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Health condition · Clinically reviewed

Neuroendocrine tumours, carcinoid syndrome - and the modern UK treatment pathway.

Rare, often slow-growing, and increasingly well managed with specialist scanning, somatostatin analogues and targeted radiotherapy. Read our fuller clinical overview on neuroendocrine tumors for the full picture.

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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, NHS England specialist commissioning and peer-reviewed sources you can see at the end.

  • 03

    Current for 2026

    Reflects modern UK practice including Ga-68 DOTATATE PET, somatostatin analogues and PRRT at commissioned centres.

Key facts

Neuroendocrine tumours at a glance.

The essentials, in plain English - what they are, how they behave, and how they’re managed in the UK today.

  • What it is

    Rare, usually slow-growing tumours arising from neuroendocrine cells, most often in the gut, pancreas or lungs.

  • Functioning or not

    Some tumours release hormones and cause symptoms (functioning); many are silent and found incidentally (non-functioning).

  • Carcinoid syndrome

    Flushing, diarrhoea and wheeze from hormone release, usually once disease has spread to the liver.

  • Key diagnostics

    Chromogranin A, urinary or plasma 5-HIAA, and Ga-68 DOTATATE PET-CT to find and stage the tumour.

  • Core treatment

    Somatostatin analogues control symptoms and growth; surgery, PRRT and targeted therapy for more advanced disease.

  • Where it is managed

    NHS England commissions specialist neuroendocrine tumour centres - multidisciplinary care improves outcomes.

Why this guide matters

A rare cancer that is often missed for years.

Vague symptoms and slow growth mean NETs are frequently mistaken for IBS or asthma. The three points below shape everything else on this page.

  • Symptoms are easily missed

    Flushing and diarrhoea are often blamed on diet, stress or IBS for years before a NET is considered.

  • Specialist scanning changes everything

    Ga-68 DOTATATE PET-CT finds tumours that conventional imaging misses, and shapes whether PRRT is an option.

  • Centralised care improves outcomes

    Commissioned neuroendocrine tumour centres bring together the specialists needed for the best long-term plan.

How the diagnosis is made

From vague symptoms to a confirmed diagnosis.

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

  1. 01

    Suspecting

    Symptom review

    Flushing, diarrhoea, wheeze, abdominal pain or weight change prompt a closer look, though many NETs cause no symptoms at all.

  2. 02

    Suspecting

    Chromogranin A blood test

    A general tumour marker for neuroendocrine cells - raised levels support the diagnosis but aren’t specific on their own.

  3. 03

    Suspecting

    5-HIAA testing

    A 24-hour urine or plasma sample measures a serotonin breakdown product, useful when carcinoid syndrome is suspected.

  4. 04

    Localising

    Cross-sectional imaging

    CT or MRI of the chest, abdomen and pelvis locates the primary tumour and checks for spread, particularly to the liver.

  5. 05

    Localising

    Ga-68 DOTATATE PET-CT

    A specialist scan that lights up somatostatin-receptor-rich tissue - the most sensitive way to find and stage a NET.

  6. 06

    Localising

    Endoscopy or biopsy

    Tissue confirms the diagnosis and grades the tumour (Ki-67 proliferation index), which shapes treatment choice.

  7. 07

    Planning

    Specialist MDT referral

    Confirmed or suspected NETs go to a commissioned neuroendocrine tumour centre for a multidisciplinary team plan.

Typical timeline: weeks from first suspicion to a full specialist MDT plan.

Symptoms

What neuroendocrine tumours actually look like.

A mix of vague, easily-missed signs and - in carcinoid syndrome - a more recognisable pattern. And the features that mean it’s time to escalate.

  • Flushing

    Sudden facial or upper-body redness and warmth, often triggered by alcohol, stress or certain foods, and a hallmark of carcinoid syndrome.

  • Diarrhoea

    Frequent, watery bowel motions caused by excess hormone release - can be mistaken for irritable bowel syndrome for years.

  • Wheeze and breathlessness

    Bronchospasm from hormone surges, sometimes confused with asthma, particularly during a flushing episode.

  • Abdominal pain

    Vague or cramping pain from a bowel or pancreatic tumour, or from stretching of the liver capsule with metastases.

  • Weight change

    Unintended weight loss, or occasionally weight gain, depending on the tumour type and hormones produced.

  • Incidental finding

    Many non-functioning NETs are picked up by chance on a scan done for an unrelated reason.

  • Functional hormone syndromes

    Rarer tumours cause distinct patterns - insulinomas cause low blood sugar, gastrinomas cause peptic ulcers.

  • Red flag - carcinoid heart disease

    Long-standing hormone exposure can thicken heart valves - breathlessness or leg swelling need urgent cardiac assessment.

Treatment

How neuroendocrine tumours are treated in the UK.

Somatostatin analogues and surgery first where possible, with PRRT and targeted therapy for more advanced or progressive disease.

  • Somatostatin analogues

    Octreotide or lanreotide - first-line for controlling hormone symptoms and slowing tumour growth in many NETs.

  • Surgery

    Removal of the primary tumour, and sometimes liver metastases, offers the best chance of cure or long-term control.

  • Peptide receptor radionuclide therapy (PRRT)

    Lutetium-177 DOTATATE delivers targeted radiation to somatostatin-receptor-positive tumours, used when disease progresses.

