I’ve received some criticism of my post about Angelina Jolie’s recent announcement that she is a BRCA1 carrier and has undergone a preventative mastectomy. While I stand by my argument that she could have done more to promote the resources that are available to BRCA carriers, I do acknowledge that I was quick to critique.
Most of my peers (fellow BRCA bloggers, who I hope I have not now alienated) were thrilled with Jolie’s announcement and the awareness it will bring to genetic testing and preventative surgeries that can save us from suffering from breast and ovarian cancer. Many people have made an important point – Jolie did not have to say anything – she could have kept this entirely private, and thus the face of BRCA would still be invisible to many. I agree – I too am excited that BRCA now has a celebrity face and that potentially thousands of people might be tested who would not have thought to ever do so – her announcement has brought to the front page a lot of information about genetic testing, gene patenting, prophylactic surgery, and more.
My critique of Jolie was mostly emotional. FORCE and its members have been really important to me in my own journey, and it was immediately noticeable to me that Jolie only mentioned her partner as support. Perhaps he really was her only support. If so, I actually feel sad thinking that Jolie might not have known about FORCE and its community. As a frequent commenter and poster to their message boards, I know that whole community would have been happy to help her with advice or support in any way.
She also suggests that people should be talking to their doctor about testing and its consequences – she does not mention genetic counselors. As I’ve written here before, many doctors are not educated about BRCA. My previous PCP did not know that BRCA could be inherited from your father – it can (that’s how I got it). My husband’s previous PCP told him he didn’t need to be tested (even though his grandmother died of breast cancer ,and his sister, his mother, and his mother’s cousin are all breast cancer survivors) because the risks for men are minimal – also not true. We now know that my husband is a BRCA1 carrier, and this means he will need screening the rest of his life for prostate, pancreatic, and other types of cancer for which he is at higher risk.
Jolie says her process began with nipple delay, saying nothing about the endless research, genetic counseling, and doctor consultations that most of us BRCA carriers do/have before our surgical procedures. She says the decision was not easy, but doesn’t go into detail about how she made that decision – that is what most people in the FORCE and ‘previvor’ community are concerned about. How do you come to that decision? What are the consequences of knowing this information? What do you do with it once you have it?
Jolie’s op-ed in the NYT, which has now been spread to virtually every news outlet around the world, was the perfect opportunity to discuss how people can get support before and after learning of their BRCA status. Support doesn’t always come from a doctor or a partner. It also comes from communities of people who’ve experienced what you’re going through. I guess I’m just very thankful for that community, and I felt disappointed that it seemed to be neglected in what would have been a perfect place to highlight it.
Luckily, however, members of the FORCE community have seized the opportunity to bring FORCE to people’s attention. Here is Sue Friedman’s interview on NPR.