Can Pancreatic Neuroendocrine Tumors (pNETs) Be Found Early?

Pancreatic neuroendocrine tumors (pNETs) are hard to find early. The pancreas is deep inside the body, so health care providers can't see or feel the tumors 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 pNET 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 for pNET

Some people might have a higher risk of pNET because of a family history of the disease (or a family history of certain other cancers). Sometimes this increased risk is from a specific genetic syndrome.

Some of the gene changes that increase pNET 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 pNET early when treatment might be more successful. But determining if 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 − show 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.

Tests for  pNET in people at high risk

For people in families at high risk of pNET, such as those with MEN1 syndrome (increases the risk of pancreas, pituitary, and parathyroid tumors), 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 pNETs 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.
• An 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 these hormones can occur 10 years before the tumor is found.)
• An Octreoscan on a regular basis. This test uses a drug called octreotide with radioactive indium-111 to find pancreatic neuroendocrine tumors. A small amount is injected into a vein. A few hours after the injection, a special camera can show where the radioactivity has collected in the body.