General treatment information
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.
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:
- Radiation therapy
- Photocoagulation (using lasers to kill small tumors or the blood vessels that feed them)
- Cryotherapy (using cold to freeze and kill small tumors)
- Thermotherapy (using a type of laser to apply heat to kill small tumors)
- High-dose chemotherapy and stem cell transplant
Sometimes more than one type of treatment may be used. The treatment options are based on the extent of the cancer and other factors.