Extreme Breast Cancer Prevention

Extreme Breast Cancer Prevention

The Huffington Post, January 14, 2013

The news that 24-year-old Allyn Rose, Miss District of Columbia in this year’s Miss America competition, is planning to have both of her breasts removed in the near future is the latest case of what we might call “extreme breast cancer prevention.” Rose’s mother died of breast cancer, but she herself has no evidence of the disease — nor do women her age often develop the disease.

Just decades after women with breast cancer fought for and won the right to save their breasts, why is there such a spate of these prophylactic double mastectomies? Do they make sense from a scientific perspective, or are women choosing such surgery due to unwarranted fear and anxiety?

In order to answer these questions, it is helpful to reflect on the history of breast cancer surgery. Well into the 1970s, surgeons routinely performed the disfiguring Halsted radical mastectomy — developed in the late 19th century — on their breast cancer patients. Women lost the cancerous breast, nearby lymph nodes and both chest wall muscles on the side of the cancer. Many felt “mutilated.”

Working with a few iconoclastic surgeons, feminist women — such as journalist and breast cancer patient Rose Kushner — questioned the science behind radical surgery and urged less-aggressive operations. Unfortunately, many of these overwhelmingly male surgeons reacted defensively, calling women who asked for more information “silly and stubborn.” One termed breasts “one of the most dispensable parts of the body.” [1]

Ultimately, randomized controlled trials showed that for localized breast cancers, radical mastectomies were no better at saving lives than operations that merely removed the breast or those that only removed the cancer, providing radiation was later given. What these activist breast cancer patients had achieved was surely a feminist triumph. “I think what I did was the highest level of women’s liberation,” wrote Babette Rosmond. “I said ‘No’ to a group of doctors who told me ‘You must sign this paper, you don’t have to know what it’s all about.'” [2]

But these activists were as much consumerists as feminists, interested in getting women to explore all options and make good choices. Kushner taught herself to read the medical literature and even reviewed grant applications for the National Cancer Institute. This mindset continues today through the National Breast Cancer Coalition’s Project LEAD program, which trains laypeople to sit on scientific review committees.

So women like Allyn Rose, who study factors such as their family history of breast cancer, whether or not they carry a genetic mutation that raises the chance of getting breast cancer and their various screening and treatment options, are following in this same tradition of being a good medical consumer. Rose’s mother, grandmother and great aunt all died of breast cancer. “If there’s something that I can do to be proactive,” Rose said, “it might hurt my body, it might hurt my physical beauty, but I’m going to be alive.” Although prophylactic breast removal cannot remove all of a woman’s breast tissue, studies show that it reduces the chances of developing breast cancer by more than 90 percent.

Coincidentally, two family friends have recently undergone preventive double mastectomies. Amy, who is 40 years old and has a mother who survived breast cancer, chose this option when a mammogram revealed ductal carcinoma in situ (DCIS), abnormal cells that may eventually develop into a cancer. Although Amy was offered minimal surgery and radiation, she was told that the DCIS could still come back. Ultimately deciding that the “factory was broken,” she had both breasts removed and is thrilled with her decision.

Lisa had actually tried twice to have her DCIS removed but, in both instances, some abnormal cells remained. Although she might have had a third procedure and then supplemental radiation, she, too, chose to have both breast removed. She, as well as doctors, believed that additional procedures would have diminishing returns.

It is hard not to applaud the choices of these three women as well as others who thoughtfully choose such drastic surgery to try to save their lives. Women with or at risk of breast cancer are among the savviest patients I see. In contrast to their peers in the 1970s, today’s physicians go overboard in presenting a menu of options to such patients.

Nevertheless, I believe that we should view preventive mastectomy — at least for women without a clear genetic predisposition to breast cancer — as a last-ditch measure. Just because a woman has a family history of breast cancer, it does not mean that she will get breast cancer. It is even less likely that she will die from the disease. Mammography is far from a perfect screening tool, but overall survival from breast cancer is 89 percent at five years, as high as it has ever been.

There is an old expression among surgeons: “Heal with steel.” That often happens. But before operating, we should always make sure that there is really something amiss that needs healing.

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