Colorectal Cancer Registry Revitalized

Sept. 30, 2010 – Washington University colorectal surgeons have some good news for patients with inherited colon cancer syndromes: despite their condition, advanced cancer is preventable. To bolster prevention, the surgeons have expanded their efforts on a cancer registry that began more than 30 years ago.

With more than 50,000 deaths per year, colorectal cancer is the second-leading cause of cancer-related death in the United States. Up to 5 percent to 6 percent of colon cancers result from inherited syndromes, the most common of which are familial adenomatous polyposis (FAP) and hereditary nonpolyposis colon cancer (HNPCC).

In classic FAP, patients develop benign polyps as early as their teenage years; if left untreated, these polyps turn cancerous at about the age of 40. Those with HNPCC are at higher risk for colon cancer and for endometrial cancer (in women) and other malignancies.

“Patients with FAP will inevitably develop colorectal cancer if the colon is not removed,” says colorectal surgeon Anne Lin, MD. “The cancer can be prevented by removing the entire colon and rectum – with connection of the small intestine to the anus via construction of a new rectal pouch. In HNPCC, vigilant cancer screening is essential to avoid occurrence of aggressive cancer.”

In the past year, Lin and coordinator Oscar Wolff have worked to expand the efforts of the Washington University Inherited Colon Cancer Registry to enroll patients and family members with the syndromes, set up regular screenings, offer educational events and collect research samples.

A high-risk colorectal cancer registry was initially established by Ira Kodner, MD, the Solon and Bettie Gershman Chair in Colon and Rectal Surgery, in the 1970s with the support of the Rotskoff and Quicksilver families, which were both affected by colon cancer. Kodner admires the Rotskoffs – with members of three generations undergoing monitoring and surgical treatment for FAP – as a family that did not let the disease curtail their lives.

Kodner believes the registry is poised to provide a great service to the 250 patients with FAP and HNPCC who are part of the registry, their family members and others who join.

“In a recent meeting organized through the registry, a lot of families were able to share their experiences,” Kodner says. “The registry is also a great resource for helping us inform patients should new treatments or medications come along.”

From the Department of Surgery 2010 Annual Report