Questions to Ask About Retinoblastoma

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

If retinoblastoma has just been diagnosed

• How sure are you that my child has retinoblastoma?
• Is only one eye affected or are there tumors in both eyes?
• Do we know if this is the heritable (hereditary) form of retinoblastoma? How can we find out? If it is, what would this mean?
• Has the cancer spread outside the eye?
• What is the stage of the cancer, and what does that mean?
• Has my child’s vision been affected?
• Do we need any 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?
• Who else will be on the treatment team, and what do they do?

When deciding on a treatment plan

• What are our treatment options?
• Can my child’s sight be saved? If so, how much?
• What do you advise for treatment and why?
• Should we get a second opinion? How do we do that? Can you recommend a doctor or cancer center?
• Are there any clinical trials we should consider?
• How soon do we need to start treatment?
• 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?

During and after treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply, but getting answers to the ones that do may be helpful.

• How will we know if the treatment is working?
• Is there anything we can do to help manage side effects?
• What symptoms or side effects should we tell you about right away?
• How can we reach you or someone on your team on nights, weekends, or holidays?
• Who can we talk to if we have questions about costs, insurance coverage, or social support?
• What are the chances of the cancer coming back after treatment? What are our options if this happens?
• 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 nearby or online support groups, where you may be able to get in touch with other families who have been through similar situations.

Also keep in mind that doctors aren't 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 The Doctor-Patient Relationship.