Ovarian cancer and the Angelina Jolie effect

Angelina Jolie usually grabs public attention for her stunning looks, acting and humanitarian work. But recently Jolie drew intense interest for another reason: she announced in an opinion piece in The New York Times that she had undergone surgery to have her ovaries and fallopian tubes removed because she carries a genetic mutation that increases the risk of ovarian cancer.   

Her decision was a wise one, according to experts, and her public disclosure is expected to raise awareness about ovarian cancer.

Jolie’s genetic mutation in the BRCA1 gene also increases the risk of breast cancer and prompted her to reveal two years ago that she had undergone a double mastectomy.

The BRCA1 and BRCA2 genes cause 5 percent to 10 percent of breast cancers and up to 15 percent of ovarian cancers, according to the National Institutes of Health. Women who have a family history of these cancers are more likely to carry either of the gene mutations. They also have a significantly higher risk of ovarian cancer.

Jolie, 39, fits that profile. Her mother, and an aunt and grandmother all died of cancer.

In an ideal situation, a woman with a high risk of ovarian cancer would be able to have children, as Jolie did, and then have her ovaries and fallopian tubes removed before she reaches the age of natural menopause.

“Current guidelines recommend that women with BRCA mutations consider this surgery between 35 and 40 because having your fallopian tubes removed before menopause reduces the risk for ovarian cancer, and also lowers the risk for breast cancer in high-risk women.  So Angelina Jolie was right in that window,” says Katie Stoll, a genetic counselor with Providence Health and Services.  “And the national guidelines that we follow do recommend the actions she took in her situation.”

But does Angelina Jolie’s decision make sense for all women? Stoll’s advice is to see a genetic counselor. A thorough look at a women’s family history and possibly a genetic blood test will help guide a woman’s choices.

“We know the most about the BRCA1 and BRCA2 mutations. But other genes also are involved in ovarian cancer, and genetic testing isn’t perfect,” Stoll says. “But if we find something, we know exactly where to look for the genetic mutation in other family members to determine who has a higher cancer risk and who does not.”

Ovarian cancer is a stealth disease. Unlike with breast cancer, there is no way to reliably detect ovarian cancer early. Still, experts do not recommend that high-risk women have their ovaries and fallopian tubes removed before age 35, largely because of early menopause and its attendant health concerns.

Jolie said she had been planning to have her ovaries removed for some time.  She came to the decision after consulting with her doctors and reviewing her choices. And she encouraged all high-risk women to do the same, saying, “Knowledge is power.”

Her piece in the Times drew more than 800 responses, many applauding her frank and personal discussion on a potentially scary topic.

Stoll hopes the buzz leads to greater awareness of ovarian cancer. “Angelina Jolie’s disclosure gives people a reference point to start conversations around personalized medicine and the choices women can make,” she says. “The next steps are about prevention.”

Contact your health care provider at Providence for more information about ovarian cancer and genetic counseling.