Lynch Syndrome

ABOUT LYNCH SYNDROME

This site focuses primarily on Lynch syndrome. To learn about other cancers associated with inherited genetic traits, please visit Hereditary Cancers page from the main menu.

Approximately 150,000 American men and women are diagnosed with colon cancer each year, making it the third most common form of cancer in the United States.  Additionally, over 40,000 new cases of endometrial (a form of uterine) cancer are diagnosed in the US annually. While the vast majority of these cancers are considered "sporadic," or resulting from non-hereditary factors, about 5% to 10% of colon and endometrial cancers are believed to be linked to inherited traits.

The most common of these traits are abnormal changes (or "mutations"), in any of four genes, known as MLH1, MSH2, MSH6, and PMS2. These genes are present in everyone and, when healthy, are an important part of the body's defenses against cancer.  However, certain mutations in the genes impair their normal functioning and result in sharply increased risks for cancer. This condition is referred to as Lynch syndrome, also known as as Hereditary Non-polyposis Colorectal Cancer, or HNPCC.

The risks for certain cancers in individuals with undetected Lynch syndrome are startling.  As many as 90% will develop some form of cancer in their lifetime; by age 70, up to 82% will develop colon cancer and as many as 71% of women with undetected Lynch syndrome will develop endometrial (uterine) cancer.  Other cancers, while rare, are also associated with Lynch syndrome, including cancers of the stomach, ovaries, small bowel, renal/pelvis, biliary tract, pancreas, and brain.  Additionally, some individuals with Lynch syndrome may develop sebaceous adenomas, a non-cancerous tumor of an oil producing gland in the skin.

As carriers of these mutations have a 50% chance of passing the mutation to each child, families with Lynch syndrome are typically characterized by multiple colon and endometrial cancers across multiple generations, often diagnosed before the age of 50.  Fortunately, once identified, the risks for cancer in Lynch syndrome can be greatly reduced through appropriate screening and, in some cases, surgical options. 

This website is dedicated to providing support and information for people either affected by Lynch syndrome, or involved in the care and medical management of those who are.  It is designed to be an interactive community for the sharing of stories, questions, and experiences – a place to interact with individuals like you, dedicated to raising awareness of this potentially devastating, yet highly manageable condition.

For additional information and support relating to Lynch syndrome or colon and/or endometrial cancer, please visit:

www.lynchcancers.com
www.myriadtests.com
www.fightcolorectalcancer.org