"From the time I was very little, I knew that the women in my family died of breast cancer. My mom died from it in 1990 at the age of 46. Her mother had breast cancer, her mother’s mother and so on . . . going back at least four generations. When my mom died, her oncologist said they believed there was a hereditary aspect to the disease and the Mayo Clinic (here in Minnesota) was doing research to see if preventative surgery would reduce the risk for women with strong family histories. So in 1993 (at the age of 30) I had a bilateral prophylactic mastectomy. I faced a lot of criticism from folks who didn’t understand why I would do something so drastic but I felt good about my decision, and I was hopeful that it had made it possible for me to potentially avoid the breast cancer legacy in my family.
The BRCA gene mutations were discovered not long after my surgery. I talked to my doctor about getting tested, but there were many barriers in those early days including costs and worries about job and insurance discrimination. Since I’d already had preventative surgery we thought the purpose of testing would be for my daughter, and since she was only a toddler we figured I had plenty of time to get the testing done. Fast forward to the fall of 2010 when my world was turned upside down by the shocking diagnosis of advanced ovarian cancer. What my doctors and I had not fully understood was that the inherited “BReast CAncer” (BRCA) gene also carried a high risk of ovarian cancer – a cancer not on our minds since I was so young and it had never been seen in my family history.
I believe my story could have been different . . . if I had only known about FORCE earlier . . . and therefore I’m trying to do my part to make sure there are fewer people with a story like mine!
My genetic counselor gave me a copy of the FORCE newsletter and I discovered this incredible organization. I soon applied to become an Outreach Volunteer and Peer Support Group Leader. Before you know it, I was attending the Annual Conferences, became a Peer Navigator, FRAT Volunteer, worked on special projects and began helping with fundraising!
FORCE has been an invaluable resource to me and my family (my 26 year-old daughter and several of my cousins also have the BRCA1 mutation). My ovarian cancer came back in 2014 and persisted after another surgery and 18 weeks of chemo – darn sneaky bugger! But through my involvement in FORCE I have access to information on the newest targeted treatments and was able to enroll in a PARP inhibitor clinical trial which has kept me stable for over a year and enjoying a wonderful quality of life. (I travel from Minneapolis to San Francisco every 4 weeks in order to participate in the trial, but believe me, it is worth it!)
My personal philosophy is that although I did not choose to be on this HBOC journey, I can choose HOW I travel it. I refuse to live in fear of the “what-if's” and choose instead to live with joy and appreciation; and part of that appreciation is choosing to be an active part of this inspiring FORCE community!"