I have been asking all these questions and finally I met with a FAP colon/rectal specialist who is the one that actually brought Dr. Boland to Texas to work on FAP genetics. He said he would never have me remove my colon without going through the genetics to know what it is I actually have. He has patients like me all the time and has done an IRA and has seen severe dysplasia go away, nobody knows why but it has happened. IF cancer has not been found… Everyone isn’t sure since it seems that this large polyp that has the dysplasia was left inside. His first thing is to remove that and test the polyp and see it for himself then to look at where my polyps have stopped forming in my colon since some of the colon can be saved. They also remove extra lymphnodes around the rectum. These are things I have NEVER been told about. He is one of the best and I am glad I waited to see the 3rd surgeon. He believes I don’t have FAP but a different gene like AFAP or one of the others, knowing that before planning the course of action for surgery is crucial. Some people never form more poylps who have AFAP.
He told me you are the boss, this is your body and nobody should put a gun to your head without having everything examined and mapped out. I will know Monday evening what is next.