Monday, April 29, 2013

Peggy Orenstein: When a Disease Becomes a Cause

Peggy Orenstein has written the article Mad Dog would like to have written, but thought it was too politically incorrect.

For readers of Mad Dog Democrat, the idea anything is too politically incorrect for Mad Dog may come as a surprise, but this topic is so incendiary and requires such tact, Mad Dog knew it was simply beyond his talents.

The problem here is: Is anyone rooting for breast cancer? Does anyone not wish to see an end to breast cancer? So any time you question or undermine the efforts of a group which is trying to end breast cancer deaths, you have to tread lightly, something Mad Dog has not mastered.

Ms. Orenstein writes an article which embraces the complexities and the successes and the lack of successes in a very adroit way.

The problems with the Susan Komen organization and others like it is they are focused on raising awareness of breast cancer, on the psychological impact, on making breast cancer socially acceptable to talk about, to acknowledge you've had, but at some point we all really have to accept, okay, mission accomplished when it comes to marketing and name recognition and attitude change: What we really need now is some good, effective science and technology.

Breast cancer, as she points out is not even one disease. There are different types of breast cancer (estrogen receptor positive, estrogen receptor negative, Herc positive, triple negative--the list expands as molecular genetics identifies new types.) There is even a pre-breast cancer which may or may not ever develop into breast cancer, DCIS.

As Ms. Orenstein points out, delicately, women almost never die of breast cancer which is confined to the breast; what they die from is metastatic breast cancer, i.e. breast cancer which escapes the breasts and implants in liver, brain, bone, lung and elswhere, seedlings in the wind, taking root, becoming the ultimate invasive species. 

The big problem is this process may occur before there are enough breast cancer cells to see on mammography, so even if you remove the breast cancer you find by imaging, by mammogram, ultrasound, MRI, you may still be dealing with a mortal illness--you just won't know it for some years.

When Mad Dog was an intern at Memorial Sloan Kettering, he admitted dozens of patients every week who told the same story: "They told me they got it in time. It was so small. I was cured."  But here they were, 10 or 15 years later with breast cancer growing in vertebrae, femurs, ribs, lungs, liver, brain and all stops in between. Dying of a disease the doctors thought they had cured.

It was this realization, that microscopic, invisible tumor cells escape early and may be growing in distant sites which moved the researchers in Milan, Italy to try chemotherapy to flow in the blood and kill the invisible metastases at the time of the original breast surgery and that study was done in the early 1970's. American doctors came later to accept this concept and now protocols include chemotherapy to get those sleeper cells.  

But chemotherapy does not kill every cell in every patient and patients are still dying from widely metastatic disease despite all the protocols, years later.

And mammography may not have made much of a dent in this process. 
But when various scientific groups, recognizing the futility of screening mammography for various groups of patients--e.g. women less than 40--have recommended mammography start later and not be used annually all hell breaks lose because breast cancer organizations--who have a stake, financially, professionally and emotionally--oppose these recommendations, not because the science is flawed but because they have other motivations.

Consider this example, which Orenstein quotes:  Suppose you have 100 women who have a mammograms at age 67, are found to have breast cancer and treated but they all die 3 years later at age 70.  The 5 year survival in that group is 0%. Suppose now, you have 100 64 year old women who have a mammograms and gets treated but the treatment doesn't work and they all die 6 years later at age 70 The 5 year survival for these women  is 100%. Looks like a great victory for mammography: You've improved 5 year survival by 100%!  But what have you really done? You've made the women in the first group aware they have cancer three years earlier and they've had to live with that knowledge but they have not lived a day longer for it.

The fact is, funding for research is competitive: If the National Institutes of Health funds breast cancer at $100 billion dollars there is not going to be $100 billion for melanoma. And with diseases acquiring advocacy groups, AIDS, prostate CA, testicular CA, decisions may rise or fall based on who has the best paid lobbyists in Washington, rather than who has the best scientific arguments in Bethesda (where the NIH is.)

And what happens to testicular CA if it's major poster boy falls from grace for doping while he was winning the Tour de France?

Is this any way to run a railroad?

Ms. Orenstein has written a very important public policy, public health article. It is one every citizen ought to read, in the quiet of his or her own home, preferably after a Valium or a good glass of wine.

1 comment:

  1. Mad Dog,
    I'm shocked-I didn't think there was a subject under the sun you wouldn't cover. Of course breast cancer does contain the mother load of PC land mines so I can understand your reluctance to tackle it. I can also see why you suggested a Valium or stiff drink while reading-it's a pretty sobering article. I think most people believe significant breakthroughs have been made in the detection and treatment of breast cancer, however, it would appear that despite many advances, if the foundations had changed their priorities from education and PR to research we might be further along. Educating twenty year old females that have the same risk of developing breast cancer as a male in his seventies doesn't seem like dollars well spent. It was also pretty distressing to read that many of the "cures" were pre-disease and not necessarily in need of a cure and that yearly mammograms continue to get sacred cow treatment despite what the science says.

    What I don't get is if the foundations are going to be distributing the funds anyway, why the reluctance to re-set their goals so that the money goes where it would do the most good-like the study of metastasis. What are they missing-or we're missing?