Oct. 15, 2013 -- Angelina Jolie raised global awareness of breast cancer, genetic testing and pre-emptive medical procedures when she revealed her decision to have a double mastectomy five months ago. Now her surgeon says that by going public with her ordeal, the actress has saved lives.
"I'm seeing in my practice already women who are saying, 'I was inspired by that to get gene testing,'" said Dr. Jay Orringer, the Beverly Hills, Calif., surgeon who performed Jolie's breast reconstruction, in an interview with the New York Daily News this past weekend. "I think it's going to have a tremendously lasting impact."
The National Society of Genetic Counselors did indeed notice an immediate "Jolie Effect" as soon as the actress publicly revealed her medical situation.
On the day Jolie's op-ed about her decision and treatment appeared in The New York Times, visits to the society's "Find a Genetic Counselor" online tool jumped by 86 percent, according to the society, and Cancer.gov's Preventive Mastectomy Fact Sheet, which typically receives fewer than 200 page views per day, according to the organization, jumped to more than 69,000 page views.
Dr. Mehra Golshan, director of Breast Surgical Services at the Dana-Farber Cancer Institute and Brigham and Women's Hospital in Boston, said he agreed with Orringer that Jolie's story might help save lives by raising awareness of the disease, but he worries about a downside.
He said his practice had seen a 50 percent increase in requests for genetic counseling, which is positive, he said, but he believes patients sometimes act out of fear or before they have all the information they need to make informed choices.
"We have always gone through a complete family history with our breast cancer patients. The difference is now patients come in saying they want to be tested and meet with a reconstructive surgeon even before they go through an evaluation," Golshan said.
Golshan emphasized the importance of meeting with a genetic counselor to evaluate cancer risk before pushing forward with testing or treatment. He said he didn't recommend testing for people without a family history of breast or ovarian cancer. Because test results aren't always conclusive, they can lead to additional testing and the potential for unnecessary stress and cost, he said.
He also worried that instead of fighting to save their breasts as they did in the past, many women are choosing to remove them at the slightest hint of cancer, even if they don't carry one of the high-risk genetic mutations associated with a sharp increase in breast and ovarian cancer.
"We are now getting requests for contralateral prophylactic mastectomy surgery from patients who don't have a genetic predisposition for breast cancer and who won't necessarily benefit from breast removal," he said.
Women like Jolie, who have inherited a harmful mutation of either the BRACA1 or BRCA2 gene are about five times more likely than average to develop breast cancer, and up to 40 percent more likely to develop ovarian cancer, according to the National Cancer Institute. Experts increasingly believe that removing as much breast tissue as possible can be a lifesaving strategy.
In one recent study that followed nearly 2,500 women who carried one of the two dangerous gene variants, having a double mastectomy did appear to lower their risk of breast cancer. None of the women who opted to have their breasts or ovaries removed were diagnosed with breast cancer in the three decades they were followed, while 7 percent of those who chose not to have surgery were.
Golshan said, however, that only 5 percent to 10 percent of breast cancer patients fall into this high-risk category. For all other women, even those who've had breast cancer, surgery does not increase chances of survival and can lead to avoidable complications and health problems.
Dr. Stephen Grobmyer, the director of the Cleveland Clinic Breast Center, said he believed the Jolie Effect was responsible for the greater number of requests for genetic counseling and testing but not for the rise in pre-emptive mastectomies.
"The increased demand for surgery was not borne out of her editorial, and she was not the first to raise it. We've been talking about it for years," he said.
This appears to be true even for women without a high genetic risk. The Journal of Clinical Oncology reported an 188 percent jump in the surgery between 1998 and 2005 among women given a new diagnosis in one breast of ductal carcinoma in situ, or DCIS, the "stage zero" cancer. Among women with early-stage invasive disease, the rates soared more than 150 percent.
Grobmyer said he thought only good could come from Jolie being so up-front about her medical choices and that it was the responsibility of caregivers to steer their patients toward their own right medical choices.
"The most important thing Jolie has done is open the discussion and helped educate people about their family history of breast cancer," he said. "In that way, she probably is saving lives."
Join Dr. Richard Besser, ABC News' chief health and medical correspondent, for a tweet chat today at 1 p.m., ET on breast cancer prevention, diagnosis, treatment and survival.
While only a fraction of breast-cancer cases are linked to genetic mutations, there are many other risk factors associated with breast cancer, including age, environment and lifestyle. Besser will be joined by experts and those who've survived breast cancer to discuss these risks and what steps you can take to lower your chances of developing the disease.
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