FAQs

Is there a support group near me? 

There are dedicated NET support groups all over the UK. Find your nearest one using our map and calendar.

There are NET Cancer Support Groups for patients and their caregivers all over the world. INCA has a register of some of the world NET support groups for support outside the UK.


Can I get in touch with other NET patients online? 

The NET Patient Foundation has 3 online communities* for patients and others affected by NETs to support and connect with each other. You can join our Online Community here, or alternatively search for these groups on Facebook and follow the joining instructions: 

NET Natter UK online – UK only

Friends of the NPF – International

Next2NETs – For family and friends of NET patients

Other groups connecting those affected by NET’s:

Ann Edgar Charitable Trust – Dedicated local support in Scotland

AMEND – Supports all those affected by multiple endocrine neoplasia (MEN) disorders and associated endocrine growths.

ACC Support UK – Adrenocortical cancer support and information.

Von Hippel Lindau – International alliance and online community for people affected by VHL.

Insulinoma UK – A website for patients with insulinomas.

Cure Goblet Cell Carcinoid Cancer* – CGCCC’s mission is to raise awareness of Goblet Cell Carcinoid, and to raise funds towards research projects.

Lovable Lungnoids* – A facebook group for people affected by bronchial NETs.

NET Whippersnappers* – A closed facebook group for young people affected by NETs.

INCA – The global voice in support of neuroendocrine cancer patients, has a register of some of the world NET support groups for support outside the UK.

*You must have a Facebook account to join these groups.


Where can I get travel insurance if I have a NET?

This is often asked on the online support groups, we suggest joining and searching for previous posts on travel insurance. For the most up to date answers from other patients you can post your own question. 

You can join our Online Community here, or alternatively search for these groups on Facebook and follow the joining instructions: 

NET Natter UK online – UK only

Friends of the NPF – International

Next to NETS – For family and friends of NET patients

More information on travelling with NETs can be found here: 

Practical issues

Cancer Research UK – Getting Travel Insurance


I’ve been diagnosed with a NET, can I get any financial help?

Find more information on benefits and financial help here: 

Practical issues 

carers UK 

Maggies

Macmillan and the Citizens Advice Bureau also provide advice.


I’ve been told I might have a NET, what do I need to know?  

If you have been having investigations into a possible NET, or someone close to you has, you will probably have all sorts of questions. These resources describe what NETs are and the different types of NET.

A few basics 

Understanding NETs

Your guide to neuroendocrine tumours – In this short video Professor Caplin describes what NETs are and how they are diagnosed.

Your guide to scans – video

Factsheets  – the diagnostic tests required for the different types of NET


Is there any advice on diet and nutrition for NET patients? 

There isn’t a NET diet, however NET patients nutritional health can suffer for reasons including diarrhoea, nausea, weight loss and surgery to the gut. Thankfully changes to diet can often prevent deficiencies, help carcinoid symptoms and healing after surgery and maintain a healthy weight. More information can be found here:

Diet and Nutrition 

Diet and Surgery to the Digestive System 


Where can I find more information about NETs?

The NET handbook 

Factsheets

NET TV

NET TV FAQ’s

Useful links and further reading


Can I ask for a second opinion?

It’s a good idea to weigh up the advantages and disadvantages of getting a second opinion before asking for one. Let’s look at the advantages first:

  • If the second opinion matches the first you will feel more confident about the diagnosis and treatment.
  • You might find that the second doctor is easier to talk to and that also improves confidence.
  • You might be offered a newer treatment that the first doctor isn’t aware of or a wider selection of treatment options.

And then there are the potential disadvantages:

  • Waiting to get a second opinion may delay your treatment. In some cases this can be crucial.
  • You might be disappointed and disheartened if the second doctor gives you the same diagnosis as the first.
  • If you are offered alternative courses of treatment, it may be difficult and stressful making a choice.
  • The doctor asked to give a second opinion may not be based at a hospital near you, and if you choose their prescribed treatment you may have to travel to receive it.

How to get a second opinion

Getting a second opinion is relatively simple. To start with, if you are registered at a practice with several GPs, you can ask for an appointment with one of the other doctors. If this is not possible, the NHS suggests you consider re-registering at another practice.

Getting a second opinion from a specialist consultant is somewhat similar. The NHS suggests you talk to your consultant or the head of the hospital unit about your concerns.

However, the way the NHS is structured means that you will probably have to go back to your GP and ask them to refer you to another consultant. If your GP agrees to refer you, they will inform the new consultant that you’re seeking a second opinion. Unfortunately your GP is not legally obliged to refer you, so if you have any difficulties obtaining a referral finding a new GP is probably the best way forward.

Finally, family members, or a carer, can also request a second opinion on a patient’s behalf providing the patient has given their consent. They will need to be armed with all the relevant information, but this is a beneficial solution in cases where the person is unable for whatever reason to fully comprehend the diagnosis and give consent to the treatment

For more information please see the section of the handbook under the heading “Getting the right care” it can be found here A few basics. You can find more information on the NET clinic nearest to you here UK NET centres or here European NET centres of Excellence


What is the recommended follow up and after care for my type of NET? 

How often you see your doctor or have routine scans and investigations after a NET diagnosis can vary. The NET Patient Foundation has put the basic information from the guidelines doctors follow in the UK into a short factsheet.

Please follow the link and look up the factsheet based on your NET primary site. Factsheets