Hi bevjoy and others. I also have MAP as did all 3 of my siblings, really rare that all 4 of us got it. At age 44 my brother got colon cancer and was thought to have FAP (lived to age 76 and died of unrelated issue). My sisters and I got preventive subtotal colectomy surgery about 30 years ago. We were just left with some sigmoid colon and rectum. And we all got yearly scopes and upper endoscopies every 2 years with a few polyps found each year. Also a pill cam every few years. And genetic testing revealed MAP. One of my sisters died about 10 years ago of cancer of unknown origin, and ironically her colon was not affected. Currently I am 69 and after 32 years of no cancer, this year I got colon cancer in my sigmoid colon, and 2 weeks ago got a colectomy with retaining my rectum. I will still need to be scoped for life.
I learned along this journey that MAP can lead to higher risk of thyroid cancer among others. I get a thyroid ultrasound every year. And my son was tested as a teen and he was found to be a carrier (has 1 mutation). I have an appt. w/genetic counselor down the road to get all the latest updates on MAP and carriers.
Best to everyone on this journey!