1. < Colorectal Cancer

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?

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mjaramburo | @mjaramburo | Jan 25 6:43am

Hi Sotia,
My sister was diagnosed with FAP, she had colectomy at age 35, then it develop into cancer and passed at age 52. She has 3 children, 2 of whom was also diagnosed with FAP, one already passed. The surviving son has colectomy 12 years ago , but on his latest follow up endoscopy ( 2/23 ) a number of polyps is seen around his doudenum. I wonder if there is any new treatment available like gene therapy or chemoprevention that you are aware of, any trials maybe at Mayo Clinic ? Appreciate your help very much.

Jane

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Colleen Young, Connect Director | @colleenyoung | Feb 4 4:06pm
In reply to @mjaramburo "Hi Sotia, My sister was diagnosed with FAP, she had colectomy at age 35, then it..." + (show)
@mjaramburo

Hi Sotia,
My sister was diagnosed with FAP, she had colectomy at age 35, then it develop into cancer and passed at age 52. She has 3 children, 2 of whom was also diagnosed with FAP, one already passed. The surviving son has colectomy 12 years ago , but on his latest follow up endoscopy ( 2/23 ) a number of polyps is seen around his doudenum. I wonder if there is any new treatment available like gene therapy or chemoprevention that you are aware of, any trials maybe at Mayo Clinic ? Appreciate your help very much.

Jane

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@mjaramburo, I'm sorry for the losses your family has experienced due to FAP.

According to Mayo's website https://www.mayoclinic.org/diseases-conditions/familial-adenomatous-polyposis/diagnosis-treatment/drc-20372446
Potential future treatments
Researchers continue to evaluate additional treatments for FAP. In particular, the use of pain relievers such as aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs), as well as a chemotherapy drug, are being investigated.

To find out if there are current FAP-related clinical trials at Mayo Clinic, you can contact Mayo research at:
CANCER-RELATED CLINICAL STUDIES QUESTIONS
Phone: 855-776-0015 (toll-free)

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