Neuroendocrine tumours (NETs)

What are neuroendocrine tumours?

NETs are rare slow-growing cancers that affect your neuroendocrine cells. The neuroendocrine cells are part of the network of glands in your body called the endocrine system.

Neuroendocrine cells are special nerve cells that make hormones in your body. Hormones help to control many of the functions in your body. Examples of hormones are serotonin and adrenaline. Some NETs make extra hormones. These are called functioning NETs. These extra hormones in the body can cause symptoms. Read more about NET symptoms.

The term NETs can be used to refer to different types of tumours. For example, carcinoid tumour, gastroinstestinal NETs, pancreatic NETs, and lung NETs. Read more about the types of NETs.

Most neuroendrocine tumours are found in your digestive system. This includes your oesophagus, stomach, bowel, back passage (rectum) and appendix. NETs in other parts of your body are much rarer. These areas include your lungs, pancreas, kidneys, ovaries and testicles.

Picture courtesy of CRUK (Wikimedia commons)

NETS support in Ireland.

The Centre of Excellence for NETs operates on a multi-centre platform between St Vincent’s University Hospital in Dublin, Mercy University Hospital Cork in the south and Galway University Hospital in the west.

There is a strong relationship between Ireland and Uppsala University Hospital in Sweden.  Uppsala is world renowned as one of the leading and most experienced centres of excellence with a long established history of dealing with NETs and leading research into improved therapies and treatments.

Access to treatments in Uppsala, or other specialist treatments available in another EU/EEA country that are not available in Ireland, are handled through the E112 Treatment Abroad Scheme with the costs covered by the HSE.  This is applied under EU regulations, in which you are entitled to medical benefits on the same basis as nationals in these countries, if your treatment there is authorised by the HSE.

Connect with others

Because NETs is not a common condition, it is even more important for you to get as much support as possible. There are other people like you and many groups that want to help you.

Ireland

NET patient network is a patient support and advocacy group for NET patient in Ireland. They organises patient support meetings and distributes information specific to Ireland.

They also organise an annual NET patient day in the month of November http://netpatientnetwork.ie/

UK

NET Patient Foundation

https://www.netpatientfoundation.org/

International

The Neuroendocrine Tumor Research Foundation (NETRF) offers information and education to those with neuroendocrine tumors. NETRF is the leading private funder of research into causes and treatments of neuroendocrine tumors (NETs) in the search for a cure.

https://netrf.org/