Correction: A previous version misspelled the last name of Mehra Golshan, director of breast surgical services at the Dana-Farber Cancer Institute in Boston. This version has been corrected.
Nearly 25 years ago, the National Cancer Institute declared that women with early-stage breast cancer could be spared mastectomies. The institute acted after studies found that breast removal offered no survival benefits over removing just the lump and following up with radiation treatments.
This caused the pendulum to swing hard away from mastectomies, from a rate of nearly 100 percent in the 1980s for patients with small tumors that had not spread beyond the breast or surrounding lymph nodes to less than 40 percent today.
Now, though, the pendulum is starting to swing back in a surprising way.
Breast surgeons have recently seen a surge in patients with small nonaggressive tumors who opt to have one or both breasts removed (including the one that’s cancer-free) rather than removing just the malignant lump in one, called a lumpectomy.
In a study published recently in the journal JAMA Surgery, researchers from Vanderbilt University Medical Center examined a national surgery database of 1.2 million patients with early-stage breast cancer and found that the percentage of women who opted for a mastectomy over a lumpectomy increased from 34 percent to 38 percent from 2003 to 2011. The rates of women having double mastectomies when they only had disease in one breast jumped from 1.9 percent in 1998 to 11.2 percent in 2011.
Local breast surgeons have seen an even more dramatic shift: In 2003, 22 percent of women with early breast cancer who were treated at MedStar Georgetown University Hospital underwent a mastectomy, compared with 48 percent in 2013.
While studies haven’t focused on the reasons women with early breast cancer are opting to have the breast removed, a half-dozen women who were interviewed about their decision named fear of recurrence as the biggest factor and spoke of the relief they felt afterward. They didn’t want to deal with the anxiety of twice-yearly mammograms and findings that might result in further imaging, biopsies and uncertainty. One of these women, a radiologist, worried that mammograms would miss a subsequent cancer until it had grown large enough to spread. Others said they were concerned that radiation treatments administered after a lumpectomy might cause additional health troubles, since cumulative effects of it can damage the heart, lungs and surrounding bones — and even, rarely, spur new cancers.
“The stigma that was once associated with mastectomy in our mother’s and grandmother’s era has definitely changed,” said Eleni Tousimis, director of the Ourisman Breast Health Center and chief of breast surgery at MedStar Georgetown University Hospital. Instead of needing a giant incision to remove muscle along with breast tissue, surgeons now make a small incision near the bra line to remove just breast tissue, she said, “with reconstruction results that can look similar to breast augmentation.”
She pointed to recent improvements in breast reconstruction techniques — improvements that spare the nipple and areola — and more widespread insurance coverage for the surgery as helping to tip the balance toward mastectomies.
And then there is the growing number of celebrities who have had the operation — and who continue to be outspoken about their decision. No one can dispute that actress Angelina Jolie — who announced last year that she had preventive mastectomies after she was found to carry a breast cancer gene mutation — looks spectacular after her reconstruction surgery, an image that some women may conjure up when weighing their surgical options, said Mehra Golshan, director of breast surgical services at the Dana-Farber Cancer Institute in Boston.
E! talk show host Giuliana Rancic and comedian Wanda Sykes spoke passionately about their decisions to have double mastectomies for early-stage breast cancer; both have said that they felt the more radical surgery gave them a better shot at survival — a notion not proven in clinical trials.
Doctors’ changing attitudes may have also contributed to the pendulum swing. “We had gotten to a point where lumpectomy was the default operation that surgeons more or less dictated to a patient,” said breast surgeon Shawna Willey, vice chairman of clinical affairs in the surgery department of MedStar Georgetown. “Now we offer breast conservation [lumpectomy] as a choice, but not one that is forced down a woman’s throat.”
After being diagnosed with breast cancer last October, Mary Zambri, 50, of Bethesda was told by her doctor that she was the perfect lumpectomy candidate because her tumor was only about an eighth of an inch in diameter. Her mother urged her not to do a mastectomy. Her brother, however, urged her to do it because their father had had breast cancer and been successfully treated with a mastectomy decades earlier.
Although Zambri did not have a gene mutation that predisposes women to breast cancer, she was convinced there was a hereditary component to her cancer that would increase her risk of having another breast tumor. “Sometimes these lumps come back,” she said. “I have four young daughters and wanted peace of mind that I was doing everything I could so my daughters would continue to have a mom.”
