Treatment and care of children with cancer is usually provided by a team of health professionals called a multidisciplinary team. Members of this team are specialists in children’s cancers – they understand the differences between children’s cancer and adult cancer, and each team member brings different skills in managing care to meet the needs of both you and your child.
The team will be led by a childhood cancer specialist (paediatric oncologist). Other members of the team depend on the age of your child and their type of disease, and may change over time as your child’s needs change. A list of team members who might make up the multidisciplinary team can be found in The treatment team.
Treatment for retinoblastoma depends on the age of your child, the stage of the disease, the biological features of the cancer and other factors identified during diagnosis. Treatment will be tailored to your child’s particular situation, and may involve one or more of the following (see How is cancer treated for more detail).
Your child may have surgery to remove the entire eye and part of the optic nerve. This procedure is called enucleation. This is done if your child's eye has already been so damaged by the tumour that there is little or no chance they would be able to see, and the tumour is large, has not responded to treatment or has come back after treatment.
During the surgery, an implant is placed in the eye socket to take the place of the eye. This is attached to the eye muscles so it can move, and a life-like layer can be added to the surface to create an artificial eye.
Chemotherapy uses anti-cancer medicines to destroy cancer cells. It is often given as a combination of medicines to try to prevent the cancer cells from becoming resistant to just one or two medicines.
Chemotherapy medicines are given together in courses, often over a few days. Once the body has recovered from the side effects, the next course is given. Most children receive multiple courses of chemotherapy.
Retinoblastoma is usually treated with combination chemotherapy. Chemotherapy can be injected into a vein or given as a pill to help shrink the tumour and avoid surgery to remove the eye, or used after another treatment to destroy any remaining cancer cells. Chemotherapy can also be delivered directly to the eye.
Radiation therapy (also called radiotherapy) uses high-energy X-rays or other types of radiation to destroy cancer cells or stop them from growing. Your child may have radiation therapy to the eye (external beam radiation) to treat retinoblastoma. This can sometimes be given as 'plaque brachytherapy', where radioactive material is placed on the inside of a small metal disc, and the disc is placed on the outside of the eye near the tumour for a few days.
Radiation therapy can sometimes be used as an alternative to surgery so that your child can still use their eye.
Radiation therapy can have long-term side effects in children. If the potential benefits outweigh the risks and radiation therapy is included in your child’s treatment, special care will be taken to reduce these risks.
Stem cell transplant
Some children may be treated using a stem cell transplant (also known as a bone marrow transplant), in combination with high-dose chemotherapy.
Retinoblastoma may be treated by freezing and destroying the abnormal cells (called cryotherapy), or using heat from a laser beam to destroy the cancer (thermotherapy or photocoagulation).