I was diagnosed with Lynch syndrome after my brother died at 32 of colon cancer, and then they found out I had colon cancer. We had a mutation in our mh-6 gene that they had never seen in any other family at that time, and did extensive genetic testing on my mother's side, mostly everyone has that mutation on my mom's side. I have had a complete proctocolectomey because of colon cancer at 38, and they did I complete hysterectomy at the same time because they said I would have uterine cancer by the time I was 50 if they didn't, and now I have small bowel cancer at 52, and just recently diagnosed with MAC. The main thing with Lynch syndrome is that you need to be watched extremely carefully! I can't stress that enough. I have always taken precautions, and done all the testing, had EDG and sigmoidoscopy done at regular intervals, once a year on the sig, and every 3 years with the EDG, and I wish that they were doing the EDG every year because they would have caught this cancer far earlier!! I have surgery tomorrow morning, Thursday morning. I think I'm just going to pull an all nighter because I have to be there at 5:30 in the morning! Lynch is rare, but there is people with it, and some people will get maybe a Cancer and then there's others like me, that get more than one. Like I said before being proactive and being watched like a hawk is going to pay dividends when it comes to your health and happiness and well-being!! Genetic testing has come so far since they did the first genetic test on myself 14 years ago. They first thought that our family had a mutation in 2 genes, but it turned out to be only one, and that was only recently discovered. It is amazing how far they've come with genetic tests!!!
If you have any questions I'd be happy to answer them.

Angela