Why Women Are Opting for Mastectomy—Even When Doctors Say They Don't Need To
Some women are willing to give up a lot for peace of mind—even one of their breasts.
Photo: targovcom/iStock
History hasn’t recorded the names of the first women to undergo mastectomy, but we have a good idea of what they went through. In 1894, two surgeons, William Stewart Halsted at Johns Hopkins in Baltimore and Willy Meyer in New York City, each published landmark papers detailing their “radical mastectomies,” in which they removed all of a patient’s breast tissue, the overlying skin, and both pectoralis muscles, as well as all the underarm lymph nodes. The invasive procedure left women disfigured, with permanently restricted movement and chronic pain. The surgeons were saving lives, but those lives would never be the same.
Some doctors tried even more mutilating surgeries, but over time, it became clear that cutting away ever-larger sections of women’s bodies didn’t increase survival. Then in the 1970s, scientists figured out that cancer could spread to other parts of the body even before being discovered in the breast—in which case, simply removing the breast clearly wasn’t the only answer. So began the current era of “breast-conserving treatments,” in which doctors try to shrink tumors and destroy cancer cells via chemo, radiation, and medication, and use less extreme surgical techniques.
After the terrible truth bomb of a breast cancer diagnosis, most women face decisions about treatment options that will likely include some type of surgery—either mastectomy or lumpectomy plus radiation, in which just the tumor and a small amount of surrounding tissue are removed—says Susan Boolbol, MD, chief of the division of breast surgery at Mount Sinai Beth Israel in New York City. Yet despite very similar survival rates between those two procedures, significant numbers of women choose to take the more aggressive path: In 2011, 38 percent of patients eligible for less extensive surgery instead chose mastectomy—up from 34 percent in 1998, according to a JAMA Surgery study.
This raises the question: Why would women choose to give up a breast when they don’t need to? One of the most common reasons, of course, is fear that the cancer will come back. However, the risk of getting cancer again in the same area of the chest is already low. And mastectomy only slightly lowers that risk, compared to lumpectomy plus radiation. This, however, doesn’t seem to matter to some patients. “Unfortunately, there’s a fundamental misunderstanding about the biology of breast cancer that leads some women to believe that having more surgery than necessary will prevent cancer recurring,” says Professor Dame Lesley Fallowfield, director of Sussex Health Outcomes Research & Education in Cancer in the UK.
Fear even compels some women to have the healthy breast removed. This type of procedure is called contralateral prophylactic mastectomy (CPM), and the rate at which it’s being performed more than tripled between 2002 and 2012, according to a study in Annals of Surgery. Then in 2013 came the “Angelina effect,” following Angelina Jolie’s New York Times op-ed about her decision to remove both her breasts before they could develop cancer (bilateral prophylactic mastectomy, or BPM). Her doctors told her she had an 87 percent risk of developing breast cancer because she has a BRCA1 gene mutation; when a woman with a BRCA1 or BRCA2 gene mutation chooses to have BPM, she can reduce her risk of breast cancer by at least 95 percent, according to the National Cancer Institute. After Jolie’s op-ed, the rate of women getting tested for BRCA mutations increased by 64 percent, a Harvard Medical School study found.
But experts worry that too many average-risk women are choosing an aggressive course of action, says Elisa Port, MD, a Breast Cancer Research Foundation investigator and codirector of the Dubin Breast Center at Mount Sinai Hospital in New York City—especially considering that an average-risk woman with cancer in one breast has only about a 0.5 percent risk each year of developing a tumor in the other. In fact, last year the American Society of Breast Surgeons and the American Board of Internal Medicine both came out against routine CPM for patients with cancer in one breast who don’t have certain higher-risk factors such as a BRCA mutation.
After all, despite advances in surgery—and sophisticated reconstruction techniques that can result in beautiful new breasts—mastectomy remains a serious operation that can exact a significant toll, says Veronica Jones, MD, a breast cancer surgeon at City of Hope in Duarte, California. “Some women are left with lasting numbness, weakness, or pain,” says Jones, in addition to the emotional struggles that come from sacrificing a part of their body.