  • Targeted molecular therapy

    Everolimus or sunitinib for progressive pancreatic or advanced NETs, blocking growth signalling pathways.

  • Liver-directed therapy

    Embolisation or ablation for liver metastases - reduces tumour bulk and eases hormone-driven symptoms.

  • Interferon alpha

    A second-line option for symptom and growth control when other treatments are unsuitable or exhausted.

  • Chemotherapy

    Reserved for higher-grade or rapidly progressive neuroendocrine carcinomas, rather than typical slow-growing NETs.

  • Active surveillance

    For small, low-grade, non-functioning tumours, regular scanning may be safer and kinder than immediate intervention.

What this guide is based on

The sources behind every claim on this page.

UK national guidance and specialist 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 team knows your case and history and can tell you which parts apply to you. If in doubt, get seen.

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

  • NHS England. Specialised commissioning for neuroendocrine tumours.

  • European Neuroendocrine Tumor Society (ENETS). Consensus guidelines.

  • UK and Ireland Neuroendocrine Tumour Society (UKINETS). Guidance for management.

Red flags

When a NET needs urgent attention.

Most neuroendocrine tumours are managed steadily over years. These are the situations that aren’t routine - and where urgent review is needed.

  • Carcinoid crisis

    Severe flushing, wheeze, and dangerously low or high blood pressure, particularly during surgery or anaesthesia - a medical emergency needing immediate specialist input.

  • Carcinoid heart disease

    Breathlessness, ankle swelling or fatigue in someone with known carcinoid syndrome warrants urgent echocardiogram and cardiology review.

  • Bowel obstruction

    Severe abdominal pain, distension and vomiting can signal a bowel NET causing obstruction - needs same-day assessment.

  • Severe hypoglycaemia

    Confusion, sweating or collapse may point to an insulin-secreting tumour and needs urgent blood glucose checking.

  • Unexplained persistent flushing or diarrhoea

    Symptoms lasting weeks to months, especially with weight loss, deserve chromogranin A and 5-HIAA testing rather than reassurance alone.

  • Rapid symptom progression

    A sudden change in a previously stable NET, or new symptoms in someone with known liver metastases, needs prompt specialist review.

  • Jaundice

    Yellowing of the skin or eyes with a known or suspected pancreatic NET needs urgent assessment for bile duct obstruction.

  • Peptic ulcer disease resistant to treatment

    Recurrent or unusual ulcers can point to a gastrin-secreting tumour (Zollinger-Ellison syndrome) and deserve specialist gastroenterology input.

  • New or worsening breathlessness on treatment

    Could reflect disease progression, cardiac involvement or a treatment side effect - always worth an urgent call to the NET team.

Living with it

Often a long-term condition, not a single event.

Four things that make the biggest difference day to day - tracking symptoms, staying with a specialist centre, watching diet triggers, and finding support.

A quiet reminder

Many NETs are managed for years, not months.

Stable, well-controlled disease is a realistic and common outcome, even when a tumour can’t be fully removed.

  1. 01 Track

    Keep a symptom diary

    Note flushing, bowel habit and triggers - it helps your team judge whether treatment is working between scans.

  2. 02 Team

    Stay with your specialist centre

    NET care works best coordinated through one commissioned centre, even if some appointments happen locally.

  3. 03 Nutrition

    Watch diet and alcohol triggers

    Alcohol, spicy food and large meals can provoke flushing and diarrhoea - small adjustments often help day to day.

  4. 04 Support

    Connect with others

    NETs are rare - patient organisations and support groups offer experience and reassurance that general advice can’t.

Frequently asked

Everything we get asked about neuroendocrine tumours.

Quick answers on carcinoid syndrome, DOTATATE scanning, PRRT and specialist care.

  • What is a neuroendocrine tumour?

    A tumour arising from neuroendocrine cells, which are scattered throughout the body but concentrated in the gut, pancreas and lungs. Most grow slowly, and behaviour ranges from indolent to more aggressive depending on grade and location.

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

    Functioning tumours release hormones that cause recognisable symptoms, such as flushing or diarrhoea in carcinoid syndrome. Non-functioning tumours don’t produce active hormones and are often found incidentally on a scan done for another reason.

  • What is carcinoid syndrome?

    A collection of symptoms - flushing, diarrhoea, wheeze and sometimes carcinoid heart disease - caused by hormones released from a neuroendocrine tumour, usually once it has spread to the liver.

  • How are neuroendocrine tumours diagnosed?

    Blood tests such as chromogranin A, urinary or plasma 5-HIAA, cross-sectional imaging, and a Ga-68 DOTATATE PET-CT scan that highlights somatostatin-receptor-rich tissue. A biopsy confirms the diagnosis and grades the tumour.

  • What is PRRT?

    Peptide receptor radionuclide therapy - typically lutetium-177 DOTATATE - delivers targeted radiation directly to tumour cells that carry somatostatin receptors. It’s used for progressive NETs that still take up the tracer on PET scanning.

  • Where are neuroendocrine tumours treated in the UK?

    NHS England commissions specialist neuroendocrine tumour centres that provide multidisciplinary team care - combining endocrinology, oncology, surgery and nuclear medicine. Referral to one of these centres is recommended for confirmed or suspected NETs.

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