UPDATE: May 5th - I finished the Pittsburgh 1/2 Marathon in 2:18. I'm so glad I could do this. I feel strong and healthy and would never have gotten to this point in my life without FORCE's help.
I’m not a hero but I do have an unusual and very 21st century tale to tell. It is over 2 years since I found out that I have a deleterious BRCA1 mutation.
What does this mean? Experts estimate that a woman with a BRCA1 mutation has a lifetime risk of breast cancer of 64% and a lifetime risk of ovarian cancer of 55%. It is so important to get the word out about BRCA, especially in the Ashkenazi Jewish community where it is estimated that 1 in every 40 people has one of the BRCA mutations as opposed to 1 in every 300-500 people in the general population. Another little understood fact is that men also have brca genes and like women, if they have a brca mutation then they have a 50% chance of passing it on to each of their children.
A random turn of events led me to the potentially lifesaving information that I have a BRCA1 mutation. My son, all of 22 at the time, decided to order a genetic test from a company called 23andme which offers its testing services direct to consumers on the internet. He enjoys being on the cutting edge of science and computers. The next random bit was that he happened to be visiting us when he got the results in his email and so he shared them with us. 23andme tests for the 3 Jewish founder BRCA mutations and we were very shocked to discover that he has one of them. Shocked because neither my husband nor I thought we had a family history of breast, ovarian, or prostate cancer. Long story short, I was tested and in Jan 2011 got the unexpected result that I was the parent who gave Eli the mutation. Further digging into my family history did uncover one 1st cousin on my Dad’s maternal side who died young from ovarian cancer – and the fact that there would not be much family history because there were very few women in that branch of my family. My paternal grandmother died at the age I am now, 55. I was always told she died of a heart condition. I will never know if that was the whole truth.
My journey took me, via an excellent local genetic counselor, from the positive test result to the website of FORCE (Facing Our Risk Of Cancer Empowered) where I found the latest information on hereditary breast and ovarian cancer (HBOC) and a welcoming and supportive community which helped me get through the hard decisions ahead of me. "FORCE was founded on the principle that no one should have to face hereditary breast and ovarian cancer alone. We are the only national non-profit dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer."
I decided to have two prophylactic surgeries that research has shown would give me the best chance of avoiding a cancer diagnosis. First, I had my ovaries and fallopian tubes removed and then I had a bilateral mastectomy. I also chose to have breast reconstruction, a tricky process that I have not yet completed. Since my initial breast surgery I have had three more, one emergency and two more revision surgeries to try to improve my cosmetic outcome.
Because I want to give back to the community which helped me I have become a co-coordinator of the Pittsburgh FORCE group. I have also attended two of FORCE’s conferences and participated in a program they created to train lay people to be research advocates for the HBOC community. As a personal challenge I have decided to run my first 1/2 marathon which I hope to do on May 5th. I will let you all know how I do in this race!
Visit FORCE’s website: http://www.facingourrisk.org to learn about the important work they are doing for my community. My goal is to raise $1500 for this “Heroes Campaign”. Please be my hero by making a donation to FORCE today.