Anecdotal Bombshells

A funny thing happened on my way to writing this column, the first in a series dedicated to observing the world of cancer advocacy. I had what I thought would be an excellent example of advocacy at its near worst—an organization undercutting the best interests of its constituency to make a political point. I had planned to show there were good and bad aspects to advocacy. I had remembered the incident vividly—as seen on ABC's “World News Tonight” one evening in the early 1990s. I recalled a breast cancer survivor named Jill Sigal testifying before Representative John D. Dingell's congressional hearing investigating the controversy that had erupted over the fraudulent data discovered at a hospital in Montreal. This clinical trials “scandal” subsequently called into question the efficacy of the National Surgical Adjuvant Breast and Bowel Project's (NASBP) long-time (and landmark) breast cancer lumpectomy and radiation study. I remembered Jill Sigal saying, “How many women must now wonder, as I do every day, if they will die because they may have made the wrong decision?” I remembered my concern that her testimony would cause many breast cancer survivors who had had the same breast-conserving procedure to start worrying if they too had made a fatal error in opting for this treatment. And I grew equally concerned that women then facing treatment decisions might select mastectomies—despite the reality that, despite any controversial data, most oncologists would still have recommended lumpectomy and radiation if an individual patient had a medical choice. I reacted in horror to that anecdotal bombshell, which seemed to be picked up by every major media outlet and to have left an indelible impression in many more minds than mine. But, in my mind, I also attributed the comments as representative of a certain breast cancer advocacy group, because I saw that group's founder juxtaposed over Sigal's shoulder during the broadcast. And I wasn't the only one who had arrived at that conclusion. For years I carried around the notion that the comments were encouraged by an advocacy organization to make a political point at the expense of its constituents' peace of mind—and I had planned to use this incident to make just such an observational point in this column. But that was not to happen because while fact-checking my information, I learned that my basic assumption was wrong. Sigal was not a member of any specific advocacy group. I have since heard various suggestions as to why she was testifying that day, but apparently it was not on behalf of a breast cancer advocacy group. Such incidents and assumptions, however, don't occur in vacuums. There was a context and there were reasons for assuming there may have been “oncopolitical” motives behind the testimony. Those were the relatively early days of cancer advocacy, and the differences between advocates and activists had not yet been fully differentiated. In those days, to some people, the means may have justified the end. Advocacy was a bit more radical—more activist, more militant—before it began settling into mainstream acceptability. The reasons for making those assumptions were not sound. They were not based on scientific evidence…or hard facts. They were based on what I “thought” was the truth—what I wanted to think was the truth. Fortunately, nothing serious happened with my “anecdotal” thinking. There may indeed be instances of advocates going too far to make a point, but I can't think of any right now. I could have begun searching for other occurrences to make my point, but that's just the point of this now-revised column—that responsible advocacy, journalism, science, and medicine should not be looking for anecdotes to prove hypotheses. They should be seeking truth…solutions…changes…treatments…cures…based on facts, on what would best serve the public. Advocacy Has Arrived I think I would be less ready to draw such erroneous conclusions about advocates today, since advocacy has arrived and advocates are enjoying considerable attention, access, and inclusion. They've been courted by cancer organizations and societies, funded by industry, and recognized by government and the media. They—like their fellow players in the now more-level playing field of cancer research, treatment, and politics—are judged according to their credibility, veracity, and responsibility. Advocates are important partners in the overall campaign against cancer. Advocates as well as individuals, the media, science, medicine, industry, and government have all had their good and bad moments. What's most important is that we recognize when we make mistakes, own up to them, and try to do better the next time. Future columns will explore the role of advocacy in the world of cancer—including research, prevention, treatment, education, support, survivorship, politics, and communications. We will look at what motivates advocates and the advocacy movement, and what role advocacy may play in the future as it continues to evolve as a significant player on the oncologic landscape. Survey: Mammogram Debate Confuses Women Recent news reports about the debate over the value of mammography have undermined confidence in the screening technique and created confusion about its efficacy, a new survey suggests. One in four women has heard mammograms are unreliable, the survey found, while 13% of respondents do not think mammograms are necessary. The American Cancer Society and most physicians continue to recommend an annual mammogram for all women beginning at age 40. The survey, sponsored by the Avon Foundation, also found that although women are more likely to believe [falsely] that they are more likely to get breast cancer than have heart disease, most are more likely to discuss other health concerns with their physicians. Conduced by KRC Research, the survey was completed by 1,002 women ages 25 to 65 chosen by random digit dialing last July. Other findings: Uninsured, less affluent women are least likely to have had a mammogram. The majority of women who have not undergone mammography cite age as their main reason. Others indicated they are too busy or do not think it is necessary. 68% said that spending time with their family or friends is more important than improving their own health by eating a balanced diet, reducing stress, or exercising. Accessibility and affordability of health care is a greater concern than quality of care, which most women find to be “good” or “excellent.”

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