When treatment has ended, children should be closely followed to check for new cancer growth and recurrence of treated tumours, especially after eye-salvage therapy. Children often respond very well to initial eye-salvage treatment, but relapse weeks or months later.
Without close follow up care, the recurrence is not detected early. This can cost the child their eye and their life.
Frequency of Eye Exams
The frequency of eye exams depends on whether one or both eyes are affected, what treatment has been given, and how long the tumours have been stable. Children may have Examinations Under Anaesthetic (EUA) every 2-3 weeks when tumours are active, reducing to every 1-4 months after treatment ends.
MRI, lumbar puncture and bone marrow aspirates may be repeated every 3-6 months if there is a high risk of recurrence outside the eye. MRI may also be used to screen for trilateral retinoblastoma in children with a known or suspected constitutional RB1 mutation.
Socket Care and Artificial Eyes
Following eye removal surgery, the eye socket should be regularly checked and the artificial eye may be adjusted from time to time. The need to replace an artificial eye will be unique to the child as their eye socket develops. Some children need new eyes regularly while others may need only one or two changes as they grow.
Lifelong Oncology Care
Close follow-up care should continue throughout life for survivors with a constitutional RB1 mutation. Heritable retinoblastoma increases risk of other cancers, especially when radiotherapy has been used.
If follow-up is not possible for a child with heritable retinoblastoma, or genetic testing has not been completed, parents and survivors should be especially vigilant.
Consult your doctor early if you or your child have any unexplained symptoms that persist for more than two weeks. Primary doctors may not recognize the significance of such symptoms, so consulting the doctors who treated you/your child’s Rb is best.
When your child is old enough to understand it, genetic counseling should be offered to help them understand their risk and the potential risks to their children.