Getting diagnosed

You have some tests to diagnose a non functioning neuroendocrine tumour (NET) of the pancreas. This might include blood tests and scans. Your GP can refer you to see a specialist.

Non functioning NETs of the pancreas don't make hormones, or make hormones that do not cause a set of symptoms (a syndrome). So you might have symptoms caused by the spread and growth of the tumour. Symptoms are often vague and can also be caused by other more common medical conditions.

Non functioning NETs of the pancreas are rare. So your doctor might ask you to have tests that check for other conditions first.

Seeing your GP

You usually start by seeing your GP. They will ask you about your general health, symptoms and may also examine you.

Your GP might check your blood pressure, heart rate and temperature. They may arrange for you to have blood tests. Your doctor will then decide if you need to see a specialist.

Referral to a specialist

Your GP looks at your symptoms and decides what specialist to refer you to. For example, they might refer you to the gastrointestinal (GI) team if you have tummy pain and yellowing of the skin (jaundice).

The specialist might ask you to have more tests. If tests show that you have a non functioning NET of the pancreas, your specialist will refer you to a team of doctors and specialists nurses who have expertise in treating NETs.

Tests

You have tests to check:

whether you have a NET
the type of NET you have
the size of the tumour
whether it has spread

This helps your doctor plan your treatment.

Blood tests

Blood tests can check your general health. They can also check the levels of certain substances in the blood which are sometimes raised with NETs.

You may also have a blood test to check for a rare inherited condition called multiple endocrine neoplasia 1 (MEN1). This test is usually only requested by specialist doctors (genetic doctors).

Radioactive scans

These are octreotide scans (or octreoscans) or gallium PET scans. You have an injection of a low dose radioactive substance, which is taken up by some NET cells. The cells then show up on the scan.

CT scan

This scan can show up a NET and see whether it has spread anywhere else in your body.

MRI scan

An MRI scan takes detailed pictures of your body. You might have an MRI scan to look at your pancreas and check whether the cancer has spread.

Endoscopy

This test looks at the inside of your food pipe, stomach and bowel. Your doctor uses a long flexible tube which has a tiny camera and a light on the end of it. Doctors can take samples of any abnormal areas (biopsies).

Endoscopic ultrasound scan (EUS)

This test combines an ultrasound and endoscopy to look at the inside of your stomach, pancreas and bile ducts.

Your doctor uses a long flexible tube (endoscope) with a tiny camera and light on the end. It also has an ultrasound probe. The ultrasound helps the doctor find areas that might be cancer. They then can take samples (biopsies) of any abnormal areas.

You may have other tests depending on your symptoms. Your doctor will tell you which tests you need.