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Talking With Your Doctor TOPICS

What should you ask your child’s doctor about retinoblastoma?

It’s important to have honest, open discussions with your child’s doctors. You should ask any question on your mind, no matter how small it might seem. Here are some questions you might want to ask.

  • What kind of eye cancer does my child have? Is it retinoblastoma?
  • Is only one eye affected or are there tumors in both eyes?
  • Has the tumor spread beyond the eye?
  • What is the stage of the cancer, and what does that mean?
  • Has my child’s vision been affected?
  • Do we need other tests before we can decide on treatment?
  • How much experience do you have treating this type of cancer?
  • Do we need to see any other types of doctors?
  • What are our treatment options?
  • Can my child’s sight be saved? If so, how much?
  • What do you advise and why?
  • Are there any clinical trials we should consider?
  • How long will treatment last? What will it be like? Where will it be done?
  • What should we do to be ready for treatment?
  • What are the risks and side effects of the suggested treatments?
  • Which side effects start shortly after treatment and which ones might develop later on?
  • Will treatment affect the growth of the area around my child’s eye?
  • Will treatment affect my child’s ability to grow and develop?
  • Could treatment affect my child’s ability to have children later on?
  • What is the chance of curing the cancer?
  • What would we do if the treatment doesn’t work or if the cancer comes back?
  • Is there any risk of this type of tumor occurring in our other children or relatives?
  • Should we consider genetic counseling and testing?
  • What type of follow-up will my child need after treatment?
  • Does my child have a higher long-term risk of other cancers?

Along with these sample questions, be sure to write down some of your own. For instance, you might want more information about recovery times so you can plan your schedules. You may also want to ask about getting a second opinion or if you can be put in touch with other families who have been through similar situations.

Also keep in mind that doctors are not the only ones who can give you information. Other health care professionals, such as nurses and social workers, may be able to answer some of your questions. You can find out more about speaking with your health care team in Talking With Your Doctor.

Last Medical Review: 03/12/2015
Last Revised: 03/12/2015