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Familial adenomatous polyposis (FAP): What Prophylactic options?

Posted by nanadana @nanadana, Dec 19, 2025

20 years ago, my mother was diagnosed with Stage IV colon cancer at age 52 and passed away at 54. I have been diligent about frequent colonoscopies since, and my genetic testing revealed that I have FAP. I am now age 54, and have been having colonoscopies every 6 months for two years, with over 50 precancerous polyps removed in that time. My surgeon is strongly recommending colectomy, but the NP with my gastroenterologist has commented that seems drastic. With FAP, I have read that colon cancer is 100% likely. I am afraid of the major life changes a prophylactic colectomy will bring, and I would still have to undergo regular upper endoscopy screenings. Could anyone who has had a prophylactic colectomy due to FAP+ advise me on what life is really like after this procedure, and if they are glad they did it or regret having done it ?

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lisag03 | @lisag03 | Mar 25 8:05am
In reply to @rashida "@colleenyoung thank you for the FAP information link. I suspect I may have a desmoid tumour.I..." + (show)
Profile picture for rashida @rashida

@colleenyoung thank you for the FAP information link. I suspect I may have a desmoid tumour.I had an abdominal MRI done recently and the surgeon who had ordered it now wants me to have an abdominal CT scan. I keep forgetting to ask my doctor and the surgeon what can a CT scan show that an MRI wouldn’t? I have always assumed an MRI shows more detail than a CT scan. 🤷🏼‍♀️

I am reluctant to have the CT scan because the last time I had an abdominal CT scan I broke out in hives after drinking the CT contrast and was told I may be allergic to it, albeit not anaphylactic.

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@rashida I have had numerous CT scans (too many to even count) with no issue. However, in one day, I had two CT scans, and had an almost anaphylactic response (shaking; high BP, etc)
From that point on, I premeditated with a steroid the day before and day of, and then a Benadryl

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ammiatx | @ammiatx | Mar 25 11:29am

I have FAP. I had prophylactic surgery at 20 and lived 27 years with no cancer. It showed up at 47, treatments were with MD Anderson, I was diagnosed with stage3b rectal cancer. And am still alive at 66.

The NP is wrong. Get the surgery, an ileostomy is rather easy to live with. My sister does!

And have any children of yours should have dna tests.

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ammiatx | @ammiatx | Mar 26 7:28am
In reply to @lisag03 "@rashida I have had numerous CT scans (too many to even count) with no issue. However,..." + (show)
Profile picture for lisag03 @lisag03

@rashida I have had numerous CT scans (too many to even count) with no issue. However, in one day, I had two CT scans, and had an almost anaphylactic response (shaking; high BP, etc)
From that point on, I premeditated with a steroid the day before and day of, and then a Benadryl

Jump to this post

@lisag03 Yup! Been there, I do that! No steroids though now.

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