This site has been initiated and developed by Ipsen Ltd.
This site has been initiated and developed by Ipsen Ltd.

Helen, Patient – 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 NETs specialist

As NETs are an infrequent type of cancer, some people find that their own doctors do not know much about the condition. After your diagnosis, ask your doctor to refer you to a specialist NETs consultant or cancer centre. You will probably need to travel a lot further for these specialist appointments. However, you should get the chance to receive more expert care.

Helen, Patient – Living with NETs

“Your usual doctor may not know much about NETs as they are so rare. 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 NETs 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.

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 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

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Find the support you need

Practical Tips and Tools

Read practical tips from others to help make your life with NETs easier

Go to tips and tools

NET patient support groups

NETs Patient Support Groups

Patient support groups for NETs can often provide social and emotional support

Find Patient Support Groups

Learn about NETs

Learn about carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs

Learn About NETs

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This site is intended for a UK audience only. SOM-UK-003737 September 2018