This website is intended for an international audience, excluding the UK, United States, Canada and France
This website is intended for an international audience, excluding the UK, United States, Canada and France

Helen, Living with NETs

“When you consult the Internet do not believe everything you read. Make sure your sources are reliable and choose your search words carefully. If in doubt about any of the information that you come across always talk to a healthcare professional.”

View Helen’s story >

Find a NET specialist

As NETs require specialist treatment some people may find that their usual doctors do not know much about the condition. Ideally you should be referred to a specialist NET consultant or NET care team. You may need to travel further than normal for these specialist appointments, but you will receive more expert care. If this is not convenient, ask if any of your appointments could be done at home via the telephone or by using a video conferencing program, or if your treatment could be given at home or at a local medical centre.

Helen, Living with NETs

“Go to a centre of excellence if you can. It is also helpful to find a healthcare professional familiar with NETs that you can consult in between your visits to the specialist.”

View Helen’s story >

Do not be afraid to ask questions

Try taking a friend or relative with you to your medical appointments. Have a think before your appointment and draw up a list of questions to ask your doctor about your NET diagnosis, your prognosis, your treatment and practical advice about dealing with any emotional or physical problems.

Ask your specialist to clearly explain any medical test results of yours that they may be looking at during your visit. Why not take some notes about their answers to remind you about what they have said? Ask them to explain something several times if you don’t understand.

Depending on where you live, you may be allocated a specialist nurse or keyworker. Call or email them after an appointment to clarify what you have been told or if you have any questions. Sometimes, particularly at the beginning of your journey, there is a lot of information to take in. You may not think of questions to ask until you’ve had chance to go away and process what you have just discussed.

Remember, if you have any financial concerns, you can ask your doctor or specialist nurse if they can signpost you to relevant bodies that may be able to help.

Frequently asked questions

Visit the frequently asked questions (FAQs) by patients section on this website to see some basic answers to common questions that people have about NETs.

Always consult your doctor or specialist nurse about specific questions for your individual health. These answers are not intended to replace their medical advice.

Patient*, Living with NETs

“I just took charge to find out more information. I would be foolish to say I wasn’t scared. But I moved forward from the first moment.”

*Quote from patient who completed an anonymous survey conducted in five countries in 2015

Tips for learning more about NETs

  • Look out for annual patient conferences, meetings or events about NETs

Review the glossary on this website to understand the phrases and terms used in the medical care and treatment of NETs.


Living with NETs

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This website is intended for an international audience, excluding the UK, United States, Canada and France. This website has been developed by Ipsen in collaboration with those living with NETs and the healthcare professionals who care for them. Ipsen would like to thank everyone for their valuable insights and stories. All names used on this website are not necessarily real names. Visit for more information about us. Website design and development by Kanga Health Ltd. ALL-ALL-002300/November 2020