This is why when a woman is reeling from a cancer diagnosis and feels overwhelmed by urgency, her first course of action should probably be taking time to fully assess her situation. “Every patient has different risks, needs, and family circumstances,” says Port. “I tell them that although I’m the expert in cancer, you’re the expert on you.”
Some doctors tried even more mutilating surgeries, but over time, it became clear that cutting away ever-larger sections of women’s bodies didn’t increase survival. Then in the 1970s, scientists figured out that cancer could spread to other parts of the body even before being discovered in the breast—in which case, simply removing the breast clearly wasn’t the only answer. So began the current era of “breast-conserving treatments,” in which doctors try to shrink tumors and destroy cancer cells via chemo, radiation, and medication, and use less extreme surgical techniques.
After the terrible truth bomb of a breast cancer diagnosis, most women face decisions about treatment options that will likely include some type of surgery—either mastectomy or lumpectomy plus radiation, in which just the tumor and a small amount of surrounding tissue are removed—says Susan Boolbol, MD, chief of the division of breast surgery at Mount Sinai Beth Israel in New York City. Yet despite very similar survival rates between those two procedures, significant numbers of women choose to take the more aggressive path: In 2011, 38 percent of patients eligible for less extensive surgery instead chose mastectomy—up from 34 percent in 1998, according to a JAMA Surgery study.
This raises the question: Why would women choose to give up a breast when they don’t need to? One of the most common reasons, of course, is fear that the cancer will come back. However, the risk of getting cancer again in the same area of the chest is already low. And mastectomy only slightly lowers that risk, compared to lumpectomy plus radiation. This, however, doesn’t seem to matter to some patients. “Unfortunately, there’s a fundamental misunderstanding about the biology of breast cancer that leads some women to believe that having more surgery than necessary will prevent cancer recurring,” says Professor Dame Lesley Fallowfield, director of Sussex Health Outcomes Research & Education in Cancer in the UK.
Fear even compels some women to have the healthy breast removed. This type of procedure is called contralateral prophylactic mastectomy (CPM), and the rate at which it’s being performed more than tripled between 2002 and 2012, according to a study in Annals of Surgery. Then in 2013 came the “Angelina effect,” following Angelina Jolie’s New York Times op-ed about her decision to remove both her breasts before they could develop cancer (bilateral prophylactic mastectomy, or BPM). Her doctors told her she had an 87 percent risk of developing breast cancer because she has a BRCA1 gene mutation; when a woman with a BRCA1 or BRCA2 gene mutation chooses to have BPM, she can reduce her risk of breast cancer by at least 95 percent, according to the National Cancer Institute. After Jolie’s op-ed, the rate of women getting tested for BRCA mutations increased by 64 percent, a Harvard Medical School study found.
But experts worry that too many average-risk women are choosing an aggressive course of action, says Elisa Port, MD, a Breast Cancer Research Foundation investigator and codirector of the Dubin Breast Center at Mount Sinai Hospital in New York City—especially considering that an average-risk woman with cancer in one breast has only about a 0.5 percent risk each year of developing a tumor in the other. In fact, last year the American Society of Breast Surgeons and the American Board of Internal Medicine both came out against routine CPM for patients with cancer in one breast who don’t have certain higher-risk factors such as a BRCA mutation.
After all, despite advances in surgery—and sophisticated reconstruction techniques that can result in beautiful new breasts—mastectomy remains a serious operation that can exact a significant toll, says Veronica Jones, MD, a breast cancer surgeon at City of Hope in Duarte, California. “Some women are left with lasting numbness, weakness, or pain,” says Jones, in addition to the emotional struggles that come from sacrificing a part of their body.
This is why when a woman is reeling from a cancer diagnosis and feels overwhelmed by urgency, her first course of action should probably be taking time to fully assess her situation. “Every patient has different risks, needs, and family circumstances,” says Port. “I tell them that although I’m the expert in cancer, you’re the expert on you.”
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