Lynch here as well. My father his brother and their father all had it and eventually passed away. My father was first dx in 1970 before I was born and just was not vigilant about getting checked out. He never went to the doctor. He ended up with a metastatic second primary 20 years later and at that point it was 1990 and there was little to be done. I always kick myself for not starting to get scoped earlier, but I think I was in denial and thought I was too young.
When I had my initial resection in November of 2009, there were many indications of a hereditary cancer so I was tested. I have had a subtotal colectomy with an ileorectal anastomosis and a full hysterectomy. I still have my scans every six months, a flex sig to check the rest of my rectum once per year and urine cytology once per year. I still have not had an endoscopy which is recommended every 4-5 years. My younger sister also tested positive for the mutation but has been quite vigilant in getting tested. So she is doing well.
I just had another clean scan last week, so its been almost 4 years since dx and 3 years since my last surgery. My worry is my two young sons at this point.