Useful information

The neuroendocrine system refers to cells that release hormones into the blood in response to a signal from the nervous system.

Neuroendocrine tumours (or NETs) occur when cells in the neuroendocrine system grow abnormally, and they can be malignant (cancer) or benign (not cancer).

NETs can occur anywhere in the body, but are commonly found in the gastrointestinal and respiratory tracts. In the past, these tumours were called ‘carcinoids’.

NETs are quite rare, with five out of every 100,000 people diagnosed with them every year, and a diagnosis of NETs can have a profound effect on the patient’s life. Between 60% and 80% of patients are not diagnosed until the tumours are at an advanced stage.

Being diagnosed with NETs can feel quite isolating, and a large percentage of people with a diagnosis of NETs reported they had not been offered information on support for people with neuroendocrine cancer. Here are some good places to start:

netpatientfoundation.org – The NET Patient Foundation has lots of resources for information and support

nhs.uk/conditions/neuroendocrine-tumours - The NHS web page on NETs has lots of information, plus links to other helpful websites

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