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Treating Retinoblastoma

If your child has been diagnosed with retinoblastoma, your child's treatment team will discuss the options with you. It’s important to weigh the benefits of each treatment option against the possible risks and side effects.

Common treatment approaches

Sometimes more than one type of treatment may be used. The treatment options are based on the extent (stage) of the cancer and other factors.

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 side effects later in life that can be caused by treatment, particularly second cancers in children with hereditary retinoblastoma

The most important factors that help determine treatment are:

  • The size and location of the tumor(s)
  • Whether the cancer is just in one eye or both
  • How good the vision in the eye is
  • Whether the cancer has extended outside the eye

Overall, more than 9 in 10 children with retinoblastoma are cured. The chances of long-term survival are much better if the tumor has not spread outside the eye.

Who treats retinoblastoma?

Retinoblastoma is rare, so not many doctors other than those in specialty eye hospitals and major children’s cancer centers have much experience 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.

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

  • pediatric ophthalmologist: a doctor who treats eye diseases in children
  • An ocular oncologist: a doctor (usually an ophthalmologist) who treats cancers of the eye
  • 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, physician assistants (PAs), nurse practitioners (NPs), nurses, therapists, child psychologists, social workers, genetic counselors, and other professionals. Having a child go through cancer treatment often means meeting lots of specialists and learning about parts of the medical system you probably haven’t been exposed to before.

Making treatment decisions

Once the cancer is found and the needed tests have been done, the cancer care team will discuss treatment options with you. It’s 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. 

If time allows, getting a second opinion from another doctor experienced with your child’s type of cancer is often a good idea. This can give you more information and help you feel more confident about the treatment plan you choose. If you aren’t sure where to go for a second opinion, ask your doctor for help.

If your child has retinoblastoma, be sure they are treated at a children’s cancer center that has expertise in treating 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.

Thinking about taking part in a clinical trial

Today, most children and teens with cancer are treated at specialized children’s cancer centers. These centers offer the most up-to-date-treatment by conducting clinical trials (studies of promising new therapies). Children’s cancer centers often conduct many clinical trials at any one time, and in fact most children treated at these centers take part in a clinical trial as part of their treatment.

Clinical trials are one way to get state-of-the art cancer treatment. Sometimes they may be the only way to get access to newer treatments (although there is no guarantee that newer treatments will be better). They are also the best way for doctors to learn better methods to treat these cancers. Still, they might not be right for everyone.

If you would like to learn more about clinical trials that might be right for your child, start by asking the treatment team if your clinic or hospital conducts clinical trials.

Considering complementary and alternative methods

You may hear about alternative or complementary methods that your doctor hasn’t mentioned to treat your child's tumor or relieve symptoms. These methods can include vitamins, herbs, and special diets, or other methods such as acupuncture or massage, to name a few.

Complementary methods refer to treatments that are used along with your regular medical care. Alternative treatments are used instead of standard medical treatment. Although some of these methods might be helpful in relieving symptoms or helping people feel better, many have not been proven to work. Some might even be harmful.

Be sure to talk to your child's cancer care team about any method you are thinking about using. They can help you learn what is known (or not known) about the method, which can help you make an informed decision. 

Preparing for treatment

Before treatment, the doctors and other members of the team will help you, as a parent, understand the tests that will need to be done. The team’s social worker will also counsel you about the problems you and your child might have during and after treatments such as surgery, and might be able to help you find housing and financial aid if needed.

Help getting through cancer treatment

Your child's cancer care team will be your first source of information and support, but there are other resources for help when you need it. Hospital- or clinic-based support services can also be an important part of your care. These might include nursing or social work services, financial aid, nutritional advice, rehab, or spiritual help. For children and teens with cancer and their families, other specialists can be an important part of care as well. 

The American Cancer Society also has programs and services – including rides to treatment, lodging, and more – to help you get through treatment. Call our National Cancer Information Center at 1-800-227-2345 and speak with one of our trained specialists.

The treatment information given here is not official policy of the American Cancer 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 your cancer care team any questions you may have about your treatment options.