People who have a genetic mutation for hereditary non-polyposis colon cancer (HNPCC), also known as Lynch Syndrome, have a very high risk of developing colon or rectal cancer in their lifetime.  Now research shows that 1 in 25 mutation carriers will also face small bowel cancer during their lives.  Their lifetime risk of small bowel cancer was 4.2 percent.

Researchers in the Netherlands studied 1,500 people from 190 families who carried one of the inherited genes associated with HNPCC.  They found 28 cases of small bowel cancer.  The cancer was diagnosed at an average age of 52, although time of diagnosis ranged from age 23 to 69.

Given the fairly low risk, doctors do not recommend invasive and difficult enteroscopy screening for small bowel cancers in all HNPCC mutation carriers.  However, as video capsule endoscopy techniques develop and become cost effective, they might provide a method of screening.

Small bowel cancer should be considered in people with HNPCC who have abdominal pain or anemia.

There was no difference in small bowel cancers between men and women or between patients with a MLH1 or MSH2 mutation. None of the patients with an MSH6 mutation in the study developed small bowel cancer.

Previous colorectal cancer or family history of small bowel cancer did not increase risk.

G L ten Kate and colleagues at the Dutch HNPCC-Registry the Leiden University Medical Centre wrote,

Approximately, one out of 25 mutation carriers will develop SBC during life. No specific risk factors were identified. The risk appeared to be too low to advise screening by means of an invasive burdensome procedure like double balloon enteroscopy. However, screening by a non-invasive procedure (videocapsule endoscopy) might be considered if future studies will show its cost effectiveness. In patients with unexplained abdominal complaints and/or unexplained iron deficiency anemia SBC should be considered.

SOURCE:  ten Kate et al, GUT, Volume 56, Number 9, September 2007. 

The 2008 Colondar is ready!  The Colondar models — all diagnosed with colon or rectal cancer under the age of 50 – bare their surgical scars for the camera and tell their stories  to raise awareness that colorectal cancer can be diagnosed in young adults.

Colondars are a project of the Colon Club, an organization of young colorectal cancer survivors and their supporters whose main goal is to educate as many people as possible, as early as possible, about colorectal cancer in interesting and out-of-the-box ways.

Colondars cost $15.00 and can be ordered online now.

Erika Kratzer posed for the Colondar cover.

The Colon Club says,

The 2008 Colondar is another artistic calendar, once again featuring twelve beautiful colorectal cancer survivors, all diagnosed under the “stereotypical” age of 50. The Colon Club’s 4th edition of the Colondar shows the strength and spirit of these survivors while helping to raise awareness and funds in the fight against their disease, the second leading cause of cancer death in the United States, and one that no one wants to talk about. Each model became involved in the Colondar in hopes that sharing their photo and story would inspire and educate, showing that colorectal cancer is a disease that can affect anyone at any age.

Ray Beckler is Mr. November.  He was diagnosed at age 47 after being told for several years that his pain and bleeding could not possibly be colon cancer because he was “too young.”  He’s now a five year survivor who uses humor and his personal experience to help others diagnosed with colorectal cancer as part of the ACOR  Colon Discussion List.