Information for the Newly Diagnosed
A Checklist to Help You Get Started
For those newly diagnosed with a neuroendocrine tumor or a carcinoid tumor
If you are newly diagnosed with a carcinoid tumor, another kind of neuroendocrine tumor (NET), or with carcinoid syndrome, you've come to the right place.
It is normal to feel confused, overwhelmed, afraid, and even angry. You are not alone. Many people who have been diagnosed with a carcinoid tumor or NET feel the same way at first. But with the right resources and support, you can understand your disease and learn how to live with it.
The following checklist for newly diagnosed patients is designed to give you information and guidance to help start your journey with NET. Be sure to check the website content under your specific kind of NET and/or carcinoid syndrome for more information.
Understand your disease. Learning about your NET and understanding the changes your body is going through is a great start to living day to day with cancer.
Ask which tests are right for you. Learn about the different tests your doctor may order to diagnose and monitor your NET.
Talk to your nurse or nutritionist. In addition to your doctors, your nurse may also have helpful advice about your NET and how to continue your daily activities. Your nutritionist may have suggestions for changes in your diet.
Ask questions. Ask your doctors a lot of questions and write down the answers so you can read them later. Asking questions can help keep you informed about your disease and more involved with your care.
Work with your health care team
See a team of medical experts. Seeing a multidisciplinary team can help ensure you receive the best possible care. Talk to your doctor about the different specialists you should see. Since NET are a rare disease, you may also want to see a NET expert. This is a doctor who has experience treating people affected by NET. A NET expert may have important insights about your care. Click here to find a NET expert in your area.
Share details about your symptoms and your lifestyle. Remember, your doctors only know information that you share with them. That's why it's important to tell your health care team everything about your disease and lifestyle. Be sure to share changes in your lifestyle or new symptoms, even those that seem unrelated to your NET.
Talk to your family and friends. Be sure to talk to your family and friends about what you're going through. Don't be afraid to ask them for help.
Bring a family member or a friend to your doctor visits. Seeing the doctor can be overwhelming. A friend or family member can help you remember to ask certain questions and take notes, or be there for support.
Join a support or advocacy group. Start building your support network by joining a support or advocacy group. Other people affected by neuroendocrine cancer can offer you information and support.