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Neuroendocrine cancers

Key facts

  • Neuroendocrine cancers are a group of rare cancers that begin in the nerve cells and glands of the neuroendocrine system.
  • Neuroendocrine cancers usually don't cause symptoms in the early stage.
  • You might feel tired and not want to eat, or have symptoms that are related to where the tumour is located.
  • Some neuroendocrine cancers can lead to carcinoid syndrome, which causes a flushed face, diarrhoea, wheezing and trouble breathing.
  • Treatment might include surgery, chemotherapy, radiotherapy and medicines.

What are neuroendocrine cancers?

Neuroendocrine cancers are a rare and complex group of cancers that begin in the nerve cells and glands of your neuroendocrine system. The neuroendocrine system makes and releases hormones into your blood stream. These hormones help your body work, like when it digests food.

Neuroendocrine cancers can grow slowly or more quickly. They usually form in the digestive system (gut) and the lungs.

Neuroendocrine cancers are also called neuroendocrine tumours or NETS. They are sometimes known as carcinoids.

What are the symptoms of neuroendocrine cancers?

Warning:

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.

Many neuroendocrine cancers don't show symptoms early on.

General symptoms include fatigue and loss of appetite.

You may also have different symptoms based on where the cancer is in your body and whether it's releasing hormones into your blood.

Symptoms can include:

Carcinoid syndrome

Carcinoid syndrome is a group of symptoms that can happen when a neuroendocrine tumour in your lungs or gastrointestinal (GI) tract makes too many hormones.

Carcinoid syndrome symptoms include:

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

People with a neuroendocrine cancer can sometimes have a severe case of carcinoid syndrome caused by stress, general anaesthetic or some treatments. This is called a 'carcinoid crisis'.

CHECK YOUR SYMPTOMS — Use the Symptom Checker and find out if you need to seek medical help.

What causes neuroendocrine cancer?

Most neuroendocrine cancers don't have a known cause, but there are risk factors that may increase your chance of getting some neuroendocrine cancers. These include:

  • some genetic diseases
  • 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). Also imaging 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 to test if it's a neuroendocrine cancer.

Preparing for an appointment? See our tips on questions to ask your doctor.

How are neuroendocrine cancers treated?

There are several ways to treat neuroendocrine cancers. Your specialist will discuss the best treatment option for you.

You might have one treatment or a mix of treatments, like:

  • surgery — where all or part of the cancer is removed
  • chemotherapy — which can be used either alone or together with radiation therapy
  • radiation therapy (radiotherapy) — which is used to kill or damage the cancer cells
  • peptide receptor radionuclide therapy (PRRT) —a type of radiation therapy used to control symptoms and growth of the tumour
  • liver-directed therapy — which uses heat or chemotherapy to kill cancer that has spread to the liver

Other treatments include:

  • somatostatin analogues —injections given every month to help lessen your symptoms or to control growth of the cancer
  • targeted therapy (Opens in new tab) — medicines are used to focus on certain parts of cancer cells and stop the cancer growing
  • immunotherapy — this helps your body's immune system to fight the cancer and is currently being studied in neuroendocrine cancers

You may not need treatment right away if you have a slow-growing cancer that isn't causing any symptoms. Instead, your doctor will monitor you. This is also called active surveillance, which means watching and waiting.

Living with neuroendocrine cancer

It may have taken you some time to find out that the symptoms you've noticed are related to neuroendocrine cancer. You may also need some time to get used to this news.

Consider mind-body techniques (Opens in new tab), such as relaxation, meditation, art therapy or mindfulness to help manage your health.

Alcohol and some foods can trigger diarrhoea and flushing caused by carcinoid syndrome. So it may be helpful to see a dietitian who can help you adjust your diet.

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

Resources and support

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.

Languages other than English

The Cancer Council has guides about neuroendocrine cancers (Opens in new tab) in languages other than English.

NeuroEndocrine Cancer Australia has videos on neuroendocrine cells and carcinoid syndrome (Opens in new tab) in Mandarin and Arabic.

International Neuroendocrine Cancer Alliance has information in many languages (Opens in new tab).

Information for Aboriginal and/or Torres Strait Islanders

Cancer Council NSW (Opens in new tab) provides information about cancer for Aboriginal and/or Torres Strait Islander peoples.

Last reviewed: October 2025

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