About retinoblastoma

Retinoblastoma is a rare cancer of the retina (area at the back of the eye).  It affects about 40 children a year in the UK and is most common in very young chidlren and infants. The average age of diagnosis is around 4 months old and it can occur in just one eye or both.

About 40% of cases are inherited (run in families). All children born into families with a history of retinoblastoma will be screened regularly during their first 5 years of life so treatment can be commenced early.

​Couples with strong family history should be referred to specialist genetic services if planning pregnancy or if expecting a baby for counselling regarding retinoblastoma risk and screening.

Symptoms of retinoblastoma

  • An unusual white appearance to the pupil in a child's eye (the black centre of the eye). This may be visible in normal light but is more common on photos taken with a flash
  • A new or changing squint (where your child's eyes do not appear to always be looking in the same direction)
  • Unusual flickering eye movements (nystagmus)
  • An inflamed, swollen eye
  • A change in iris colour of the affected eye
  • A worsening of vision (in very young children especially, this can be hard to identify)
  • Often, children have few or no other symptoms

Treatment

Smaller tumours can often be treated with laser therapy to the affected eye.

For slightly larger tumours, a small radioactive disc (known as a plaque) may be attached to the outside of the eye for up to four days to destroy the cancer cells.

Larger tumours may need to be treated with chemotherapy, radiotherapy or surgery (enucleaction). At a later date, children who have had an eye removed may receive a prosthesis.

Outcomes

Earlier diagnosis and advances in the treatment of retinoblastoma mean that it has one of the best survival rates of all childhood cancers with over 99% of chidlren surviving 5 years.


 

If you are reading this page, the likelihood is that you are worried your child or a child close to you may have cancer. Alternatively, they may have recently been diagnosed.

If you have any concerns or queries, please discuss them with a member of your child's health care team. If you are unsure, it is always better to have your child reviewed.