Neuroendocrine Tumours (NETs)

A Neuroendocrine Tumour is thankfully quite rare but for the five in every 100,000 who is diagnosed, it has a profound effect on their life.

Between 60-80% of patients don’t find out they have a NET until it’s at an advanced stage. This is why we help to fund vital, life-saving research at the Birmingham NET Centre, which is an accredited Centre of Excellence in Europe, treating more than 1,000 patients with complex cases.

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What are NETS?

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

Neuroendocrine Tumours (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’.

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:

The Neuroendocrine Cancer Website has lots of resources for information and support.

The NHS Website Page on NETs has lots of information and links to other helpful websites.

The Giles’ Trust Brain Tumour Fund

16,000 people are diagnosed with a brain tumour every year in the UK. Only around one in 10 of those patients survive beyond five years.

The Giles’ Trust Brain Tumour Fund was set up after the wife of England Cricketer, Ashley Giles suffered a brain tumour. Stine Giles was treated on a new TomoTherapy machine funded by Queen Elizabeth Hospital Birmingham Charity just weeks before she was diagnosed.