Familial adenomatous polyposis (FAP): What Prophylactic options?

Posted by nanadana @nanadana, 4 days ago

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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Colleen Young, Connect Director | @colleenyoung | 3 days ago

@nanadana, welcome. You're asking good questions. I'm tagging a few members who have experience with a colectomy like @hopeful33250 @slippinjimmy @verol65 @rjjacobsen. They may be able to share some tips on how to prepare as you consider getting a prophylactic colectomy.

Like you, @tracy326 also has familial adenomatous polyposis.

@nanadana, according to Mayo Clinic, annual exams and genetic testing are important and you're doing that. Sometimes surgery is recommended:
- Familial adenomatous polyposis https://www.mayoclinic.org/diseases-conditions/familial-adenomatous-polyposis/diagnosis-treatment/drc-20372446

rashida | @rashida | 3 days ago

In reply to @colleenyoung "@nanadana, welcome. You're asking good questions. I'm tagging a few members who have experience with a..." + (show)

@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.

bevjoy | @bevjoy | 2 days ago

I'm sorry you have FAP. I had a total colectomy 2 years ago. I really didn't have a choice. I have MAP (Mutyh-associated polyposis) which is kinda a sister to FAP, but runs in a recessive genetic pattern. I have both (biallic) of the most common mutyh genes. Someone with 1 gene has a slightly higher risk, but MAP has 2 genes and a 100% chance of colon cancer.

My total colectomy with ileo-rectal anastomosis was laproscopic, divinci robotic assisted. My small intestine is connected to my rectum internally, so no colostomy bag.

At that time, my intestine was so tortuous (long and twisting), that my colonosocopy was incomplete due to this issue. For 2 years, I was producing precancerous polyps that they couldn't reach, no matter which scope they used.

After my surgery, (158 polyps removed during my lifetime), I was so relieved to rid myself of this burden. I live a completely normal life in terms of activity, travel, etc.

My diet is my most pressing issue. I can't eat certain foods like too much spice or leafy vegetables. If I do eat irritating foods, I get too loose stools which causes irritation upon passing them. A sore butt!

I do eat fiber cereal with fruit a.m. and p.m. as this helps add bulk without the irritation. I've also had my gallbladder removed in 2008, so that comes into play also with bile acid dumping if I eat too much fatty foods.

All told, I am very happy with the outcome. Having gone thru a lifetime in fear of colon cancer, this released that pressure... I do have annual sigmoidoscopy (even tho I don't have a sigmoid, they check the rectum and the illium anastomoisis connection. I also have an upper endoscopy each year. MAP causes higher chances of other cancers, so we monitor breast (mom died of breast cancer in her 50s), thyroid ( I have solid nodules, but they're too small to biopsy).

I hope this helps. Please let me know if you have questions.

Bev