Childhood Eye Cancer Trust - What might happen next

Your child may have their vision tested before a diagnosis is given

If your GP is concerned about your child’s eyes, they will refer them to the local ophthalmology department. This referral should be urgent and your child should be seen within two weeks.

At the ophthalmology department your child may be seen by an ophthalmologist (consultant eye doctor/surgeon) and in some cases a children’s (paediatric) ophthalmologist. They may do another red reflex test. They will use eye drops which increase the size of the pupil, opening up their view into your child’s eye so that they can have a really good look at the back of the eyes.

Some ophthalmologists will do an ultrasound to help them make a diagnosis. This involves a gel being put on the outside of the eyelid and then an ultrasound probe placed onto the eyelid. This allows the ophthalmologist to scan the eye and is not usually painful.

The pressure in your child’s eye may also be checked. This can be done in two ways – either a special puffer is used to puff air directly at the eye and the response to indicate a change in pressure, or yellow eye drops can be administered and then an instrument with a blue light is used to touch the front of the eye and the pressure is read using this tool.

In some cases the ophthalmologist may decide your child needs to be checked while under anaesthetic so that they can have a better look at the retina. This will have to be done on a day care ward but the appointment and procedure will be explained to you. Your child may also have a vision test. This will probably be carried out by an orthoptist.

If retinoblastoma is suspected

If retinoblastoma is suspected, an urgent referral will be made for your child to be seen at one of the two retinoblastoma treatment centres in the UK – The Royal London Hospital in Whitechapel, or Birmingham Children’s Hospital.

An appointment will be made for your child to be seen within a week and the retinoblastoma service team will contact you, usually by telephone, before your appointment. Your child will need a general anaesthetic at this stage so that their eyes can be thoroughly checked to confirm or rule out retinoblastoma.

If your child has retinoblastoma

If your child is diagnosed with retinoblastoma, there are a variety of different treatments that are available – this will be tailored specifically to each child’s needs. Your consultant will discuss this fully with you at diagnosis.

If you’ve just been given this news, you may find our Just diagnosed information leaflet useful. We know that this is a very distressing and frightening time, and if you need to talk to someone, please call us on 0207 377 5578 or email support@chect.org.uk.

See also

Childhood Eye Cancer Trust


Childhood Eye Cancer Trust - who to see


Childhood Eye Cancer Trust - Fundraise