Gathering information about NETs

Find a NETs specialist

As NETs are an uncommon 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 center.

Do not be afraid to ask questions

Try taking a friend or relative with you to your medical appointments. 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. If you don’t understand something, ask them to explain it again. It can also be helpful to take notes.

• Find specialist NET consultants or cancer centers in patient support groups, or by searching online databases of medical experts
• Register to receive regular newsletters or email updates from these groups

• 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