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Neuroendocrine tumours – also called NETs – are a type of tumour (or abnormal mass of cells) that can form in the cells of the neuroendocrine system.1
The neuroendocrine system is a network of glands and nerve cells found throughout the body. These glands and cells make hormones and release them into the bloodstream, helping to control normal bodily functions, such as digesting food.1
The type of cells found in the neuroendocrine system are called neuroendocrine cells. While these cells can be found throughout the body, they mainly occur in the gastrointestinal tract (including the large and small bowels), the pancreas, and the lungs.1
In 2022 NETs were the 7th most diagnosed cancer in Australia, with an estimated 5400 Australians diagnosed with a NET.*2 Most new NETs are found in people aged over 40 years.1
*Data from Australian Institute of Health and Welfare, October 2022
NETs are usually described by where in the body the abnormal cells come from. The most common locations where NETs develop are the digestive tract and the lungs.1,3
NETs can also be described in the following ways:1,3
- How fast the tumour is growing – ranging from low grade (slow growing) to high grade (fast growing)
- Whether extra hormones are being produced – functional tumours produce extra hormones that can cause certain symptoms in the body; non-functional tumours don’t produce extra hormones
Different types of NETs include:1,3
- Gastrointestinal NETs – these can start in different areas of the large or small bowel, and represent about 54% of all NETs
- Pancreatic NETs – start in the endocrine cells of the pancreas, and account for about 7% of all NETs; most are non-functional
- Lung NETs – develop in the lungs and represent about 25% of all NETs
- Merkel cell carcinoma – a fast-growing NET that involves the Merkel cells present in the top layer of the skin
- Neuroblastoma – usually starts in the adrenal glands (located on top of each kidney) and affects immature or developing nerve cells in children; more common in children under 5 years of age
Most NETs grow slowly over years, but some can grow quickly and spread to other parts of the body. During the early stages, NETs may not cause symptoms, or they may only cause general nonspecific symptoms that can commonly occur with other illnesses, such as tiredness or loss of appetite.1,3
The types of symptoms caused by NETs will be different depending on the location of the NET and whether the NET is producing hormones.1,3
Type of NET | Symptoms*1,3 |
Gastrointestinal NETs |
|
Pancreatic NETs |
|
Lung NETs |
|
Neuroblastoma |
|
Merkel cell carcinoma |
|
The exact cause of most NETs is not known. Some risk factors for developing NETs may include:1,3
- Genetic factors – NETs are associated with some rare inherited diseases
- Pre-existing conditions – peptic ulcers may increase risk for NETs in the digestive tract; diabetes may increase risk for developing pancreatic NETs
- Age – most NETs affect people aged over 40 years
- Sex – NETs appear to be slightly more common in men than in women, and slightly higher again in black African men
*These are not all the possible symptoms of NETs, and not all patients with NETs will experience all the symptoms listed.
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Your doctor will discuss your specific symptoms with you. Different tests are used to diagnose NETs depending on those symptoms and where in the body the tumours are thought to be.1,3
Tests used to assess for NETs include:1,3
- Blood tests – usually include a full blood count to count the number of different types of blood cells and tests for different tumour markers
- Urine tests – measure levels of a chemical called serotonin that can be produced by NETs
- Endoscopy – uses a camera inserted down the throat into the stomach or into the anus and large bowel to view the gut; this test is performed under sedation to avoid discomfort
- Bronchoscopy – uses a thin tube with a light and lens inserted through the mouth or nose to view the lungs; this test is performed under sedation to avoid discomfort
- Computed tomography (CT scan) – takes three-dimensional pictures of several organs at the same time; used to help doctors plan surgery, if required
- Magnetic resonance imaging (MRI scan) – records detailed cross-sectional pictures (“slices”) of the inside of the body; used to show the extent of any tumours
- Positron emission tomography (PET scan) – produces three-dimensional colour images that show where any cancers are in the body
- Biopsy – removes a small sample of tissue from the affected area for closer examination; biopsies are performed using local or general anaesthetic
- Echocardiogram – uses an ultrasound to examine heart valves that can sometimes be affected by NETs
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Neuroendocrine tumours are associated with very different presentations and symptoms, so treatment options are varied and need to be tailored to each individual patient.
The treatment plan that your doctors recommend will depend on the type, location, and size of the NETs, and how advanced the cancer has become, as well as your overall health and personal preferences. You may have more than one type of treatment, which may be given in different orders or combinations depending on your situation. 1,3
Treatments that may be used for NETs include:1,3
Surgery removes tumours and some surrounding healthy tissue
Uses a specific hormone to help slow tumour growth and the overproduction of hormones.
Chemotherapy uses medications to kill cancer cells or reduce their growth and spread
Radiation therapy uses radiation to destroy cancer cells in the affected area
Uses medications designed to target specific features of cancer cells to stop their growth and spread
Theranostics uses a PET scan to identify targets for selective drug delivery
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NeuroEndocrine Cancer Australia (previously the Unicorn Foundation)
Foundation for neuroendocrine cancer research and patient support, funding clinical trials, a specialist NET nurse helpline, patient support groups nationwide, and advocating for treatment access.
GI Cancer Institute
GI Cancer Institute is the community-facing brand of the Australasian Gastro-Intestinal Trials Group, raising awareness and providing patient resources.
Carcinoid Cancer Foundation
(CCF) educates the public about neuroendocrine tumours (NETs), supports patients and caregivers, connects people with specialist doctors, and advocates for research advancements in NET treatment
Cancer Council Australia
Australia's leading cancer charity, Cancer Council aims to lead a cohesive approach to reduce the impact of cancer.
Australian Cancer Research Foundation
ACRF funds cutting-edge cancer research by providing scientists with advanced technology and infrastructure.
Rare Cancers Australia
RCA is dedicated to improving the lives and health outcomes of Australians affected by rare and less common cancers.
- Cancer Council. Understanding neuroendocrine tumours. Cancer Information Fact Sheet. 2021. Available: https://www.cancer.org.au/cancer-information/types-of-cancer/rare-cancers/neuroendocrine-tumours (accessed July 2023).
- Cancer Australia. Neuroendocrine tumours. Available from: https://www.canceraustralia.gov.au/cancer-types/neuroendocrine-tumours/statistics (accessed July 2023).
- Australasian Gastrointestinal Trials Group. Neuroendocrine tumours. Available: https://gicancer.org.au/cancer/neuroendocrine-tumours/ (accessed July 2023).
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