Can Pancreatic Neuroendocrine Tumor Be Found Early?

Pancreatic neuroendocrine tumors (NETs) are hard to find early. The pancreas is deep inside the body, so small tumors can’t be seen or felt by health care providers during routine physical exams. People usually have no symptoms until the cancer has already spread to other organs.

At this time, no major professional groups recommend routine screening for pancreatic NET in people who are at average risk. This is because no screening test has been shown to lower the risk of dying from this cancer. (Screening means testing for a disease in people who have no symptoms or history of the disease.)

Genetic testing for people who might be at increased risk

Some people might be at increased risk of pancreatic NET because of a family history of the disease (or a family history of certain other cancers). Sometimes this increased risk is due to a specific genetic syndrome.

Some of the gene changes that increase pancreatic NET risk can be tested for. Knowing if you are at increased risk can help you and your doctor decide if you should have tests to look for pancreatic NET early, when it might be easier to treat. But determining whether you might be at increased risk is not simple. Talking to someone with experience in hereditary cancer syndromes such as a genetic counselor, geneticist, or an oncologist (doctor who treats people with cancer) is often helpful.

The American Cancer Society strongly recommends that anyone thinking about genetic testing talk with a genetic counselor, nurse, or doctor qualified to interpret and explain the test results before they proceed with testing. Before deciding to be tested, it’s important to understand what the tests can − and can’t − tell you, and what any results might mean.

Genetic tests look for mutations in your genes that cause inherited conditions. The tests are used to look for these inherited conditions, not the cancer itself. Your risk may be increased if you have one of these conditions, but it doesn’t mean that you have or definitely will get pancreatic NET. 

Testing for pancreatic neuroendocrine tumor in people at high risk

For people in families at high risk of pancreatic NET, such as MEN1 syndrome, tests for detecting cancer early may help. Although definitive screening guidelines for people with the MEN1 gene or their family members are not available, doctors have been able to find early, treatable pancreatic NETs in some members of high-risk families with these tests. Some tests that might be considered include:

• An endoscopic ultrasound of the pancreas every few years.
• A MRI of the pancreas every few years.
• Checking blood levels of certain hormones such as insulin, prolactin, gastrin, and calcium every few years. (Sometimes, changes in hormones can occur 10 years before the tumor is found by clinical symptoms.)
• An Octreoscan on a regular basis.