Actress Angelina Jolie’s willingness to talk about her preventive cancer surgeries raises awareness about genetic risk and options, Seattle medical experts say.
Actress and activist Angelina Jolie won more positive reviews from Seattle cancer experts Tuesday as she revealed that she’d followed up a preventive double mastectomy with removal of her ovaries and fallopian tubes to ward off a high genetic risk of disease.
“Celebrity can be used for a great deal of good,” said Dr. Elizabeth Swisher, a University of Washington Medicine women’s cancer specialist. “I do think Angelina Jolie was able to do that for the need to understand your genetic risk and act proactively about it.”
Jolie, 39, disclosed in a New York Times editorial Tuesday that she went ahead with the additional surgery last week after tests raised new worries. It followed her May 2013 announcement that she’d had a double mastectomy upon learning that she carried a mutation in the BRCA1 gene, which raised her risk of breast cancer by 87 percent and ovarian cancer by 50 percent.
She’d previously lost her mother, grandmother and aunt to cancer.
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That move, widely dubbed the “Angelina effect,” spawned a surge in requests for genetic testing nationwide. BRCA testing rates jumped by nearly 40 percent in the month after Jolie’s 2013 announcement and remained elevated for at least the following year, according to results of a review of a large U.S. health-insurance carrier, published last month by the AARP.
In Seattle, the demand for tests climbed, too. But the bigger effect was on the local conversation about preventive surgery in the face of specific kinds of cancer risk, Swisher said.
“There was an uptick, but to me the bigger impact than the actual volume was the acceptability of making those decisions,” she said.
Only about 1 percent of women inherit the faulty gene known as BRCA1 or the similar BRCA2 gene.
The average woman has a 12 percent risk of developing breast cancer at some point in her life. Women with a BRCA mutation are about five times more likely to get breast cancer.
Women who inherit mutations in the BRCA1 or BRCA2 gene, or mutations in certain other genes, are advised to undergo preventive removal of the ovaries and fallopian tubes after completing childbearing, and to consider prophylactic mastectomies or increased breast-cancer screening, according to the National Cancer Institute.
But the decision to remove breasts often overshadows the conversation about ovaries, said Robyn Andersen, an expert in ovarian-cancer screening at Seattle’s Fred Hutchinson Cancer Research Center. In a study published last year involving about 1,900 Seattle-area women with high-risk family histories, two-thirds knew they should be worried about breast cancer, but three-quarters didn’t know they should be concerned about ovarian cancer, too.
“I think it’s really useful bringing to a lot of women’s attention that ovaries are an important part of what’s happening if you have a BRCA1 mutation,” Andersen said.
Breast cancer is diagnosed in about 230,000 women each year and kills about 40,000, according to the American Cancer Society. Ovarian cancer is diagnosed in about 22,000 women a year, and 14,000 die.
About 85 percent of ovarian-cancer cases are detected at a late stage when disease has spread and prognosis is poor.
Still, Jolie’s decision highlighted issues with ovarian-cancer screening. The actress wrote, under the byline Angelina Jolie Pitt, that she sought surgery after regular monitoring of CA-125, a blood marker for the disease. Though her level of CA-125 was not elevated, Jolie said that there were “a number of inflammatory markers” that may have suggested early cancer.
The CA-125 test is elevated in about 80 percent of later cancers, but it can miss about 50 percent of early cancers, Andersen noted.
“It’s a pretty good test, but it’s not a perfect test,” she said.
Jolie also had an ultrasound and a PET/CT scan. None of the tests showed signs of the disease, but Jolie said she moved forward based on her age and her family history.
“To my relief, I still had the option of removing my ovaries and fallopian tubes and I chose to do it,” she wrote. The surgery propelled her into menopause; she now requires hormone therapy.
That’s actually the recommended action for BRCA-positive women who are done with childbearing and may be approaching menopause, Andersen said.
“Her family history and her known mutation status could have made sense two years ago,” she said. “They certainly made sense in the context of having some biomarker results that had her very concerned.”
Jolie’s decision to once again share her decision publicly resonated with Shelley Gardner, 44, a neonatal intensive-care nurse at the University of Washington who underwent similar surgeries after learning she carried a BRCA1 mutation 10 years ago.
“I’ve never been a big Angelina Jolie fan; I was more of a Jennifer Aniston fan,” Gardner said, referring to the ex-wife of Jolie’s husband, actor Brad Pitt.
But, she added, the public discussions may have nudged some women to reconsider their risk and seek testing.
“I think it’s a good thing,” she said. “It’s probably helped save some lives.”