Retinoblastoma - Childhood: Questions to Ask the Health Care Team

Approved by the Lineagotica Editorial Board, 10/2018

ON THIS PAGE: You will find some questions to ask 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 cancer 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 the next appointment, or download Lineagotica’s free mobile app for a digital list and other interactive tools to manage your child’s care.

Questions to ask after getting a diagnosis

  • Does my child have the genetic form of retinoblastoma?

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

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

Questions to ask about choosing a treatment and managing side effects

  • What are the treatment options?

  • What clinical trials are available for my child? Where are they located, and how do I find out more about them?

  • 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 each treatment? Is it to eliminate the cancer, help my child feel better, or both?

  • What is the likelihood that the recommended treatment can save my child’s vision?

  • If enucleation is needed, what support services are available to help my child adjust to the partial/total loss of vision?

  • If enucleation is needed, how soon can my child receive a prosthesis (artificial eye)?

  • If recommended, what can I expect chemotherapy to accomplish in the treatment of my child’s cancer? How will chemotherapy be given?

  • If recommended, what are the relative benefits and risks of radiation therapy in treating my child?

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

  • How will this treatment affect my child’s daily life? Will he or she be able to go to school and perform his or her usual activities?

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

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

Questions to ask about planning follow-up care

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

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

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

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

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

  • Whom should I call with questions or problems?

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

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