Why a growing number of women with breast cancer are choosing double mastectomy

Three years ago, Crystal Collum was 37 years old with three kids at home, “kind of just trucking through life” in Columbia, S.C., when she felt a lump on her breast while showering. She didn’t hesitate — she’d watched her best friend go through breast cancer years earlier, and she knew what to do. Within three weeks she was starting chemotherapy.

But soon after, she was confronted with a choice that even she was unprepared for: have a lumpectomy, a targeted surgery that removes only the tumor, or have a double mastectomy — surgery to completely remove both breasts. The decision was an agonizing one.

“I really could not think about anything else. I really couldn’t. It consumed me,” Collum recalled. “There’s so many things during this process that you have no control over, and then the biggest decision of the entire thing is kind of dropped in your lap and you’re like, no, I don’t feel like I should be making this decision.”

After weeks of soul-searching, information-gathering, talking to friends and family, and consulting with her treatment team, Collum finally knew what she wanted: a double mastectomy with reconstruction afterward. She had the surgery, beat her cancer, and has never looked back since.

Collum is not alone in her decision. Over the past two decades, even as cancer treatments have become increasingly targeted and refined, a growing number of women with cancer in one breast are opting to go for the more traditional approach of mastectomy. According to a recent analysis, from 2002 to 2012 the number of U.S. women with invasive cancer in one breast who chose double mastectomy tripled.

And that change is not driven solely, or even primarily, by the so-called “Angelina Jolie effect.” The actress’s preventative removal of both breasts wasn’t made public until 2013.

So scientists and surgeons alike are keenly interested in understanding why women are charting a different course for cancer treatment. And their early answers point to a complex interplay of financial, emotional, and practical considerations that are driving a dramatic change in the way breast cancer is treated.

Treatment trend

Within the surgical world, the push away from lumpectomy and towards double mastectomy is an unusual one. For the most part, technology has led to surgical procedures that are shorter, less invasive, and more precise — for example, a diseased gallbladder once pulled out through one large abdominal incision is now snuck out through four small incisions using a laparoscopic camera and specialized tools.

Breast cancer surgeons, however, are seeing the opposite trend. Dr. Kevin Hughes, a breast cancer surgeon at Massachusetts General Hospital, recalls doing only mastectomies as a surgical resident in the 1980s before switching to lumpectomies during the 1980s and 1990s. Now, he is back to doing more mastectomies again.

“In the last 10 or 15 years, even women who are eligible for lumpectomy instead are asking for a bilateral mastectomy,” he said. “And that is the trend that’s been really been increasing.”

The scientific data back up his experience. Approximately 1 in 8 women with invasive cancer in one breast now get both breasts removed, according to the 2016 analysis, rising to nearly 1 in 4 women when you look at only those under 55. (About half of women under 55 get lumpectomy, and the remaining 29 percent opt for single breast removal.)

Sarah Hawley, a health outcomes researcher at the University of Michigan, broke down the demographics of double mastectomy even further in a recent paper. “It tends to be a procedure that is associated with women who are younger, who are Caucasian, and who are more highly educated compared with their counterparts,” Hawley said.

The trend also seems to be U.S.-specific — Dr. Mehra Golshan, a breast cancer surgeon at Brigham and Women’s Hospital, recently ran a global trial on triple-negative breast cancer that found U.S. women were four times more likely to get a double mastectomy than women in Berlin or Seoul, South Korea.

And yet having a double mastectomy instead of a lumpectomy does not make a woman less likely to die from breast cancer. “From a medical standpoint there’s no data that removing the other breast improves your survival,” said Dr. Judy Boughey, a breast cancer surgeon at Mayo Clinic and one of Collum’s surgeons. “I always make it very clear to patients, I am not medically recommending that you need to have the other breast removed.”

And of course, a double mastectomy is a more grueling surgery. During a lumpectomy, the surgeon removes the cancerous portion of one breast, which, according to Hughes, takes around an hour. The patient often goes home the same day.

A double mastectomy with reconstruction — and most women do opt for reconstruction — on the other hand, takes four to seven hours of surgery and requires at least one more reconstructive surgery at a later date. Recovery can take four to six weeks.

