Dorothy, Salt Lake City, Utah
I am BRCA 2+ and have had Primary Peritoneal Carcinomatosis for 3.5 years. Two sister are also BRCA 2+ and two are not. My mom had breast cancer.
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On vacation 3.5 years ago, after riding my bike 75 miles around Lake Tahoe and then 40 miles in the California wine country I woke up in a cabin in Yosemite with a large lump in my tummy. It turned out to be a baseball-sized pocket of air trapped in my colon. After emergency surgery, they could not determine the type of cancer, so my first chemo was Carbo/Gemzar. Eventually my oncologist figured out it was PPC. After being diagnosed with PPC, I chose to be tested for the BRCA gene because my mother had died of breast cancer and one sister had both breast and ovarian cancer. I have three daughters, one has been tested and is negative. I am praying that's true for the other two as well.
The hardest part of my journey
I think the hardest part of my journey was the shock of finding out that I had stage IV cancer. Because it was "unidentified primary" and the lab tests seemed to indicate that it was bile duct cancer, I was told that I probably had 2 months to 2 years to live. My daughter had planned a wedding for the next year, and moved it up to be sure I would be around for it. Thinking that I would never see my other two daughters marry and never see grandchildren was hard.
If I could do it over again
I have had a great oncologist who has kept me healthy for these 3.5 years. I still work and ride my bike, play my violin in a symphony, usher, and am active in church. However, we are running out of chemos, so we were researching PARP inhibitor trials. We had been hoping one would open up in Salt Lake City so I wouldn't have to travel. Just three weeks ago, one opened up at the Huntsman Cancer Institute and I am it's first patient!
My participation with FORCE
When I was first learning about the BRCA gene, the FORCE website was very helpful in acquiring knowledge.
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