It can be difficult to cope with a neuroendocrine tumour (NET) and its treatment. People often think they have an idea of what having cancer is like, but NETs are different from other cancers.
Treatment can last for months or even years, and you may have ongoing symptoms that are difficult to control, and that other people don’t understand.
There is information here about some of the organisations that can help you cope. And some books and videos that other people have found helpful.
Cancer Research UK information and support
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 us a question online.
Cancer Chat is our online forum where you can share experiences.
NET Patient Foundation
The NET Patient Foundation gives information and support to people with neuroendocrine tumours. Their website has:
- detailed information and advice
- booklets about surgery, diet and travel tips
There is also a section focusing on patients’ stories and an online forum where people can share experiences. They run a helpline and can put patients in contact with each other.
Telephone: 0800 434 647
Macmillan Cancer Support
Macmillan Cancer Support provides practical, medical and financial support, and campaigns for better cancer care. It provides booklets on cancer and treatments and runs a helpline providing cancer information and benefits advice.
Macmillan support line: 0808 808 0000 (7 days a week, 8am to 8pm; information available in other languages) or fill in the support line form.
Insulinoma Support Network
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.
The Carcinoid Cancer Foundation
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.
National Cancer Institute (NCI)
The National Cancer Institute (NCI) is the US organisation for cancer research. It has information about all types of cancer.
American Cancer Society (ACS)
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.
Books and leaflets
You can find a list of books about cancer, treatment, and living with cancer on our general reading list. These books and factsheets cover many aspects of cancer and its treatment.
Videos of people's stories
Hear what it's like to live with and beyond cancer, from people who have shared their personal stories on film.
Healthtalk has an online library of interviews with people who have lived for 5 years or more after a cancer diagnosis. See what they say about lifestyle choices, physical effects, work, family and more.
Find local cancer information and support
NHS Choices helps you to find local cancer information and support.