“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”
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.
“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.”
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.
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.
“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
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 carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs