HNPCC & You

It's very important for families with possible Lynch Syndrome (HNPCC) to be evaluated by a genetic counsellor. A very thorough family history is crucial to evaluating a specific family. This usually involves obtaining medical reports from other family members who have had certain cancers. The genetics centre where your family is being evaluated will take care of this.

It is unusual for patients with HNPCC to develop colorectal cancer in their teenage years. The average age of colorectal cancer in most families with HNPCC is in the early 40's. However, there have been some patients with HNPCC who have developed colorectal cancer in their teenage years. We take a careful family history to see if there are any young cases of cancer in the family. It is important to watch for any unusual bowel symptoms in young people at risk for having HNPCC. Unusual bowel symptoms are blood and/or mucus (looks like saliva) in the stool or on the toilet paper.

In general, we recommend beginning colonoscopy between the ages of 20-25, but we may start earlier if someone in the family has colorectal cancer or an adenomatous polyp younger than age 30-35.

For example, if a father had colorectal cancer at are 22, we recommend his children have a colonoscopy at age 12 (10 years younger than the earliest colorectal cancer diagnosis in the family). These guidelines are for someone who is feeling well, but if someone is having bowel problems we recommend following up with a doctor right away.

These screening guidelines have been developed by the Canadian Association of Gastroenterology and the Canadian Digestive Health Foundation (February 2004).