The following is intended only as a guide of the schedule you can expect after your child’s treatment ends.
Ask the ophthalmologist or oncologist to clearly explain the schedule of eye exams and tests, and reasons for them.
Attend all follow up appointments and planned tests, even if your child seems well. Cancer relapse often does not cause symptoms until it is advanced, by which time it is very difficult and expensive to treat.
Unilateral Retinoblastoma with Enucleation Only
When pathology finds no signs of cancer spread beyond the eye, the chance of relapse is remote and routine tests are not usually done.
If your child is at high risk of recurrence, routine lumbar puncture, bone marrow aspirate and imaging (MRI or CT) will be done depending on the pathology findings.
If molecular genetic testing does not find an RB1 mutation in blood, risk to the other eye is also remote. Children in this situation are often followed in clinic as the risks of general anaesthetic far outweigh the small risk of new tumours in the remaining eye.
If Molecular genetic testing is not available or finds a constitutional RB1 mutation, your child will need regular EUAs to monitor the healthy eye. This will ensure that if cancer develops, it is found at the earliest possible stage. The recommended schedule for these exams is outlined below.
After Eye Salvage Therapy and / or Constitutional RB1 Mutation
When children are at risk of developing new tumours or relapse of treated cancer within the eye, both treated and healthy eyes must be closely monitored.
Initially, EUAs should be done every 2-4 weeks for at least three months after the last tumour activity. After three months of no tumour activity, exams can be gradually reduced in frequency to 6 monthly over the next three years.
6-12 monthly eye exams in clinic should continue until age 10 years, then every 2 to 3 years for life. Life-long oncology follow-up is also recommended, attending a survivors, late effects or adult oncology clinic after age 18.
After Chemotherapy or Radiotherapy
Children should be followed by the treating oncology clinic at least every 3-6 months for 3 years after the end of treatment, then annually until 18 years old. Adults should be followed at a long-term survivors clinic, late effects clinic or adult oncology clinic every 1-2 years for life
Extraocular (Orbital or Bone Marrow)
Children should have bone marrow aspiration and MRI of the head and orbits every 3-4 months for five years. They should have whole body MRI if this is available, and attend an oncology clinic annually for life (survivors, late effects or adult oncology clinic after age 18).
Trilateral or Extraocular (Optic Nerve, Brain, Spine)
Children should have lumbar puncture and MRI of the head, orbits and spine every 3 to 6 months for 5 years. They should have whole body MRI if this is available, and attend an oncology clinic annually for life (survivors, late effects or adult oncology clinic after age 18).
Artificial Eye Follow Up
If your child has an artificial eye, the eye socket and fitting of the eye should be monitored at 6-12 monthly visits to the ocularist. The artificial eye may be adjusted or replaced periodically, depending on the needs of the individual child.
When Follow Up is Not Possible
In many countries around the world, genetic testing and MRI are not available, and follow-up oncology clinics do not exist or are not easy to access.
If close follow-up is not possible, be vigilant and proactive. Seek medical advice immediately if your child has a red, painful, swollen or bulging eye, changes in vision, a swelling in the eye socket after eye removal surgery, or any unexplained symptoms lasting more than two weeks.
Seek an urgent appointment with the doctors who treated your child’s cancer. Primary doctors or doctors unfamiliar with retinoblastoma may not recognize the significance of these symptoms.