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Neuroendocrine cancers

6-minute read

Key facts

  • Neuroendocrine cancers are a group of rare cancers that start in the nerve cells and glands that make up the neuroendocrine system.
  • Neuroendocrine cancers usually don’t cause symptoms at an early stage.
  • You may experience general symptoms such as fatigue and loss of appetite, or symptoms related to where the tumour is.
  • Some neuroendocrine cancers cause carcinoid syndrome, which is flushing of the face, diarrhoea, wheezing and shortness of breath.
  • Treatment may involve surgery, chemotherapy and radiotherapy as well as medicines and diet changes to help you manage your symptoms.

What are neuroendocrine cancers?

Neuroendocrine cancers are a complex, rare group of cancers that start in the nerve cells and glands that make up the neuroendocrine system. The role of the neuroendocrine system is to make and release hormones into the blood stream.

Neuroendocrine cancers are sometimes known as neuroendocrine tumours or NETS.

Neuroendocrine cancers can be slow growing or more aggressive. They most commonly form in the digestive system (gut) and the lungs.

Neuroendocrine cancers are also sometimes known as carcinoids.

What are the symptoms of neuroendocrine cancers?

Many neuroendocrine cancers do not cause symptoms at an early stage. General symptoms include fatigue and loss of appetite. There are also many symptoms that you may experience depending on where the cancer is in your body and if it is releasing hormones into your bloodstream. These include:

Carcinoid syndrome

Carcinoid syndrome refers to a group of symptoms that may occur when neuroendocrine cancers or the lungs or gastrointestinal (GI) tract make too many hormones.

Carcinoid syndrome symptoms include:

Cancers in these areas don’t always cause these symptoms.

Sometimes people with a neuroendocrine cancer have a severe episode of carcinoid syndrome triggered by stress, general anaesthetic or certain treatments. This is called a 'carcinoid crisis'.

Call triple zero (000) and ask for an ambulance, or go immediately to your nearest hospital emergency department if you find it difficult to breathe or you are feeling very confused, or if you have a neuroendocrine tumour and have severe facial flushing.

What causes neuroendocrine cancer?

The cause of most neuroendocrine cancers isn’t known, but risk factors for some neuroendocrine cancers include:

  • some genetic diseases
  • pre-existing conditions such as diabetes or peptic ulcers
  • over-exposure to the sun

How are neuroendocrine cancers diagnosed?

Neuroendocrine cancers can be difficult to find. If your doctor is concerned you have a neuroendocrine cancer, they may:

  • ask you some questions about your symptoms
  • do a physical examination
  • request urine tests to check for high levels of hormones, such as serotonin, which are commonly released by neuroendocrine cancers
  • request blood tests to check for high levels of the protein chromogranin A, which is released by some neuroendocrine cancers

You might have a test where a camera is used to look in your lungs (bronchoscopy), or bowel (endoscopy), or scans to look for the tumour and to check whether it has spread. A sample of tissue (a biopsy) may be taken from the suspected tumour for testing to confirm if it is a neuroendocrine cancer.

ASK YOUR DOCTOR — Preparing for an appointment? Use the Question Builder for general tips on what to ask your GP or specialist.

How are neuroendocrine cancers treated?

Your doctor might:

  • recommend surgery, chemotherapy or radiation, either alone or in combination
  • give you some medicines to control troubling symptoms caused by the high hormone levels
  • suggest changes to the food you eat and drink — alcohol and certain foods can all trigger carcinoid symptoms

You may not need treatment straight away if you have a slow-growing cancer that isn’t causing any symptoms.

Living with neuroendocrine cancer

It may have taken you a while to find out that the symptoms you have been aware of for some times are connected. You may also need some time to adjust to this news.

Consider mind-body techniques, such as relaxation, meditation, art therapy or mindfulness to help manage your health.

It may also be helpful to see a dietitian who can help you manage any necessary changes to your diet to reduce diarrhoea and flushing from carcinoid syndrome.

FIND A HEALTH SERVICE — The Service Finder can help you find doctors, pharmacies, hospitals and other health services.

Resources and support

Other languages

International Neuroendocrine Cancer Alliance has information in many languages.

Aboriginal and Torres Strait Islanders

Cancer Council NSW provides information all about cancer for Aboriginal and/or Torres Strait Islander peoples.

Learn more here about the development and quality assurance of healthdirect content.

Last reviewed: December 2023

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