State of Health Blog from KQED News » Mastectomy

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

Lisa Aliferis — Tue, 14 May 2013 19:22:00 +0000

(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)

Study Questions Benefit of Many Double Mastectomies

Lisa Aliferis — Thu, 29 Nov 2012 14:00:10 +0000

By Richard Knox, for NPR and Kaiser Health News

It’s a startling finding: Many women with cancer in one breast are choosing to have their healthy breast removed, too.

But a study being presented later this week says more than three-quarters of women who opt for double mastectomies are not getting any benefit because their risk of cancer developing in the healthy breast is no greater than in women without cancer.

Double mastectomy “does not make sense” for about three-quarters of the women who are choosing the operation.

“People want absolute certainty,” breast surgeon Monica Morrow of Memorial Sloan-Kettering Cancer Center tells NPR’s Shots blog. “Unfortunately, even having a double mastectomy doesn’t provide certainty that breast cancer will not recur. So it’s a false sense of security.”

Morrow is a co-author of a paper that will be presented at the American Society of Clinical Oncology’s Quality Care Symposium in San Diego.

Another co-author, Sarah Hawley, of the University of Michigan, says double mastectomy “does not make sense” for about three-quarters of the women who are choosing the operation “because having a non-affected breast removed will not reduce the risk of recurrence in the affected breast.”

The researchers looked at nearly 1,500 women who had been treated for early-stage breast cancer. Of those who chose mastectomy instead of lumpectomy, nearly 20 percent opted to have both breasts removed.

But of those who chose double mastectomy, three-quarters had no medical justification, Hawley tells NPR.

In fact, many women had a diagnosis of ductal carcinoma in situ or DCIS, considered a so-called stage zero breast cancer — a type many say shouldn’t really be considered cancer at all.

The more radical operation makes medical sense, Hawley says, for fewer than 10 percent of women with early breast cancer. Those include the 1.5 percent who have a genetic mutation called BRCA-1 or BRCA-2 and another 8 percent who have a strong family history, which means two or more immediate relatives who’ve had breast or ovarian cancer.

Double mastectomy rates “have been inching up over the last decade,” Hawley says. There are no guidelines on who should be getting the operation.

When the researchers surveyed women about their choice of therapy, not surprisingly they found the main factor was fear that cancer would “spread” to the healthy breast — even though, Morrow says, “it’s a misunderstanding that cancer spreads from breast to breast.”

“One of the biggest fears when you get a cancer diagnosis is, ‘if I go through this treatment, can I be done, can I go on and live my life and not have to worry about it coming back?’” Hawley says.

“I have seen young women who leave the office having signed up for lumpectomy,” Morrow says, “and they call back the next day and say, ‘Well, I was on the Internet or I was talking to my friends and they said I’m a young mother, don’t I want to do everything I can to be there for my child? I think I want a double mastectomy.’ ”

But there’s a flaw in that approach. “Unfortunately, that’s just fuzzy reasoning.”

There’s another reason cited by many — the belief that a double mastectomy plus breast reconstruction will give a better, more symmetrical cosmetic result.

“We would have thought that concerns about body image would lead women away from double mastectomy,” Hawley says. “But it may be almost the inverse.”

Morrow says there’s no evidence that reconstruction after double mastectomy will lead to a better cosmetic result and there are other ways to achieve symmetry.

She says there’s growing concern among breast cancer specialists about the trend toward double mastectomy.

The evidence, Morrow says, is that the trend is driven by consumers — not surgeons. She finds that ironic.

“I’m old enough to remember the days when surgeons were considered to be horrible mutilators of women when they did one mastectomy, no less two,” Morrow says. It took years of pressure from the then-nascent patients’ rights movement, along with the evidence from controversial research studies, to establish breast-conserving lumpectomy as a valid alternative to mastectomy.

“The two operations really are equal — not just in survival but in the risk of cancer recurrence,” Morrow says. “That wasn’t true 30 years ago. We’ve gotten better at lumpectomy; we understand more about the biology of breast cancer.

“So at a time when we can decrease the intensity of surgical therapy,” she continues, “instead what we’re seeing is patients who want to be ‘safe’ choosing the bigger surgery, even though in fact it’s no safer for them.”