Even More Thoughts on Angelina, Me and You

Largely because of the cover story I wrote on breast cancer a few weeks back in the New York Times Magazine, I spent yesterday being asked my reaction to Angeline Jolie’s announcement of her preventative double mastectomy. I talked to newspaper reporters, was on TV, on the radio. I wrote a post for the New York Times Magazine blog. But sometimes in this new media era of quick turn-around, we’re compelled to react so fast we don’t have much of a chance to actually think. And twenty-four measly hours later, as the dust has settled a bit, these are the issues I believe are stake:

The advisability of removing your breasts and ovaries when you have a rare genetic mutation such as Jolie’s (the BRCA1 mutation affect .6% of the general population; about 1% of Ashkenazi Jews; about 5-10% of women diagnosed with breast cancer). Hers was a totally understandable and medically warranted choice. It’s worth noting, however, that research on those families is primarily based on those that have been devastated by cancer. It may turn out over time that if families with less incidence are included, the risk of death is lower than previously believed. Still, it’s a viable choice. And a lousy one to have to make. Which brings me to:

The expense of the test-$3,000–and crummy options for women with a positive result.  Myriad Genetics owns the patent on the BRCA genes. That’s right:  Owns. Genes. As Karuna Jaggar, exectutive director of Breast Cancer Action writes on the organization’s blog that means it controls all research, testing (including its costs), diagnostics and development of treatments related to the BRCA genes. Elsewhere  she writes:

This monopoly prevents anyone else from so much as examining the genes, and creates barriers to scientific research and medical care relating to breast and ovarian cancer, including:

•    High testing costs.
•    No second opinions.
•    Undermining research.
•    Blocking the development and availability of alternative tests.
•    Lack of data sharing and analysis.
•    Limited information for underserved populations. 

Breast Cancer Action, along with researchers, genetic counselors and cancer patients joined a lawsuit to overturn Myriad Genetics’ patent (and by extension any company’s patent on our genes). The case was heard last month by the U.S. Supreme Court; a ruling is expected this summer.

Facing the decisions high risk women confront is excruciating. Perhaps by pushing beyond the personal story and into the larger questions we can make things a little better for the next generation. You might be wondering where Komen stands in all of this. They are silent. Perhaps because Myriad Genetics is one of their donors.

Another issue is the way we talk about breast cancer. Breast cancer is not one disease; it is a family of diseases that range from the virulent to the relatively benign. So it is not, by a long shot, an automatic death sentence and we need to recognize that so we can respond reasonably and appropriately–tumor biology matters. As patients, our situations are not all the same; they run a huge gamut that requires a range of decision-making.

Meanwhile, Pink ribbon culture, as I wrote in the piece, has stoked our (understandable) fears of breast cancer creating,  if unintentionally, an exaggerated perception of risk among the average woman. That’s affecting our health choices and, ironically, deflecting attention from those who truly need it–those with metastatic disease.

I reported in my piece that there has been a steep rise in the percentage of women choosing to have both breasts removed after a low-grade cancer diagnosis in one breast. That will not keep the disease from spreading elsewhere in your body (which, again, is what is lethal, not cancer in your breast) . The hope is to prevent a new cancer on the other side. One would assume that women making such a radical decision would be provided with the most accurate information and deepest understanding of personal risk. Yet, researchers have found that such women vastly over-estimated their risk of a new cancer, believing it to be  be 30 percent over 10 years when it was really 5 percent. Meanwhile, for those of us whose cancer allows it, treatments like Tamoxifen and aromatase inhibitors both reduce the chances that our existing disease will spread and reduce our risk in the other breast.

Ultimately our fear of breast cancer–or the manipulation of those fears– can distract us from what actually needs to be done to reduce the incidence of this potentially deadly disease and  lower risk for everyone. It distracts us from demanding research into prevention; the mechanisms by which cancer spreads; less toxic, more effective treatments; the impact of social social inequity.

Barbara Brenner, a breast cancer activist who died last week, used to say we can’t shop our way out of the breast cancer epidemic. Sadly, we can’t amputate our way out of it either.