Follow-up after treatment for retinoblastoma

Follow-up after treatment is an important part of cancer care. Children with retinoblastoma and any of their brothers and sisters who might be at risk of developing retinoblastoma will be monitored. Follow-up will be different depending on whether or not your child has the inherited form of retinoblastoma (the RB1 mutation). Follow-up for retinoblastoma is often shared among the cancer specialists, the ophthalmologist and your family doctor. The healthcare team will work with you and your child to decide on follow-up care to meet your child’s needs.

Long-term follow-up is important because there is a chance that cancer can come back (recur). Late side effects from treatment can also develop. People who have had a childhood cancer will often be followed in aftercare programs for the rest of their lives.

Don’t wait until your child’s next scheduled appointment to report any new symptoms and symptoms that don’t go away. Tell your healthcare team if your child has:

  • vision problems
  • pain
  • headaches
  • bone pain
  • any new lump or swelling

The chance that retinoblastoma will come back is greatest within 3 to 5 years, so your child will need close follow-up during this time.

Schedule for follow-up visits

Follow-up visits for retinoblastoma are usually scheduled:

  • every 4 weeks during treatment
  • every 2 to 3 months during the first year after treatment
  • every 3 to 6 months until age 6 or 7
  • every year after that

During follow-up visits

During a follow-up visit, your child’s healthcare team will usually ask questions about the side effects of treatment and how your child and family are coping.

Tests are often part of follow-up care. In addition to a physical exam, your child may have any of the following tests.

  • Eye examination is done by an ophthalmologist. This will often be done under a general anesthetic or sedation for young children.
  • Orbit (eye socket) exam may be done if the child’s eye has been removed.
  • MRI of the brain may be done to look for tumours of the pineal gland (called trilateral retinoblastoma) in children who have had tumours in both eyes (called bilateral retinoblastoma).

If the cancer has come back, you and the healthcare team will discuss a plan for your child’s treatment and care.

Questions to ask about follow-up

Find out more about the Children’s Oncology Group long-term follow-up guidelines. To make the decisions that are right for your child, ask the healthcare team questions about follow-up.

Expert review and references

  • American Cancer Society. After Treatment. 2015.
  • American Society of Clinical Oncology. Retinoblastoma - Childhood. 2015.
  • Canadian Retinoblastoma Society . National Retinoblastoma Strategy Canadian Guidelines for Care. Canadian Journal of Ophthalmology. NRC Research Press; 2009.
  • Retinoblastoma. Children's Hospital Boston. Children's Hospital Boston. Boston, MA: Children's Hospital Boston; 2011.
  • Hendershot E . Retinoblastoma. Baggott C, Fochtman D, Foley GV, Patterson K (eds.). Nursing Care of Children and Adolescents with Cancer and Blood Disorders. 4th ed. APHON; 2011: 34: 1106-1120.
  • Isidro MA. Medscape Reference: Retinoblastoma Follow-up. 2016.
  • Pediatric Cancers - Retinoblastoma. Medical University of South Carolina. MUSC Children's Hospital. Charleston, SC: Medical University of South Carolina; 2012.
  • National Cancer Institute. Retinoblastoma Treatment (PDQ®) Health Professional Version. 2016.
  • National Childhood Cancer Foundation & Children's Oncology Group. CureSearch: After Treatment for Retinoblastoma. Bethesda, MD: 2011.
  • National Childhood Cancer Foundation & Children's Oncology Group. CureSearch: The First Month off Treatment for Retinoblastoma. Bethesda, MD: 2011.
  • Retinoblastoma: The Basics. University of Pennsylvania. OncoLink. Reviewed ed. University of Pennsylvania; 2008.