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Decision-Making in the Midst of Medical Un/Certainty

Evidence and controversy over Contralateral Prophylactic Mastectomy (CPM).

A recent string of articles in the media (and discussions in social media) have considered a particular type of breast cancer treatment called Contralateral Prophylactic Mastectomy (CPM). CPM involves the removal of both the breast where breast cancer cells have been found and the healthy breast on the other side.

While removing a healthy breast reduces the risk of developing cancer in that breast, data suggest that even without surgery the actual risk of such cancer developing is, for most women, very low. A recent study of survival outcomes following CPM found that the absolute (meaning “real” as opposed to “relative”) 20-year survival benefit from CPM was less than 1 percent. If CPM does not significantly reduce breast cancer risk or improve survival, why would someone choose the procedure? Is such a preventive surgery necessary? Does it come with additional risks or considerations, and how are these mitigated? Do women have sufficient information to answer these questions? Where do they get such information, and is it based on solid evidence?

These questions, and others, are important especially because CPM procedures increased 15 percent per year among breast cancer patients in the United States between 1998 and 2008, a 150 percent increase in a 10-year span. This surge has led the American Society of Clinical Oncology and many physicians to refer to CPM as an “epidemic.” While CPM would not be classified as an epidemic from an epidemiological standpoint—epidemics focus on the rapid spread of infectious diseases, not the rise of medicalization – the sizeable increase in CPM does beg the question about whether the procedure represents overtreatment.

When overtreatment enters the picture, public discussion tends to fracture as consumer choice butts heads with emerging evidence, existing protocols, embedded interests, and social forces. So it is with CPM.

A Public Discussion

Image from The New York Times, “The Wrong Approach to Breast Cancer”

An editorial by Peggy Orenstein published in The New York Times explored why women of average breast cancer risk choose Contralateral Prophylactic Mastectomy despite evidence that the surgery does not improve survival among the majority of women who elect to have it.

When I read the article, I sent Peggy an email thanking her for raising such an important question and for exploring some of the push-pull factors involved in medical decision-making, such as the now well-documented overestimation of risk, the underestimation of complications and side effects, the fear of recurrence, the power of “anticipated regret,” the desire for some semblance of peace of mind, the role of physicians in helping or hindering informed decision-making. It was a lot to pack into one article. But it was a start to an important conversation.

Catherine Guthrie quickly wrote a rebuttal of sorts to Orenstein’s piece on Slate that explained her own reasons for choosing CPM. She acknowledged the research that CPM would not significantly increase her chances of survival, explained that her anxiety and concerns about “cancer treatment flashbacks” played a role in her decision, and chose symmetry and a flat chest rather than seeking risky reconstruction.

“Some would call me emotional, ill-informed, and just plain ‘wrong.’ But five years later, it still feels very right.”

I was taken aback by the edgy tone. I saw no disrespect in Orenstein’s article about the rights of women to make their own decisions, but Guthrie felt like Orenstein was judging and “deriding” decisions like hers. Then that word “wrong” hit me like a brick.

The title of Orenstein’s article was indeed unfortunate, “The wrong approach to breast cancer.” Before I started writing op-eds I didn’t know that authors rarely, if ever, have input about the titles of their articles. Someone else often writes a sensationalist headline with the intent of drawing the reader in, and it doesn’t always reflect the content of the piece. In this case, the headline primed the reader to respond to a negative judgment. Clearly, some did.

Beth Gainer honed in on the pejorative title right away in her blog Calling the Shots, “As we in Cancerland know, there’s no right way to do cancer, so how can there be a wrong approach?” The author of the blog The Risky Body wrote, “This morning I saw one woman declare that Orenstein had a lot of nerve telling her to be well informed when she was such a wreck after her diagnosis, that she had a right to put her head in the sand.” In Forbes, Elaine Shattner objected to the alleged obviousness of evidence-based medical decisions:

“The decision isn’t straightforward, as some might suggest. Survival isn’t the only issue. Rather, it’s about the quality of life after breast cancer surgery. Concerns include appearance, worries about developing another cancer and needing surgery yet again, and financial costs of monitoring the other breast and – in approximately 10 percent of cases – future costs of a second operation and additional treatment."

True statements. There is no singular, right way to handle a cancer diagnosis. People do have the right to put their heads in the proverbial sand if they so choose. Survival is not the only consideration. But the issues Orenstein raises point to a nagging fly in the informed decision-making ointment, that there is a body of evidence showing that many women make such decisions based on misinformation.

For instance, a Dana Farber study in which 94 percent of the 123 women aged 40 years or younger who had been diagnosed with cancer in one breast cited “enhanced survival” as a top reason they chose CPM, while simultaneously acknowledging that they knew the procedure would not increase survival. In addition, 98 percent of the women chose CPM to avoid getting breast cancer in the other breast when the researchers found that, and other studies corroborate, most women tend to overestimate their risk of a second cancer.

The “disconnect between what many patients know on an abstract, intellectual level – that CPM has little impact on survival rates for most women – and the choices they make after receiving the anxiety-inducing diagnosis of breast cancer” led the Dana Farber researchers to conclude that risk communication needs to change if the goal is to promote patient-centered, evidence-based decision making. That sounds pretty reasonable to me. In addition, it’s actually good news that women of average risk don’t need to have both breasts removed to improve their survival if they had cancer in only one breast. Treatments have improved enough that it is possible to dial back invasive surgeries, if so desired, without risking survival. Yet there is still discordance as data streams in and women are faced with precarious, life-altering decisions.

Context Matters

I hope this discussion of CPM and other medical interventions will continue, and without the “right/wrong” tenor that regrettably headlined the start of this particular conversation. People rarely make decisions in isolation, insulated from a constellation of stakeholders, implementers, supporters, naysayers, and outside forces that inevitably shape the contexts of our decisions. Breast Cancer Action’s executive director Karuna Jagger strikes this balance on The Huffington Post:

“Women should never be judged, shamed, belittled, or second-guessed for their health decisions… These choices are shaped and constrained by real-world options and circumstances... Every woman deserves access to evidence-based information to inform our choices and decisions, even as we demand far better options.”

Considering what is at stake and for whom -- including the people and institutions with contending points of view -- can help to clarify which decisions make the most sense for each of us within the complex web of our social contexts.

Dr. Gayle Sulik is the author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health. More information is available on her website.

© 2014 Gayle Sulik, PhD ♦ Pink Ribbon Blues on Psychology Today