Angelina Jolie wrote an op-ed two years ago in The New York Times, taking millions of readers on an intimate journey behind her decision to have a preventive double mastectomy. On Tuesday, the actress boldly acknowledged in the Times that she has had surgery to remove her ovaries and fallopian tubes to minimize her cancer risk.
Reactions to her article were swift and generally positive from many in the medical community, as well as from women who, like the actress, have a BRCA gene mutation. Jolie wrote that her mutation carries an 87 percent risk of breast cancer and 50 percent risk of ovarian cancer.
“This is the thing about her being so well known and using her celebrity in such a positive way,” said Anne-Marie Duffy of Natick, a peer-support leader with Facing Our Risk of Cancer Empowered, for women facing hereditary breast or ovarian cancer. “It can be very overwhelming, but when someone else has been through this, there’s a sense of camaraderie and sisterhood.”
As with Jolie, the BRCA mutation runs in Duffy’s family. She announced that she was planning to have a prophylactic double mastectomy the day the Oscar winner came out with her first essay, titled “My Medical Choice,” in 2013.
So many women sought information about genetic counseling after the article, the wave was dubbed the “Angelina Jolie effect.” Previously known for her relationship with Brad Pitt, their six children, and her humanitarian work, she suddenly became a voice for women’s health. Her latest disclosure could have a similar impact.
“Talking about it, and normalizing it, and putting these issues on the table destigmatizes this and is very important,” said Dr. Ursula A. Matulonis, medical director of gynecologic oncology at Dana-Farber Cancer Institute. “Just a few years ago, talking about a BRCA mutation just wasn’t done. You didn’t want to lose your insurance, you didn’t want to worry other family members.”
While gathering as much information as possible is important, experts — and Jolie herself — caution against making hasty medical decisions.
“There may be young women on the edge thinking, ‘I have to get going on this,’ ” said Sharlene Hesse-Biber, a professor of sociology and director of the women’s studies and gender studies program at Boston College, who has spent the past five years interviewing women who are at-risk for a BRCA mutation.
“It could have unintended consequences. [Jolie] got her ovaries and fallopian tubes out, but other women don’t have the same family history.”
Women without a gene mutation like Jolie’s face a much smaller lifetime risk of developing ovarian cancer — only about one in 70 chance. So cancer specialists Tuesday said they do not recommend healthy women have their ovaries removed.
But it is a different and evolving story for a woman’s fallopian tubes. The latest research suggests that for up to 50 percent of women with ovarian cancer, who do not have the BRCA1 mutation, the cancer started in their fallopian tubes, said Dr. Christopher Crum, director of women’s and perinatal pathology at Brigham and Women’s Hospital.
Crum and colleagues a decade ago discovered that cancer cells migrate from the fallopian tubes to the ovaries. The findings helped prompt new recommendations issued in January by the American Congress of Obstetricians and Gynecologists that women undergoing surgery to remove their uterus consider having their fallopian tubes removed, too, to reduce their risk of ovarian cancer.
Jolie did not have her uterus removed because, she said, uterine cancer does not run in her family. That is true of many women with the BRCA1 mutation.
Still much is unknown. Research suggests that removing ovaries and fallopian tubes for patients with Jolie’s type of gene mutation reduces their risk of developing cancer. The question is, by how much?
“Will she get an 80 percent protection? It’s possible. We just don’t know,” Crum said. “These studies haven’t been done yet, but they are in process.”
Removing a younger woman’s ovaries puts her into menopause and can create a host of other health problems, including hot flashes, vaginal dryness, and an increased risk for thinning bones, Matulonis said.
“Life can become miserable,” she said. Jolie is 39.
Doctors sometimes recommend hormones to ease hot flashes and profuse sweating, but studies have shown that long-term use of hormones can increase the risk of certain cancers.
Jolie’s article is silent on her medical costs, and some critics noted that low-income women would not be able to make the health care choices available to a top Hollywood actress.
Physicians recommend that women who have been diagnosed with ovarian cancer get tested to see if they carry the BRCA1 gene mutations. But that can be a challenge.
“Insurance companies sometimes give us a hard time to get the BRCA testing done,” Matulonis said.
Emily Stover, 31, a registered nurse at South End Community Health Center, had mixed feelings about Jolie’s essay.
“I think it’s good in the sense that it brings awareness, but I don’t think she spoke enough about the side effects, medical costs, and hormonal ramifications,” Stover said. “She doesn’t emphasize the important of discussing this with a health care professional and weighing the options of the procedure.”