In lieu of flowers:
I found out in January of 2011 that I have a BRCA 1 gene mutation. I didn’t know very much about it and my genetics counselor pointed me to the FORCE organization. The information on their website and the amazing support of this virtual community of women at high risk for breast and ovarian cancer has helped me through the most difficult and challenging decisions in my life. I was told by my genetics counselor that as a 53 year old woman who had not yet gotten cancer my risk of getting ovarian cancer in the next 20 years would be 34% and my risk of getting breast cancer would be 37%. Some other studies that I subsequently read estimated the risk to be even higher.
I had a prophylactic oophorectomy in March of 2011. This is highly recommended by the medical community because ovarian cancer screening is ineffective and survival rates are poor when the cancer is not discovered early.
Now I am about to have a prophylactic bilateral mastectomy. The decision of whether or not to have this second surgery was much more difficult. In the end after a great deal of research I decided that I would have the best quality of life if I went ahead with this surgery. My other option was increased surveillance for breast cancer which involves alternating mammograms and MRI’s every 6 months. I was so consumed with worry in the last year that I could not see living out my life this way even if I was lucky enough to avoid getting breast cancer.
The story of how I discovered that I have the BRCA 1 mutation is unusual. I wasn’t aware of any family history that would have made me seek testing. In fact, there are very few women in my family. Men do carry and pass on the mutation and they are at higher risk for breast and prostate cancer. But, because their increased risk is relatively small the mutation can get passed through the males in a family and remain undiscovered. Believe it or not, my story is that my 23 year old son got an email offering him a discount from one of these new direct to consumer genomics testing companies. It's called 23andme.com. He just had to send them a cheek swab. This was in June of 2010 and he happened to be visiting us when he got the results. He was sitting at the kitchen table with his laptop and offered to show me what it was all about. He started clicking through the results and there it was: positive for one of the brca1 mutations. At first I filed away this bad news and ignored it. Eventually I did research, found out it could have come from either myself or my husband, consulted a genetics counselor, had the testing, and got the results in Jan 2011.
Shameless plug ahead:
Now that you know my story I would like to ask that anyone who was thinking of sending me flowers or other gifts should please make a donation to FORCE instead.
"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."
This wonderful community has been with me every step of my journey. I am so grateful and I have chosen to become actively involved by volunteering to be a co-coordinator of my local Pittsburgh chapter. In addition to information, support, and advocacy FORCE has started a Hereditary Cancer Research Fund.
"More than one million people in the United States carry a BRCA gene mutation or other hereditary factor that puts them at high risk for cancer. Families with inherited mutations have the highest known cancer risks. This community has a critical need for research to develop better treatment, detection, and prevention options.
FORCE has created the Hereditary Cancer Research Fund to address this critical need."
Your donations will help support this amazing organization.
Thanks so much and let’s all hope for a happy and healthy 2012!