Neuroendocrine Tumors: You’ve Got Questions

Jan 12, 2023 | Amy Kuth, Patient Educator | @amykuth

If you have a new or ongoing neuroendocrine tumor (NET) diagnosis, then you’ve got questions. Neuroendocrine tumors (NETs) are cancers that begin in specialized cells called neuroendocrine cells. These tumors are rare and can occur anywhere in the body. NETs are notoriously difficult to diagnose, and treatment can be complex. Clinical trials at Mayo Clinic are studying new ways to diagnose and treat NETs. As advances in treatment and diagnostic tools continue to move forward, your questions are likely building. Consider these three strategies to get the answers you need.

Ask Your Doctor or NET Specialist

Your doctor should be the first source you go to for your questions. Unlike information you might learn from brochures and websites, your doctor can give you answers that are specific to your individual case. Depending on your situation, your doctor may refer you to a NET specialist. NET specialists are skilled in the diagnosis and treatment of NETs.

Are you curious if one type of scan is better than another for your specific diagnosis? Do you want to know if a new treatment option is right for you? Your NET specialist will have the most up-to-date knowledge to answer your questions. See a list of doctors who treat this condition at Mayo Clinic or find NET specialists and NET treatment centers near you.

Read Reliable Sources Online

In your quest for seeking knowledge, you are likely browsing the internet and using “Dr. Google” to learn more. Although the internet should not be a substitute for talking with your doctor, it can be a powerful tool when used in the right way. Ask your doctor what websites they recommend. For reliable and up-to-date information on NETs, here are a few websites to explore.

Mayoclinic.org
Neuroendocrine Tumor Research Foundation
Carcinoid Cancer Foundation (information on carcinoid, a type of NET, and other related NETs)
National Comprehensive Cancer Network (Guidelines for Patients: Neuroendocrine Tumors)
National Cancer Institute

Learn from Others Living with NETs

Sometimes it helps to hear from other people living with NETs. Are you wondering about others’ experience with a specific treatment? Do you have questions that only someone living with NETs can answer? Consider joining a support group, either one with live meetings or one that connects through online discussion. A support group of people with the same diagnosis can be a source of useful information, practical tips, and encouragement.

If joining a support group doesn’t feel right for you, you might benefit from reading personal stories about people with NETs. You can find hope, answers, and inspiration on the Mayo Clinic Comprehensive Cancer Center Blog. Check out their stories on neuroendocrine tumors (these stories might have valuable information you are looking for!).

Are you living with a neuroendocrine tumor? Share your experience and helpful resources in the comments!