FAP in children

In general, genetic testing can only be carried out on adults, when the individual can give permission.

In the particular case of FAP, however, because the disease can develop very early in life, the law allows genetic testing even during childhood or adolescence.

In a family affected by FAP, the children of a carrier or suspected carrier start colon and rectum surveillance by the age of 10-12 years.

Screening – typically by annual sigmoidoscopy (insertion of a tube with a camera inside the colon)- spots any new polyps and watch for adenomas that may degenerate.

Although essential to prevent disease, this is an invasive process, difficult for a child. As such, a genetic test should be done before the age of the first screening – so before the age of 10.

If the test result is positive, inconclusive or the child is not tested, he/she has to follow the surveillance plan to prevent disease. If the result comes back negative, however, the child becomes free from the uncertainty of disease and the distress of regular examinations.

Due to the high risk of colorectal cancer, once polyposis (presence of numerous internal polyps) is detected in a child, preventive surgery of the colon is recommended. The surgery, done around the age of 18-20, is crucial to reduce the likelihood of disease. This in FAP.

In families with AFAP, it is recommended that genetic testing, as well as screening, start a little later at age 18. There is a chance of starting earlier depending on the family history.