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I would like to share my story and my daughters story of BRCA1
My grandmother was diagnosed with breast cancer at the age of 43 and she had a radical mastectomy(called that way back in her day) on her left side. A year later she was again diagnosed with breast cancer on her right side and again a radical mastectomy. She actually lived to be 91 years old and I think doing the radical mastectomies back then was helpful.
When my sister turned 43 she was also diagnosed with breast cancer and her outcome was not as good. She passed away a year later after the cancer had traveled to her stomach and then to her brain. She was not diagnosed immediately and was told to watch the lumps that she had and that was such a mistake.
At the age of 67 my mother was diagnosed with breast cancer. By this time I had enrolled in a test study at the Geisinger Medical Center in Danville Pa. My mother passed away after the cancer turned up in other spots also.
My other sister was diagnosed with breast cancer at the age of 56. She also passed away less than a year later.
After the 5 year STAR study that I was in ended I was offered the BRCA test to see if I had the gene. It turned out that I did and was told that since I had the gene then my daughter had a 50% chance of having it also and my 2 granddaughters had a 25% chance. My daughter was tested and she also has the gene.
Because of the family history and aggressiveness of the cancer in our family we both decided to have a preventative double mastectomy back in 2006. We were seeing the same doctor and had our surgery scheduled for the same day.
We both had reconstruction afterwards and I had to have mine removed after a few years due to some complications however I am now 62 and that is a number that neither of my sisters saw.
I have 3 brothers and they were all sent letters advising them to be sure to be aware that they too could get this horrible disease along with their children. I certainly worry about my two granddaughters ages 16 and19 and am not sure at what age they should insist on getting mammograms - what do you suggest?
We still worry but not as much as if we had not taken preventative measures and we had also both previously had hysterectomies. We no longer can get mammograms but I worry that the disease could still show up someday.
I would definitely recommend to anyone who has the gene to be pro active about their care. You never know when cancer may strike.