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
Patient Pack for Newly Diagnosed Patients
Have you recently been diagnosed with a NET? If so, our information packs for newly diagnosed patients are full of useful and straightforward information which can help you.
- A USB wristband which includes informative videos and a comprehensive guide to life with a Neuroendocrine Cancer
Details of how we can support you including:
- Our local NET Natter Support Groups
- Our Specialist NET Nurse Team
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
Gastric (Stomach) Factsheet
GCC (Goblet Call Carcinoma) Factsheet
Large Bowel Factsheet
Pancreas – Functioning Factsheet
Pancreas – Non Functioning Factsheet
Pheochromocytoma & Paraganglioma Factsheet
Small Bowel Factsheet
Unknown Primary Factsheet
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