Familial Adenomatous Polyposis - FAP

Introduction

This information is intended for anyone affected with FAP, either directly or indirectly. Please share it with your family and with anyone who wants to learn more about this rare precancerous genetic disease. Although FAP may affect only 1 in 10,000 people, it is considered a model for cancer prevention throughout the world. The key to treatment for FAP is education, that is, learning about early diagnosis and appropriate follow-up. The goal of this guide is to help you improve your quality of life by taking an active role in your own health care and that of your family.

What is FAP?

Familial means that it runs in families. Each child of an affected parent has a 50 per cent risk of inheriting the disease gene.

Adenomatous is a type of mushroom-shaped growth or polyp which may be precancerous.

Polyposis is a condition where 100 or more polyps can form in the large intestine.

The word "polyp" refers to a lump of cells which form a tissue mass. A polyp must be checked under the microscope (biopsied) to determine whether it is harmless (benign) or precancerous (premalignant). In FAP, abnormal cells form over time and clump together into precancerous adenomas.

Adenomas may be as small as 1-2 mm when they form or as large as 4-5 cm when they change to cancer. Adenomas develop on the surface lining of the intestine, particularly the large intestine.