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Try Walking in Our Shoes

August 19, 2008

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.

 

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9 Comments

  1. Grace T says:

    Love the blog, Sue. Thanks for this. I’ll link to you.

  2. Becky W says:

    It astounds me that anyone could just say ‘quit whining and have the surgery.’ I have BRCA1, and was diagnosed with Stage 2 Breast Cancer in April. Getting a masectomy was a fairly easy decision with my life at risk, but my doctors recently recommended hysterectomy, and that one is really hard. When you’re young and want to have children, that is a tough decision. Even if you’re older, we’re essentially removing things that strongly identify us as women, and that’s never an easy decision.

  3. Anonymous says:

    thank you Sue for acknowledging that phrophylactic surgery is not the right choice for everyone

  4. TS says:

    I pre-ordered the documentary. It is well worth the money to now have it in my DVD library. It is now available for my sisters and other family members to watch when they want to do so. Thanks to all of you who have been part of FORCE. I recently tested positive with a BRCA2 mutation after DCIS at age 42. We do not have a family history of breast or ovarian cancer. One of my sistes has now tested positive. Thank God we have options other than a ticking time bomb!

  5. April says:

    I am from a family of five daughters; three carry the BRCA1 mutation. Our younger sister died of breast and ovarian cancer this year. We did not know about the gene defect at that time, and she opted for lumpectomies. Another sister has had breast cancer twice. She had a mastectomy each time. Her surgeon suggested she have the test. After she found she was positive, the three remaining sisters had the test. I also had a positive result. After learning more, I had my ovaries removed. I decided not to have prophylactic mastectomies because I felt I could catch any breast cancer early by continuing my careful watch for it with my physician. My latest mammograms showed ductal carcinoma in situ. It was well developed. This is not officially cancer, because it does not spread. It is, I was told, the last stage of pre-cancer. I immediately had both breasts removed. In retrospect, I feel I should have had the prophylactic mastectomies when I found out I was BRAC1 positive. I was extremely lucky to have had the warning of the ductal carcinoma. I do not have to go through chemo or radiation. I feel I could just as easily have developed breast cancer in the same twelve-month time frame.
    My daughter is also positive, as is a young niece. My daughter is still recovering from complications from the breast cancer surgery she had over a year ago.
    It is difficult to make the decision for prophylactic mastectomies, especially if you are still a young woman. I am in my early sixties with a very supportive husband. My heart goes out to every one of you facing this difficult decision.

  6. diana says:

    great strength and great words.. i’ve watched ITF 4 times… now we’re going to purchase it. i am asking our local library to purchase it too- the hospital library. it is a good portrait of many options and views. thanks Sue.

  7. barbara says:

    Reading all you comments is helping know even though I have to have this horrible surgery it is the right decsion. I was diagnosed with breast cancer in may . Had lumpectom,chemo and last day of treatment I found out brca1+. My fathers sister had breast and twenty yrs later died from ovca.I have gone for many opions and feel I should have these surgies to reduce my risks so I can live in some pieace instead of it consuming my mind every wakink minute

  8. Laura Hayes says:

    This film was wonderful and it arrived in my mailbox at the right moment in my life when I was facing the most difficult decisions in my life. It gave me and my family lots of insight on what these genes mean to my entire family.
    I read this BLOG and loved it. To anyone out there that has any criticism to say my prayer for you is that you or anyone you love never has to find out what it is like to walk in our shoes.

  9. caryn says:

    “Thanks for your comments.” The pbm decision has not been easy for me. I’m actually concerned about the comments from others, so your words are helpful. I need a support system so I can handle the negative comments from others who do not understand. “Why would you have healthy tissue removed?” That’s what I’m getting.
    Thanks for confirming this is not as easy as it seems from the outside.

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