Health condition
Neuroendocrine tumours overview
Neuroendocrine tumours (NETs) are cancers of hormone-capable cells - commonest in the small bowel, pancreas and lung - often slow-growing, frequently diagnosed late, and best managed in specialist NET centres.
Why trust this guide
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Editorial team
Written by our editorial team from the UK sources listed on each page.
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Sourced from guidance
Checked against current NHS and UK specialist society guidance at the time of review.
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Current for 2026
Reviewed on 2026-09-27 with the next review scheduled for 2027-09-27.
Key facts
The essentials at a glance.
The symptoms to recognise, when to seek help, which specialist to see, and what treatment usually involves.
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Behaviour spans decades-slow to aggressive; grade (Ki-67 index) and site drive treatment more than the word 'cancer' alone
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Functioning NETs cause hormone syndromes (carcinoid, insulinoma, gastrinoma); non-functioning tumours present with mass effects or by chance
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Core workup: chromogranin A, specific hormones as indicated, CT/MRI and gallium-68 DOTATATE PET
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Treatments include surgery, somatostatin analogues, targeted drugs (everolimus, sunitinib), liver-directed therapy and PRRT (lutetium-177)
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UK care is organised around NET multidisciplinary teams and ENETS centres of excellence - referral there changes outcomes
Understanding the condition
What it is and what happens next.
What causes it, how it is diagnosed, and the treatment routes available in the UK.
What it is and how it feels
NET cells keep the machinery of hormone secretion and the somatostatin receptors that go with it - properties that shape everything from symptoms to scanning to therapy. Many grow so slowly that patients live years before vague flushing, diarrhoea, hypoglycaemia or an incidental scan finding brings diagnosis; median delays remain long. Grading matters enormously: a low-grade small-bowel NET and a high-grade neuroendocrine carcinoma share a family name but almost nothing else.
Diagnosis and treatment routes
Good care starts with complete staging - biochemistry, anatomical imaging and DOTATATE PET - and a NET MDT discussion, because sequencing surgery, monthly somatostatin analogues, targeted agents, embolisation and lutetium PRRT is genuinely specialist territory, and watchful waiting is sometimes the right answer. Patients are entitled to ask whether their case has been reviewed at a NET centre. If you are navigating a new NET diagnosis, a private specialist opinion is typically available within about two weeks.
Seeing a specialist
Who to see, and how quickly you can be seen.
The specialist for this condition is usually a consultant endocrinologist or NET specialist. Your GP can refer you on the NHS, or you can arrange a private consultation directly.
A quiet reminder
This guide is for information, not medical advice.
Your GP knows your history and can tell you which parts apply to you. If in doubt, see them - and seek urgent care for any of the emergency symptoms described above.
Frequently asked
Common questions about Neuroendocrine tumours overview.
Quick, plain-English answers to what people ask us most.
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What are neuroendocrine tumours?
Neuroendocrine tumours are a diverse group of tumours arising from neuroendocrine cells, found throughout the body but most often in the gut, pancreas or lungs, ranging from slow-growing and low-risk to more aggressive forms.
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What causes neuroendocrine tumours?
Most occur without a clear identifiable cause, though a minority are linked to inherited genetic syndromes such as multiple endocrine neoplasia or neurofibromatosis, which increase the likelihood of developing these tumours.
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What are the symptoms of neuroendocrine tumours?
Symptoms vary widely depending on the tumour's location and whether it produces excess hormones, ranging from no symptoms at all, to specific hormone-related symptoms like flushing or diarrhoea, to general symptoms like abdominal pain or weight loss.
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Are neuroendocrine tumours dangerous?
Behaviour varies considerably from very slow-growing, low-risk tumours with excellent long-term outlook, to more aggressive forms, so accurate grading and staging at diagnosis is important for understanding individual risk.
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Can neuroendocrine tumours be cured?
Localised, low-grade tumours can often be cured with surgical removal, while more advanced disease is typically managed as a long-term, sometimes very slowly progressive, condition rather than definitively cured.
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How are neuroendocrine tumours treated?
Treatment options include surgery for localised disease, medication to control hormone-related symptoms, and for more advanced disease, targeted radionuclide therapy, other targeted drugs, or chemotherapy, tailored to tumour grade and location.
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When should I see a specialist about symptoms suggestive of a neuroendocrine tumour, and how quickly can I be seen privately?
See a specialist for unexplained flushing, diarrhoea, or other symptoms suggestive of hormone excess, or an incidental finding on imaging. A private endocrinologist or oncologist can typically arrange assessment within about two weeks.