How is retinoblastoma treated?

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 includes ophthalmologic oncologists (doctors who diagnose and treat eye cancers), pediatric oncologists (doctors who treat children with cancer), and radiation oncologists (doctors who use radiation to treat cancer), as well as the child’s pediatrician. The team will also include other doctors, nurses, therapists, child psychologists, social workers, genetic counselors, and other professionals who have essential roles in helping retinoblastoma patients and their families with recovery after treatment is finished.

There is a lot for you to think about when choosing the best way to treat or manage your child’s retinoblastoma. Often you may have more than one treatment to choose from. You may feel that you need to make a decision quickly. But give yourself time to absorb the information you have learned. Talk to the cancer care team. To get some ideas, look at the list of questions in the section, “What should you ask your child's doctor about retinoblastoma?” Then add your own. You may also want to get a second opinion. Your child’s doctor should not mind if you do this. 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 avoid second cancers, which may also be caused by treatment, particularly in children with hereditary retinoblastoma

The most important factors that will help determine treatment are:

• Whether the tumor is just in one eye or both
• How good the vision 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.

Depending on the stage of the tumor and other factors, one or more of the following types of treatment may be used:

• Surgery
• Radiation therapy (brachytherapy or external beam radiation therapy)
• Photocoagulation (using lasers to kill small tumors)
• Cryotherapy (using small, very cold probes to freeze and kill small tumors)
• Thermotherapy (using heat to kill small tumors)
• Chemotherapy

The next few sections describe these treatments in more detail and discuss which treatments may be used in different situations.