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Health condition · Clinically reviewed

Pancreatic neuroendocrine tumours, rare, hormone-active - and increasingly treatable.

These tumours arise from the pancreas's hormone-producing cells and can cause striking hormone-excess symptoms or none at all. Diagnosis and care sit with a specialist NET team, following NICE NG221.

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A radiographer guides a patient onto the bed of an advanced 3 Tesla MRI scanner in a London imaging suite

Why trust this guide

  • 01

    Clinically reviewed

    Written by our editorial team and reviewed by a registered UK clinician before publication.

  • 02

    Sourced from guidance

    Checked against NICE NG221 and peer-reviewed neuroendocrine tumour sources you can see at the end.

  • 03

    Current for 2026

    Reflects modern UK guidance including Ga-68 DOTATATE PET imaging and specialist commissioned NET services.

Key facts

Pancreatic neuroendocrine tumours at a glance.

The essentials, in plain English - what it is, the functioning subtypes, and how it's managed in the UK today.

  • What it is

    A rare tumour arising from the hormone-producing islet cells of the pancreas - part of the wider neuroendocrine tumour family.

  • Functioning types

    Insulinoma, gastrinoma, glucagonoma, VIPoma and somatostatinoma each secrete a hormone that causes a distinct syndrome.

  • Non-functioning

    Roughly half secrete no active hormone and often present late, once large enough to cause pain, jaundice or weight loss.

  • Key imaging

    Ga-68 DOTATATE PET maps somatostatin receptors and finds tumours that CT and MRI can miss.

  • Curative option

    Surgical resection remains the only potentially curative treatment for localised disease.

  • Specialist care

    Managed by a specialist commissioned NET or pancreatic MDT under NICE NG221 - not general oncology alone.

Why this guide matters

A rare tumour that hides in plain sight.

Because symptoms can be dramatic or entirely absent, these tumours are often missed or misdiagnosed for years. The three points below shape everything else on this page.

  • Function determines the picture

    A functioning tumour announces itself through hormone-excess symptoms; a non-functioning one often stays silent until it is large.

  • Imaging has moved on

    Ga-68 DOTATATE PET finds somatostatin-receptor-positive disease that older scans could miss, sharpening both diagnosis and treatment planning.

  • Specialist teams change outcomes

    Care under a commissioned NET or pancreatic MDT, per NICE NG221, means access to the full range of surgical, medical and radionuclide options.

How the diagnosis is made

From first clue to a specialist plan.

The steps a UK specialist team will normally follow under NICE NG221, in order - so you know what to expect and why.

  1. 01

    Suspecting

    Recognising the pattern

    Hypoglycaemic episodes, recurrent peptic ulcers, a characteristic rash or severe watery diarrhoea point towards a functioning tumour and its hormone.

  2. 02

    Suspecting

    Targeted biochemical testing

    Fasting glucose, insulin and C-peptide for suspected insulinoma, or serum gastrin for suspected gastrinoma - matched to the presenting syndrome.

  3. 03

    Suspecting

    Chromogranin A

    A general neuroendocrine tumour marker used alongside the specific hormone panel, though it can be raised for other reasons too.

  4. 04

    Localising

    Cross-sectional imaging

    CT or MRI of the pancreas locates the tumour, measures its size and checks the liver and lymph nodes for spread.

  5. 05

    Localising

    Endoscopic ultrasound

    Detects small pancreatic lesions that cross-sectional imaging can miss and allows a guided biopsy for tissue diagnosis.

  6. 06

    Planning

    Ga-68 DOTATATE PET

    Somatostatin-receptor imaging that confirms diagnosis, stages disease accurately and identifies candidates for receptor-targeted treatment.

  7. 07

    Planning

    Specialist NET or pancreatic MDT

    Per NICE NG221, every case is discussed at a specialist commissioned neuroendocrine tumour or pancreatic multidisciplinary team meeting before treatment begins.

Typical timeline: a first specialist review to a confirmed staging and plan within a few weeks.

Symptoms

What each tumour type actually looks like.