After doing an hour of yoga in her home studio, she knew she was going to have a double mastectomy, even though one breast was completely fine. “I made the decision on my own terms and never doubted it for a second. It’s the complete right decision.”
Some experts believe that treating tiny, low-risk tumors with a draconian treatment — recovery can take months, rather than lumpectomy’s days — is a large step backward. “I spend a lot of time with patients discussing the drawbacks of a mastectomy, like the pain of reconstruction, the loss of sensation in their breasts and how the larger surgery won’t prevent any potential spread to their liver or lungs,” Golshan said.
He and other breast surgeons tick off well-worn findings from multiple clinical trials conducted in the 1980s: Regardless of whether a woman with early-stage breast cancer has a mastectomy or a lumpectomy with radiation, she has the same overall survival chances, with no difference in her risk of cancer spread to distant organs. Radiation treatments administered with lumpectomies carry only a slight risk of long-term damage to the surrounding heart, lungs and bones.
While many women assume that a double mastectomy means they’ll never have to worry about breast cancer again, Tousimis emphasizes to her patients that surgeons cannot remove 100 percent of breast tissue during mastectomies since a thin layer of tissue remains attached to the skin. While the risk of developing a new breast tumor after the surgery is remote, it’s not zero, she said.
About 5 to 6 percent of women with lumpectomies eventually develop another breast tumor, compared with 1 to 2 percent of those who have either a single or double mastectomy.
While that difference is considered modest in the medical community, it can loom large for patients calculating the emotional toll that a second round of breast cancer would exact. “A lot of patients base their treatment decision not on statistics but on what their friends with breast cancer have gone through,” Golshan said.
“The anxiety factor comes up a lot in discussing surgical options with patients,” said Bonnie Sun, an assistant professor of surgery at Johns Hopkins School of Medicine. Patients don’t want to have additional biopsies, multiple imaging and multiple surgeries down the road.
Phillipa Hughes, 46, first considered having a lumpectomy 18 months ago, when she was diagnosed with a small breast tumor, but she opted for a double mastectomy with reconstruction after speaking to other breast cancer patients through a support network.
“One woman told me she had three lumpectomies before she threw in the towel to have a mastectomy,” she said. Tousimis, her surgeon, told her that 15 to 20 percent of women who undergo lumpectomies need to have a second surgery within days of the first one to remove more breast tissue after a pathologist finds cancer cells have spread beyond the excised tumor and excised tissue.
Hughes, who lives in Washington, was also put off by the radiation required after a lumpectomy, which seemed, she said, like a horrible part of the treatment. Her age was also a consideration: She foresaw decades of anxiety-ridden mammograms looming before her. “I decided on the mastectomy,” she said, “mostly because I never wanted to have to worry about the possibility of breast cancer again.”
Hughes has no regrets about her year of multiple surgeries needed to first get rid of the cancer and then prepare the breast area for implants, and the painful recuperation. “My breasts look pretty darn good,” she said. “They’re perpetually perky.”
Ann Scharf, a radiologist at Bay Health Medical Center in Dover, Del., said she chose to have a double mastectomy last October because she didn’t want to spend the rest of her life worrying that she had a tumor that wouldn’t be detected on a mammogram; the 54-year-old detected her half-inch tumor on a self-exam soon after her mammogram came back normal.
“My surgeon didn’t present mastectomy to me as an initial option,” Scharf said, “but she didn’t try to talk me out of it.”
Breast surgeons are encouraged by the National Cancer Institute and by groups that accredit cancer centers to offer breast-conserving lumpectomies to all patients with an early stage of the disease. The American College of Surgeons’ National Accreditation Program for Breast Centers asks hospitals that it accredits, including MedStar Georgetown and Scharf’s hospital, to aim to perform lumpectomies in at least 50 percent of patients who are eligible.
Scharf worries that such a benchmark may lead surgeons to pressure patients out of concern that too many mastectomies might put their hospital’s accreditation in jeopardy. But David Winchester, medical director of cancer programs at the American College of Surgeons, said the rate reflects the current national trend. “Our surveyor might intervene if a hospital comes in with an 80 percent mastectomy rate, which we consider extreme,” he said.
Kotz is a freelance reporter based in Silver Spring who regularly writes about consumer health issues.