Because it’s a bigger surgery that does not increase survival, many surgeons don’t necessarily think this trend is a positive one. “It’s absolutely not wrong, so it’s absolutely a choice, but I think it’s just being done too frequently in the United States,” Golshan said. “My number one concern is them living, and if I can’t say it’s living longer, then why would I say that they should do it?”

In fact, Boughey was the first author on two 2016 consensus statements by the American Society of Breast Surgeons that drew a similar conclusion. “Essentially as a society, the American Society of Breast Surgeons came down and said for the average risk woman, we should not routinely be doing contralateral prophylactic mastectomy,” Boughey said. One document included a bulleted list of facts about double mastectomy all surgeons should cover with patients considering the procedure.

But surgeons still vary in how they talk about surgical options with their patients. For example, Boughey gives the pros and cons of all possible options, whereas Hughes tends to only discuss double mastectomy as an option if a patient brings it up. Both, however, focus their conversations on understanding what a patient wants and why, and providing accurate information to support her as she makes a decision.

Why opt for a double mastectomy?

If double mastectomy doesn’t improve survival and involves more extensive surgery, then how did the trend start in the first place? There are a number of factors that likely set the stage.

One is cost: According to Boughey, starting in the 1980s, most U.S. insurance companies were required to cover all “symmetrization surgeries” for women who have breast cancer — a category that includes double mastectomy. Then, in 1998, the Women’s Health and Cancer Rights Act started requiring most health plans that cover mastectomy to pay for breast reconstruction. In short, for most women with cancer in one breast, a double mastectomy and reconstruction is covered by insurance.

Breasts are also unique organs in that they’re used for breastfeeding, but otherwise don’t play a vital role in keeping a woman alive. Consequently, it is possible to remove a woman’s healthy breast without having a detrimental effect on her health.

And while a double mastectomy is a bigger surgery that doesn’t increase survival, it also doesn’t decrease survival, and comes with “very acceptable” surgical risk for healthy women, according to Hughes. That means surgeons, even those who think the procedure is happening too often, are willing to perform it if it’s what a patient wants.

There have also been technological advancements in both mastectomy and breast reconstruction. Today, surgeons can often save breast skin and even nipples, allowing women to have more natural-looking reconstructed breasts. And the first stage of reconstruction can now be done in the same surgery as the double mastectomy.

Ultimately, the decision is an intensely personal one, and for many patients, it comes down to emotional well-being. A recent study reported that more than half of women with early-stage cancer in one breast consider double mastectomy, but how strongly a woman considers it depends on her decision-making style and individual values. For example, women who self-identify as logical are less likely to consider double mastectomy, whereas women who want to be more in control of their own treatment decisions are more likely to consider it.

Surgeons say that many women also heavily weigh the experiences of close friends or family members who had breast cancer and their satisfaction with their treatment. Some women also don’t want to deal with continued surveillance such as an annual mammogram, or want to avoid radiation treatment, which is often needed after lumpectomy.

And then there’s the comfort of not having to worry about developing cancer in the other breast, even if it is unlikely — and knowing that they will never have to go through breast cancer again.

“Most of them say they never want to experience this again. And that’s the only way they can never experience it again,” said Hughes. “I can likely screen them, there’s a high probability they won’t have cancer again, if they have cancer, there’s an extremely high probability that we cure them of the next cancer, but it’s not 100 percent and they want 100 percent.”

For Collum, the last reason was the most important one.

“Once I got that diagnosis, my breast ceased to be a part of me. I felt like they were fighting against me and I felt almost disconnected from that part of my body and I just needed it gone,” she recalled. “I wanted to resume living, and I know that I could have done that with a lumpectomy, but me knowing me, I just would have wondered did a cell get missed, is there something still floating in there somewhere. I needed it to be gone.”

“Once I decided, I’m going to have to do this, no matter, because in my gut this is what I feel is best for me and for my family, I felt absolute peace about it,” she recalled. “Once I said out loud, this is what I’m going to do, I never wavered again.”