I’ve been replying to a query about this on Hartford Courant columnist Susan Campbell’s blog, so am going to put some of my thoughts down here at Knitting Clio as well.  Susan writes:

“Here are the new recommendations. Tell me I’m getting all conspiracy-theorist and I will at least half-listen, but we all know women whose breast cancer was first detected while those women were in their 40s.

And here’s a bit more on the topic.”

In my first reply I wrote:  I ‘m not sure what to think. I recently reviewed a book by historian-physician Robert Aronowitz called Unnatural History: Breast Cancer and American Society which makes a convincing case that advances in screening and diagnosis have not delivered on their promise to improve cancer outcomes (I’ve heard similar arguments made about prostate cancer).  In fact, the  emphasis on yearly mammograms and self-exams is rooted in the medical profession’s view of the breast as a “precancerous organ.”

So, on a population level, the new recommendations about mammograms seem to make sense. On a personal level, though, who wants to get cancer?

Susan later replied, “I haven’t read that book, but have read about that book (not quite the same, is it) and I get that, I think. But why also discourage women from doing self-exams?  I am starting to get all conspiracy theorist about this. I knew I would. I knew this was in my future, but I thought I could hold it together just a few more years. But here’s some information from an organization I respect: http://bcaction.org/index.php?page=mammography-and-new-tech”

My response:

re: the self-exam recommendation — it could be because pre-menopausal women tend to have denser breast tissue, detecting lumps through self-exams isn’t very effective.

Another way of thinking of this is to look at an earlier routine screening recommendation — annual x-rays to detect TB. It later turned out the test was worse than the disease.

Finally, breast cancer is not the most common form of cancer — skin cancer is. Yet there doesn’t seem to be a major industry dedicated to early screening and prevention. Also, the number one killer of women over age 50 is heart disease. Awareness and education about this is starting to catch up, but pales in comparison to the breast cancer industry.

Susan wrote: ” I really don’t want to sound like a crank here, but I know women who’ve had secondary cancers that doctors told them came from the treatment of their earlier breast cancer. There’s a feel of women as guinea pigs here. I know science is evolving, but Jaysus.”

To which I replied, You’re not a crank, Susan — and this isn’t the first time in history women are used for experimental medical treatments (e.g. DES)

In the midst of that exchange, Our Bodies Our Blog posted an entry, “New Mammogram Guidelines are Causing Confusion, But Here’s Why they Make Sense.”  They observe that feminist health groups were ahead of the medical profession on this:   “A number of women’s health organizations, including Our Bodies Ourselves, the National Women’s Health Network and Breast Cancer Action, for years have warned that regular mammograms do not necessarily decrease a women’s risk of death. Premenopausal women in particular are urged to consider the risks and benefits.

In fact, the NWHN issued a position paper in 1993 recommending against screening mammography for pre-menopausal women. It was a very controversial position at the time — even more so than now. The breast cancer advocacy movement was in its infancy and efforts were focused on getting Medicare and insurance companies to cover mammograms. What the NWHN found — and other groups have since concurred — is that the potential harm from screening can outweigh the benefits for premenopausal women.”

Further adding to the confusion is this week’s statement by Department of Health and Human Services Sec. Kathleen Sebelius who advised women and medical professionals to ignore government-issued recommendations.

Yesterday’s edition of “All Things Considered” had several interesting reports on this issue .  The first  story on “All Things Considered” interviewed my colleague at Columbia, Barron Lerner, author of Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth-Century America.

“If you think about finding a cancer in your breast using your fingers, especially one that’s deep in the breast, it’s got to be at least a centimeter in size, maybe even a little larger. We call that early detection, but it’s not early. Most of those cancers, many of those cancers have been there growing for months or years, and we now know, in contrast to when early detection was invented, that a lot of breast cancers spread early on in their course.

So the notion that finding a lump in your breast is truly early, and it’s before the cancer has spread, and therefore, you’re going to save a life doing that doesn’t make the sense that it used to. ”

Two other interesting stories: First, “Breast Cancer Advocates not Buying New Guidelines,”  discusses the outcry against the new guidelines from breast cancer survivors and the Susan G. Komen foundation.  The second story, “Mammogram Wars: Experts feel the Backlash,” features breast cancer surgeon Dr. Susan Love whose reaction was, “It’s about time!”  [see Dr. Love’s blog for a longer version of this]  The reactions on Dr. Love’s blog have ranged from “thank you for having the guts to say this” to “are you crazy?”  The reply that best sums up my thoughts on the subject come from Cassie:  “Sadly indvidual stories don’t constitute science. We already ration care in this country since 20% of all women of child bearing age lack health insurnace. This is as high as 39% for hispanic women so the 5 billion a year spent on unnecessary testing is forcing these women to receive rationed care.

I don’t support pitting one group against another and yes all life is priceless but grow up people. Tons and tons of medical care has nothing to do with outcomes or need. Only 8% of diabetics get the right care for example but there is no outcry to treat them properly.. BTW diabetes account for 35% of all medicare costs but are only 10% of the population. Focus on what works and not what has been marketing to us. Dr Love is ahead of the curve and I for one stand by her.”

Amen, sister!  For more criticism of the “breast cancer industry” see Samantha King’s excellent book, Pink Ribbons, Inc: Breast Cancer and the Politics of Philanthrophy, as well as Barbara Ehrenreich’s personal account of breast cancer — unlike other survivors, Ehrenreich was not thrilled with the “princess treatment” given to cancer patients– she found it nauseating and infantilizing.  She also finds nothing feminist in the sentimental “sisterhood” of breast cancer survivorship.

This is sadly true of the women’s health in general — true feminist voices are overshadowed by the corporate women’s health industry.

Added later:  here’s a story from today’s New York Times, featuring another medical historian from Columbia, Sheila Rothman.  To her comments I would add that the standard of care for breast cancer used to be radical mastectomy.  It took a paradigm shift among surgeons forced by women’s activism to change that.