Craniopharyngioma - Childhood: Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 09/2023

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

Talking often with the health care team is important to make informed decisions about your child’s 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 child’s 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

  • What type of tumor does my child have? Can you describe what this means?

  • Are other tests or surgery needed to confirm this diagnosis?

  • Can you explain my child’s pathology report (laboratory test results) to me?

  • What is your familiarity with craniopharyngioma and its treatment?

  • How many children with central nervous system (CNS) tumors do you treat each year?

  • Do you attend meetings to discuss complicated tumor cases and possible new treatments for these tumors? What types of specialists attend such meetings?

  • Will an experienced neuropathologist review my child’s pathology slides?

Questions to ask about choosing a treatment and managing side effects

  • What are the treatment options?

  • What types of research are being done for craniopharyngioma in clinical trials? Do clinical trials offer additional treatment options for my child?

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

  • Who will be leading my child’s overall treatment?

  • What treatment plan do you recommend? Why?

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

  • Should I get a second opinion on this treatment plan?

  • Are there pediatric treatment centers that you recommend?

  • What are the chances for success with the planned treatment?

  • Does your practice include multidisciplinary care? Can you explain how?

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

  • Could the treatment affect my child’s vision? If so, how?

  • How will this treatment affect my child’s daily life? Will they be able to go to school and perform their usual activities?

  • Is my child at risk for being overweight due to the tumor or its treatment? If so, how can we reduce this risk? Can you refer us to a registered dietitian?

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

  • Could this treatment affect my child’s fertility (ability to have a child in the future)?

  • Do you work with a social worker that helps children with CNS tumors and their families?

  • Do you know of a local support group for families with a child diagnosed with a CNS tumor?

  • Do you have reading material that would help me understand this disease?

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

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

Questions to ask about having surgery

  • What type of surgery will my child have?

  • How long will the operation take?

  • How long will my child be in the hospital?

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

  • Who should I contact about any side effects my child experiences? And how soon?

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

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

Questions to ask about having radiation therapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • What side effects can I expect during treatment?

  • Who should I contact about any side effects my child experiences? And how soon?

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

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

Questions to ask about planning follow-up care

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

  • What long-term side effects or late effects are possible based on the treatment my child received?

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

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

  • Who will be leading my child’s follow-up care?

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

  • What survivorship support services are available to my child? 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.