgeon told her, "I don't know how I'm going to monitor you."
"I didn't want to live my life not knowing if every little lump or bump was cancer," Gilman says. "I chose not to do that.
Six years down the road, she says she is 100 percent happy with her decision and hasn't regretted it for one second.
At the Johns Hopkins Breast Center, Lillie Shockney has counseled many women with dense breast tissue who opt for a double mastectomy. Despite having regular mammograms, some of them had found on their own a lump that turned out to be cancerous.
"The breast tissue is white, the tumors are white, and we can't find a polar bear in a snowstorm," Shockney says.
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During Hansen's double mastectomy, doctors removed seven lymph nodes under her right arm; one tested positive for cancer. Though the cancer appeared to be gone for 2 1/2 years, she says she never deluded herself into thinking she was safe, partly because of that one lymph node. In 2003, her doctors saw a shadow on a CT scan of one of her lungs. Maybe it's pneumonia, Aulner remembers hoping. But it was the beginning of another tumor.
Aulner, a nursing student who lives in Las Vegas, watched her sister battle cancer a second time. And in 2004 she made an appointment for a BRCA test. She paid about $500 out of her own pocket: If it came back positive, she didn't want her health insurance company to know.