Why Angelina Jolie’s ‘Medical Choice’ Is Likely Not Yours

(Foreign and Commonwealth Office/Flickr)

(Foreign and Commonwealth Office/Flickr)

Angelina Jolie lit up social media Tuesday morning with her announcement that she recently had a preventive double mastectomy. She took this route, she says, because she carries a specific BRCA1 mutation — putting her at an 87 percent risk of developing breast cancer and a 50 percent risk of ovarian cancer. You can read everything about her history in her New York Times piece, “My Medical Choice.”

But the key here is a specific BRCA1 mutation. There are many different mutations that can occur in the BRCA gene. Jolie is very careful to walk through all her personal decisions stemming from her unusually high risk, but emphasizes that “the risk is different in the case of each woman.”

About 10 percent of all breast cancers are due to those many BRCA mutations. Dr. Otis Brawley, chief medical officer with the American Cancer Society, explains in more detail what individual women should consider, in a response to Jolie’s piece:

This does not mean every woman needs a blood test to determine their genetic risk for breast and/or ovarian cancer. What it does mean is women should know their cancer family history and discuss it with their regular provider. If appropriate, they should be referred to and have the opportunity to discuss their risk and their options with a genetic specialist.

Insurance plans created before the passage of the Affordable Care Act are not required to cover the costs of genetic counseling, testing, and any surgery to reduce the risk of breast cancer. Under the Affordable Care Act, new plans are required to cover the costs of counseling and testing for breast cancer risk. There is no such mandate for the coverage of surgery.

A prophylactic (preventive) mastectomy, removing both breasts before cancer is diagnosed, can greatly reduce the risk of breast cancer, by as much as 97%. It does not completely prevent breast cancer because even a very careful surgeon will leave behind a small amount of breast tissue, which can go on to become cancerous.

Women with BRCA mutations associated with a high risk of breast cancer, confirmed by testing, and with a strong family history of breast cancer, a previous breast cancer, and who show signs of certain pre-cancerous conditions are among those who could benefit from the surgery. A woman with a mutation of known significance must consider her quantifiable risk in making the very personal decision to have her breasts and ovaries removed or pursuing other options, such as more extensive screening for breast and ovarian cancer.

Experts recommend women proceed cautiously, and receive a second opinion before deciding to have this surgery. The American Cancer Society Board of Directors has stated that ‘only very strong clinical and/or pathologic indications warrant doing this type of preventive operation.’ Nonetheless, after careful consideration, this might be the right choice for some women.

For some women, yes. But, while mutations in the BRCA genes are fairly rare, the majority of women opting for preventive mastectomy are not at elevated risk, as NPR’s Shots blog notes:

“We found that women who have cancer in one breast overestimate their risk of cancer in the other breast by sixfold,” says Todd Tuttle, chief of surgical oncology at the University of Minnesota. “It’s very exaggerated.” …

Increased awareness of breast cancer due to the ubiquitous pink ribbon campaigns could be fueling the rise in prophylactic mastectomies, some people say. “Women have this exaggerated perceived risk of getting breast cancer,” Tuttle told Shots. “They see breast cancer everywhere.”

There has not been an increase in prophylactic mastectomy in Europe, Tuttle notes, though women there have access to the same surgery and reconstruction. “I wonder if part of the difference is this hyperawareness of breast cancer.”

Berkeley-based journalist Peggy Orenstein took on the hyperawareness of breast cancer in another New York Times venue, its Sunday magazine. Orenstein was first diagnosed with breast cancer 16 years ago. She had a lumpectomy plus radiation, then suffered a recurrence last year. Her only option was mastectomy, which she had on the affected breast. Yet she opted against preventive mastectomy on the other side. From her article:

My first instinct this round was to have my other breast removed as well — I never wanted to go through this again. My oncologist argued against it. The tamoxifen would lower my risk of future disease to that of an average woman, he said. Would an average woman cut off her breasts? I could have preventive surgery if I wanted to, he added, but it would be a psychological decision, not a medical one.

I weighed the options as my hospital date approached. Average risk, after all, is not zero. Could I live with that? Part of me still wanted to extinguish all threat. I have a 9-year-old daughter; I would do anything — I need to do everything — to keep from dying. Yet, if death was the issue, the greatest danger wasn’t my other breast. It is that, despite treatment and a good prognosis, the cancer I’ve already had has metastasized. Preventive mastectomy wouldn’t change that; nor would it entirely eliminate the possibility of new disease, because there’s always some tissue left behind.

What did doing “everything” mean, anyway? There are days when I skip sunscreen. I don’t exercise as much as I should. I haven’t given up aged Gouda despite my latest cholesterol count; I don’t get enough calcium. And, oh, yeah, my house is six blocks from a fault line. Is living with a certain amount of breast-cancer risk really so different? I decided to take my doctor’s advice, to do only what had to be done.

Meanwhile, at Breast Cancer Action, spokeswoman Angela Wall points out that Jolie had access to “all the information she needs.” But in the interest of stating the obvious, that is not the case for every woman.

The genetic test for BRCA mutations is held tightly by Myriad Genetics, so tightly that a case questioning whether human genes are patentable has made it the U.S. Supreme Court. Wall says that laboratories across the country could offer a comparable test for a fraction of the cost — potentially opening up the test to more women — but Myriad will not license it, making its $3,000 test a monopoly.

While Wall is supportive of Jolie’s decision (“This is an impossible decision and women do not make this choice lightly”), she says the answer to breast cancer is not prophylactic mastectomy, it’s prevention.

“It we want to get really serious about preventing breast cancer,” she practically fumed over the phone, “we need to do a lot more than celebrating a woman who has preventive mastectomy. … What about all the other risk factors? The environmental risk factors?” She advocates that what is needed are strong regulations to limit or ban known toxins that cause breast cancer.

Learn more:

Breast Cancer — Do Your Genes Put You At Risk? (Cleveland Clinic)

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  • Eve Harris

    I hypothesize that our pay-for-procedure medical system is another reason American women are having more risk-reducing mastectomies than Europeans. For many women with BRCA mutations, removal of the ovaries can dramatically reduce breast cancer risk *as well as ovarian cancer risk.* This is important, because ovarian cancer is notoriously difficult to detect early. Removing ovaries is far less complicated surgically than mastectomy + reconstruction. Afterward, women get frequent breast imaging and exams until their risk is considered to be reduced (through aging and menopause) to normal.

  • Hailey Andersen

    This piece brings up an interesting point; I do feel we have been made hyper-aware of breast cancer as a nation. I agree with Angela Wall when she says “we need to do a lot more than celebrating a woman who has preventive mastectomy.” Awareness without education is far less valuable than an informed public.