Desmoplastic Infantile Ganglioglioma, Childhood Tumor: 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 the 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 is the grade of the tumor? What does this mean?

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

  • Has the tumor spread?

Questions to ask about choosing a treatment and managing side effects

  • How familiar are you with my child's tumor type and its treatment?

  • What treatment options are available?

  • What types of research are being done for desmoplastic infantile ganglioglioma (DIG) in clinical trials? Do clinical trials offer additional treatment options for my child?

  • 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 is the chance for success with each treatment option?

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

  • How will this treatment affect my child’s daily life? Will they be able to go to 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 I talk with a fertility specialist before treatment begins?

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

  • 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? A limited biopsy, tumor debulking, or is the goal a complete resection?

  • 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 effects of having this surgery?

  • If magnetic resonance imaging (MRI) was performed after surgery, did it determine if surgery was able to remove all of the tumor?

  • Will my child need additional treatment after surgery? If so, what type of treatment and when?

  • If not, what is the follow-up care plan?

Questions to ask about having chemotherapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

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

  • What side effects can I expect my child to have 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 my child 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?

  • 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 you. Use the menu to choose a different section to read in this guide.