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

When talking about cancer and cancer treatment you need to have frank, open discussions with your child’s doctors and feel free to 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?
• Has the tumor spread beyond the eye?
• What is the stage of the cancer, and what does that mean?
• Are there other tests that need to be done before we can decide on treatment?
• How much experience do you have treating this type of cancer?
• What other doctors will we need to see?
• What treatment options do we have?
• 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 involve? Where will it be done?
• What should we do to be ready for treatment?
• What are the risks or side effects to the treatments you suggest?
• How might treatment affect the growth of the area around my child’s eye?
• Based on what you’ve learned about the cancer, what is the chance my child will be cured?
• What would we do if the treatment doesn’t work or if the cancer recurs?
• Is there any risk of this type of tumor occurring in our other children or relatives?
• Should we consider genetic testing? If the results are positive, what should be done?
• 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.