Neuroendocrine cancers (often called neuroendocrine tumours or NETs) are a less common, but complex cancer that affects approximately 18 in every 100,000 Australians and can develop in various parts of the body.
These cancers develop in the neuroendocrine cells—cells which play a crucial role in managing hormones and regulating bodily functions.
In Australia, many people are still unaware of this condition. But thanks to the work of organisations like NeuroEndocrine Cancer Australia, awareness is growing.
So what exactly is neuroendocrine cancer? How does it affect the body? And how prevalent is it compared to other types of cancer?
Today, we explore what neuroendocrine cancers are, their symptoms, how they’re diagnosed, and the treatment options available.
What are neuroendocrine cancers?
Neuroendocrine cancers arise from neuroendocrine cells. These cells have the unique ability to function as both nerve and hormone-producing cells.
These cells are located in various organs throughout the body, some more common locations include the;
-
Pancreas
-
Lungs
-
Gastrointestinal tract
-
Skin
While neuroendocrine cancers can be considered less common, their complexity and wide range of symptoms often make them challenging to diagnose and treat.
Neuroendocrine tumours are classified as either functional or non-functional:
-
Functional tumours produce excessive hormones, often leading to noticeable symptoms like flushing, diarrhoea, or wheezing.
-
Non-functional tumours do not produce excessive hormones and are typically discovered incidentally or after they’ve grown large enough to cause physical discomfort.
How common are neuroendocrine cancers in Australia?
While neuroendocrine cancers are considered less common, their incidence has been rising in recent years. In Australia, approximately 5755+ people are diagnosed with a neuroendocrine tumour each year, with over 29,000 Australians currently living with the disease.
Early diagnosis can contribute to more positive outcomes. But because NETs often present with vague symptoms, many patients experience delays in receiving a proper diagnosis.
NeuroEndocrine Cancer Australia (NECA), the leading advocacy group in the country, plays a vital role in raising awareness, providing resources for patients and caregivers, and supporting research efforts to improve NET management.
What are the symptoms of neuroendocrine cancers?
Unlike many other cancers, symptoms of neuroendocrine cancers can vary widely depending on the tumour’s location, size, and whether it’s functional or non-functional.
Common symptoms include:
-
Abdominal pain or discomfort
-
Unexplained weight loss
-
Fatigue
-
Persistent diarrhoea or changes in bowel habits
-
Flushing or redness of the skin (particularly in the face)
-
Wheezing or shortness of breath
-
Changes in appetite or unexplained bloating
Misdiagnosis of neuroendocrine cancers
Neuroendocrine cancers are sometimes misdiagnosed, because these symptoms are often similar to common conditions like:
-
Irritable Bowel Syndrome
-
Asthma
-
Menopause
-
Skin conditions
If you or someone you know is experiencing persistent, unexplained symptoms, seek medical advice as soon as you can. It might save your life, and it will improve your outcomes.
How are neuroendocrine cancers diagnosed?
Diagnosing neuroendocrine cancers typically involves a combination of medical tests and imaging. In Australia, access to advanced diagnostic tools is improving, thanks to increasing awareness of NETs.
Common steps in the diagnostic process include:
-
Blood and urine tests: These can detect specific biomarkers, such as Chromogranin A (CgA) or 5-HIAA, which may indicate the presence of a neuroendocrine tumour.
-
Imaging scans: PET/CT scans, including specialised Dotatate scans, are highly effective in identifying NETs and their spread.
-
Biopsy: A tissue sample may be taken to confirm the diagnosis and determine the tumour’s grade.
Specialised imaging like the 68Ga-DOTATATE PET/CT scan, widely available in Australia, has become the gold standard for detecting neuroendocrine tumours with high accuracy.
(Image: PET/CT scans for identifying NETs. Credit: Image Supply Co)
What causes neuroendocrine cancers?
The exact cause of neuroendocrine cancers is not always clear, but certain factors may increase the risk:
-
Genetic conditions: Some NETs are associated with hereditary syndromes like multiple endocrine neoplasia type 1 (MEN1).
-
Lifestyle factors: While lifestyle plays a smaller role in NET development compared to other cancers, smoking and exposure to harmful substances can contribute in some cases.
-
Age: NETs are more commonly diagnosed in people aged 50 and over, though they can occur at any age.
-
Biological sex: Some types, such as lung NETs, are slightly more common in women.
What treatments are available for neuroendocrine cancers?
Treatment for neuroendocrine cancers depends on the tumour’s location, grade, and whether it has spread. In Australia, patients have access to a range of advanced treatment options, including:
Surgery
Often the first-line treatment, surgery aims to remove the tumour entirely or reduce its size.
Somatostatin analogues (SSAs)
These medications, like octreotide and lanreotide, are commonly used to control symptoms and slow tumour growth.
Peptide receptor radionuclide therapy (PRRT)
PRRT delivers targeted radiation to NET cells, minimising damage to healthy tissues. Australia is a leader in PRRT, with this treatment available in many major cancer centres.
Chemotherapy and targeted therapies
For more aggressive or advanced NETs, chemotherapy or drugs like everolimus and sunitinib may be recommended.
Supportive care
Managing symptoms and improving quality of life is an integral part of NET care, with Australian cancer centres offering multidisciplinary support teams.
What support is available in Australia?
Being diagnosed with a neuroendocrine tumour can feel overwhelming, but support is available. NeuroEndocrine Cancer Australia provides a range of resources, including:
-
Access to a dedicated NET nurse line for personalised advice.
-
Educational programs and online resources to help patients understand their diagnosis.
-
Advocacy for improved treatment access and research funding.
Support groups, both online and in-person, also offer valuable connections for patients and families navigating the challenges of living with NETs.
Why raising awareness matters
Although neuroendocrine cancers are less common, awareness can make a significant difference in early diagnosis and effective treatment. Many Australians still lack knowledge about NETs, and campaigns like NET Cancer Day on November 10 aim to change that by encouraging conversations and education around this complex condition.
Within Australia, NeuroEndocrine Cancer Australia continues to drive advocacy for NET patients within government, at a State and Federal level, constantly striving for improved and equitable care for NET patients. Their fundraising efforts, such as March4NETs also help to improve public awareness about NETs and its symptoms amongst the community.
What’s next for NET research in Australia?
Australia is at the forefront of neuroendocrine cancer research, with clinical trials exploring new therapies and diagnostic techniques. From advancing PRRT to developing personalised medicine approaches, the future of NET treatment looks promising.
Neuroendocrine cancers are poorly understood, but with growing awareness and advancements in care, patients in Australia are better equipped than ever to manage their diagnosis.
If you suspect you or someone you know may have NETs, speaking to a healthcare provider and accessing resources through organisations like NeuroEndocrine Cancer Australia can provide much-needed guidance and support.
