After a Neuroendocrine Tumors Diagnosis: Questions to Ask Your Doctor

A diagnosis of diagnosis of neuroendocrine tumors (NETS) can be overwhelming. This fact sheet will tell you:

• How to prepare for your appointments
• The value of a specialist in neuroendocrine tumors
• What questions will help you learn more about your diagnosis

The Importance of Communicating With Your Health Care Team

Your team of doctors, nurses and social workers are there to help. Here are some tips for your appointments.

• Bring a list of questions. This will help you remember important things to ask. Write down or record the responses so that you do not forget them.

• Consider bringing a loved one with you. A friend or a family member can help ask questions and provide emotional support.

• Ask questions about costs. Knowing how much your treatment and medications might cost can help you plan ahead and focus more attention on getting better.

If your doctors and nurses do not know every answer, they may be able to guide you to those who do.

Should You Find a Doctor That Specializes in NETS?

Patients with NETS should usually request second opinions from a specialist. Ask your primary care doctor or cancer doctor to recommend one, or contact a nearby cancer center.

• The American Society of Clinical Oncology’s website, Cancer.Net, offers a “Find an Oncologist” database that allows you to search by specialty and location.

• The National Cancer Institute (www.cancer.gov or 800-4-CANCER) publishes a list of NCI Designated Cancer Centers.

Questions That You May Want to Ask Your Health Care Team

The following questions should help you learn key information about your diagnosis and situation.

“What type of neuroendocrine tumors do I have?” NETS is a rare type of cancer that usually forms in the pancreas, lung, or stomach, although it can form in other areas of the body.

“What stage is my neuroendocrine tumors?” A cancer’s stage means its size and how much it has spread in the body. The higher the number (I, II, III or IV), the more it has spread.

“What are my treatment options?” There are many kinds of treatments for neuroendocrine tumors. These can include surgery, targeted treatment and chemotherapy.

“Is there a clinical trial available to me?” Clinical trials test new approaches based on known and effective treatments for cancer. Doctors often urge people to take part in clinical trials if they are available.

“Is surgery an option for me?” If surgery is an option, your health care team can help you get ready. They should be able to explain what the surgery does, what recovery is like and what the effects may be.

“How can I cope with my emotions?” In addition to loved ones, you can find help in places of worship, support groups and counseling. Activities such as meditation and relaxation exercises can also help.