Functioning tumours announce themselves through hormone excess; non-functioning ones often stay quiet until they're larger. And the features that mean it's time to seek urgent care.

  • Hypoglycaemic episodes

    Sweating, confusion, tremor and even blackouts from insulinoma - classically worse when fasting or after exercise.

  • Severe or recurrent peptic ulcers

    Gastrinoma drives excess stomach acid, causing ulcers that are unusually severe, multiple, or resistant to standard treatment - Zollinger-Ellison syndrome.

  • Necrolytic migratory erythema

    A characteristic spreading rash, often with weight loss and mild diabetes, seen in glucagonoma.

  • Profuse watery diarrhoea

    Large-volume, persistent diarrhoea with low potassium is the hallmark of VIPoma - sometimes called pancreatic cholera.

  • Gallstones and mild diabetes

    Somatostatinoma can present with gallstones, steatorrhoea and diabetes, though it is often found incidentally.

  • Abdominal pain

    A common, non-specific symptom of non-functioning tumours once they grow large enough to press on nearby structures.

  • Jaundice or unexplained weight loss

    Signs that a non-functioning tumour has grown significantly or is affecting the bile duct - often the first clue that prompts investigation.

  • Red flag - incidental pancreatic finding

    A pancreatic lesion spotted on unrelated imaging deserves proper work-up, even without symptoms.

Treatment

How pancreatic neuroendocrine tumours are treated.

Surgery first when curative resection is possible, medical control of hormone excess throughout, and targeted or radionuclide therapy for advanced disease.

  • Surgical resection

    The only potentially curative option for localised disease - ranging from enucleation of small tumours to formal pancreatic resection.

  • Somatostatin analogues

    Octreotide or lanreotide control hormone-excess symptoms and slow tumour growth in somatostatin-receptor-positive disease.

  • Everolimus

    An mTOR-inhibitor targeted therapy used for advanced, unresectable pancreatic neuroendocrine tumours.

  • Sunitinib

    A targeted tyrosine kinase inhibitor licensed for progressive advanced pancreatic neuroendocrine tumours.

  • PRRT

    Peptide receptor radionuclide therapy delivers targeted radiation to somatostatin-receptor-positive metastatic disease at specialist centres.

  • Proton pump inhibitors

    High-dose PPIs control the acid hypersecretion of gastrinoma and protect against ulcer complications while definitive treatment is planned.

  • Diazoxide

    Suppresses insulin release to manage hypoglycaemia from insulinoma when surgery is delayed or not yet possible.

  • Specialist MDT follow-up

    Ongoing surveillance with biochemistry and imaging at a commissioned NET centre, since recurrence can appear years after treatment.

What this guide is based on

The sources behind every claim on this page.

UK national guidance and specialist neuroendocrine tumour society standards, current at the time of last review.

Key references

Guidelines and standards we relied on.

A quiet reminder

This guide is for information, not medical advice.

Your specialist NET team knows your tumour and your history, and can tell you which parts apply to you. If in doubt, get seen.

  • NICE. Neuroendocrine tumours: diagnosis and management (NG221).

  • European Neuroendocrine Tumor Society (ENETS). Consensus guidelines for pancreatic neuroendocrine tumours.

  • North American Neuroendocrine Tumor Society (NANETS). Guidelines for pancreatic NET management.

  • British Society of Gastroenterology. Guidance on neuroendocrine tumours.

Red flags

When it needs urgent attention.

Most care happens through planned specialist appointments. These are the situations that aren't - and need same-day or emergency assessment.

  • Severe or prolonged hypoglycaemia

    Recurrent confusion, seizures or loss of consciousness from suspected insulinoma need urgent same-day medical assessment.

  • Bleeding or perforated peptic ulcer

    Vomiting blood, black tarry stools or sudden severe abdominal pain in known or suspected gastrinoma is a medical emergency.

  • Severe dehydration from VIPoma diarrhoea

    Profuse watery diarrhoea with low potassium can cause dangerous dehydration and cardiac rhythm problems - needs urgent fluid and electrolyte correction.

