I highly recommend In the Family for anyone who is interested in the issues facing our community. The “BRAC-umentary” by Joanna Rudnick of Kartemquin Films premiered at our 2008 annual conference and will air October 1 on PBS. In addition there are many planned community screenings of the film across the country. In 80 minutes, Joanna, a previvor with a BRCA1 mutation, gives a face and voice to our community, addressing the conflict, grief, loss, family dynamics and most of the issues and dilemmas we face.
One particular reviewer who attended a recent screening of the film in Los Angeles was critical of the personal choices discussed by Joanna. The reviewer’s tone implied that prophylactic surgery—removal of healthy breasts and ovaries to prevent cancer— should be the obvious and easy choice.
Over the 11 years since I learned about my BRCA 2 mutation and the 10 years since I founded Facing Our Risk of Cancer Empowered (FORCE), I have read and listened in frustration to the criticism, simplification, and condemnation from individuals, the media, and even members of the advocacy community who do not understand, who polarize or trivialize the difficult choices, fears, and decisions we in our community face. Realistically, the decision to undergo prophylactic surgery is deeply personal. Those who test positive for a BRCA mutation have many risk-management options, but none are made without sacrifice: surveillance with its potential “scares” and surgery and its potential complications and side effects. The appropriateness of any given alternative depends on several factors, including lifetime risk, actual risk at that moment, and a woman’s individual tolerance for each option. Prophylactic surgery, for example, is the most effective way to lower risk for those with a BRCA mutation, but it isn’t the right choice for everyone.
Although mastectomy lowers the risk of developing breast cancer by about 90%, research has not yet shown that it improves long-term survival. This is due in part to the fact that many women survive breast cancer, and the fact that research involving prophylactic surgery has only occurred in the last 10-15 years. Giving up healthy breasts to prevent cancer is a tough decision amidst realistic concerns about side effects, major surgery, body image changes, risk for complications, loss of sensation, and a grief process that is often profound. Additional complex and highly personal issues, like the best time for testing and choosing appropriate preventive measures, face individuals who discover they have a BRCA mutation.
Reporters often ignore the personal anguish and difficulty of the decision-making process. Media stories about BRCA carriers have great potential to help those at high risk; yet all too often, accounts focus only on the sensational aspects of women at high risk, and fail to underscore how genetic experts help people sort through their risk management options. In the Family captures the essence of these critically important details. Based on five years of research and effort, this responsible film displays a care and sensitivity which has earned my endorsement.
Our community does not speak with one mind or voice. We are a diverse group of individuals of women, men, survivors, previvors, supporters, and health care providers for whom the topic of hereditary cancer is important. Our members range across the spectrum of age, ethnicity, geography, and situation. FORCE unites us despite our differences, advocating for and meeting the information, resource, and support needs of those facing hereditary cancer. For those who criticize or minimize the struggles our community faces, I offer this advice:
Try walking in our shoes.
As we get closer to the airdate for In the Family, and as coverage of hereditary cancer and genetics increases, it is likely we will see similar negative commentary about the risks our community faces and the decisions that we make. Although I’m grateful that media attention will bring awareness of hereditary cancer, what our community doesn’t need is criticism or trivializing of the difficult decisions we face. We need more research, better options, and yes, more compassion.
Everyone carries a genetic susceptibility to something, whether it’s to cancer, diabetes, heart attack, blood clots, Alzheimer’s disease, or stroke. In the Family is not just about BRCA or hereditary cancer; it’s about issues and choices made possible by advances in personalized medicine that enables us to predict who will develop which diseases in their lifetime. Based on my experience, each new disease susceptibility test will be accompanied by an emerging set of issues for those who learn they are high-risk. Hopefully, for each disease there will be a community organization like FORCE championing the needs of that population, and a conscientious producer like Joanna to bring awareness to the disease and the issues the community faces.
For those whose knee-jerk reaction to In the Family is “just have surgery and quit whining,” or those who think that we should ignore these risks rather than carefully considering all our risk-management options including preemptive surgery, I repeat: try walking in our shoes.
Guess what, with regard to genetics and disease, chances are that you already are.
Tags: brca, breast cancer, genetic testing, hereditary cancer, In the Family, ovarian cancer, prophylactic mastectomy