I cannot believe how time marches on! Just five short years ago, I was debating on having a Prophylactic Bilateral Mastectomy (PBM). During that time, I talked to my doctors, family and friends for their input. Two of my close friends are survivors and they both said if they had the option like I do that they would take it. Neither one wanted to see me go through what they did with chemotherapy and radiation and all the side effects. But I still felt like I was intruding on their experiences and needed to talk to someone who had tested positive for the BRCA gene mutation. I turned to the Internet and found many sites devoted to cancer survivors.
In 2006, while doing my research on the Internet, I discovered FORCE, Facing Our Risk of Cancer Empowered. This site was existed primarily for people with either a hereditary genetic mutation and/or a strong family history of breast or ovarian cancers. I was excited to be able to feel like I belonged!
BRCA2 positive tested, check.
Strong family history of BOTH breast and ovarian cancers, check.
Needed help, support and information without feeling like I was intruding on survivors feelings, check.
I found my place, I found a home where I could ask questions and get help dealing with not being a survivor but yet still having a very high risk of being diagnosed with cancer. I had already had my ovaries out in 2002 thereby reducing my ovarian cancer risk to less than 2% and cutting the breast cancer risk from 90% to about 50%. Because my father had breast cancer, it raised my risk. In 2006, while on my journey of discovery about my future PBM, I was still finding health professionals still only concerned about my maternal side breast cancer history and as recently as 2010, some still thinking the BRCA gene is related to the sex chromosome.
Due to the efforts of the volunteer members of FORCE, these myths were being dismissed. The GINA, Genetic Information Nondiscrimination Act, was passed. Prior to GINA, I had to make sure my doctors did not write anything in my charts about being BRCA2+ less I be dropped from my health insurance. Now, patients do not have to worry!
The term, Previvor, became the #3 new word according to Time magazine in 2007! By definition, a Previvor: A survivor of a predisposition to cancer. No longer not being here nor there, I have a place in a community called FORCE, Facing Our Risk of Cancer Empowered.
After my PBM in June of 2007, I needed to look for more help since I was going through terrible infections. The members of FORCE came through once again. One member in particular was Barbara Pfeiffer who is currently the CEO of FORCE. She was always encouraging me and told me to post on the message boards to other members so they knew not all surgeries were a cake walk. I am so very thrilled and proud that Barbara is still a strong presence with FORCE and take this opportunity to send out congratulations and Mazel Tov. Don't forget, I will always be here to volunteer as always!
So, in looking forward, I am still cancer-free and celebrating the 4th anniversary of my PBM, or my own term, Foobversary, on June 7th!
Love and hugs,