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Search the Barts Health NHS Trust website

What is retinoblastoma?

Retinoblastoma (Rb) is a malignant tumour, which develops in the cells of the retina – the light sensitive lining of the eye. About two thirds of children with retinoblastoma have only one eye affected (unilateral), and one third have both eyes affected (bilateral).

In very young children who are diagnosed with retinoblastoma in one eye, it is possible for a tumour to develop in the second eye several weeks or even months afterwards. The number of tumours found in the eye also varies; sometimes only one tumour develops at the back of the eye or there can be several tumours, and these may require more than one type of treatment. Retinoblastoma has one of the best cure rates of all children’s cancers, with more than 9 out of 10 children being successfully treated.

  • How common is retinoblastoma?
  • What causes retinoblastoma?
  • Signs and symptoms of retinoblastoma
  • Diagnosis and investigation
  • Treatment of retinoblastoma

How common is retinoblastoma?

Retinoblastoma is one of the less common childhood cancers and accounts for only about three percent of all cancers under the age of 15. In the UK between 40 and 50 children develop retinoblastoma each year. The tumour usually develops before the age of five years and some children are born with retinoblastoma. Children with bilateral retinoblastoma tend to present during the first year of life, while the peak age of diagnosis for children with unilateral retinoblastoma is two and a half years. Only a small number of cases are diagnosed after the age of five years.

What causes retinoblastoma?

Retinoblastoma occurs in two forms: a genetic, inheritable form, and a non-genetic, non-inheritable form.

Signs and symptoms of retinoblastoma

The most common signs of retinoblastoma is leukocoria. 

Leukocoria is an abnormal appearance of the pupil which tends to reflect light as a white reflex (like a cat’s eye)

A child's eyes displaying leukocoria

Squint is a condition where the eyes point in different directions. Although a squint can be normal in children, it is always worth having it checked to make sure.

A child's eyes showing a squint

Absence of a red reflex in flash photographs.

A child's eyes showing one has no red reflex in the camera's flash

Swollen, red or sore eye that doesn’t have an infection.

A child's eyes showing one swollen closed

A change in the colour of the iris.

A child's eyes showing the irises are two different colours

Diagnosis and investigation

The diagnosis of retinoblastoma is made by an eye specialist known as an ophthalmologist. The ophthalmologist will examine your child’s eyes under a general anaesthetic.

Treatment of retinoblastoma

There are a number of different methods of treatment available and the decision as to which is the most suitable will be made by your child’s ophthalmologist, who will take into account the size, location and number of tumours within the eye/s and the also the potential to save vision.

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