Retinoblastoma in children

While retinoblastoma is a rare childhood cancer, it has a high cure rate ­­­­­at more than 90%. Doctors at our Park Ridge location have extensive experience in treating retinoblastoma and helping your child.

Our care team provides treatments such as radiation therapy and cryotherapy at our cancer center. We also have a special partnership with Illinois’ only proton therapy center, giving your child nearby access to this innovative approach.

Advocate Children’s approach to childhood cancer care

Our expert cancer care team works with you and your child to find the best treatment and greatest chance for a cure. We get to know your whole family, with each appointment taking place in a comforting environment.

We have cancer centers in Park Ridge and Oak Lawn, letting your family avoid long, tiring drives into the city. Our social workers carefully organize appointments, bringing together the team you require and not keeping you longer than needed. On-call nurses are available 24/7 for questions and concerns.

About childhood retinoblastoma

Childhood retinoblastoma happens when a tumor forms in the thin layer of nerve tissue at the back of the eye. Most children diagnosed with retinoblastoma are under the age of five.

Retinoblastoma tumors can happen in one or both eyes. These tumors can spread, or metastasize, to lymph nodes, bones and bone marrow.

Childhood retinoblastoma signs and symptoms

During well visits, doctors check babies for signs of retinoblastoma as a precaution. Still, while some children show early signs and symptoms of the cancer, others don’t. Signs and symptoms include:

• Poor vision
• Eye that looks toward ear or nose
• Eye that is red or painful
• Changes in certain parts of the eye:
• Pupil that is white, red or enlarged
• Irises that are different colors

As retinoblastoma develops further, it often causes discomfort. In addition to treating the cancer, our team prioritizes relieving that pain.

Diagnosing childhood retinoblastoma

Doctors do an eye (ophthalmic) examination of your child’s retina. They may use anesthesia for the test, to make sure your child remains comfortable. Some of the diagnostic tests used are:

• Ultrasound: Uses sound waves to create pictures of what the body looks like inside and check for tumors
• Scans: Uses beams of energy to create images of the inside of the body
• Blood tests: Checks for problems with the liver, kidneys and chromosomes
• Spinal tap (lumbar puncture): Takes sample of spinal fluid to look for cancer cells or substances in blood that indicate there’s a tumor
• Bone marrow aspiration and biopsy: Removes a small amount of bone marrow to check for cancer cells

Childhood retinoblastoma stages

Staging the retinoblastoma helps our team determine the best treatments to recommend. Doctors use diagnostic tests to tell how fast the cancer is growing. They also determine whether it has stayed within the eyes (intraocular) or spread to other parts of the body (extraocular). And they consider whether the cancer is in one eye or both.

Our doctors review the test results with you and explain the stage as they discuss possible treatment options.

Childhood retinoblastoma treatments

Our pediatric ophthalmologist and other specialists may recommend a clinical trial or a combination of therapies for your child. Treatment may include:

• Radiation therapy, which uses energy beams against cancer
• Proton therapy, a type of highly precise radiation therapy
• Cryotherapy, which freezes the tumor
• Laser therapy, which heats the tumor
• Chemotherapy drugs to destroy cancerous cells (with stem cell transplant when high doses used)
• Cancer surgery to remove the affected eye and part of the optic nerve

Support for your child and family

Childhood cancer can impact the whole family. Our care team provides crucial information and resources during your child’s treatment. Learn more about our support for your child and family, including:

• On-call nurses who can answer questions 24/7
• School assistance during and after treatment
• Free events and activities for your family

Childhood retinoblastoma survivorship and transition to adulthood

Survivors of retinoblastoma have plenty to celebrate. They also need to stay vigilant for later problems with their eyesight or depth perception. Additionally, some children need monitoring into adulthood to watch for the possible return of cancer.

Our Pediatric Oncology Survivors in Transition (P.O.S.T.) program helps your child and family successfully move from cancer into survivorship. We meet regularly and support your child and family by:

• Celebrating survivorship
• Keeping track of follow-up exams and testing
• Watching for long-term or late effects of cancer, chemotherapy and radiation therapy
• Coordinating with our Adolescent Center and adult doctors during your child’s teen years