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.
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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.
Living with neuroendocrine tumours (NETs) or neuroendocrine neoplasms (NENs) may involve regular imaging scans to monitor your condition or to check your treatment is working.
Below are some tips on how you can prepare for these scans.
Remember to refer to your doctor or specialist nurse if you have any questions about what may happen during the scan and continue any medications as normal unless they tell you otherwise.
You may be able to wear your own clothes rather than a hospital gown during the scan. So wear loose, preferably cotton, clothes that you feel comfortable in and are easy to take off and put back on if needed.
Remember that this includes your underwear. Make sure that your clothes do not have any metal zips, buttons, buckles, or hooks, however, as all metal objects (including jewellery, belts, eyeglasses and even dentures!) need to be removed during the scan.
You will need to remove all jewellery and leave any other items in another room when having the scan so take only the essentials with you. Or, if you have a friend or family member with you, ask them to take care of them for you.
You may be allowed to take a small pad or pillow into the scanner with you to help you lie still more comfortably during the scan. Check with your healthcare team in advance to see if these are already provided.
Unless you have been told otherwise by your doctor or specialist nurse, keep taking any regular medications exactly as they have been prescribed.
Depending on the type of scan you are having you might be asked to refrain from eating, drinking, or both, for a few hours before the scan is scheduled. Check with the imaging department or a member of your NET team if you are not sure.
Take something to eat or drink for after the scan if you think you’ll be particularly hungry or thirsty as you’ll be able to eat and drink as normal straight afterward.
Let the healthcare team know in advance if you will need an interpreter to help understand what is happening during your appointment.
Also, if you are particularly worried or are having a magnetic resonance imaging (MRI) scan and have a fear of small spaces (a condition known as claustrophobia) tell your healthcare team. You may be prescribed an oral medication to help you relax.
It may not be possible but if you are able to it might make you feel more comfortable if you ask to see the same radiologist or radiographer to perform your scan. You might also want to book the same taxi driver or ask the same family member or friend to accompany you to your appointments.
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.
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.
View a list of specialist NET clinics and hospital units in Europe.
Living with NETs - your resource for neuroendocrine tumours information and support 
