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
Information about the emotional, physical and social challenges of living with NETs.
Helen
If you’re living with neuroendocrine tumours (NETs) and you’re looking for clinics in your region and patient support services, then you’ve come to the right place. Search through the Get Support resources listed here to see if any of these can help you.
Once you are diagnosed with neuroendocrine tumours (NETs) or neuroendocrine neoplasms (NENs) there is a lot of information to take in.
Remember that every NET case is unique, so not all the information you may hear about cancer or NETs will be relevant for you. Use the Internet carefully; it can be a useful source of information, but not all of it is regulated or reliable.
“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.”
“It depends on the kind of person you are but there is a lot of networking between patients.”
The healthcare professional shown in this video speaks about their own opinions and experiences and not about any specific patient. Some treatment options may not be authorized or available in your country. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of NET. No information within this video constitutes medical advice.
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.
“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.”
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.
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.
“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
Review the glossary on this website to understand the phrases and terms used in the medical care and treatment of NETs.
Living with NETs
This section of the website gives you information about the emotional, physical and social challenges of living with neuroendocrine tumours.
Remember to speak to your doctor about your condition and ways of coping; this section should not replace their professional advice.
Read practical tips from others to help make your life with NETs easier.
Patient support groups for NETs can often provide social and emotional support.
Learn about the different types of NETs, symptoms of NETs, their diagnosis and treatment.
Living with NETs - your resource for neuroendocrine tumours information and support 
