FAQs

NeuroEndocrine Cancer Australia (NECA) offers face-to-face support groups across Australia, a national online group for those in rural and remote areas, private Facebook groups for connecting with the NET community and telehealth specialist support, including access to a neuroendocrine cancer nurse, counsellor, and dietitian. Learn more

Neuroendocrine cancer develops from neuroendocrine cells when they undergo changes, causing them to divide uncontrollably, growing into a mass called a tumour. These neuroendocrine cells create, store and secrete a variety of hormones for normal bodily function. To learn more, watch our explainer video - What is the Neuroendocrine System and how do Neuroendocrine Tumours develop?

When considered collectively, neuroendocrine cancer is now classified as a common cancer and is the 7th most commonly diagnosed cancer in Australia. However, when examined by individual tumour sites, each type of neuroendocrine cancer remains rare. Click here to view other neuroendocrine cancer facts.

Neuroendocrine cancer symptoms may be flushing, wheezing, palpitations, diarrhoea, fatigue and rashes. To learn more about neuroendocrine cancer symptoms click here.

Treatment depends on the tumour type and location. Options may include surgery, targeted therapies, minimally invasive procedures, or careful monitoring if tumours are small and stable.

Many people with VHL lead full and active lives with appropriate monitoring and specialist care. Early detection and coordinated treatment are key to managing the condition successfully.

Von hippel lindau (VHL) is a rare inherited genetic condition that increases the risk of developing tumours and cysts in different parts of the body, including the brain, spine, eyes, kidneys, pancreas, and adrenal glands. Some growths are benign, while others may become cancerous.

VHL itself is not a cancer, but it is a genetic syndrome that has genetic mutations which increase the risk of several cancer types, including clear cell renal cell carcinoma and phaeochromocytoma. Some people with VHL may also develop neuroendocrine cancer.

VHL follows an autosomal dominant inheritance pattern. This means a child of an affected parent has a 50 percent chance of inheriting the altered gene. Around 20 percent of cases occur as new mutations without a family history.

Symptoms vary depending on where tumours develop. Common signs include vision changes, headaches, balance problems, high blood pressure, or abdominal pain. Many people are diagnosed through screening rather than symptoms.

Diagnosis usually involves a combination of clinical assessment, imaging scans, and genetic testing to confirm a mutation in the VHL gene.

There is currently no cure for VHL. Management focuses on lifelong monitoring and treating tumours early to prevent complications and improve quality of life.

Neuroendocrine cancer can develop anywhere in the body, but most commonly arises in the gastrointestinal tract and pancreas (around 60% of cases), followed by the lungs (approximately 20%). Click here to view different types of neuroendocrine cancers.

Neuroendocrine cancer develops from neuroendocrine cells when they undergo changes, causing them to divide uncontrollably, growing into a mass called a tumour. These neuroendocrine cells create, store and secrete a variety of hormones for normal bodily function. To learn more, watch our explainer video - What is the Neuroendocrine System and how do Neuroendocrine Tumours develop?