Who’s choosing preventive mastectomy? Results are surprising, study finds

Higher-income women with private insurance opt for double-mastectomies, despite no long-term survival benefit
Preventive double mastectomy
The rate of women with cancer in one breast opting to have the healthy one removed jumped from 2 percent to 12 percent between 1998 and 2011, a new study found. Here, a patient undergoes a preventive double mastectomy at Sunrise Hospital in Las Vegas. Photo by Rhonda Churchill, Las Vegas Review-Journal / AP

Growing numbers of women diagnosed with cancer in one breast are choosing to remove them both, despite evidence that the double surgery doesn’t boost chances of survival over other options, a large California study finds.

The rate of bilateral mastectomy jumped from 2 percent a year to more than 12 percent between 1998 and 2011, found a review of nearly 190,000 women in the population-based California Cancer Registry diagnosed with first-time breast cancer.

That was significant, but even more startling was the difference in the types of women choosing the most aggressive treatment, said Dr. Scarlett L. Gomez, a research scientist with the Cancer Prevention Institute of California, which conducted the analysis with Stanford University experts.  

“We were surprised that there were distinct subtypes of women having these bilateral mastectomies,” said Gomez, the lead author of the paper published Tuesday in JAMA. The paper combined an analysis of breast cancer treatments with demographic variables.

Women most likely to choose bilateral mastectomies were non-Hispanic white women who lived in high-income neighborhoods, had private medical insurance and were treated at National Cancer Institute centers, the report found.

And many were younger. Among women younger than 40, the rate of preventive mastectomies climbed from 3.6 percent to 33 percent during the 14-year study period.

At the same time, the analysis showed that survival after double mastectomy was no better than lumpectomy or other breast-conserving surgeries plus radiation in the breast with cancer, with mortality for both procedures at about 18 percent after 10 years.

Single mastectomies were actually associated with higher mortality than the less invasive procedures, about 20 percent after a decade, the study found. Those most likely to get unilateral mastectomies included Hispanic and Asian women, those with public insurance including Medicaid and those who received care at hospitals that serve mostly low-income patients.

The results raise questions about the thought processes of women choosing treatment for early-stage breast cancer, Gomez said. Why are women with the most resources choosing the most aggressive options?

“Are they really able to make an informed decision?” she said. “Is it a decision being made based on anxiety and fear rather than objective data?”

Those questions surrounded the high-profile experience of Amy Robach, the Good Morning America correspondent who had an on-air mammogram last year – and discovered she had cancer in one of her breasts. She told People magazine that it didn’t take her long to decide to undergo a double mastectomy, even though a lumpectomy and radiation were options.

“I want to be at my daughters’ graduations. I want to be at their weddings. I want to hold my grandchildren,” People reported.

But Robach was also criticized by breast cancer doctors and other for making a choice not based on science.

The sharp rise in double mastectomies has been documented in other research and it raises concerns about overtreatment, extra cost and the ethics of removing healthy tissue, the authors and other experts say. The operation doesn’t guarantee cancer will never develop and it’s a second major surgery, with all the risks of complications that any surgeries pose.

Still, those worries shouldn’t overshadow the importance of patient choice, said Dr. Julie R. Gralow, a breast cancer expert at the Fred Hutchinson Cancer Research Center in Seattle and the Seattle Cancer Care Alliance.

She said she’s seen an increase in Seattle-area women requesting bilateral mastectomies after finding cancer in one breast. Many of the women are highly educated professionals who understand how to weigh their options.

“They are not making this decision because they are misunderstanding the survival benefit,” Gralow said. “I think the majority don’t want to deal with another biopsy, more chemotherapy. They are busy women and they are OK removing that breast.”

Previous research has found that women seek bilateral mastectomies for many reasons, including the chance to have reconstructive surgery that allows the new breasts to “match,” and because they want the peace of mind that comes with doing everything possible to prevent a future bout of cancer, Gomez said.

One limitation of the new study is that it didn’t include data about women with strong family histories or genetic risks of breast cancer, such as BRCA 1 or BRCA 2 mutations.

It’s likely that women diagnosed with breast cancer younger than 40 likely had some predisposition for the disease, Gralow said. And it’s important to remember that although the rates of bilateral mastectomy jumped sharply in the new study, the numbers were still small. Overall, about 6 percent of women in the study period had double mastectomies, compared with 38.5 percent who had single mastectomies and 55.5 percent who had breast-sparing surgery and radiation.

Still, the decision isn’t easy. In a recent thread in the Advanced Breast Cancer support community on Inspire.com, one woman grappling with the question summarized the debate.

“I’m 40 years old, have three little children and want to beat this disease,” she wrote. “My oncologist tells me the double mastectomy is not necessary. But I just can’t get over the fear.”

The key is to make sure breast cancer patients understand all of their options and then honor the choices they make, Gralow said. 

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JoNel Aleccia is a staff writer at Fred Hutchinson Cancer Research Center. From 2008 to 2014, she was a national health reporter for NBC News and msnbc.com. Prior to that she was a reporter, editor and columnist for more than two decades at newspapers in the Northwest. Reach her at jaleccia@fredhutch.org

Solid tumors, such as those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.

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