familial adenomatous polyposis (FAP)

Posted by Anonymous @anon68188963, 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?

Interested in more discussions like this? Go to the Colorectal Cancer group.

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

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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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@ihatefap

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

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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

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@ihatefap

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

Jump to this post

MY mom had FAP. I have it.my name is kathy. my only brother has it. his daughter had it and did not have colon removed and became cancer colon liver chest head. she was only 32 and past away in 2014. She had three children and 2 out of three has it. my youngest daughter has it and age 18 at Duke Hospital had large intestine removed and has a j pouch. my brother and I had surgery to remove colon at Lahey Clinic outside of Boston, Mass in 1984, The surgery was new. we live in N,C, both have a j pouch. My granddaughter was tested for the gene has a infant and does not have it. my oldest daughter was tested does not have it. since 1984 I have had about 30 bowel blockages and in hospital with eg tube. my brother has never had one. he did not keep his scopes up and had so many poylps , the dr reverse his surgery.He has pouch on outside. he has also developed them in his throat and stomach. he had a lot of surgeries. He can not eat much now and they have done all they can do for him. My mom had almost all of her colon removed except few inches in 1960. She did not keep up scopes and later in life got colon cancer. if you have FAP you must keep up your yearly or 6 months scopes with or without surgery. kathy martin

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@martinkda

MY mom had FAP. I have it.my name is kathy. my only brother has it. his daughter had it and did not have colon removed and became cancer colon liver chest head. she was only 32 and past away in 2014. She had three children and 2 out of three has it. my youngest daughter has it and age 18 at Duke Hospital had large intestine removed and has a j pouch. my brother and I had surgery to remove colon at Lahey Clinic outside of Boston, Mass in 1984, The surgery was new. we live in N,C, both have a j pouch. My granddaughter was tested for the gene has a infant and does not have it. my oldest daughter was tested does not have it. since 1984 I have had about 30 bowel blockages and in hospital with eg tube. my brother has never had one. he did not keep his scopes up and had so many poylps , the dr reverse his surgery.He has pouch on outside. he has also developed them in his throat and stomach. he had a lot of surgeries. He can not eat much now and they have done all they can do for him. My mom had almost all of her colon removed except few inches in 1960. She did not keep up scopes and later in life got colon cancer. if you have FAP you must keep up your yearly or 6 months scopes with or without surgery. kathy martin

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Hello @martinkda and welcome to Mayo Clinic Connect. Thank you for joining this discussion and sharing your vast family history with FAP so that others can learn from your experience.

What you've shared is really so important with regard to follow up care it seems. Can you share what you do, personally, or what has been recommended for you in terms of frequency of scopes?

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