Neuroendocrine tumours

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 7^th 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}

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 – to 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 than can sometimes be affected by NETs

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
• Hormone therapy – 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
• Targeted therapies – 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

Patients who are receiving treatment for NETs are usually cared for by a multidisciplinary team of healthcare professionals. Depending on the type and location of NETs, your treatment team may include surgical oncologists, medical oncologists, and radiation oncologists, as well as doctors who specialise in disorders of the digestive tract (gastroenterologist), endocrine system (endocrinologist), or respiratory system (respiratory physician).¹

A NET diagnosis can be life changing, and you may feel many different emotions. You may experience disbelief, sadness, anger, and loneliness.¹ At GenesisCare, we aim to deliver a personalised care experience provided by a team of compassionate healthcare professionals. Your care team aim to know your name as quickly as possible, and to understand who you are as a person.

Your multidisciplinary care team will include oncologists and nurses, and they are here to support you before, during, and after your NET treatment. As part of your care, we may offer you access to a range of Allied Health support services, and depending on your location these may include a psychologist, exercise physiologist, physiotherapist, and dietitian – all tailored to support your need.¹ A member of your treatment team will discuss the most suitable options with you.

Other NET information, resources, and support services are available to assist you during your cancer journey. These include:

Cancer Council Australia
Tel: 13 11 20
cancer.org.au

Neuroendocrine Cancer Australia (previously the Unicorn Foundation)
Tel: 1300 287 363
neuroendocrine.org.au

Carcinoid Cancer Foundation
Tel: 0419 871 975
carcinoid.org

Australasian Gastrointestinal Trials Group
Tel: 1300 666 769
gicancer.org.au