Screening for eye cancer

There is no national screening programme for eye cancer in the UK. This is because there isn’t a test that can pick up eye cancer at an early stage.

Screening tests are offered to children at risk of a rare type of eye cancer called retinoblastoma.

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.

Why there isn’t a screening programme for eye cancer in the UK

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 in children. The aim of screening for retinoblastoma is to spot cancer at an early stage. This means treatment is more likely to be successful and improve your child’s chance of survival.

Who needs checking?

Doctors should check your child to see if they have a close relative who has or has had retinoblastoma. A close relative includes a parent, brother or sister. This involves:

• a blood sample taken during pregnancy. This is from the arm of a mother with the heritable form of retinoblastoma. The test is called Non-Invasive Prenatal Diagnosis (NIPD)
• regular eye examinations under a general anaesthetic (so your child is asleep). How often and how long your child has screening for depends on their level of risk. They usually have regular screening from birth to the age of 5 years. This may vary between different retinoblastoma centres
• a blood test for some children to check for the RB1 gene. This is only possible if the family member who has had retinoblastoma can be tested first

If your child’s relative does not have the mutation, they won’t need screening for retinoblastoma.

Talk to your GP if you have a family history of retinoblastoma. They can refer your child to one of the two specialist retinoblastoma centres. They are:

• Royal London Hospital
• Birmingham Children’s Hospital 

Your child is unlikely to need screening if a more distant relative, such as a cousin, has retinoblastoma. The retinoblastoma centre can explain which family members need screening.

Talk to your GP or optometrist if you think you are at increased risk of eye cancer. They may ask questions about any family members who have cancer and the age they were diagnosed. Your GP may be able to reassure you that your risk of eye cancer is not increased. Or they may refer you to a family cancer clinic or genetic clinic for advice.

What you can do

See your GP or optometrist if you have any possible symptoms of eye cancer.