Neuroendocrine Tumours (NETs) arise from neuroendocrine cells that are found all over the body. NETs occur when neuroendocrine cells stop working normally and start to grow and/or behave abnormally. They can affect people of any age and can grow in many places throughout the body.
To understand NETs and where they can grow it is important to understand the neuroendocrine system. This system is our communication system in the body coordinating neuroendocrine cells to release hormones and other chemicals that we need for our bodies to work normally. When tumours arise within this system some of the symptoms you may experience pre or post diagnosis can be related to the malfunction of the communication system e.g. the neuroendocrine cells release hormones and chemicals when they shouldn’t do.
Due to complexity of this form of cancer it is really important that you are cared for by a clinical team with expertise in this cancer type.
NETs can affect your body, your mind and your life in all kinds of ways and we want to empower you and your loved ones to understand this form of cancer so that you are fully prepared and able to ask questions and feel in control of your care.
There are a number of different names that are used to describe a NET. NET is an umbrella term for benign and malignant tumours. This website only has information on the malignant NETs (the cancerous type). We also provide information on Neuroendocrine Carcinomas (NECs).
Just to make things even more confusing, there is updated terminology based on the differentiation and grade of a tumour – the new name is Neuroendocrine Neoplasms. This is an umbrella term to describe both NETs and NECs as explained above.
Don’t worry too much about the terminology, we explain all of this in our patient information, however, we do refer to Neuroendocrine Cancer throughout this website as we only provide information on the cancerous NETs.