Neuroendocrine Cancer Information

Due to the COVID-19 outbreak our office is closed, with our team working remotely. Therefore, we are unable to dispatch ANY patient information during this time. All of our information is available to view below and we are available online, should you need us or have any questions.

We make sure our information is accurate and up-to-date by using the latest evidence from research and clinical guidelines. However, our information does not replace the advice of your healthcare team. All of our information is regularly updated. We try to make our information as clear as possible by writing in plain language and explaining medical words.

We use our medical advisory board to check our information for medical accuracy, and patients and supporters to check that our information makes sense and answers all their questions.

To order any of our patient information, please complete an order form by clicking one of the below. (UK only). 

Click here - Patients Click here - Healthcare Professionals

The NPF Handbook – Your Guide to Life with Neuroendocrine Cancer

This Handbook is your personal guide to living with Neuroendocrine Cancer. No doubt you would rather you weren’t reading this handbook– we would too, but as you are, we hope it will give you a lot of useful and straightforward information about a subject that it can be hard to find out about. 

This isn’t a book that it is intended to be read cover to cover. Instead, we hope that you will dip in and out when you want more information about tests, time in hospital, talking about cancer, living with a Neuroendocrine Cancer or whatever else is on your mind.

Read in English here Read in German here Read in French here


The New NCUK Lung Handbook

This Handbook is your personal guide to living with Neuroendocrine Cancer of the Lung(s). We hope it’ll give you some useful and straight forward information.
Whether you want to know every detail of what your diagnosis may mean for you, or would rather your care team just got on with it, there’s much to be said for being prepared and being informed.
Read in English here



These are individual factsheets for each Neuroendocrine Cancer type, focusing on diagnosis and follow up. For treatment information, please see the handbook.

ACC (Adrenocorticol Carcinoma) Factsheet
Appendix Factsheet
Breast Factsheet
Duodenum Factsheet
Gastric (Stomach) Factsheet
GCC (Goblet Call Carcinoma) Factsheet
Gynaecological Factsheet
Highgrade Factsheet
Large Bowel Factsheet
Liver Factsheet
Lung Factsheet
Pancreas – Functioning Factsheet
Pancreas – Non Functioning Factsheet
Pheochromocytoma & Paraganglioma Factsheet 
Prostate Factsheet
Rectum Factsheet
Small Bowel Factsheet
Testicles Factsheet
Thyroid Factsheet
Unknown Primary Factsheet 

Wallet Cards

We have produced handy cards to keep in your wallet in case of emergency. We have three wallet cards available:

  • A toilet card  – that you can use when you are out and about and in a difficult situation. 
  • A bowel obstruction card – some types of NET make you more prone to small bowel obstructions. Your medical team will advise you if you need one of these. 
  • Carcinoid crisis card – it is really important that you have one of these on you at all times if you are a patient with a serotonin producing tumour. Your medical team will advise you if you need one of these. 

Gut Surgery – How Diet can Help V2 (Previously titled Neuroendocrine Tumours – Diet & surgery to the Digestive System)

This guide has been developed to ensure NET patients have access to reliable dietary information before and after surgery to the digestive system.

After surgery you may experience a variety of side effects which can impact on your nutritional status.

Some symptoms can also be controlled with diet so it is important that you eat foods that are healthy and most suitable for you at that time. This will allow healing, prevent deficiencies and help you to maintain a healthy weight.

Ways of doing things will vary from hospital to hospital but we have included the general guidance based on years of experience in working with Neuroendocrine Cancer.

Read here


Merkel Cell Carcinoma

Our Merkel Cell Carcinoma guide has been written to give you accurate and up to date information. We hope it will give you a lot of useful and straightforward information. 

Read here


Click here for useful links and further reading

Join our NET Community

Sign-up for our email newsletter. Simply register with us to receive regular updates.

Register now