Central Nervous System Tumors (Brain and Spinal Cord) - 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 your child’s 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 child’s 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 has been diagnosed? What is the name of the tumor?

  • Where exactly is the tumor located?

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

  • Is the tumor cancerous? Is the tumor malignant or benign?

  • What is the tumor’s grade? What does this mean?

  • What is the tumor’s molecular subtype (if applicable)? What does this mean?

  • Are other tests needed to confirm this diagnosis?

  • What is your familiarity with my child’s tumor type and its treatment?

Questions to ask about choosing a treatment and managing side effects

  • What are the treatment options?

  • What types of research are being done for central nervous system (CNS) tumors 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 my child feel better, or both?

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

  • Who is part of the treatment team, and what does each team member do?

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

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

  • Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should we talk with a fertility specialist before treatment begins?

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

  • What is the chance that the tumor will recur?

  • 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 they 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 effects of having this surgery?

Questions to ask about having radiation therapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will my child need to have this treatment?

  • What side effects can I expect my child to experience 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 having chemotherapy or targeted therapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will my child need to have this treatment?

  • Will this treatment be given to my child at a hospital or clinic? Or will they take it at home?

  • What side effects can I expect my child to experience 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 I 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 personal records?

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

  • Who will be leading my child’s follow-up 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 your family. Use the menu to choose a different section to read in this guide.