Has Breast Cancer Activism Gone Too Far?

It is not surprising that a woman with breast cancer has recently inspired the passage of laws across the country mandating clinics to discuss one of the pitfalls of mammography. Breast cancer survivors have been remarkably successful in using personal stories to place important medical issues on the public's radar screen. But we should not assume that such impressive instances of activism necessarily lead to good health policy.

When Nancy M. Cappello began her crusade in 2004 to force doctors to alert patients about the limitations of mammography in visualizing dense breasts, she was standing on the shoulders of many other successful activists. Perhaps the best known is Betty Ford, who as First Lady went public with her diagnosis of breast cancer in 1974.

Although Mrs. Ford's cancer was not diagnosed by mammography, she urged women to get screening mammograms to detect early, possibly more curable disease. At that time, breast cancer was not publicly discussed as it is today, and there were many un-screened women over age 50 who stood to benefit from testing. Indeed, after her announcement, there was actually a "Betty Ford blip" -- a substantial rise in breast cancer cases in the United States.

Another instance of successful activism was the efforts of women who opposed aggressive surgery for breast cancer in the 1970s. Prior to 1970, surgeons treated nearly all breast cancer patients with the identical operation -- radical mastectomy -- in which a woman lost her breast as well as lymph nodes and chest wall muscles on the side of the cancer. It was highly disfiguring.

Building on the efforts of a few renegade physicians who questioned the need for such radical surgery, a series of feminist women with breast cancer began a vocal public campaign telling patients they had the "right to choose" among available treatments.

Many surgeons reacted very negatively to this effort, ridiculing women who attempted to engage in discussions about therapeutic options. One called a woman who asked for extra time to make her decision "very silly and stubborn" and petulantly told her she could be dead in a few weeks [1].

Eventually, in 1979, Massachusetts became the first state to pass an "informed consent" law mandating that physicians alert breast cancer patients about all possible therapies. Eventually, 15 other states followed suit. In that historical period, before the rise of patients' rights and the Internet, it was a reasonable way to make sure that breast cancer patients knew their options.

But times have changed. Mammography is now ubiquitous, advocated on billboards and in breast cancer rallies across the country. We know that it is a useful screening test for women 50 and over but not very valuable for younger women. We also know that it is harder for radiologists to see cancers on mammograms if a woman's breasts are dense.

This is what so frustrated Ms. Cappello. She underwent a routine mammogram and was told that it was negative. And when she was later found to have advanced breast cancer, doctors were still unable to see the original lesion on her mammogram.

In 2009, Ms. Cappello got her home state, Connecticut, to pass a law mandating clinics to inform patients with dense breasts that mammograms may not be effective and that they should ask about other screening tests, such as ultrasounds and MRI scans. Four other states have passed similar laws, and Congress is considering a federal law.

I am all for better informed consent. I discuss the advantages and limitations of mammography with all of my eligible patients. But passing laws to dictate what I should and should not say is not a good way to encourage better medical practice. This is especially true in this case because the additional tests that the new laws suggest are of unproven value in lowering the death rate from breast cancer. They are also expensive in an era of out-of-control health care costs. It is hard to imagine a federal law forcing me to discuss specific options with my diabetes or hypertension patients, and that is a good thing.

Ms. Cappello's story is compelling. She is one of a long history of breast cancer activists who have challenged the status quo. But in my opinion, using individual cases to dictate health policy is a dangerous precedent.

Rather, we should encourage -- and incentivize -- health care providers to discuss the latest scientific findings with their patients as a way to arrive at safe and effective clinical decisions.

Reference:

1. Barron H. Lerner, The Breast Cancer Wars, p. 153.

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