After two decades in which breast-conserving surgery was the preferred option for women with early breast cancer, mastectomy rates are on the rise.
This trend, fueled both by fear of a relapse and by advances in surgical reconstruction, has some experts concerned that women aren't paying enough attention to the potential downside.
In a newly published "consensus statement," an expert panel of the American Society of Breast Surgeons noted that more and more women are choosing to remove the entire breast, rather than just the tumor, and often the healthy breast too. The panel agreed that this option "should be discouraged for an average-risk woman" — although each patient's goals and preferences should be taken into account.
According to a recent survey by the federal Agency for Healthcare Research and Quality, the rate of women undergoing mastectomy increased 36 percent from 2005 to 2013, including a more than tripling of double mastectomies. Another study showed that nearly 40 percent of women eligible for lumpectomy, or breast conservation, opt for mastectomy instead.
"We surgeons do try to convince people to save their breasts," said Dr. Nora Jaskowiak, surgical director of the Breast Center at the University of Chicago Medicine. "The outcomes for survival and local recurrence are exactly the same. But there's a constant drumbeat in favor of mastectomy and reconstruction."
Then there's the Angelina Jolie effect, named for the actress who had a bilateral prophylactic mastectomy after learning she had a genetic mutation that predisposes her to breast and ovarian cancer. The blitz of media attention created confusion for many newly diagnosed patients.
Dr. Ben Smith, a radiation oncologist at MD Anderson Cancer Center in Houston, said it's important to distinguish between those at very high risk, like Jolie, and the vast majority of women. For those at average risk, cutting off a healthy breast does nothing to improve survival odds. On the other hand, he said, the risk of complications is twice as high for patients undergoing mastectomy and reconstruction compared with lumpectomy and radiation. And the risk of complications increases with prior breast surgery, obesity, diabetes or smoking.
"Although breast reconstruction after mastectomy can enhance quality of life, it is not a simple process," said Dr. Valerie Lemaine, a plastic surgeon at Mayo Clinic in Rochester, Minn. "It usually takes a minimum of two operations, and it could take more."
Jaskowiak said her team looked at the complication rate for patients undergoing a single mastectomy plus reconstruction and those who had double mastectomies with reconstruction. They found the risk of any complication (such as bleeding or infection) was 28 percent with one side and 41 percent with both sides. The risk of a major complication — one that sent the patient back to the hospital — was 4 percent for a single breast and 14 percent for both.
One small study also suggested a link between post-op complications and cancer recurrence. Researchers in Ireland looked at 229 women who had immediate reconstruction after a breast cancer diagnosis. They found that patients who had fewer complications were also more likely to be alive and cancer-free five years later.
The study doesn't prove that complications cause recurrence of cancer, and several experts said other studies have found no such association. But Jaskowiak noted that wound complications might cause a delay in chemotherapy or other recommended treatment, which could explain the finding.
Dr. Judy Boughey, professor of surgery at Mayo and an author of the consensus statement, said one advantage of mastectomy is that most patients with early breast cancer can avoid radiation, although many centers now do shorter courses that don't require as many trips to the hospital. Another advantage is that women can stop having mammograms and other routine imaging tests — tests that can lead to anxiety-provoking false alarms and biopsies.
"But it's important to understand that, even with a mastectomy, you could develop something that requires a biopsy, and it's not a guarantee you won't have another cancer event in the future," said Dr. Shawna Willey, director of the Breast Health Program at MedStar Georgetown University Hospital in Washington, D.C.
Another downside of mastectomy and reconstruction is permanent numbness, which the experts note can affect not just sexuality but also something as simple as hugging a child.
Dr. Leslie Laufman, a recently retired hematologist/oncologist in Columbus, Ohio, believes not having to get mammograms is enough to tilt the scales in favor of double mastectomy.
"If a woman keeps her breasts," Laufman said, "she'll be held hostage for the rest of her life. She'll have mammograms every six months — sometimes more often — with callbacks for extra views and biopsies, and she'll be terrified every time."
Crystal Collum, 38, of Irmo, S.C., was diagnosed with breast cancer in 2014 and underwent a double mastectomy with immediate reconstruction at Mayo. Collum, who works with special-needs children and has three kids of her own, had chemotherapy and radiation closer to home.
Even with two trips to Minnesota — first for the mastectomies and tissue expander placement, and later for the permanent implants — she said it was "a very seamless process" with no unanticipated complications.
Lauren Miller, 69, a nurse in Chicago, had a far different experience. She was slow to heal, had serious post-operative infections, and her implant had to be replaced three times. In all, she said, she had nine — "count them: nine!" — operations.
Despite the complications, which took over her life for a year, Miller still counts herself among the 90 percent of reconstruction patients who ultimately report they are satisfied with their choice. The only thing she would have done differently, she said, is find a support group.
"I thought I could do it all myself," Miller said, "but you really need a safe place where you can talk about these things."
Dr. Hani Sbitany, director of microsurgical breast reconstruction at the University of California at San Francisco, said it's critically important to choose a medical center that does a large volume of breast surgeries, or at least a specialty-trained surgical oncologist. "Those are the surgeons who get patients the best outcomes and who reduce the complication rates as much as possible."
Any other advice from the experts?
"Breast cancer is not one disease," said Willey. "Patients need to remember that what they have is unique to them, and the recommendations their doctors make are based not just on their tumor type but on all the other factors in their life, including other health conditions and social factors.
"Reading on the internet and talking to friends is good for gathering information," she said, "but in the end each person needs something slightly different."
Judy Peres is a freelance writer.
What patients need to know
The American Society of Breast Surgeons says health providers should give the following information to all patients (except high-risk patients like BRCA carriers) who have cancer in one breast and are considering having their healthy breast removed too. The procedure is called contralateral (opposite breast) prophylactic (preventive) mastectomy, or CPM:
•For most women, the estimated risk of cancer in the opposite breast is 2 to 6 percent over the next 10 years. This means you have a 94–98 percent chance of not getting cancer in your opposite breast over the next 10 years or more.
•CPM is not 100 percent protective against cancer forming in your other breast.
•CPM will not improve your cure rate for your known cancer.
•CPM will not reduce your risk of cancer returning from your known cancer.
•CPM will not reduce your need for other cancer treatments for your known cancer (adjuvant therapy), if indicated.
•The risk of surgical complications at the surgical site (such as bleeding, infection, healing complications and chronic pain) is approximately twice as high when CPM is performed.
•CPM results in permanent numbness of the chest wall (and nipple if preserved).
•CPM with reconstruction will result in an increased number of operations.
•Complications from CPM may delay treatment of your known cancer, including chemotherapy and radiation that may be recommended after surgery.
•CPM may be associated with negative impact on physical, emotional and sexual well-being. Approximately 10 percent of women regret their decision to undergo CPM.
•Breast-feeding will not be possible after CPM.
•Women who undergo CPM will not need mammograms or routine breast imaging for cancer screening after surgery.