Breast cancer choices: when the evidence is unclear

Apr 20, 2010 11:41 AM

As a breast cancer survivor, I was relieved to see an item in the newly passed health care bill that specifically discounts the most recent breast cancer screening recommendations issued by the U.S. Preventive Services Task Force. The Task Force Recommendation Statement, issued in November 2009, recommends that women over 50 receive mammography screening every two years. For women under 40, they concluded that there is no evidence to support regular mammography, but that the decision to start screening for these women must be an individual one, taking each patient’s specific health situation into account. Previous recommendations were for women to have annual mammograms beginning at age 40.

These recommendations created a flurry of attention and misunderstanding in the media, and led to considerable controversy. Though the recommendations of the Task Force are a careful summary of the best but still imperfect scientific evidence available, there still are limitations in what we know about breast cancer prevention and screening. Individual women need flexibility in how they use this information to make good choices about their health, and the health care bill allows for this flexibility.

We all wish for certainty, in medical diagnosis and treatment. However, very few things, particularly in medicine, are certain, and maybe it’s time for consumers to face the fact that, even at its best, medical knowledge is incomplete and imprecise, and many decisions are a crap shoot. You have to decide among the risks and benefits of tests, treatments, and doing nothing at all, weighed against your individual values and needs. This can be a painful process because even with a good decision, there is no way of assuring a good outcome.

Individual vs average

My job is to evaluate medical evidence from a statistical point of view to help create Consumer Reports' treatment, hospital, and doctor ratings. When I was making my own decision about breast cancer treatment about 3 years ago, I read dozens of research studies and consulted with quite a few doctors. They all pretty much agreed that the "best" approach was to follow up my lumpectomy with radiation and tamoxifen therapy. But was that the best choice for me?

I consulted the head of breast cancer medicine at one of the top cancer hospitals in the country (fortunately, my insurance covers second opinions—they even paid for my transportation). I told the doctor I knew the overall survival and recurrence rates for women in their 40s with breast cancer. But I wanted to know those rates for women with small tumors and clean margins whose mothers had had breast cancer—that is, what are the likely outcomes for women just like me? While I understood that there were never any guarantees, I also knew that I’m not the "average" woman—I’m just me. What are my odds as an individual?

"You’re not thinking about it in the right way," the doctor said to me. He explained that the treatment recommendations are not about me at all, but "a public health issue, just like why we fluoridate water." The treatment protocol is the best course to follow on average, and I should not question it.

Explaining the odds

Once he left the room, a female oncology resident, who had sat silently through this discussion, let me know that she understood my question. Given the specifics of my case, my health, and family history, she said that there is a very good chance that if I did no treatment at all after my surgery, I would live a long life and eventually die of something else.

But, she said, there's a remote chance (one-in-a-million? one-in-a-billion?) that a single cancer cell had escaped the tumor which had been removed from my breast, and is parked on my liver or brain, or who knows where? There is no way of knowing if it's there, until it makes itself known. I had to decide whether I wanted to take that chance.

The radiation oncologist back at home carefully and completely answered all of my questions. He worded his recommendations as just that, recommendations, not as commands: your options include x or y or z, here are the possible outcomes of each and here is what I think of each option and why.

I will forever be grateful to these two physicians, who gave me exactly the information I needed to make my own informed treatment decisions. I expect the same from all healthcare professionals.

Mammography choices

So, back to the U.S. Preventive Services Task Force recommendations about breast cancer screening. Their statement boils down to this: the available scientific evidence does not support the need for women in their 40s to have annual mammograms nor to conduct monthly self-exams. They did not say that women in their 40s should not do these things, just that the evidence does not indicate that they need to.

Should you do them? That depends on your personal health situation and what is most important to you. The statement in the health care bill that disregards the Task Force recommendations does not negate them—what it does is ensure that women in their 40s and beyond still have the option to have their insurance cover annual mammography screening, if this is what they conclude is right for them. It guarantees women choices.

I started annual mammograms at age 30, when my mother died of breast cancer. Most of these tests were unreadable, since the tissue was too dense at my young age. Did the radiation from 17 annual mammograms, plus a few extras to diagnose occasional anomalies, contribute to or even cause the growth of my tumor? I'll never know. Will the radiation treatment I reluctantly agreed to damage my heart or increase my risk of other cancers? I'll never know. And I will always wonder.

But I am grateful for the few doctors who took the time to help me make my own informed decisions, for health insurance which gave me access to quality treatment and second opinions, all of which gave me the opportunity to make these difficult decisions.

—Abbe Herzig, Ph.D., Statistical Program Leader

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