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Mixing medical evidence with a personal health experience Date: 03/18/14

Karen D. Brown
Karen D. Brown
Photo: Matthew Cavanaugh

By Karen D. Brown

When I was diagnosed with breast cancer following a routine mammogram, my first response definitely wasn’t, “I bet I can get a story out of this.”

Of course, my very first response was not something we can print on a family-friendly website.

But even after I started to gracefully (sort of) accept what I was facing, I wasn’t anxious to write about it. There is a rich literature of illness narratives, and I didn’t feel my own emotional experience was going to add much to what many excellent writers had already contributed to the canon. (See: Barbara Ehrenriech, Joyce Wadler, Peggy Orenstein, to name just a few.) Plus, my own diagnosis – a stage 0 noninvasive cancer called ductal carcinoma in situ (DCIS) – had an excellent prognosis, which thankfully took much of the pathos out of my story.

So I put one medical foot in front of the other, meeting surgeons, anesthesiologists, and oncologists who presented me with a range of treatment options and betting strategies – all of which could reduce the odds of a cancer recurrence, but might not. It was starting to feel a lot more confusing than I had realized when I reported on these statistics over the years as a journalistic observer. (Angelina Jolie had sounded so sanguine in The New York Times about her decision to get a double mastectomy after a genetic test. Why wasn’t I feeling so sure about my decisions?)

Then, shortly after my lumpectomy and before I started radiation, a few news reports caught my eye. There was renewed controversy over routine mammograms, treatment for DCIS, and the U.S. Preventive Services Task Force’s next revision of its mammogram recommendations (shout out to Brenda Goodman’s Covering Health post for pulling it all together).

All of a sudden I realized that my medical odyssey and the health news cycle had crossed orbits. I could write about my personal experience and also shed light on a bigger issue that I felt had not yet been told to death – namely, how hard it is for an individual to make decisions based on population-wide statistics, and politically loaded ones at that.

From that point, the narrative came out easily. Mostly sitting up in bed with my laptop, I described, in as much personal detail as didn’t embarrass me, what I learned, when I learned it, how I learned it. I was careful not to identify my providers by name or location, because I didn’t think it was fair for them to end up in a story without their advance consent, and I also didn’t want to inadvertently endorse any medical institutions that I might cover.

The trickier part was to include the right non-personal medical information to be useful to other women without claiming too much authority. I was wary of doing the kind of story (rightfully criticized, I thought) where, say, a familiar television reporter gets a mammogram, gets a diagnosis, and seemingly proves the life-saving value of early detection. No one woman’s story can prove that point, and I did not want to use my visibility to give more weight to my own personal decisions.

I mostly cited the statistics that my doctors had presented to me – and then double checked those numbers against the research literature – and then re-checked them back with my doctors. In some cases, I wanted to re-cast the statistics to make a point (for instance, one study estimated how many women in a thousand are overtreated after a mammogram; I wanted to compare the likelihood that a mammogram would lead to overtreatment vs prevent a cancer death), so I consulted with a statistician to make sure rejiggering the numbers did not make them inaccurate.

I also emailed a draft of my story, which eventually appeared in The Boston Globe, to some medical researchers who, based on their published writing, might not have approved with all the decisions I had made. I figured they would be in a good position to determine whether my presentation was fair and accurate.

In the end, my commitment to respect myriad treatment approaches – and to pay due respect to the excellent care I felt I received – stopped my piece from making any paradigm-shifting points. (Peggy Orenstein’s story in The New York Times was a lot more pointed in her criticism of widespread screening. I didn’t feel that sure-footed in coming to a conclusion.)

But I do hope it served a few purposes nonetheless – to underscore the need for more personalized decision-making tools in cancer screening and treatment, to describe the wrenching disconnect between population-wide statistics and personal guarantees, and to provide some comfort to other women who share my diagnosis: Namely, if they are anxious about making the right medical decisions, they are not alone.

Karen D. Brown is a radio and print journalist who focuses on health care, mental health, children’s issues and other topics about the human condition. She has been a full-time radio reporter since 1998 for WFCR/New England Public Radio, the NPR affiliate in Amherst, Mass. Her pieces have also aired nationally and she produces radio documentaries.