Angelina Jolie’s message was ‘choose what’s right for you,’ and experts agree

Plaudits and praise again poured in for actress Angelina Jolie on Tuesday after she revealed for the second time in the New York Times that she had undergone elective surgery to reduce her cancer risk.

Jolie wrote in an essay that she had surgery to remove her ovaries and fallopian tubes last week, after a blood test indicated she might have early-stage ovarian cancer. Follow-up tests suggested it was a false alarm, Jolie said, but she decided to go forward with the surgery anyway. That decision means she has entered menopause and won’t be able to bear more children.

As Jolie first explained two years ago, she has inherited a version of the BRCA1 gene that puts her at heightened risk of breast and ovarian cancer. Her mother, grandmother and aunt all died of cancer.

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FOR THE RECORD

March 24, 1:02 p.m.: An earlier version of this post reported that only some women carry the BRCA gene. All men and women have the BRCA1 and BRCA2 genes, but only a small percentage of them have a mutation in one of these genes that increases their risk for cancer.

March 24, 5:32 p.m.: An earlier version of this post misspelled the last name of Joy Larsen Haidle, president of the National Society of Genetic Counselors, as Haidel.

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Many women called Jolie “brave” and “inspiring” and a “courageous advocate for women’s health.”

“By speaking out about her increased risk of ovarian cancer, Angelina Jolie has helped shine a spotlight on this deadly disease,” said Calaneet Balas, chief executive of the Ovarian Cancer National Alliance, an advocacy organization. “In addition to being aware of their family history, we hope women will use this moment to learn the symptoms of ovarian cancer so they know the signs to watch for and when to seek medical attention.”

On Tuesday, some medical experts agreed, but cautiously.

“I think Angelina Jolie has been a very responsible communicator,” said Dr. Richard Wender, chief cancer control officer at the American Cancer Society. “I respect her decision to share her health decisions and her health journey.”

Still, Wender said, it is important to reiterate a point Jolie took pains to underscore: that her course of treatment is not for everyone.

“I think it will engender some fear. Some women may think, ‘Well maybe I’m a BRCA carrier and I should get tested,’” Wender said.

A small percentage of those who die from ovarian cancer have the same type of genetic mutation that Jolie has. For a typical woman in the U.S., the lifetime risk of developing ovarian cancer is less than 2%, the ACS says. For those with a mutation in the BRCA1 or BRCA2 gene, that figure jumps to between 35% and 70%.

According to the National Cancer Institute, harmful mutations of the BRCA1 and BRCA2 genes can also increase a woman’s risk of fallopian tube or peritoneal cancer. Men who have the mutations could be at increased risk for breast cancer and prostate cancer, and both men and women with the mutations may have a higher chance of being diagnosed with pancreatic cancer.

And while ovarian cancer is the deadliest reproductive cancer in women, it is rare in comparison to other deadly diseases. Every year, about 21,000 women are expected to be diagnosed with the disease and about 14,000 will die from it, according to the American Cancer Society. In the case of breast cancer, about 230,000 women are diagnosed each year and about 40,000 die from it.

Despite her heightened genetic risk for ovarian cancer, Jolie said her BRCA1 status wasn’t the only factor in her decision. She was always swayed by the fact three of her close relatives had cancer.

“I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this,” Jolie wrote. “A positive BRCA test does not mean a leap to surgery.”

Jolie said she discussed her options with “Eastern and Western doctors,” who advised that surgery was the best choice for her. “The most important thing is to learn about the options and choose what is right for you personally,” Jolie wrote.

Genetic testing to screen for BRCA mutations can be expensive and may not be covered by some health insurance, the American Cancer Society says. It’s recommended only for women who doctors suspect may be carriers because they have a family history of breast or ovarian cancers. Usually, women meet with a genetic counselor or other specialist before getting the test.

“If a family history is loaded with cancer, when we actually talk through one cancer at a time, it may just be a cluster of cancers that happen by chance,” said Joy Larsen Haidle, president of the National Society of Genetic Counselors. Once a woman is tested, Haidle said, it’s important for her to meet with a genetic counselor to ensure the results are properly interpreted and to ensure she understands the full range of options available and how they can affect a woman’s body.

For women who have tested positive for a BRCA1 or BRCA2 mutation and whose family medical history includes multiple cases of cancer, preventive surgery to remove the ovaries is “routine,” Wender points out, and available to nearly all women with health insurance.

“This is the recommended course of action for women who have the mutation,” Wender said. “Complete your child-bearing as early as you can in life and have your ovaries removed.” It may sound drastic, but doctors recommend this because there is no effective screening method to flag early-stage ovarian cancer, Wender said.

Still, experts say the best treatment varies from woman to woman, based on where she is in her lifespan and her individual risk of each cancer.

In her essay, Jolie wrote that doctors recommended she have preventive surgery when she was about 10 years younger than the female relative who had the earliest onset of cancer. Her mother was diagnosed with ovarian cancer at the age of 49; Jolie is 39.

But a young woman who tests positive for a BRCA mutation should not necessarily rush to have her ovaries removed, says Dr. Kala Visvanathan, an oncologist with Johns Hopkins Hospital in Baltimore. Aside from the obvious child-bearing functions, the hormones controlled by the ovaries can protect women from cardiovascular disease, bone loss and cognitive changes, Visvanathan says. Plus, even in women who have the BRCA mutations, the chances of developing ovarian cancer at a young age are much smaller.

“We don’t want to create anxiety or panic among women who either don’t have the BCRA mutation, or do have it and are very young,” she told The Times. “We don’t want women to mistakenly believe they need to do this right away.”

Some women with a BRCA mutation choose to get their ovaries removed but don’t have a preventive double mastectomy, as Jolie did. Instead of removing their healthy breasts, they get annual MRIs to screen for breast cancer.

Still, Wender emphasized, the percentage of women who carry a BRCA mutation is exceedingly low. The figure is believed to be well under 1%, though nobody knows the exact figure because testing is not widespread. And, said Wender, no responsible doctor would offer these preventive surgeries to women who have not tested positive for a BRCA mutation.

Still, Wender says he hopes Jolie’s disclosure can help spark important conversations about family medical histories.

“For all women, the best thing you can do is really get together with your cousins and your aunts and your sisters and make sure everybody really knows the family history,” he said. “There are still people who aren’t as open about cancer or their health as Angelina Jolie has been.”

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