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familial adenomatous polyposis (FAP)

Posted by Anonymous-22acea9b in Just Want to Talk, Sep 26, 2012

Hi Everyone,

My 29 year old husband just got diagnosed with Familial Adenomatous Polyposis, otherwise known as FAP. This basically means that he has thousands of Pre-cancerous polyps in his colon, rectum, and also stomach. Though he has no cancer now, we're told that his chances of colon cancer is 100% and that he will likely need a Colectomy surgery done before the end of this year before this thing turns cancerous. We live in Hawaii and the doctors here are telling us that we would be better served to go to a major hospital (like Mayo clinic, Cleveland clinic, Johns Hopkins).

It's a little overwhelming trying to "shop" for a surgeon that is familiar with patients with FAP and has completed surgeries of this kind...any suggestions?


Posted by @ihatefap, Oct 30, 2012

i was diagnosed with FAP 5 yrs ago when i was 35. I had 96% of the large intestine and colon removed. I had a osomy bag for 12 weeks and then had the reversal so i could use the restroom SOMEWHAT normal. I go every year for upper and lower oscopy. With FAP it never goes away I currently now have poulips in my upper G.I. so im gonna turn to mayo for help


Posted by @anon02154144, Jun 3, 2013

Mine is strange. It presents like FAP but the test for it came back negative. I have polyps in the upper also and they have gone from normal to mild dysplasia. I have a 4 year old and am hopeful I haven't given it to him. Appt in Scottsdale July 9th


Posted by @apriltbo1995, Jan 16, 2013

Any of those clinics are great. I was Dx with FAP in 1996; total colectomy w/JPouch. I am currently seen at Mayo Jacksonville. The best thing you can do is educate the both of you on FAP and extra colonic conditions that come with FAP.

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