Category Archives: Previvor

Previvors have powerful knowledge

I just finished watching a video from TEDMED 2012 of a presentation given by Dr. Ivan Oransky. In the video, he speaks about predisease states. The presentation seemed interesting, at first, as he talked about many preconditions and the underlying issues of over treatment that can cause unnecessary harm to patients. He raised some good points.

6 minutes into the video, he began his discussion of “previvors”. I’m saddened at his lack of knowledge and insensitivity to women and men who have a known genetic mutation. When I was diagnosed with Breast Cancer at age 36, I went through genetic counseling and testing. Through this counseling and testing, I learned of my BRCA 2 mutation–the mutation that significantly increased my lifetime risk of both Breast and Ovarian Cancer. I quickly became involved in a wonderful organization called FORCE. FORCE coined the term previvor, and I am so thankful for what this organization has contributed to the lives of both women and men living with a BRCA mutation. FORCE has saved lives by increasing awareness, providing support, providing education, and providing a community for men and women affected by a hereditary cancer mutation.

Sadly, I know too many young women that learned too late about this mutation. These were mothers, sisters, daughters and friends that left us far too early because of a cancer diagnosis.

Dr. Oransky, I encourage you to learn more before you laugh off the term previvor, before you suggest that Mark Burnett start another TV show. You are talking about beautiful women who are taking measures to save their lives. Beautiful women who deserve to live. I am lucky to know so many previvors who are living wonderfully productive lives because knowledge gave them the power to escape a cancer diagnosis.

Dr. Oransky, I hope you will learn more about hereditary cancer mutations, about previvors, and about this wonderful organization that continues to save lives.

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One more little request

With Representative Wasserman Schultz

This is my second post in one week.  Pretty certain you’re reading this and running in the other direction wondering what I want you to do now.  I know, every time I post, I’m asking for you to do something but this one is really important (OK they are all really important).   But this one is really really important and can seriously impact lives.  Representative Deborah Wasserman Schultz introduced #HR1522 legislation into Congress which will establish Hereditary Breast and Ovarian Cancer awareness week and make Wednesday of that week National Previvor Day.  We need 100 co-sponsors in the house by August 2 and right now we have 20. 

Please take action quickly for my good friend Sue Friedman–who left a career as a vet to start FORCE over a decade ago.  Take action for so many of my friends who’ve learned they have a BRCA mutation and have taken preventative measures before they’ve gotten a cancer diagnosis.   Take action for way too many women who are battling metastatic disease because they found their cancer too late or had a recurrence.  Take action for all the young women diagnosed with cancer because BRCA strikes younger women and is much more aggressive.  Take action for the young girls in our lives who need to know about hereditary cancer so they can live long, healthy cancer-free lives.  Take action now because August 2nd is quickly approaching.

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