Last November my mom found out she had the BRCA 2 gene mutation. My reaction to her was, ”Aren’t you scared, are you ok?” Neither she nor I had any idea what being BRCA2 meant. She replied, “I’m fine, I’ll have more surveillance and I will be checked for breast cancer twice a year instead of once”. That was the end of it. We had just found out that my dad’s cancer had metastasized after only 6 months from his wonderful diagnosis of being cancer free. This new diagnosis was devastating and my mom was overwhelmed with concern and fear. While my dad, mom, brother and I sat waiting for my dad’s doctor in the offices at Penn, my brother and I filled out the paperwork to have the BRCA testing. My mom had previously called close relatives and we went from thinking we had no breast or ovarian cancers in our family to realizing we were “pretty much surrounded by it” as our doctor at Penn said. I set up the appointment to be tested feeling confident that there was a 50% chance I WOULDN’T have the mutated gene. I had to cancel 3 times. I thought that this was not an important test. I felt fine. I went to be tested and a genetic counselor sat with me for an hour explaining what a mutated BRCA gene meant. They won’t even allow the blood test until after you have the meeting with the genetic counselor. The rest was a whirlwind of activity. I found out I was BRCA2 positive, the same mutation as my mom. I did some quick, extensive research and got through all of this with the help of FORCE. FORCE (Facing Our Risk of Cancer Empowered) is a group of wonderful, compassionate individuals who all carry a significantly higher risk of developing cancer or have battled this devastating disease. Due to all of my research my mom had an oophorectomy in May. That means she had her ovaries and fallopian tubes removed prophylactically. She said that I could have quite possible saved her life by all of my research and sharing of information with her. The chance of getting breast and ovarian cancer as a individual with a mutated BRCA gene is quite high..shocking, startling and very scary!!!! After a few months of numerous doctor appointments, tests and struggling back and forth with my decisions, I have decided to take the route of risk reducing oophorectomy on June 1st and prophylactic mastectomy on June 30th. These decisions have NOT been easy but as the genetic counselor says, “This is NOT a death sentence, BUT A LIFE SENTENCE” I NOW HAVE THE INFORMATION TO PROTECT MYSELF AND LIVE A LONG AND HEALTHY LIFE.
The support of family and friends has been unbelievable…but not a surprise from so many of you that I love so dearly. The shock has been the outpouring of help from people I don’t even know from FORCE!!! (As I write this I start to cry). I have had people meet with me in person and over the phone and spend hours just talking. I’ve had complete and utter strangers offer to come to the hospital so I could have a friend there. Every question imaginable (no matter how embarrassing) has been answered from total strangers. This is a group that I feel completely indebted to and thankful to have in my life. My plan when all my surgeries are over is to help others who have recently tested positive for the gene just as these extraordinary women have helped me.
I’m writing to you today with a hope. My goal is to give back to FORCE in any way I possibly can. As uncomfortable as it is, I’m asking for help from all of you. Many of you have asked how you can help and what you can bring me when I am home from the hospital. IN LIEU OF flowers and gifts, what I want is for you to make a donation to FORCE. I truly feel so unbelievably grateful to this group of incredible women who were ALL so willing to give of themselves and their time to me, a complete stranger, during what, at times, was a devastatingly difficult journey. Thank you FORCE and thank you to all of you for whatever you can do to support my efforts in giving back to this wonderful, supportive organization.
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