Pancreatic neuroendocrine cancer
Gastrinomas are neuroendocrine tumours (NETs) that start in the making cells of the pancreas and small bowel ().
Gastrin is a which controls the amount of acid in your stomach. It helps to digest food. Gastrinomas make large amounts of gastrin which causes high levels of stomach acid. Too much acid can cause ulcers in the stomach and the small bowel.
Zollinger - Ellison Syndrome (ZES) is the name for the collection of symptoms you have with a gastrinoma. ZES refers to the combination of:
high levels of gastrin
too much acid
stomach or small bowel ulcers
Doctors sometimes group NETs depending on whether they make abnormal levels of hormone:
Non-functioning NETs make and release normal levels of hormone.
Functioning NETs make and release abnormal levels of hormone.
The pancreas and duodenum are part of our .
The pancreas is a large gland that makes digestive juices and hormones. The juices flow down a tube (duct) into the duodenum. The duodenum is the first part of the small bowel.
Another duct called the bile duct joins the duodenum to the liver and the pancreas. The bile duct comes down from the and liver and joins the duodenum right next to the pancreatic duct.
Around 70 out of every 100 gastrinomas (around 70%) start in the duodenum. Tumours that start in the duodenum are usually small. They are often less than 1 cm across. They are called duodenal gastrinomas.
About 25 out of every 100 gastrinomas (about 25%) start in the pancreas. Pancreatic gastrinomas usually start in the widest part of the pancreas. This is called the head of the pancreas. It is the part closest to the duodenum. Pancreatic gastrinomas are often bigger than duodenal gastrinomas.
More rarely gastrinomas can start in the:
stomach
liver
bile duct
ovary
heart
lungs
All gastrinomas are cancers. Some gastrinomas grow slowly and don't spread to other parts of the body. But some can spread (metastasise) to other parts of the body.
Gastrinomas that start in the pancreas are more likely to spread to other parts of the body, than gastrinomas that start in the duodenum:
Up to 35 out of every 100 pancreatic gastrinomas (up to 35%) spread to the liver.
Up to 10 out of every 100 duodenal gastrinomas (up to 10%) spread to the liver.
Gastrinomas can also spread to the nearby .
Gastrinomas are very rare. Fewer than 2 people in every million develop a gastrinoma every year.
You usually have symptoms caused by the increase in the amount of stomach acid. Gastrinomas make large amounts of the hormone gastrin. Gastrin controls the amount of acid in your stomach, which helps to digest food.
The symptoms can be vague and might include:
tummy pain, usually caused by a stomach or duodenal ulcer
diarrhoea
indigestion (heart burn)
bleeding in your poo or vomit
feeling or being sick
unexplained weight loss
Zollinger-Ellison Syndrome (ZES) is the name doctors use for the collection of symptoms caused by high levels of the hormone gastrin. ZES often causes:
stomach or small bowel ulcers (peptic ulcer disease)
acid reflux (gastro oesophageal reflux or GOR for short)
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. They might refer you to a gastroenterology specialist. These doctors specialise in problems affecting the digestive system.
Gastrinomas are rare tumours. So your doctor might ask you to have tests that check for other conditions first.
If your specialist suspects cancer, you have tests to check the type of cancer you have. If tests show that you have a gastrinoma, they will refer you to a team of doctors and specialist nurses who have expertise in treating NETs.
Find out more about seeing a specialist
Your GP and specialist arrange tests. Tests also show the size of the cancer and whether it has spread. Some of the tests help your doctor plan your treatment.
You might have a blood test to check your level of gastrin. Some stomach ulcer medicines can increase your gastrin levels. If you have an ulcer and a possible gastrinoma you should keep taking the medicines unless your doctor tells you to stop.
Other tests you might have include:
other blood tests to check your general health and check levels of other substances raised by neuroendocrine cancer
a blood test to check for a rare inherited condition called
to look inside your food pipe, stomach and small intestine and take a
radioactive scans – these are or Tektrotyd scans, and gallium PET scans
gastric PH test to measure how much acid is in your stomach
selective angiography with secretin stimulation
This test combines an x-ray of your blood vessels (angiography) and a test which makes gastrinomas produce gastrin.
Your doctor gives an injection of calcium into each one of the main blood vessels (arteries) in the gut. This makes gastrinomas produce gastrin and release it into the bloodstream. After 30 seconds, your doctor takes blood samples from each artery to measure the amount of gastrin.
This test can show the position of the gastrinoma based on which blood vessel it is close to.
You may have other tests, depending on your symptoms. Your doctor can tell you which tests you need.
Read more about the tests for neuroendocrine cancer
The looks at a sample of gastrinoma 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
Gastrinomas 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 gastrinoma and whether it has spread. This is your stage. Doctors use your stage to plan your treatment.
There are different ways to stage gastrinomas. Doctors usually use the TNM system or number stages. There are 4 main stages of NETs - stage 1 to stage 4.
The staging system doctors use also depends on whether the gastrinoma develops in your pancreas or duodenum.
Read more about grading and staging pancreatic neuroendocrine cancers
We have separate information about staging neuroendocrine cancers.
Read more about staging duodenal neuroendocrine cancers
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
Surgery is the main treatment for gastrinomas. But surgery is not always possible. Some gastrinomas 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.
Surgery to remove the gastrinoma is usually the main treatment. The type of surgery you have depends on whether the gastrinoma started in your duodenum or the pancreas.
Some of these are major operations and there are risks. But if the aim is to try to cure the NET, you might feel it is worth some risks. Talk to your doctor about the risks and benefits of your surgery.
There are different ways of doing the operation:
Open surgery means the surgeon makes a large cut (incision) in your tummy. This is the more common way to remove gastrinomas.
or laparoscopic surgery means your surgeon makes some small cuts in your tummy. They put a l and other small instruments though these to remove the cancer. It is also called minimally invasive surgery. Keyhole surgery isn't common for gastrinomas.
You often also have an ultrasound scan during your operation to check for other tumours.
How you feel and how quickly you recover depends on the type of surgery you have. Your surgeon will be able to tell you more about what to expect.
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: 07 Mar 2025
Next review due: 07 Mar 2028
There are different types of neuroendocrine cancer that develop in the pancreas. Pancreatic neuroendocrine tumours (NETs) include insulinoma, gastrinoma, somatostatinoma, glucagonoma and VIPoma.
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.
Your doctor organises different types of tests. These include blood tests, scans and tests to look inside your body. They might take a sample (biopsy) of the cancer.
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.
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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