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“It is done from a very small incision that often is completely hidden either on the areola or underneath the breast, so you basically see no scars,” she said.
However, even among women for whom a double mastectomy could be potentially life saving, choosing to have this surgery is difficult.
Klugman’s hospital runs a support group for women who have a high genetic risk for breast cancer. These women call themselves “pre-vivors”. She recently had an 82-year-old woman with breast cancer come in for genetic testing because her daughter wanted her to be tested.
“She was positive, but her daughter then declined testing,” Klugman said. “She was too nervous.”
Klugman said she hopes Jolie’s decision to make her surgery public has removed some of the stigma. “A lot of people are afraid to talk about their genetics,” Klugman said.
Deborah Capko, a breast surgeon at Memorial Sloan-Kettering Cancer Center in New York, urges all of her patients who get the surgery to first undergo genetic testing and counseling.
According to the National Cancer Institute, preventive mastectomy can reduce the risk of developing breast cancer in moderate- and high-risk women by 90 percent.
But there is no guarantee that the procedure will completely protect a woman. Breast tissue can sometimes be found in the collarbone or chest wall, for example. And like any surgery, there are is a risk of infection or excessive bleeding.
Myriad Genetics owns the patents for these gene tests, which cost between $3,000 to $4,000 each. Last month, the U.S. Supreme Court took up the issue of whether human DNA can be the subject of a patent and a decision in the case is expected next month. Experts believe a decision against Myriad would help reduce the cost of the tests and increase access.
For women with private insurance, the cost of treatment is usually covered, especially if they test positive for a BRCA mutation. President Barack Obama’s health law made coverage of the BRCA test mandatory as a preventive health service since August 2012. New health plans that will be offered to millions of uninsured Americans in October must also cover the service for free.