New family registry provides early identification for those at risk for colorectal cancer

May 06, 2001

Genetic testing, counseling available for at-risk individuals

Efforts to identify, treat, and improve the outcome of hereditary or familial colorectal cancer have led physicians at Rush-Presbyterian-St. Luke's Medical Center in Chicago to set up the Sandra Rosenberg Registry for Inherited and Familial Colorectal Cancer. The registry is based on collecting and following information from patients and family members who have, or had, colorectal cancer.

"One of the greatest impacts of a registry is its ability to identify relatives at risk for a particular syndrome and reduce the incidence of cancer in these individuals by ensuring that they are identified, screened, and treated in a timely fashion," says Dr. Marc I. Brand, director of surgical services for the Sandra Rosenberg Registry.

"Learning that you carry the gene for cancer may save or extend your life, particularly if this knowledge prompts you to undergo recommended surveillance tests and treatment in order to identify, and eliminate, pre-cancerous changes or early cancer before they have a chance to spread."

Dr. Brand and Dr. John Losurdo, director of medical services for the registry, believe the benefits of a registry for hereditary colorectal cancer syndromes are realized by patients, their families and society. "The Rush Registry provides a comprehensive network of resources available to patients and their families: patient care, education and counseling; family enrollment and identification of at-risk relatives; initiation and management of clinical screening programs, and provisions for genetic testing are all part of the program."

Types of hereditary colon cancer include heredity nonpolyposis colorectal cancer (HNPCC) and familiar adenomatous polyposis (FAP). Inheriting the HNPCC gene increases the risk of colon cancer by 80 percent is responsible for three to five percent of all colorectal cancers.

HNPCC-related cancers often develop before age 50, so early screening is advised. FAP-related cancers appear by age 20. Detection at an early age is vital because without surgery, FAP is always fatal.

Colon cancer is 90 percent curable when discovered early through screening tests and before symptoms appear, and at least 30 percent of all colon cancer is believed to be hereditary. Registries and regular surveillance help saves lives by prevention and early detection of hereditary colon cancers.

According to the American Cancer Society, colorectal cancer is the third most commonly diagnosed cancer and the second leading cause of cancer-related deaths for both men and women in the United States. For this reason, the American Cancer Society recommends that everyone over the age of 50 should be in a colon cancer-screening program. About 90 percent of people found to have colorectal cancer are 50 years of age or older. Each year colon cancer kills more men and women (56,300) than prostate cancer kills men (31,900) or breast cancer kills women (40,800.)

"This is one cancer where screening clearly has benefits by saving lives. Even when people have a history of colorectal cancer in their family, they may be able to prevent the disease, and should ask their doctors about early detection and prevention. For example, people with a family history of colorectal cancer may benefit from starting screening at a younger age and having screening tests done more often than people without this risk factor," advises Dr. Brand.

Patients and their families have already signed up for the registry, and it is a complimentary service without any fees. It does not involve taking experimental drugs, procedures, or devices. Families provide written medical histories and meet with a registry staff physician for group and individual genetic counseling sessions.
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The American Society of Colon and Rectal Surgeons in Illinois reports there are 17 Inherited Colorectal Cancer Registries throughout the world, noting the Rush Registry is the only one in Illinois. For more information on the Rush Registry, call 312-942-6543.

Rush University Medical Center

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