Mom & I (circa 1970)

 In 2000 I found out that I was high-risk for both breast and ovarian cancer. It was during this time that I felt alone and dealing with a subject not many people understood. Thankfully I found FORCE: Facing Our Risk of Cancer Empowered. FORCE helped me connect with other women that were going thru the same issues. To give my thanks I’m doing an online fundraiser. Please click on this link to learn more about FORCE, my involvement with the organization and/or to donate. I’d love your help.  You can make a difference.

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  In May, 2000 I found out that I had tested positive for the BRCA1 genetic mutation which put me at high risk for both breast and ovarian cancer.  It was while I was on the path of determining what I was going to do with this information that I found myself growing more and more frustrated with my attempts at explaining to others what I was going through.  The journey up to this point had been long and complex, and the explanation of what I had been through was just as involved.  By this time, I had found FORCE: Facing Our Risk of Cancer Empowered and was a frequent visitor to their message boards.  It was during this time that I created a new thread on the boards, posting out of shear frustration, “I need a label!”.   I needed one word that would simply and succinctly tie up all the complexity and put it in a word that doctors and others could understand.  Upon reading my post, Sue Friedman, FORCE’s executive director, immediately got it.  She understood not only what I needed personally but saw the greater picture of what this meant.  She realized that having a label would not only help unify our community but would also help provide credibility to our needs.   A small group of us, myself included, worked closely together to come up with a name that represented our community.  Previvor was born.  Over the last eight years the word Previvor has been embraced and used by our community as well as doctors in the high-risk field.  The word has appears in numerous articles and medical journals to date. 

December, 2007.  I’m on my way to the airport after attending the San Antonio Breast Cancer Conference and I received a call from Sue, who I had just left.  She told me she had just received a phone call telling her that ”Previvor” had been chosen as one of Time Magazine’s Top 10 Buzz Words for 2007.  I was stunned.  Over the eight years since its inception, as one might imagine, I had developed quite an attachment to the word.  I had a dream, a goal if you will, for the word Previvor to become main stream.  A commonly used word.  I had a dream too that one day Previvors would be acknowledged, alongside Survivors, for the road they had traveled, no matter what their personal choices had been.  I felt in that very moment that this news was the first step towards these goals.  This was our first glimpse that the word Previvor and its meaning was going beyond us, into the public world, without our prompting.  Time Magazine – wow. 

FORCE personally changed the way I handled the complex situation I had found myself in eight years ago.  FORCE’s message boards early on became an invaluable resource as it gave me a place to interact with others who had not only gone through this ahead of me but who were going through the process at the same time I was.  Over the past ten years FORCE has continued to grow and expand its services to others.  FORCE provides education, compassion and awareness to the issues surrounding hereditary breast and ovarian cancer unsurpassed by any other organization.  Previvor is only one of the many positive marks FORCE has put on society since its inception.  I may have had the need, the dream and the request but Sue and FORCE had the vision and took action so many others could be empowered. 

Previvor  n. person who does not have cancer but possesses a genetic predisposition to develop the disease; a presurvivor

A person who does not have cancer, but has precancerous cells or a genetic mutation known to increase the risk of developing it: a pre-survivor. With the rise in genetic testing and groups like FORCE (Facing Our Risk of Cancer Empowered) that encourage women to find out whether they’re likely to develop breast or ovarian cancer, some Previvors are taking such drastic measures as getting preemptive mastectomies or hysterectomies.

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