Questions to Ask the Doctor

Regular communication with your child’s doctor is important in making informed decisions about his or her health care. Consider asking the following questions of your child’s doctor:

• Does my child have the genetic form of retinoblastoma?
  
  
• What is the stage of the disease? What does this mean?
  
  
• What are the treatment options?
  
  
• What clinical trials are open to my child?
  
  
• Who will be part of my child’s health care team, and what does each member do?
  
  
• Who will be coordinating my child’s overall treatment and follow-up care?
  
  
• What treatment do you recommend? Why?
  
  
• 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?
  
  
• 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?
  
  
• If I’m worried about managing the costs related to my child’s cancer care, who can help me with these concerns?
  
  
• What follow-up tests will my child need, and how often are they needed?
  
  
• What support services are available to my child? To my family?