16 April 2014

Pressure group

Take a guess: what is the leading killer of US women?

The answer is heart disease.

Take another guess: which cancer kills the most US women?

The answer is lung cancer.

Many people, when asked either question, would give "breast cancer" as the answer. And a large reason why is the high visibility of breast cancer. There are prominent fundraisers and charitable foundations. NFL players wear pink uniforms each year to raise breast cancer awareness. Lung cancer, which almost exclusively kills smokers, has much less awareness.

Part of the reason, too, is that there are many more breast cancer survivors than there are lung cancer survivors, because breast cancer is much more survivable. It is the survivors and their family members who raise visibility for their respective disease and raise money for it.

These advocacy groups, in raising awareness, have ended up distorting the public's view of what actually kills people. In an attempt to inform, they misinform.

A group of ovarian cancer survivors came to our school, as part of an event sponsored by an advocacy organization. Students were required to attend. Although I was expecting it to be simply an opportunity for cancer survivors to share their stories, the event instead was intended to show medical students how little we know about ovarian cancer, and to teach us how to diagnose it and treat it. This deviated from how we are usually taught in medical school: usually faculty members lecture us on an organ system or on a set of diseases. In this case, the cancer survivors, who were not doctors, were going to devote the full hour to their one particular disease.

The survivors were highly critical of the medical care they had received from their doctors. They argued that their doctors should have screened them more aggressively, treated them more aggressively, and operated more aggressively. They instructed us what we should do instead, with advice that I found to be ill-informed. They also instructed us to order more CT scans on our patients, and to rely heavily on a blood test (CA125) that is largely useless. They urged us to suspect ovarian cancer in any patient complaining of (vague and common) symptoms like bloating or weight gain, and to suspect patients of any age of having ovarian cancer. One survivor said that antibiotics had helped with her cancer symptoms, and another claimed that the reason she got cancer was because her husband had died a few months before. Another thought she might have caught cancer from her friend.

I was upset that our school arranged for this session. Although the speakers were definitely well-intentioned, they were only able to view clinical practice through the lens of their cancer. The result was that they gave bad clinical advice that probably distorted the clinical judgment of myself and my classmates, who are still early in our careers. Misinformation is a difficult thing to unlearn.

I feel like I have to be wary of advocacy groups, because they only lobby on behalf of a particular constituency. An advocacy group's aim might not align with mine, which is to provide the best care to not just a subset of my patients, but to all of my patients.