Questions to ask your doctor

Learning as much as you can about your condition and next steps is important. You have the right to understand treatment options and the overall management strategy. Before your appointment(s), write down questions you want to ask. If you do not understand the answers or explanations, don’t be afraid to ask them to be repeated or rephrased. It may be a good idea to go to the appointment with a loved one or friend, so you can understand the explanations together. Plus, they may provide emotional support. The following are some of the questions you may want to ask:

General questions

• What type of NET do I have?

• Where is the tumor located? Has it spread to other parts of the body? Is it likely that it will spread?

• Is the NET likely to be caused by genetic factors? Are any other members of my family at risk of developing a NET?

• Are you a NET specialist? How many patients with NET do you treat a year?

• Which specialists will be involved in my case?

• Are you involved with or have access to a multidisciplinary NET team? Could you recommend a specialized center for NETs in this area?

Tests/staging

• Did an experienced NET pathologist review the histology of my tumor?

• What tests need to be performed?

• What is the grade and staging of the NET? What does this mean?

• Based on the tumor grade and staging, what is my prognosis?

Management/treatment

• Which treatments, or combination of treatments, do you recommend? Why?

• What is the expected timeline for my treatment plan?

• Do I need to start with treatment right away?

• Will the treatment help me live longer?

• What will be done during the treatment, and what are potential side effects?

• Is the treatment going to hurt? / Is the treatment painful?

• How often do I need this treatment? Will I be hospitalized, or can I take this treatment at home?

• Is there anything I should avoid before treatment?

• What should I avoid during treatment?

• What should I avoid after treatment?

• Will the treatment improve my quality of life?

• Will I be able to work, exercise, and do my usual activities?

• Does this treatment treat my symptoms of NET?

Clinical trials

• Are there any relevant, ongoing clinical trials for my type of NET?

• What are the benefits and risks of participating in the mentioned clinical trial?

• How will I be monitored while participating in the clinical trial?

• What are my responsibilities during the clinical trial?

Support

• What assistance is available to me? What assistance is available to my family?

• Do I have access to psychological support?

• Whom should I call with questions or concerns outside regular office hours?

• Do you know of any support groups or resources for patients with NET?