Pheochromocytoma and Paraganglioma: Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with your health care team is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

  • Where in my body is the tumor located?

  • Are there other tumors elsewhere?

  • Is there a genetic cause for my tumor(s)? When will I be tested?

  • Is the tumor producing catecholamines?

  • What is the stage of the tumor? What does this mean?

  • Should I talk with a genetic counselor before I start treatment?

  • How much experience do you have treating this type of tumor?

  • Where can I get more information about my diagnosis and treatment?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What types of research are being done for pheochromocytoma and paraganglioma in clinical trials? Do clinical trials offer additional treatment options for me?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the tumor, help me feel better, or both?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • What medications will reduce these side effects?

  • Could any of these side effects be permanent?

  • Who will be part of my health care team, and what does each member do?

  • Who will lead my overall treatment?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • Could this treatment affect my sex life? If so, how and for how long?

  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?

  • If I am worried about managing the costs of medical care, who can help me?

  • What support services are available to me? To my family?

  • If I have questions or problems, who should I call?

Questions to ask about having surgery

  • Can surgery remove the entire tumor? Why or why not?

  • If not, can surgery be done to debulk the tumor? What is the benefit of this?

  • What type of surgery do you recommend?

  • How long will the operation take?

  • How experienced is the surgeon and anesthesiologist with this type of surgery?

  • What medications will I be given before, during, and after surgery?

  • How long will I need to be in the hospital?

  • Can you describe what my recovery from surgery will be like?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term effects of having this surgery?

Questions to ask about having radiation therapy

  • What medications will I be given before, during, and after radiation therapy?

  • What type of radiation therapy do you recommend?

  • What is the goal of radiation therapy?

  • How many treatments will I need, and how long will each one take?

  • What side effects can I expect during treatment?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term or late effects of having radiation therapy?

  • What can be done to prevent or manage these side effects?

Questions to ask about having therapies using medications

  • What medications will I be given before, during, and after treatment?

  • Which drug(s) do you recommend?

  • What is the goal of this treatment?

  • How will the treatment be given? Through an IV, orally, or injected?

  • How often will I receive this treatment? For how long?

  • Will I receive this treatment at a hospital or clinic? Or will I take it at home?

  • What side effects can I expect during treatment?

  • Who should I contact about any side effects I experience? And how soon?

  • What are the possible long-term or late effects of this treatment?

  • What can be done to prevent or manage these side effects?

Questions to ask about other treatments

  • What other type(s) of treatment do you recommend?

  • What is the goal of this treatment?

  • What medications will I be given before, during, and after treatment?

  • How long will it take to give this treatment?

  • What side effects can I expect during treatment?

  • What are the possible long-term or late effects of having this treatment?

  • What can be done to prevent or manage the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the tumor will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the treatment(s) I received?

  • What follow-up tests will I need, and how often will those tests be needed?

  • Will I need to have hormone replacement therapy if I was treated for pheochromocytoma? For how long?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • When should I return to my primary care doctor for regular medical care?

  • Who will lead my follow-up care?

  • What survivorship support services are available to me? To my family?

The next section in this guide is Additional Resources. It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.