Tuesday, May 14, 2013

Angelina Jolie's mastectomies affirm that knowledge is power

I awoke today to dozens of emails from friends and family sending me links to Angelina Jolie's New York Times article about her decision to undergo preventive mastectomies because she is BRCA1 positive. This is indeed big news, mostly for Angelina Jolie and her family, but also for all of us who are part of the big "BRCA family." Those of us who have made the same life changing decision to undergo preventive mastectomies without a cancer diagnosis all identify with Jolie's decision.
"I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer." ~ Angelina Jolie
This reflects my experience exactly.  The decision to have preventive mastectomies is difficult and emotionally painful.  The decision was hard for me, as it was for Jolie and as it is for every woman who faces it.  Like Jolie, I kept the decision private until after the surgery, mostly to protect my young children.  I didn't want people asking me about surgery in front of them as I thought this might prove scary or upsetting.  After the surgery, I was happy to speak openly about my decision and the process.

At the time I made my decision to have preventive mastectomies in 2007, no celebrities had publicly discussed having a BRCA mutation or electing preventive mastectomies.  Had Angelina Jolie been a role model for me at that time it would have made a difference.  And I anticipate that it will make a difference to thousands of women now who are facing decisions about genetic testing and about protecting their health if they are BRCA positive.  At the time I tested positive for a BRCA2 mutation in 2006, the only other person I knew with a BRCA mutation was my mother, who had survived breast cancer.

Fortunately for me, I found FORCE: Facing Our Risk of Cancer Empowered, the national nonprofit dedicated to fighting hereditary breast and ovarian cancer through support, education, advocacy and research.  Through FORCE I met other BRCA-positive young women who had already made the decision to have preventive surgery.  Being able to talk to these women, to hear their stories, to ask them the questions that I could not ask my doctors--such as how they coped emotionally and how did surgery affect their sex life--was a turning point in my thinking. To see these young women, near my age or younger, who looked good and were happy with their decisions to have surgery, made what I had thought was an almost impossible decision seem reasonable.   Meeting them and seeing their reconstructed breasts was the key to my being able to make the decision to pursue prophylactic surgery.

It is has been more than six years since my preventive mastectomies.  In that time I have written a book to help other BRCA-positive women navigate the difficult decision-making process: Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer.  I have been a volunteer for FORCE to provide education and support for other women making these decisions.  I am an Advocate in Science for Susan G. Komen for the Cure because I think the only way for better options to be available is to participate in the research process.  And I have joined the Board of FORCE because I believe that of all the breast cancer groups out there it is the one making the biggest difference in the lives of women like me.

What is FORCE doing?  Here is a short sampling of the dozens of programs and initiatives in which FORCE is involved:
  • FORCE is involved in advocating for women who are precluded from getting genetic testing because of Myriad's patent on the BRCA1 and BRCA2 genes.  FORCE presented testimony to the United State Patent and Trademark office on the impact gene patents on the hereditary cancer community and filed a brief with the United States Supreme Court seeking to have the patents overturned.
  • FORCE is involved in advocating for genetic testing to be included in all health care coverage under the new Affordable Care Act for all women and men who need it.  
  • FORCE is involved in advocating for expedited research and development of drugs for women currently fighting hereditary breast or ovarian cancer.
  • Find out more about what FORCE is doing here and here.

I wish Angelina Jolie well.  I am thrilled that her husband, Brad Pitt, is supportive.  She has made a life-affirming decision both in proceeding with the surgery and in being public about it.  If you or someone you love is facing the same decision, know that you are not alone.  FORCE has volunteers who will talk with you any time.  Just contact the helpline.  And if you need answers to your questions, start with Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer.



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3 comments:

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    1. Thanks Amy! And thanks for all you do!

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  2. Never too late to congrat...great post indeed Joi ...Knowledge is power and thus am pleased to share with you my just published novel in Amazon " A Woman and A Lake" of a scientist diagnosed with BRCA, her challenges and adversities, her successes and romances..her life with BRCA...http://www.amazon.com/A-Woman-Lake-Dorit-Amikam/dp/0615847137/ref=cm_rdp_product_img

    Dr. Dorit Amikam
    Molecular Oncologist
    Artist and Author
    www.doritamikam.com

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