Treating 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.

If your child has retinoblastoma, be sure he or she is 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.

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

  • A pediatric ophthalmologist: a doctor who treats eye diseases in children
  • An ocular oncologist: a doctor (usually an ophthalmologist) who treats 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, 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. For more information, see Children Diagnosed With Cancer: Understanding the Health Care System.

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. 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 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 later in life, which can 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 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.

The main types of treatment for retinoblastoma are:

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

Thinking about a clinical trial

Clinical trials are carefully controlled research studies that are done to get a closer look at promising new treatments or procedures. Clinical trials are one way to get state-of-the art cancer treatment. In some cases they may be the only way to get access to newer treatments. They are also the best way for doctors to learn better methods to treat cancer. Still, they are not right for everyone.

If you would like to learn more about clinical trials that might be right for your child, start by asking your doctor if your clinic or hospital conducts clinical trials. See Clinical Trials to learn more.

Considering complementary and alternative methods

You may hear about alternative or complementary methods that your doctor hasn’t mentioned to treat cancer 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 a doctor’s medical treatment. Although some of these methods might be helpful in relieving symptoms or helping you feel better, many have not been proven to work. Some might even be dangerous.

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. See Complementary and Alternative Medicine to learn more.

Help getting through cancer treatment

The 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 are an important part of your child’s care. These might include nursing or social work services, financial aid, nutritional advice, rehab, or spiritual help.

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 him or her questions about your treatment options.