Living with neuroendocrine cancer
Cancer Research UK is the largest cancer research organisation in the world outside the USA. We fund research on all aspects of cancer from its causes to prevention and treatment.
We are committed to producing high quality information for people affected by cancer. As well as looking at the information on this website you can call our nurse freephone helpline on 0808 800 4040. They are available from Monday to Friday, 9am to 5pm. Or you can send them a question online.
Contact our cancer information nurses
Cancer Chat is our online forum where you can share experiences.
Neuroendocrine Cancer UK is a UK wide charity providing support and information to those affected by neuroendocrine cancer. They also have a helpline.
Find out more on their website
Macmillan Cancer Support is a charity that gives practical and medical support to people with cancer in the UK. Its helpline offers support with clinical, emotional, general and welfare benefits needs. They also publish booklets about cancer and treatments. Information is available in other languages.
Freephone: 0808 808 00 00 (7 days a week, 8am to 8pm) Contact email form
Visit the Macmillan Cancer Support website
The Insulinoma Support Network is a UK organisation that raises awareness and provides information about a type of neuroendocrine tumour of the pancreas called insulinoma.
There is a private online group where you can meet other people with insulinoma. And an online form if you want to get in touch.
Find out about the Insulinoma Support Network
The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is a patient group which provides information and support about multiple endocrine neoplasia (MEN) and endocrine tumours. They can provide support to patients with cancers who have the gene fault associated with MEN.
The International Neuroendocrine Cancer Alliance (INCA) is a worldwide organisation for people with neuroendocrine cancer. INCA works with health care professionals from around the world to ensure people with neuroendocrine cancer get the information, treatment, care and research opportunities they need.
The website provides information about neuroendocrine cancer and patient stories. It has many other resources and links.
The Carcinoid Cancer Foundation is an American organisation that encourages and supports education and research on carcinoid and related neuroendocrine cancers.
Its website has information about diagnosis and treatment, videos and online support groups.
Visit The Carcinoid Cancer Foundation website
The National Cancer Institute (NCI) is the US organisation for cancer research. It has information about all types of cancer.
The ACS provides information and support for people affected by cancer. As it is an American website, not all the information is relevant for a UK audience.
You can find a list of other organisations and resources about cancer, treatment, and living with cancer on our general organisations list. These resources cover many aspects of cancer and its treatment.
Provides free, reliable information about health issues including mental health, by sharing people's real-life experiences.
Visit the Healthtalk.org website
For general health advice and information.
Last reviewed: 05 Mar 2025
Next review due: 05 Mar 2028
Neuroendocrine cancers are also called neuroendocrine neoplasms (NENs). There are 2 key groups - neuroendocrine tumours (NETs) and neuroendocrine carcinomas (NECs).
There are many different types of neuroendocrine cancer. They are usually named after the part of the body where they develop.
Carcinoid syndrome is a group of symptoms including flushing of the skin and diarrhoea. It is caused by some NETs that produce large of amounts of hormones.
Coping with a neuroendocrine cancer can be difficult. You might have many different emotions. There is support available.
Neuroendocrine cancers can cause diet problems such as diarrhoea and weight loss. Your health care team can give you medicines and tips to help you cope with these problems.
Neuroendocrine cancers develop in cells of the neuroendocrine system. They can develop in different parts of the body including the lungs, stomach, pancreas and bowel.
About Cancer generously supported by Dangoor Education since 2010. Learn more about Dangoor Education
Search our clinical trials database for all cancer trials and studies recruiting in the UK.
Connect with other people affected by cancer and share your experiences.
Questions about cancer? Call freephone 0808 800 40 40 from 9 to 5 - Monday to Friday. Alternatively, you can email us.
