Pancreatic neuroendocrine cancer
Non functioning pancreatic neuroendocrine tumours (NETs) start in the neuroendocrine cells of the pancreas.
Doctors sometimes group NETs depending on whether they make and release abnormal levels of hormones:
Non functioning NETs make and release normal levels of hormones.
Functioning NETs make and release abnormal levels of hormones.
This page is about non functioning NETs. These are the more common type of pancreatic NET, although they are very rare.
Doctors group functioning NETs separately. There are different types including insulinomas, gastrinomas, somatostatinomas, glucagonomas and VIPomas.
Find out more about the different types of functioning NETs
The pancreas is part of our .
The pancreas is quite high up in the tummy (abdomen). It lies across your body where the ribs meet at the bottom of the breastbone, just behind your stomach. It is about 6 inches long (15 centimetres) and shaped like a leaf.
The pancreas has 3 parts:
the wide part is the head
the thin end is the tail
the part in the middle is the body
The pancreatic duct is a tube that collects the digestive juices made by the pancreas. It carries them into the first part of the small bowel (duodenum).
Non functioning pancreatic NETs are very rare. Nearly 5 people in every million develop a non functioning pancreatic NET every year.
Non functioning pancreatic NETs are the most common type of NET that develops in the pancreas.
Some people don’t have any symptoms. Doctors can diagnose a non functioning pancreatic NET when looking for something else.
You might have symptoms caused by the growth and spread of the tumour. These can include:
tummy pain
indigestion (dyspepsia)
yellowing of the skin and whites of the eyes (jaundice)
unexplained weight loss
loss of appetite
If you have symptoms, you usually see your GP first. They might organise some tests. Your GP will decide if you need to see a specialist.
Non functioning NETs of the pancreas are rare. So your doctor might ask you to have tests that check for other conditions first.
If your doctor suspects cancer, you have tests to check the type of cancer you have. If tests show that you have a NET, your specialist will refer you to a team of doctors and specialist nurses who have expertise in treating NETs.
Find out more about seeing a specialist
If your doctor suspects cancer, you have tests to check the type of cancer you have. Tests also show the size of the cancer and whether it has spread. This helps your doctor plan your treatment.
Tests might include:
blood tests - these check your general health and check levels of substances raised by neuroendocrine cancer
of your tummy to look at your stomach, pancreas and bile ducts, and to take
to show the size of the cancer and whether it has spread
radioactive scans – these include or Tektrotyd scans, and gallium PET scans
You may also have a blood test to check for a rare inherited condition called . This test is usually only requested by specialist doctors (genetic doctors).
You might have other tests, depending on your symptoms. Your doctor can tell you which tests you need.
Read more about the tests you might have
The pathologist looks at a sample of NET cells under a microscope. They look at:
how abnormal the cancer cells look – doctors call this differentiation
how quickly or slowly they are dividing and growing – this is grading
Non functioning pancreatic NETs are well differentiated cancers. This means the NET cells look abnormal. But they still have some similarities to normal neuroendocrine cells.
You have tests to find out the size of the NET and whether it has spread. This is your stage. Doctors use your stage to plan your treatment.
There are different ways to stage pancreatic neuroendocrine cancer. Doctors usually use the TNM system or number stages. There are 4 main stages of pancreatic NETs - stage 1 to stage 4.
Read more about the grades and stages of pancreatic NETs
A risk factor is anything that increases your risk of getting a disease.
We don’t know what causes most neuroendocrine cancers. But there are some risks factors that can increase your risk of developing it. Having one of these risk factors doesn’t mean that you will definitely develop a cancer.
The risk factors for pancreatic NETs include:
inherited conditions such as and
having a family history of cancer
Read more about the risks and causes of neuroendocrine cancer
NETs grow at different rates, but they often grow very slowly. So you might not need treatment straight away.
Surgery is the main treatment for non functioning pancreatic NETs. But surgery is not always possible. Some NETs might have already started to spread. Or you may not be well enough to have an operation.
You might have other treatments if surgery isn’t an option.
A team of doctors and other professionals discuss the best treatment and care for you. They are called a multidisciplinary team (MDT).
The treatment you have depends on:
where the NET is and its size
how many tumours you have
whether it has spread to other parts of the body
your general health and fitness
the symptoms you have
Your doctor will discuss your treatment. And tell you about its benefits and the possible side effects.
You are likely to have a clinical nurse specialist (CNS). They go to the MDT meetings. They can help answer your questions and support you. They are often your main point of contact throughout your treatment.
Your NET might grow very slowly. And it might not grow at all for months or years.
Your doctor will weigh up the risks of surgery against the benefits of treating a NET that may never grow large enough to spread. They will discuss this with you.
Your doctor might tell you that you don't need treatment straight away. Your team keeps an eye on your NET with regular scans. They call this ‘watch and wait’ or surveillance.
It can be hard to hear that you have cancer but not have treatment. You might feel worried that you aren't doing anything to stop the cancer. Or you might feel like the doctors are keeping treatment from you. Waiting for test results and check ups can also be difficult.
Read some general information about watch and wait
You usually have follow up appointments after treatment. This is to check how you are and see whether you have any problems or worries.
You might also have tests on some visits. The tests might include:
blood tests
an MRI or CT scan
How often you see your doctor depends on:
the grade of your NET
whether it has spread to other parts of the body
what treatment you have had
any side effects you might have
It is important you contact your doctors if you have any worrying symptoms between appointments.
The best person to talk to you about your outlook () is your doctor. Not everyone wants to know. People cope differently with cancer and want different information.
Survival depends on many factors. So no one can tell you exactly how long you will live. Your doctor might be able to give you some guide, based on their knowledge and experience.
Your prognosis will depend on the type of NET you have and what it is.
Read more about survival for neuroendocrine cancers
You might have physical changes to your body because of your cancer or the treatment. These changes can be hard to cope with and can affect the way you feel about yourself. It can help to talk to friends and family. Or join a support group to meet people in a similar situation.
We have a discussion forum called Cancer Chat. It is a place for anyone affected by cancer. You can share experiences, stories and information with other people with cancer.
You might need practical advice about benefits or financial help. There is help and support available. There are also organisations to support and provide information to people affected by neuroendocrine cancer.
We have information about living and coping with a neuroendocrine cancer
Last reviewed: 12 Mar 2025
Next review due: 12 Mar 2028
Pancreatic neuroendocrine cancers are rare cancers that start in the neuroendocrine cells of the pancreas. There are many different types.
Grade means how quickly or slowly the cancer cells are dividing and growing. The stage of a neuroendocrine cancer tells you its size and whether it has spread. There are many different types.
Treatment depends on the type of neuroendocrine cancer you have, where it is, its size and whether it has spread (the stage).
Survival (prognosis) depends on several factors. This includes your type of neuroendocrine cancer, where it is in your body, and whether it has spread.
Practical and emotional support is available to help you cope with neuroendocrine cancer.
Neuroendocrine cancers develop in cells of the neuroendocrine system. They can develop in different parts of the body including the lungs, stomach, pancreas and bowel.
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