Follow-up after treatment for retinoblastoma
Follow-up care lets the healthcare team keep track of your child’s health for a period of time after treatment ends. This care is often shared among the cancer specialists, the eye doctor (called an ophthalmologist) and your childʼs family doctor. They will help your child recover from treatment side effects and watch your child for any signs that the cancer has come back (recurred).
Children with retinoblastoma, and any of their siblings who might be at risk of developing retinoblastoma, will be monitored. Follow-up will be different if your child has the RB1 gene mutation (heritable retinoblastoma).
Follow-up care may not seem that important, especially if treatment was long or very hard. Follow-up care may seem stressful because itʼs a reminder of cancer and treatment, or because you are worried about what a test may reveal. But follow-up care is an important part of cancer care. Talk to your child’s healthcare team about follow-up and why it matters. The healthcare team is there to help.
Follow-up is important because there is a chance the cancer can come back (recur) and late side effects from treatment can develop. Initial follow-up focuses on checking to see if retinoblastoma has come back and making sure that the child has recovered from treatment. In the long term, follow-up looks for any late effects of treatment for retinoblastoma. People who have a childhood cancer may be followed in aftercare programs for the rest of their lives. The Children’s Oncology Group (COG) provides long-term follow-up guidelines for childhood cancer survivors. Some centres across Canada have transition clinics set up to follow the survivors of childhood cancer. These clinics help prepare survivors who are reaching early adulthood to successfully manage their own healthcare.
Schedule for follow-up visits
Donʼt wait until the next scheduled appointment to report any new symptoms and symptoms that don’t go away. Tell the healthcare team about:
- 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 from diagnosis, so your child will need close follow-up during this time.
For children with heritable retinoblastoma, itʼs very common for new tumours to form until the child is 3 or 4 years old.
Follow-up visits for retinoblastoma are usually scheduled:
- every 3 to 4 weeks during treatment
- every 2 to 3 months during the first year after treatment
- every 3 to 6 months until age 7
- every year after that for the rest of their lives
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. They may also check how your child is developing and if there are any signs that retinoblastoma has come back.
Tests are often part of follow-up care. In addition to a physical exam, your child may have the following tests:
- an eye exam will often be done under a general anesthetic or sedation for young children (your child will be asleep)
- an eye socket (orbit) exam if your child’s eye has been removed
- an MRI of the brain to look for tumours of the pineal gland (called trilateral retinoblastoma) until the age of 5, if your child has heritable retinoblastoma
If the cancer has come back, the healthcare team will discuss a plan for treatment and care.
Find out more about follow-up
Find out more about the Children’s Oncology Group long-term follow-up guidelines. The following are questions that you can ask the healthcare team about follow-up after treatment for cancer. Choose the questions that fit your child’s situation and add questions of your own. You may find it helpful to take the list to the next appointment and to write down the answers.
- What is the schedule for follow-up visits?
- How often is follow-up scheduled with the cancer specialist?
- Who is responsible for follow-up visits?
- What will happen at a follow-up visit?
- What tests are done on a regular basis? How often are they done?
- Are there any symptoms that should be reported right away? Who do I call?
- Who can help my child cope with long-term side effects of treatment?
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