What are stomach neuroendocrine cancers?

Stomach neuroendocrine cancers develop in the neuroendocrine cells of the stomach. Your healthcare team might call them stomach neuroendocrine neoplasms (stomach NENs). But neuroendocrine cancer and neuroendocrine neoplasm mean the same thing.

In the stomach, neuroendocrine cells help control the release of digestive juices and how fast food moves through the stomach. They may also help control the growth of other types of digestive system cells.

The stomach

The stomach is part of the digestive system . It's in the upper left side of the tummy (abdomen). The top of the stomach joins the bottom of the food pipe (oesophagus) and the other end is joined to the bowel. 

It is a muscular bag that has three main parts. They are the:

• top (fundus)
• middle (body) 
• bottom (antrum or pylorus) 

At each end of the stomach there is a valve called a sphincter. These valves control the movement of food through the digestive system.

They are the:

• cardiac sphincter - at the top joining the oesophagus to the stomach
• pyloric sphincter - which is at the bottom joining the stomach to the bowel

How common are stomach neuroendocrine cancers?

Stomach neuroendocrine cancers are rare stomach cancers.  Around 190 people are diagnosed with stomach neuroendocrine cancers in England every year.

There are different types of cancer that develop in the stomach. Only around 1 out of every 100 stomach cancers (around 1%) are a stomach neuroendocrine cancer.

Most neuroendocrine cancers start somewhere in the digestive system (gut). Around 5 out of every 100 neuroendocrine cancers (around 5%) start in the stomach.

Risks and causes

Some things increase the risk of developing stomach neuroendocrine cancers. But having one of these risk factors doesn’t mean that you will definitely develop a cancer. 

The risk factors for stomach neuroendocrine cancer include:

• a long lasting inflammation of the stomach - this is called atrophic gastritis and can be an inherited immune system disorder
• an inherited condition called multiple endocrine neoplasia 1 (MEN1)
• having a family history of cancer 

Symptoms of stomach neuroendocrine cancer

Many people with a stomach neuroendocrine cancer do not have any symptoms. Doctors often diagnose a stomach neuroendocrine cancer when looking for something else.

If you do have symptoms, they might be not be specific. They can be similar to other conditions that aren’t caused by a neuroendocrine cancer. Symptoms are usually caused by:

• the growth of the cancer in your stomach
• the neuroendocrine cancer spreading to other parts of the body
• hormones made by the cancer

The following symptoms could be due to a stomach neuroendocrine cancer but can also be caused by other medical conditions. It’s important to get them checked out by your doctor.

Symptoms might include:

• tummy pain
• feeling or being sick
• dark poo (because it contains blood) or blood in your vomit
• breathlessness or looking pale due to low levels of red blood cells (anaemia)
• indigestion (dyspepsia) that doesn't go away
• feeling full after eating small amounts
• unexplained weight loss
• diarrhoea ­– this means having 2 or more loose bowel movements than usual

Some stomach neuroendocrine cancers spread and might cause a collection of symptoms. This is called carcinoid syndrome. It is rare.

Getting diagnosed

Stomach neuroendocrine cancers often don’t cause symptoms. Most people are diagnosed with when they are having tests for something else. 

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.

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
• a type of endoscopy called a gastroscopy – this is to look inside your stomach and take a cancer sample (biopsy )
• CT scan of your chest and tummy
• MRI scan
• endoscopic ultrasound scan of your tummy and food pipe
• PET-CT scan  
• radioactive scans – these are octreotide scans (or octreoscans ) and MIBG scans
• urine tests to check levels of substances raised by neuroendocrine cancer

You might have other tests, depending on your symptoms. Your doctor can tell you which tests you need.

Survival for stomach neuroendocrine cancer

The best person to talk to you about your outlook (prognosis) 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 stomach neuroendocrine cancer you have. And how far it has spread (the stage).

Grades, types and stages of stomach neuroendocrine cancer

The tests and scans you have give information about the type, stage  and grade . This helps your doctor decide which treatment you need.