A new study fails to support routine pancreatic cancer screening for people at high genetic risk of the disease -- though, researchers say, at-risk individuals can still talk with their doctors about it.

About 3 percent of all cases of pancreatic cancer are what's known as familial pancreatic cancer, where the disease has affected two or more first-degree relatives -- siblings or a parent and child. Researchers have found mutations in several genes that seem to be associated with the cancer.

Pancreatic cancer, whatever the form, has a dismal prognosis, with only about 5 percent of patients still alive 5 years after diagnosis.

This is largely because the cancer is rarely caught early; its symptoms, which include weight loss, pain in the upper abdomen and jaundice, usually arise only after the cancer has spread.

So it would seem to make sense to routinely screen people in families with a history of hereditary pancreatic cancer. But researchers are still trying to figure out which tests can reliably detect the disease in people without symptoms, and which people from affected families should be screened.

We do not know yet exactly whom to screen and how to screen, explained Dr. Peter Langer of Philipps-University Marburg in Germany, the lead researcher on the new study.

For the study, reported in the medical journal Gut, Langer and his colleagues used a combination of methods -- including blood tests and several types of imaging tests -- to try to catch early tumors in 76 men and women at high risk for pancreatic cancer.

The patients were considered high-risk because they were from a family affected by familial pancreatic cancer, and either had a first-degree relative diagnosed with the disease or were carrying specific genetic mutations linked to the cancer.

Over 5 years, the researchers caught suspicious-looking growths in 28 patients through imaging tests, most often via endoscopic ultrasound.

In this test, an ultrasound probe is passed through the mouth and threaded down into the small intestine, where it is aimed at the pancreas, which sits behind the stomach.

Of those patients, seven had growths that warranted an invasive procedure to retrieve pancreatic tissue samples, while the rest continue to be monitored.

Of those seven patients, only one -- or 0.7 percent of the entire study group -- turned out to have a potentially pre-cancerous growth.

The findings do not support routine screening of people from families affected by familial pancreatic cancer, according to Langer.

However, he said, they do strongly support screening under scientific circumstances -- that is, as part of a controlled, long-term study such as this one, where the safety and accuracy of various screening measures are being scrutinized.

Langer recommended that people from families with a history of familial pancreatic cancer speak with their doctors. 

Patients or people at risk should definitely ask their doctors about what to do, he said.

Their doctors may then be able to get them into a study-based screening program, which are currently being run out of several academic medical centers worldwide, including in Baltimore, Seattle and Liverpool.

SOURCE: Gut, October 2009.