Gathering information about NETs

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.

• Find specialist NET consultants or cancer centres in your country by contacting patient support groups, or by searching online databases of medical experts
• Register to receive regular newsletters or email updates from these groups
• Find out about the latest clinical research into new treatments for 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