The Clock Stops Here...

Monday, September 27, 2010

Let's Hear It For The Girls

Ten years ago, when I found out that I had  indeed inherited a fluky BrCa 1 mutation from my Father, I finally knew why I was diagnosed with Stage 1 breast cancer at 37.  It was devastating to have confirmation of something potentially so lethal, but it felt like the mystery of my dash of bad luck, had a least been solved...

My decision to undergo prophylactic surgery,  simply made sense.  Statistics were not in my favor.  I had strong support from my family, inner circle of friends, employers and clients.  I also knew I had the best medical team  for me, on the planet;  Dr.'s Roy and Andrew Ashikari and Dr. Andrew Salzberg.  My decision to ask for their help in reducing my risk of  another breast cancer by over 95% and creating a nice replacement rack, was greeted with total respect and compassion.  I knew I was in brilliant hands and I placed my faith in them completely.  Their skills exceeded any result I could have imagined and I am indebted and thankful, to all of them.

Six months after my surgery,  I stumbled across a website called FORCE, an acronym for Facing Our Risk against Cancer Empowered.  Its founder, Sue Friedman, was also a breast cancer survivor and BrCa 2 carrier.  Sue founded FORCE, out of her own need to connect with other high risk women and to put together an online support group and resource outpost.  It was a great  comfort, to feel like part of a larger group of women, who truly understood my issues, fears and desire to find my new normal.

I have made some indelible, friendships over the years through FORCE and when my medical team pioneered a new reconstruction technique, ideally suited for the high risk community, FORCE was the first place I ran to "start spreading the news".  Little did I know at the time, that as a result,  hundreds of women, mostly,  "previvors",  (a term coined on the  FORCE Message Board in reference to women with known mutations or other high risk familial histories, but not yet cancer survivors),  would flock to Dr. Ashikari and Dr. Salzberg, for nipple-sparing, Direct-to Implant Reconstruction.   As a result, this April, I will be both  Chairing and Honored,  at The Ashikari Breast Center Making Dreams A Reality  fundraising gala.  I am very proud to be able to have helped so many women find "their" dream team and a  far less traumatic reconstruction, than I endured.

Fast forward 10 years, to some other significant milestonesSue Friedman in partnership with Representative Debbie Wasserman Schultz,  lobbied to create passage of  Hereditary Breast and Ovarian Cancer Week, which was voted in unanimously by our House of Representatives.  In addition, the last Wednesday of every September, will be National Previvors Day!  The hope, is to educate the nearly 3/4 of million Americans who may not even know, they are at heightened risk of being diagnosed with breast or ovarian cancer and what they can do, to best manage their risk.

I am also incredibly proud of my dear friend Mayde Weiner, as well as  Suzanne Bisous, Lisa Marton, Amy Frishman and Rory Payne Clarke,  5 Boca Babes, who  bravely collaborated with health writer Dina Roth Port, to share their Previvor journeys.  All five, travelled from Boca to Dobbs Ferry, N.Y., to have their surgeries with Dr. Ashikari and Dr. Salzberg,  after learning about Mayde's fantastic cosmetic results and easier surgical procedure. I was deeply touched, that Mayde chose to include me in her acknowledgement's.  Port's book is comprehensive, and covers everything that a woman, (or man) at high risk should know, including insurance issues, Genetic Counseling and testing, surveillance options and the latest in all reconstruction options, for women who choose to reduce their risk surgically.  It is poignant, and deeply informative.  It is already winning rave reviews and you can pre-order your copy at Amazon.  Barnes and Noble,  The Previvors or Dina Roth Port's website.

I am so happy  and hopeful, that other women will have more resources and support than I did, when I had to make such difficult choices. All women should  make sure they know both sides of their families breast and ovarian cancer history.  Remember to have an annual digital mammogram and ultrasound if you have dense breasts, keep in touch in the shower and if you feel a lump, thickening or have any discharge, see a breast specialist immediately.

Wishing you all healthy bubs and for those at high risk, informed choices.



  1. Debbie,

    You are truly a pioneer and I thank for sharing your story on FORCE. Where would we be without the internet?


  2. I wonder that everyday Amy!
    Thank goodness Sue F. had the foresight to create FORCE. So much that is positive has come through this amazing tool, that keeps us all connected.

    Best of luck with The Previvors! You were all so brave to be so public!


  3. Debbi, as a human, this warms my heart, as a woman, this makes me inspired, as a cancer survivor (kidney) this makes me very proud.

  4. Me too JoElla,
    I love the whole concept of women helping women and giving back. The timing of National Previvors Day being signed into law and the publishing of their book at the same time, is not anything that could have been foretold! I am so happy for them!

    Lots of good health to you and many thanks for stopping by and leaving your comment.




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