Screening for eye cancer

Screening means testing people for early stages of an illness before they have any symptoms. There is no UK screening programme for eye cancer.

What is cancer screening?

Screening means testing people for early stages of a disease. This is before they have any symptoms. For screening to be useful the tests:

• need to be reliable at picking up cancers
• overall must do more good than harm to people taking part
• must be something that people are willing to do

Screening tests are not perfect and have some risks. The screening programme should also be good value for money for the NHS.

Screening for eye cancer

There is no national screening programme in the UK for all types of eye cancer. These cancers are not common and there are no suitable screening tests available. 

Screening for retinoblastoma

Retinoblastoma is a rare type of eye cancer that mainly develops in young children up to the age of about 5 years. Those children known to be at risk of developing retinoblastoma will have screening.

Some children are born with a change (mutation) in the retinoblastoma gene that they inherited from one of their parents. Or this gene change happened during the very early stages of their development in the womb. This gene is known as the RB1 gene.

Most children who have a change to the RB1 gene develop retinoblastoma. About 4 out of 10 children diagnosed (about 40%) have this heritable type, which often affects both eyes. Retinoblastoma tends to develop in just one eye in children who do not have this heritable type.

Children who have a parent or brother or sister who had retinoblastoma should be checked for retinoblastoma.  They usually have screening from birth to the age of 3 years. This involves regular eye examinations under a general anaesthetic (so your child is asleep). How often and how long a child has screening for depends on their level of risk.

Some children may also have a blood test to test for the RB1 gene. This is only possible if the family member who has had retinoblastoma can be tested first. 

Talk to your GP if you have a family history of retinoblastoma. They can refer your child to one of the specialist retinoblastoma centres. Your child is unlikely to need screening if a more distant relative, such as a cousin, has retinoblastoma. But the retinoblastoma centre can explain which of the family need screening.

What to do if you think you are at risk?

You may notice symptoms of eye cancer yourself. This is a very rare cancer and so your symptoms may be due to another eye condition. But see your GP or optician if you notice any changes in your eyesight, or in the way your eye looks or feels.

Opticians sometimes find eye cancer when they are doing routine eye examinations.