An anecdote speaks up on breast cancer

In June of 1991, I found a lump in my left breast. I found it in the shower while performing a self-examination of my breasts, following the instructions on the little plastic card that hung from the shower rod. The lump was easy to find. It hurt. I called our family physician.

“Thank God,” he said. “If it hurts, it can’t be breast cancer.”

I didn’t know this was a myth and, obviously, neither did my doctor. Nor did I know that many, many women find their own breast cancers. And so I did not listen to my body, which was trying to tell me something.

Six months later, a friend asked me to speak at a fundraiser for breast cancer research. I said I would, although I didn’t know much about the disease; I’d never covered a story about it, and no one in my family had ever had it, a statement my daughter and granddaughter cannot make.

In preparation for the fundraiser, I began to read about breast cancer, and, wondering about the lump that hurt and therefore could not be cancer, I decided to go for a mammogram after all, something I’d rarely bothered to do because there were all these rumors about the harm of exposing yourself to too many X-rays, and, well, I was lazy to begin with. The mammogram showed a big fat tumor in one breast and a pre-cancerous condition in the other. In February 1992, I lost both my breasts and all my hair. My hair grew back.

I was 47 years old.

Nearly 18 years later, I still consider the trade of my breasts for my life to have been a fair one, and I know I survived in large part because of (relatively) early detection. Put another way: a breast self-examination and a mammogram -- in my 40s.

I am not alone. Many thousands of us will tell you they are alive today because they followed those little self-examination charts, or had routine mammograms, or both -- in their 40s.

Cut to 2009 and the U.S. Preventive Services Task Force, a government appointed entity that, in its new guidelines, tells us that women need not get regular mammograms until they’re 50 and older -- and that those specific self-exam instructions are no longer recommended. Of course they have a study to back this up, a piece of information that always reminds me of the fellow who said Washington will spend $5 million on a study to prove a jackass has three ears, if three ears is what politicians need for a jackass to have. Are these new guidelines a push to ration healthcare in a time of increasingly unsustainable healthcare spending? Only a fool would completely discard such a notion.

Then again, maybe it’s not politics. Maybe it’s just whatever the opposite of common sense is.

I realize that the guidelines aren’t saying pay no attention; I realize that they aren’t proscribing mammograms for all women in their 40s all the time. But I’ve also heard one doctor call routine mammograms for women younger than 50 an “injudicious” use of medical resources. And I’ve heard it said that women are being led to overestimate their risk of dying from cancer.

Perhaps. But too much of that attitude and those guidelines, and I might not have found the lump when I did, I might not have gone for the mammogram, and I would be too dead today to write this. And while I realize mine is purely anecdotal evidence, which doesn’t count to task forces (or insurance companies), if you are the one who gets to live, an anecdote assumes a certain personal relevance.

True, mammography is an incomplete tool, and it is not without its false positives and possible side effects. It is not the test we all want, the one that will detect breast cancer clearly and absolutely. It isn’t a way of preventing breast cancer in the first place. But until that day comes, mammograms are what we have, along with regular visits to our doctor and those now-discounted, silly old self-examinations.

Regarding that, the new guidelines tell us we should merely get to know our bodies in general, so we will know if something’s wrong. OK. Sure. Fine. I shall immediately establish a new, if general, acquaintance with my earlobes, toes, elbows, little fingers and my butt. Especially my butt, which, I’ve noticed, seems to be growing. Should I call my doctor and tell him this?

I know I’ll be called a nasty old feminist (such an unpopular word these days), but one cannot help but wonder -- would we be playing games about the risk/benefit of X-rays and the value of copping a feel on our own lady-things, would we know more about breast cancer, would we have a test for it, maybe even a cure, if breast cancer weren’t primarily a women’s disease?

But how can I be sure of anything? I’m only a 65-year-old anecdote who remains on the right side of the grass.

Linda Ellerbee is chief executive of Lucky Duck Productions, in her 19th year of producing and hosting “Nick News” on the Nickelodeon channel.