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Types and treatment of neuroendocrine tumours (NETs)

Read about the different types of NET, it's treatment and how to cope.

Types of neuroendocrine tumour

There are a number of different types of NET. They are generally called after the organ or type of cell they develop in.

NETs most often develop in the gut or pancreas. These tumours are sometimes grouped together and called gastroenteropancreatic neuroendocrine tumours or GEP NETs for short.

NETs in the gut

NETs of the gut are most often carcinoid tumours. They might also just be called carcinoid. 

NETs in the pancreas

NETs that develop in the pancreas are also called endocrine tumours of the pancreas. 

These are all rare types of tumour and include:

  • insulinomas, which produce insulin
  • gastrinomas, which produce gastrin (a hormone that helps digest food)
  • glucagonomas, which produce glucagon (a hormone that helps to raise blood sugar levels)
  • VIPomas, which produce vasoactive intestinal peptide (VIP for short) that helps digestion and a number of other body processes
  • somatostatinoma, which produces the hormone somatostatin that helps with digestion

Some of these tumours can also develop outside the pancreas. For example, gastrinomas have been reported in the medical literature to develop in the ovaries, kidneys, stomach and liver.

NETs in the lung

NETs that develop in the lung are usually carcinoid tumours.

Other rare types

There are a number of other even rarer types of NET including those that develop in the:

  • thyroid gland – medullary thyroid tumours
  • skin – Merkel cell cancer
  • pituitary gland – a small gland in the brain
  • parathyroid gland – small glands attached to the thyroid gland
  • adrenal glands – usually called adrenomedullary NETs

Treatment

The type of treatment you have depends on which type of NET you have and whether it has spread elsewhere in the body.

Treatment might include one of the following or a combination:

  • surgery
  • chemotherapy
  • drug treatment to control symptoms caused by the extra hormones

Risks and causes

The causes of NETs are largely unknown.

People who have one of the rare family syndromes have a higher risk of developing NETs.

The family syndromes include:

  • multiple endocrine neoplasia type 1 (MEN 1)
  • neurofibromatosis type 1
  • von Hippel-Lindau syndrome (VHL)

We also know from research that if one of your parents has had a NET your risk of developing it increases slightly.

It's important to remember these are rare tumours, so even if your relative has a NET, your own risk is still very small.

Coping

Being diagnosed with cancer is hard to cope with. A lot of people with rare cancers also say they feel isolated. Your best source of information is your consultant and your clinical nurse specialist.

The NET Patient Foundation also gives information and support to people with neuroendocrine tumours, including carcinoid tumours.

Their website has a section focusing on patients' stories and they also have an online forum where people can share experiences. They run a helpline and can put patients in contact with each other.

Tel: 0800 434 6476

Last reviewed: 
20 Mar 2014
  • Guidelines for the management of gastroenteropancreatic neuroendocrine (including carcinoid) tumours
    JK. Ramage (and others)
    Gut. 2005 Jun;54 Suppl 4:iv1-16

  • An overview of the current diagnosis and recent developments in neuroendocrine tumours of the gastroenteropancreatic tract: the diagnostic approach
    P. Kuiper (and others)
    The Netherlands Journal of Medicine. 2011 Jan;69(1):14-20

  • Cancer Principles and practice of oncology (8th edition)
    VT. De Vita, TS. Lawrence, and SA. Rosenberg
    Lippincott, Wiliams and Wilkins, 2008

  • The pathologic classification of neuroendocrine tumors: a review of nomenclature, grading, and staging systems
    DS. Klimstra (and others)
    Pancreas. 2010 Aug;39(6):707-12

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