*Previvor (according to Wikipedia)
A cancer previvor is a person who is not diagnosed with cancer, but has a survived the predisposition, or higher risk, of cancer due to a certain genetic mutation. As such, this is the first generation in human history who, armed with information about a predisposition to a cancer after opting in to DNA testing, can make informed choices prior to cancer diagnosis.
Like many others in my sphere of influence, I witnessed first-hand the toll cancer takes on a loved one. My father passed away from Breast Cancer in 1989 after a 5 year battle. In 1996, I found out I carried the BRCA2 Genetic Mutation. This meant I had a predisposition to both Breast and Ovarian Cancers in addition to my strong family history. In 2002, I had my first of many surgeries to remove my ovaries, ending one stage of my womanhood. Being 42 I was not in favor of more children but I still felt that tug of never being able to have more and having that choice stripped away from me in deference to avoiding Ovarian Cancer and reducing my Breast Cancer risk by half.
By 2006, I had had several scares and a multitude of mammograms, biopsies, MRi's, ultrasounds and my stress level was at an all-time high. Having never had cancer, I felt out of place in the survivor support groups both in person and on the Internet. My fiancé convinced me to seek another opinion and I went to an oncologist for help. I was put on Tamoxofin as a prophylactic measure. This was met with mostly contempt from survivors along with comments such as, "You don't know what it is like to be a survivor", "How can you even begin to compare your life with ours". I was in tears because I had nowhere to turn for help.
I began investigating the Internet with a ferocity. I discovered FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org) and found a home! I was in tears again but these were happy tears! They got me! I was not the only one out there. I heard discussions about genetic testing, prophylactic surgeries, reconstruction (or not), talking to family members and an overall feeling of belonging. In 2007, with love, support and information from my family, friends and my FORCE Family, I had the next of a series of surgeries to have my breasts removed and reconstructed. I encountered many speed bumps along the way. When someone would tell me I was "mutilating" my body, I had FORCE to turn to. In 2008, I attended my very first JoiningFORCEs Conference in Tampa, FL. This was followed by the next one held in Orlando, FL. Each trip, I learned more and more and brought back more to share with my fellow BRCA community in Philadelphia.
In the words of Dr. Friedman in her recent blog entry,
An estimated 750,000 people—about .2% of the entire U.S. population—carry a BRCA mutation. Not a large group compared to our overall population, yet we shoulder about 10-14% of the breast and ovarian cancer burden, and our cancer risk is some of the highest known to science.. I am part of that percentage.
The importance of the HBOC Week and Previvor Day cannot be felt as poignant as it is with those of us in the BRCA community. This will help pave the way for more research and hopefully, a way to reduce and maybe even eradicate Breast and Ovarian Cancers in, perhaps, my child's lifetime. FORCE has brought an empowerment and sense of belonging to me more than any other group could possibly have done. Out of this has sprung a wonderful new book, released during HBOC Week, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port, a FORCE member.
We have also been fortunate to have a view from another FORCE member and friend, Diane Tropea Greene, Apron Strings: Inhereting Courage, Wisdom and . . . Breast Cancer. This chronicles a family of sisters and their journey through their family's ordeal with cancers.
Apron Strings: Inheriting Courage, Wisdom and . . . Breast Cancer
My friend and film-maker/researcher, Joanna Rudnick, was prompted to make a documentary following her family and her own search for answers to make an informed decision after learning she carried the genetic mutation. Her film, In the Family, is incisive and educational in a grounded way. I have since become good friends with one of the FORCE women in the film and glad we met 3 years ago!
I am having trouble typing through the tears forming. Had I never found out about my mutation I carry, my surgeon was almost certain I would have had a bout with Breast Cancer at some point. It was a matter of when, not if. As a matter of fact, they did discover a stage zero DCIS in my pathology. A Bilateral Prophylactic Mastectomy would have been the treatment for me and that is exactly what I had done. I am here, defying my risk of 85-90%, seeing my child grow up to become a man and graduate next year from high school. This year, we celebrated our 5th wedding anniversary, and I never would have gotten here if not for him. I am happy to be able to celebrate this momentous occasion of HBOC Week with my fellow FORCE Members and look forward to many, many more!
Love and hugs,