The choice actress Angelina Jolie made to have a double mastectomy is increasingly common, at least in the United States, says Lisa Sclafani, a breast cancer surgeon.
Angelina Jolie's decision to have both breasts removed because of a high genetic risk of cancer might be hard for some fans to understand. But doctors, counselors and women who deal with such decisions eve ry day say they understand â€" and admire Jolie for her frankness.
"I'm very grateful to her," says Karen Kramer, 48, of Potomac, Md., vice president of marketing for FORCE, a group representing families affected by cancers linked to BRCA1 and BRCA2 genetic mutations.
She had Jolie's surgery four years ago, after learning she had inherited one of the mutations from her father's side of the family. Kramer, whose paternal grandmother had breast cancer twice before menopause, says the decision to have her own breasts removed "boiled down to what fear was greater. I had no fear of having a mastectomy. I had a greater fear of being diagnosed with cancer. That's how it is for many women."
But Kramer's own sister, Amy Kolodin, 45, of Gaithersburg, Md., got the same test results and made a different decision: She had her ovaries removed, but not her breasts "because it just didn't feel like the right time for me," she says. Instead, she goes for mammograms and MR Is every six months. But she says she thinks about breast-removal surgery "all the time."
She says she's also grateful to Jolie for raising awareness.
It is unclear how many women in Jolie's shoes choose preventative breast removal surgeries. A small study published in 2008, suggested it was just over a third of those in the United States, says Lisa Sclafani, a breast cancer surgeon at Memorial Sloan-Kettering Cancer Center, New York. But, she says, "I believe it is much higher now."
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One reason, she says, is that women are learning they can get better cosmetic results with reconstruction surgery than in the past. The nipple-saving procedure Jolie described in the New York Times "can produce very good results," she says. "It looks nice. For patients, that's a big emotional boon."
Patients who choose surgery often have thought about it long before they are even tested for the gene mutations, Sclafani says. "These women have grown up seeing people in their families stricken with cancer and going through treatment," she says. "They've been through tough times."
Women â€" and men â€" who think they are candidates for genetic testing should first discuss their family histories with their physicians, says Rebecca Nagy, a genetic counselor at Ohio State University and president of the National Society of Genetic Counselors. If testing might be appropriate, the next step is an appointment with a genetic counselor, she says.
Counselors typically ask patients to consider what steps they will take if results are positive, Nagy says. Some women who decide they would not have surgery also decide not to take the tests. They would rather live with uncertainty and frequent, possibly unneeded cancer screenings, she says. "Knowing you are at very high risk for these cancers can be scary," she says.
Jolie's openness may help others who face that news, Nagy says: "She's so well known for her beauty and sexuality. So for her to share that she's had an operation that can change your body and your body image could be very empowering for women."
Jolie's announcement will no doubt "keep genetics counselors busy" for the near future, Sclafani says.
But women should know that final choices, about whether to be tested and how to be treated, always are up to them, says Kara Milliron, a genetics counselor at the University of Michigan, Ann Arbor.
"One of the biggest barriers is that patients feel like we're going to tell them what to do," Milliron said. "We only give them the information. We're not here to sell them something or pressure them into something."
Contributing: Detroit Free Press
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