Positive Results Blog: An open letter response to a Cornell Sun blog post

This morning Google alerts picked up a blog post in the Cornell Sun that I felt I could not let pass without response. The student blogger was reporting on a class where testing for BRCA mutations and preventive surgery to avoid breast and ovarian cancer was much criticized by the lecturer. You can find the original blog post here.

I could not leave this without response so I sent the following email to the author:

Samantha,

Your blog hit my desk this morning having been picked up by Google alerts. While I am glad that your class is discussing the implications of genetics and the future of medicine I would like to add some real life perspective to the hypothetical presented in your class. I would also like to offer a correction. There are not multiple options for testing for the BRCA genes currently as Myriad Genetics holds patents that make it the exclusive source for BRCA testing in the United States. That may not continue to be true as those patents have been challenged in the courts and the United States Supreme Court issued a decision in another gene patent case last month that could result in all or some of the Myriad patents being invalidated. Another inaccuracy in the blog was that the a BRCA test does not show that you have breast or ovarian cancer. It just shows that you have a genetic predisposition that increases your likelihood of developing cancer in the future.

The issue that I have with the hypothetical presented to your class is that it is not very realistic. BRCA mutations result in earlier onset of breast and ovarian cancer very often striking women in their 30s and 40s who are raising children. Most of the 55-year-old women that I meet who have BRCA mutations have already battled breast or ovarian cancer, sometimes both. If a woman with a BRCA mutation reaches age 55 without a breast or ovarian cancer diagnosis she is truly lucky indeed. I am also dismayed that you portray a decision to have preventive surgery as simply "a chance to live longer" when we are all going to die of something someday any way. While that is true, those of us with BRCA mutations have all watched loved ones fight and often die from breast or ovarian cancer and we know that the battle is long, difficult and ugly. Allow me to give you a few more real life scenarios that are far more common than the one presented to you in class:

31-year-old BRCA-positive woman who grew up without a mother because her mom died of ovarian cancer when she was 6. How does she tell her fiancee that she wants to have preventive surgery as soon as she has kids so she does not leave them motherless?
38-year-old woman with less than 6 months to live because her "early" stage 0 breast cancer -- diagnosed when she was 33 -- has metastasized to her vital organs and her brain. She was diagnosed when her oldest child was 6 and her youngest was a toddler. Her daughter has never known a mother who was not "sick" and she will not see her daughter matriculate out of primary school much less see her children graduate from high school or dance at their weddings.
A 50 something woman who has battled breast and ovarian cancer who is currently in hospice care and may not make it to summer because her recurrent ovarian cancer has invaded her intestines. Her beautiful 22-year-old daughter is her primary caretaker and will not only be dealing with the grief of losing her mother but also facing decisions about her own body parts because she inherited her mother's BRCA mutation.

These are more realistic faces of BRCA carriers. Those of us with BRCA mutations who opt for preventive surgery to hopefully avoid the cancer that had taken many of our loved ones do so reluctantly. Do we do it to live longer? In one sense yes. But in truth, what we really want is a normal life span, not one that cuts our life short after multiple surgeries and multiple rounds of chemotherapy. Knowing that we have or do not have a family genetic mutation allows us an option that you take for granted, an option to live a normal life, see our kids grow up, play with grandkids and die having lived a full life. I will tell you that the women on my father's side of my family (the one without any BRCA mutation) all lived into their nineties while the women on my mother's side of the family died decades earlier. I inherited my mother's BRCA mutation but I have to tell you that I sincerely hope to live a life more like that of my paternal grandmother.

Regards,
Joi Morris