Subject: Re: Attenuated FAP
Forum: The Gastroenterology and Liver Diseases Forum

Topic Area:

Topic Area: Digestive
Hello,
I am a 38 y/o female, I have an APC gene mutation in segment 4. The diagnosis was Attenuated Gardner's uuSyndrome. I have one skull osteoma.

Colonoscopy: 2 small adenomatous polyps removed from right colon

EGD: Small area of stomach polyps, Duodenum was clear

Abdomen & pelvic CT: Normal

My father 65 has had multiple abdominal surgeries for this syndrome. Presently he has metastic liver cancer from his colon. Paternal grandfather 88 has visible skull osteomas and palpable abdominal masses. Brother 40 has jaw osteoma and 4 polyps (1 adenoma) removed.

For unrelated orthopedic conditions I have been on Daypro 1200mg 6/95-7/98, Sulindac 400mg 8/98 (stopped, ulcer), Arthrotec 150mg 10/98-1/99 (stopped, ulcer), Celebrex 200mg 2/99 to present. I am wondering if my use of NSAID's could have slowed down the FAP progression? I know there have been a past study on Sulindac and an unpublished recent study of Celebrex, but I am unaware of any on Daypro or Arthrotec.

My GI doctor recommends retesting in 2 years, does this sound correct? I'm asking because my father's cancer was very aggressive, originated in his cecum and developed to 4th stage
over a 14 month period between colonoscopies.

I'm so pleased that this forum is available to us!

Thank you, Tonya

Dear Tonya,

Studies in familial adenomatous polyposis and the use of non-steroidal inflammatory drugs and aspirin have generated much enthusiasm. Sulindac has been shown in several studies to decrease the number and size of colorectal adenomas in patients with FAP. The mechanism by which sulindac causes polyp regression in FAP is unknown, but felt to be secondary to its ability to inhibit an enzyme called cyclooxygenase (COX 2). This enzyme is important in the formation of compounds called prostaglandins. Prostaglandins have a variety of effects throughout the body. Since other NSAIDS work by a similar mechanism, it is possible that this effect is not necessarily unique to sulindac. On the other hand, sulindac does not totally eliminate the presence of adenomatous polyps. Therefore, the risk of colorectal cancer is still present and one cannot currently recommend the use of sulindac alone. Colectomy still remains the best chance to prevent colon cancer in patients with FAP or Gardner's syndrome.

The current recommendation for the screening of patients with attenuated familial adenomatous polyposis or Gardner's syndrome includes a colonoscopy beginning at the age of 10-12 years and then performed every 1 to 2 years until age 40 and every 3 years thereafter. If duodenal disease is mild, surveillance endoscopy is recommended every 2 to 3 years. I hope you find this information helpful.

This response is being provided for general informational purposes only and should not be considered medical advice or consultation. Always check with your personal physician when you have a question pertaining to your health.

If you would like to be seen at our institution please call 1-800-653-6568, our Referring Physicians Office and make an appointment to see Dr. Muszkat, one of our experts in Gastroenterology.

HFHSM.D.-ym
*Keywords: familial adenomatous polyposis, Gardner's syndrome, NSAIDS

Follow Ups:

• Attenuated FAP Tonya 4/26/1999 (1)
  • Re: Attenuated FAP HFHSM.D.-ym 4/27/1999 (0)

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