There are so many stories on FORCE and so many members willing to share their experiences. We hope these profiles can help you connect with our community and get advice from people like you!
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.
After many rounds of chemo, I have just begun a PARP inhibitor trial. Because PARP inhibitors have been particularly effective on those with the BRCA mutation, I am hopeful that this will work for me. I rode my bike 73 miles today in a women's ride for breast and ovarian cancer research. Last year, after having chemo the day before the ride was harder--so I'm hoping with the PARP not only will be effective, but have fewer side effects.
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.
It's now more than 3.5 years later. All the girls are married, and I just went to Chicago to celebrated my first grandchild's first birthday!
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!
Thinking back, I had some urinary track issues about a year before my emergency surgery. I have wondered if the cancer had been brewing at that time. If I had know more, I would have pursued the ovarian cancer issue sooner.
When I was first learning about the BRCA gene, the FORCE website was very helpful in acquiring knowledge.