  • Carcinoid-like crisis

    Sudden flushing, palpitations, low blood pressure or breathing difficulty during a procedure needs immediate specialist management.

  • New jaundice

    Yellowing of the skin or eyes with a known or suspected pancreatic tumour suggests bile duct obstruction and warrants urgent review.

  • Rapidly enlarging liver metastases

    Fast growth on surveillance imaging changes treatment priorities and should trigger prompt MDT reassessment.

  • Unexplained weight loss with abdominal mass

    A palpable mass with systemic weight loss needs urgent imaging and specialist referral, not a watch-and-wait approach.

  • Uncontrolled hormone-excess symptoms

    Symptoms that worsen despite somatostatin analogues or medical therapy need an urgent specialist medication review.

  • Suspected MEN1 syndrome

    Multiple endocrine tumours, a strong family history, or parathyroid and pituitary disease alongside a pancreatic NET should prompt genetic assessment.

Living with it

A rare diagnosis, with a specialist team behind you.

Four things that make the biggest difference day to day - tracking symptoms, keeping up with surveillance, finding the right support, and understanding your specific tumour type.

A quiet reminder

A rare diagnosis deserves a specialist, not a guess.

Care at a commissioned neuroendocrine tumour centre - with access to the full toolkit, from surgery to PRRT - makes a genuine difference.

  1. 01 Monitor

    Keep a symptom and glucose diary

    For functioning tumours, tracking symptoms, meal timing and blood glucose helps your team fine-tune medical management between scans.

  2. 02 Attend

    Stay on top of surveillance

    Neuroendocrine tumours can recur years later - regular biochemistry and imaging at your NET centre catches change early.

  3. 03 Support

    Connect with a NET-specific charity

    Organisations dedicated to neuroendocrine tumours offer practical advice and peer support that general cancer resources may not cover.

  4. 04 Ask

    Understand your specific tumour type

    Functioning and non-functioning pancreatic neuroendocrine tumours behave differently - ask your MDT what applies specifically to you.

Frequently asked

Everything we get asked about pancreatic neuroendocrine tumours.

Quick answers on functioning subtypes, diagnosis, PRRT and how this differs from pancreatic cancer.

  • What is a pancreatic neuroendocrine tumour?

    A rare tumour that arises from the hormone-producing islet cells of the pancreas, part of the wider family of neuroendocrine tumours. It can be functioning, meaning it secretes hormones that cause a recognisable syndrome, or non-functioning, meaning it secretes nothing active.

  • What is the difference between functioning and non-functioning tumours?

    Functioning tumours - such as insulinoma, gastrinoma, glucagonoma, VIPoma and somatostatinoma - secrete a hormone that causes specific symptoms like hypoglycaemia or severe diarrhoea, which often leads to earlier diagnosis. Non-functioning tumours secrete no active hormone and are frequently found later, once they cause pain or are spotted incidentally on imaging.

  • How is it diagnosed?

    Diagnosis follows NICE NG221 and combines targeted biochemical tests, chromogranin A, cross-sectional imaging with CT or MRI, endoscopic ultrasound, and Ga-68 DOTATATE PET to map somatostatin receptors. Every case is then discussed at a specialist commissioned neuroendocrine tumour or pancreatic multidisciplinary team.

  • Can pancreatic neuroendocrine tumours be cured?

    Surgical resection of localised disease offers the only potentially curative option. For advanced or metastatic disease, treatment focuses on controlling growth and symptoms rather than cure, using somatostatin analogues, targeted therapy or PRRT.

  • What is PRRT?

    Peptide receptor radionuclide therapy delivers targeted radiation directly to somatostatin-receptor-positive tumour cells. It is used for metastatic pancreatic neuroendocrine tumours that express these receptors, and is only available at specialist centres.

  • How is this different from other pancreatic conditions?

    Pancreatic neuroendocrine tumours are much rarer than pancreatic cancer and generally grow more slowly, with a different treatment pathway and, for many patients, a better outlook. They sit within the broader category of neuroendocrine tumours, which can also arise in the gut and lungs.

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