Retinoblastoma is a rare type of eye cancer that affects children younger than five. It is usually detected and treated early in the UK, which is why over 98% of children with retinoblastoma are successfully treated.
World Retinoblastoma Awareness Week takes place from 11-17 May in association with the Childhood Eye Cancer Trust.
Retinoblastoma is cancer of the retina. The retina is the light-sensitive lining at the back of the eye. Retinoblastoma causes the cells of the retina to grow rapidly and out of control.
In about 40% of cases, retinoblastoma is caused by a faulty gene, which can affect both eyes. This may be inherited from the child’s parents or may develop randomly when the child is growing in the womb.
In the remaining 60% of cases, there is no faulty gene and only one eye is affected.
To check for retinoblastoma, an eye specialist will examine the child’s eyes by shining a light into them using special equipment called an indirect ophthalmoscope. If retinoblastoma is diagnosed or if there is a family history of retinoblastoma, the child will be checked by screening every few weeks or months. The frequency of this screening reduces over time but continues for five years.
If retinoblastoma has affected both eyes, it is usually diagnosed in the first year of life. If only one eye is affected, it may not be diagnosed until the child is around 18–30 months old.
Treatment and follow-up for retinoblastoma
Most cases of retinoblastoma are found early and are successfully treated before the cancer spreads outside the eyeball. When the cancer is entirely within the eye, it is known as intraocular retinoblastoma.
Your GP will refer your child to a specialist eye hospital for further checks. If retinoblastoma is suspected or diagnosed, your child will be referred to one of two retinoblastoma treatment hospitals, where they will be seen by a doctor trained in treating retinoblastoma.
Birmingham Children’s Hospital and the Royal London Hospital have specialist retinoblastoma teams. Screening and some treatment will be carried out there. If a child needs chemotherapy it will usually be done at a local children’s cancer centre and overseen by the retinoblastoma team at one of the two main hospitals.
The Childhood Eye Cancer Trust website has information about all the treatments for retinoblastoma including their side effects.