← Return to BRCA2 and MSH6: Family finds it hard to discuss cancer & feelings

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@silentfaith

My sons are 43 and 46. My older Sons wife had Breast cancer at the same time as my sister, she was 39, although she is not our bloodline My two Granddaughters have a Mother With BRCA and a Father with CHEK2. They want to be tested as soon as they are settled in a job with good insurance as i was not covered in 2015. My oldest granddaughter is 21 she was hired on as firefighter at age 19 and she is ready to be tested, and after seeing her mother go through Breast cancer she has already made up her mind to Do Prophylactic Bilateral Mastectomies if she is positive for either before she is 30. The 19 year agrees that is also the way she will go. They will both have to be tested for both gene mutations. Both Sons get colonoscopy every two years. And now since they are at 27% for colon cancer they are yearly screened for that.
My younger son has three boys so he will make sure at the appropriate time that they are tested. It’s amazing that many doctors still have never heard of this gene mutation. When I tested positive in 2015 there were only 8 positive for CHECK2 in the Mayo system, wonder how many their are now? Also wondering if mayo checks for CHEK2 with
all Breast Cancers now? And also wondering if insurance is covering Prophylactic Bilateral Mastectomies now? I Pray they are. I am now having bladder and kidney problems so am taking care of what ever comes of it.

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Replies to "My sons are 43 and 46. My older Sons wife had Breast cancer at the same..."

If you are on regular Medicare, that will pay for bilateral mastectomy (80%) I think. I just had one with reconstruction. I do not know how Medicare Advantage plans pay. I think with the emphasis on genetics and targeted therapy we will be finding more genetic mutations for all parts of the body. I have the CHEK2 and people in my family have it. I believe that my genetic test looked for 17 mutations. I do not know if there is a test for just BRCA1 and 2. I also believe that genetic testing should be done with the first BC. That way you have the ability to make informed choices on treatment. If a person has a genetic component, they can opt for mastectomy at the time of the first occurrence. I had DCIS in 2007 and IDC in 2018 and genetic testing in 2019. I had lumpectomies both times. I did not have to dwell on whether or not to take the mastectomy route. I had reconstruction at the same time. Do your research on good doctors, plastic surgeons and choice of reconstruction. I had diep flap and the only thing missing now are the nipples which will be formed and tattooed. I have sensation in the skin of my new breasts, but will not have it in my nipples. You need to find an excellent plastic surgeon or you could have problems. I think it is easier to find the plastic surgeon first and he can possibly hook you up with a surgeon...I think they know surgeons that do good work and know they can have a better outcome.