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Arden NET Centre (European Neuroendocrine Centre of Excellence)

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What are NETs?

Neuroendocrine tumours (NETs) are rare cancers that start in neuroendocrine cells. These cells are found throughout the body and help control how your body works by releasing hormones.

NETs can grow in many places, most commonly the digestive system, pancreas, and lungs. Some grow slowly over many years, while others can grow more quickly.

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Centre of Excellence

We are accredited by the European Neuroendocrine Tumour Society (ENETS) as a Centre of Excellence for:

  • Gastro-entero-pancreatic NETs
  • Lung neuroendocrine tumours

First accredited in 2015 and re-accredited since, demonstrating our commitment to high-quality care.

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Regional Centre

As the regional specialist centre, we see patients from Coventry and Warwickshire and accept referrals from hospitals across the wider region. Because NETs are rare, you need specialist care from a team with expert knowledge. That's what we provide.

Digestive System NETs

NETs that start in the digestive tract (gastrointestinal or GI tract)

  • Small bowel NETs – most common GI NET type
  • Appendix NETs – often found during surgery
  • Colon and rectum NETs – found during bowel screening
  • Stomach NETs – less common

Pancreatic NETs

Tumours that start in the pancreas

  • Functioning NETs – insulinoma, gastrinoma, glucagonoma
  • Non-functioning NETs – do not produce excess hormones

Lung and Chest NETs

Neuroendocrine tumours that start in the lungs

  • May cause cough, breathlessness
  • Sometimes found on scans for other reasons
  • Specialist chest team available

Adrenal and Rare NETs

NETs in other parts of the body

  • Phaeochromocytoma – adrenal gland tumour
  • NETs in thymus, kidneys, other organs

Genetic Conditions

Inherited conditions that increase NET risk

  • MEN syndromes – Multiple Endocrine Neoplasia
  • Genetic testing available
  • Family screening where appropriate

For patients

  1. Speak to your GP: They can arrange initial tests and refer you to a specialist if needed.
  2. Referral is made: Your GP or hospital doctor sends us your details and test results.
  3. We review your case: Our team reviews your referral and decides how quickly you need to be seen.
  4. Appointment letter: We contact you with an appointment, usually by letter or text message.

For GPs and doctors

We welcome referrals from GPs, hospital specialists and other NHS trusts across the region.Complete this form and email it to Nicola Gilmore at NET.MDT@uhcw.nhs.uk

When to refer

  • Confirmed or suspected neuroendocrine tumour (any site)
  • Patients requiring specialist MDT input for diagnosis, staging, or treatment planning
  • Patients who may benefit from treatments only available at a specialist centre (e.g. PRRT)
  • Patients with inherited conditions associated with NETs (e.g. MEN syndromes)

Information to include

  • Relevant imaging reports and histopathology
  • Biochemistry results (chromogranin A, gut hormones, 24-hour urinary 5-HIAA)
  • Brief clinical history and current symptoms
  • Any genetic testing results

Before Your Appointment

  • You'll receive an appointment letter or text
  • Bring a list of your current medicines
  • Bring any recent test results or letters
  • Write down questions you want to ask
  • You can bring a family member or friend

On the Day

  • Clinics are usually at the Wisdem Centre at University Hospital
  • You may see a consultant, nurse specialist, or trainee
  • We'll ask about your symptoms and medical history
  • We'll explain test results and discuss next steps
  • First appointments are usually 30-45 minutes

After Your Appointment

  • Your case is discussed at our weekly MDT meeting
  • We'll contact you with recommendations
  • Results are sent to your GP
  • Most patients have regular follow-ups
  • Contact our nurses if symptoms change

In an emergency, go to your nearest Emergency Department or call 999.

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Investigations and Tests

  • CT scan – detailed X-ray images
  • MRI scan – magnetic imaging
  • PET-CT scan – with Gallium-68 tracer
  • MIBG scan – for certain NET types
  • Endoscopy – camera and biopsy
  • Blood & urine tests – hormone markers

All scans available on site at UHCW

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Surgery

  • Removal of primary tumour
  • Liver surgery including ablation
  • Pancreatic surgery
  • Bowel surgery
  • Lung surgery

Advanced robotic surgery available for suitable patients

Radiological Treatments

  • Ablative Therapy – targeted destruction of tumour tissue
  • Trans-arterial Embolisation – blocking blood supply to tumours
  • SIRT – Selective Internal Radiation Therapy
  • Interventional Venous Sampling – to locate hormone-secreting tumours

Performed by specialist Interventional Radiologists

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Nuclear Medicine

Peptide Receptor Radionuclide Therapy delivers targeted radiation directly to NET cells.

Available at UHCW since 2019. Your team will discuss if this may be an option for you.

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Medicines

  • Somatostatin analogues – monthly injections to slow growth and control symptoms
  • Targeted therapies – medicines targeting NET growth pathways
  • Chemotherapy – for faster-growing NETs

 

All medicine decisions made by your MDT

Supportive Care

  • Dietary advice – tailored nutrition support
  • Pain management – specialist pain control
  • Psychological support – for patients and families
  • Palliative care – symptom control at any stage

 

  • Our specialist nurses can answer questions and provide advice throughout your journey. Email Netnurse@uhcw.nhs.uk or call 024 7696 5976.
  • The Cancer Information Centre is a quiet space at the hospital where you can talk to someone, get practical advice and find local support.
  • Our Clinical Psychology team can offer support to patients and families at any time – you don't need to wait until you're in crisis.

National NET organisations

Neuroendocrine Cancer UK
UK and Ireland NET Society
European NET Society
Macmillan Cancer Support

If you need information in large print, audio, easy read, another language or Braille, please tell your specialist nurse or the Cancer Information Centre.

Patients can opt to participate in phase 3 clinical trials and NET-related research; the team is actively participating in NET related research and publishing regularly in renowned articles in the field.

Our Research Areas

  • Improving diagnosis of NETs
  • Understanding how NETs develop and grow
  • Evaluating new treatments
  • Improving quality of life
  • Service evaluation and patient experience

Clinical Trials

Taking part in a clinical trial can give you access to new treatments. Participation is always your choice and won't affect your care if you decline.

Interested? Speak to your consultant or specialist nurse about trials that might be suitable for you.


Meet the team

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