Expert Advisory Groups

Neuroendocrine Tumours (NETs) are rare.  NETs develop in different parts of the body and behave in different ways.  Most NETs develop slowly over some years. They may not cause symptoms in the early stages so it is not unusual for people to find that a NET has already spread to another part of the body when they are diagnosed.

More recently doctors have been calling them neuroendocrine neoplasms (NENs). This is an umbrella term for this group of disorders. Then depending on how slow or fast growing the cells are they are called either neuroendocrine tumours (NETs) or neuroendocrine carcinomas (NECs).

Around 5 out of every 10 NETs start in the gastrointestinal (GI) system.  Around 2 out of every 10 NETs start in the lung.  In some cases, doctors do not know where the original NET started.  This is called cancer of unknown primary (CUP).

Over 4,000 people are diagnosed with a NET each year in the UK. They are getting more common across the world. This might be because there are better tests to diagnose them.

The aim of the NET EAG group is to formally develop pathways across the Midlands that are equitable and consistent. The pathways are to be aligned to national guidance and best practice.  There are 2 centres of excellence; University Hospitals Birmingham (UHB) and University of Coventry & Warwickshire (UHCW) who offer NET advice to local hospitals in the region.

Chair: Mr Samuel Ford, Consultant Surgeon, University Hospitals Birmingham

Deputy Chair: Ms. Stacey Smith, Neuroendocrine Tumour CNS, University Hospitals Birmingham

Guidelines:

Documents: 

Neuroendocrine Cancer UK Video: High Grade Neuroendocrine Carcinoma Explained

Useful links:

Neuroendocrine Cancer UK: Conferences & Events

INCA: Find a Clinical Trial

INCA: NET Cancer Advocacy and Policy Toolkit

YouTube: INCA Genetic NETs Video

ESMO Clinical Practice Guidelines: endocrine & neuroendocrine cancers

Neuroendocrine tumours and carcinoid syndrome - NHS

What are neuroendocrine tumours (NETs)? | Cancer Research UK

Neuroendocrine tumours (NETs) - Macmillan

Pancreatic NETs - Cancer Research UK

Lung NETs - Cancer Research UK

Stomach NETs - Cancer Research UK

Small Bowel NETs - Cancer Research UK

Large Bowel/Rectal NETs - Cancer Research UK

Video: treating neuroendocrine tumours - British Society of Gastroenterology (BSG)

Neuroendocrine Cancer UK

UK and Ireland Neuroendocrine Tumour Society

European Neuroendocrine Tumor Society (ENETS)

International Conference on Neuroendocrine Tumors and Preventine

British Society for Neuroendocrinology

Journal of Endocrinology

Targeted radionuclide therapy for NETs | Macmillan Cancer Support

Somatostatin analogues for neuroendocrine tumours (NETs) | Macmillan Cancer Support

British Nuclear Medicine Society

Radionuclide Supply - British Nuclear Medicine Society