Linny50S's Story

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"I have a very strong family history of breast cancer and tested positive for [the] NBN mutation. All of my maternal aunts (two) and my mother had breast cancer and later died. I had my mother bank her blood in case another gene mutation was discovered (she did not have BRCA). Her blood tested positive for the NBN mutation. All of my maternal cousins (four) have/have had breast or prostate cancer linked to NBN, and two cousins were tested and found to be NBN positive. My youngest sister is also NBN positive. My younger brother tested negative. My younger brother has had colon cancer at age 54 and my younger sister died of colon cancer at 55.

"I had a prophylactic bilateral mastectomy on Sept. 9, 2015 with reconstruction started. It is now Feb. 28, 2016 and I have to wait until March 24th for my implants, due to having to have my expanders replaced because of a leak and not losing my drain tubes until Dec. 29th! I do not regret the mastectomy but I hate the pain and discomfort of these expanders. Reconstruction is not for the faint of heart. The process was long and complicated.

"It was difficult to get legal possession of my mother's banked blood but I recommend that every cancer patient do this for future discoveries of mutations. I was lucky that my insurance has covered all testing and my surgeries. My brother's insurance would only cover the NBN mutation.

"I am sick with worry that I passed this to my daughters/granddaughter. My other surviving brother who had colon cancer does not want to be tested for any gene mutations and my counselor and my cousins counselors feel it is important that he is tested. He has three daughters and six grandchildren who should also know.

"I chose to have the mastectomies because I felt that increased monitoring was only going to catch cancer and I would need chemo and radiation later. My mind is so much more at ease since the surgery; now I just need to get my implants and feel better!"

-- Linny50S, tested positive for the NBN genetic mutation

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