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Treating Retinoblastoma TOPICS

How is retinoblastoma treated?

This information represents the views of the doctors and nurses serving on the American Cancer Society’s Cancer Information Database Editorial Board. These views are based on their interpretation of studies published in medical journals, as well as their own professional experience.
The treatment information in this document is not official policy of the Society and is not intended as medical advice to replace the expertise and judgment of your cancer care team. It is intended to help you and your family make informed decisions, together with your doctor.
Your doctor may have reasons for suggesting a treatment plan different from these general treatment options. Don’t hesitate to ask him or her questions about your treatment options.

General treatment information

Retinoblastoma is rare, so few doctors other than those in specialty eye hospitals and major children’s cancer centers have much experience in treating it. Children with retinoblastoma and their families have special needs that can best be met by these children’s cancer centers. These centers have teams of specialists who know about retinoblastoma and the unique needs of children with cancer. This gives the child the best chance for recovery and, if possible, keeping their sight.

Ask your child’s doctor about finding a children’s cancer center near you that has expertise in treating babies and children with this rare form of cancer. Ask about the services offered at your treatment center. Your child’s doctor or nurse can tell you what is available to help with any problems you or your child might have.

Children with retinoblastoma are treated by a team of doctors that often includes:

  • A pediatric ophthalmologist: a doctor who specializes in treating eye diseases in children
  • An ocular oncologist: a doctor (usually an ophthalmologist) who specializes in treating cancers of the eye
  • A pediatric oncologist: a doctor who treats children with cancer
  • A radiation oncologist: a doctor who treats cancer with radiation therapy

The team might also include other doctors, nurse practitioners, nurses, therapists, child psychologists, social workers, genetic counselors, and other professionals who have essential roles in helping children and their families with recovery after treatment is finished. For more information, see our document Children Diagnosed With Cancer: Understanding the Health Care System.

There is a lot for you to think about when choosing the best way to treat your child’s retinoblastoma. Often you may have more than one treatment to choose from. It is important to discuss all of the options as well as their possible side effects with your child’s doctors to help you make an informed decision. For a list of some questions to ask, see the section, “What should you ask your child’s doctor about retinoblastoma?” Then add your own.

If time permits, it can often be helpful to get a second opinion if you have questions about the recommended plan (or if you just want to confirm this is the best option). This can give you more information and help you feel more confident about the treatment plan that you choose. Check with your insurance provider about their policy on second opinions.

Treatment principles

The goals of treatment for retinoblastoma are:

  • To get rid of the cancer and save the child’s life
  • To save the eye if possible
  • To preserve as much vision as possible
  • To limit the risk of second cancers, which may also be caused by treatment, particularly in children with hereditary retinoblastoma

The most important factors that help determine treatment are:

  • Whether the tumor is just in one eye or both
  • How good the vision in the eye is
  • Whether the tumor has extended beyond the eyeball

Overall, more than 9 in 10 children can be cured of retinoblastoma. The chances of long-term survival are much better if the tumor has not spread beyond the eyeball.

The main types of treatment that can be used for retinoblastoma are:

Depending on the stage of the tumor and other factors, more than one type of treatment may be used.

The next few sections describe the types of treatments used for retinoblastoma. This is followed by a description of the most common approaches used based on the extent of the cancer. See the “Additional resources for retinoblastoma” section for other materials on the different types of cancer treatments and their side effects.

Last Medical Review: 12/05/2013
Last Revised: 12/05/2013