This NHS content is written for people in England. Services, entitlements and contact routes may differ in other countries.
Symptoms of retinoblastoma
Tests and next steps for retinoblastoma
Treatment for retinoblastoma
Causes of retinoblastoma
Symptoms of retinoblastoma include a white glow or reflection in the pupil, the eyes pointing in different directions and swelling around the eye.
Tests for retinoblastoma include looking at the eyes with a light and having an ultrasound scan. The tests may be done under general anaesthetic.
Treatment for retinoblastoma may include a combination of laser treatment, chemotherapy, radiotherapy, cryotherapy and surgery.
Retinoblastoma is often linked to a change in a gene that controls the growth of the eye. Sometimes this gene is passed onto a child by their parents.
Main symptoms of retinoblastoma
Retinoblastoma can affect 1 or both eyes.
The main symptom is a white glow or white reflection in the centre of the eye (pupil).
You may be able to see it from just looking at the eye, or you may see it in low light or in photos where a flash has been used.
Other symptoms of retinoblastoma can include:
- the eyes pointing in a different direction (squint)
- the coloured part of the eye (iris) changing colour
- swelling around the eye
- uncontrolled eye movements
- vision problems
- pain in 1 or both eyes
Your child may otherwise seem well.
Ask for an urgent GP appointment or call NHS 111 if:
- you notice a white glow or white reflection in the centre of your child's eye (pupil), which you may notice in low lighting or in photos using a flash
- your child's eye is swollen
- you think your child is having problems with their vision
- your child has a painful eye
- your child has uncontrolled eye movements
Main cause of retinoblastoma
Retinoblastoma is often linked to a change in a gene that controls the growth of the eye.
The change in this gene means cells in the back of the eye (retina) can grow uncontrollably.
The changed gene may be passed to a child by their parents, or the gene may change as a child grows.
Screening for retinoblastoma
It's not possible to prevent retinoblastoma, but screening tests can pick it up early.
If your child has a close relative who had retinoblastoma, ask your GP or midwife about screening tests. The tests can be carried out from birth.
Main tests for retinoblastoma
If a specialist thinks your child has retinoblastoma, your child will need to have some tests to check for it.
Tests for retinoblastoma may include:
- a red reflex test – a specialist will look at the back of the eye using a light
- an ultrasound scan where a small device will be placed on the eye to take images of inside the eye
- a blood test to test for changes in the gene which can sometimes cause retinoblastoma
- a vision test to check your child's eyesight, like a routine eye test
- an MRI scan to check parts of the head around the eyes
Your child may be given medicine to help them relax (sedation) or a general anaesthetic for some tests if they are very young. This is so a specialist can closely examine your child's eyes.
Main treatments for retinoblastoma
Retinoblastoma can usually be successfully treated if found early.
Treatment aims to get rid of the cancer, but there is a high chance your child may lose some, or all, of their vision in the affected eye.
The treatment your child will have will depend on:
- the size of the cancer
- where the cancer is
- if it has spread
- your child's age and health
You may be offered a combination of treatments including chemotherapy, laser treatment, cryotherapy, radiotherapy and surgery.
Your child's specialist treatment team will:
- explain the treatments, benefits and side effects
- work with you to create a treatment plan that's best for your child
- help you and your child to manage the side effects
If you have any questions or worries, you can talk to your specialist team.
Where to find help and support
If your child has retinoblastoma, your specialist treatment team will be there to support you and your child throughout treatment. They will also be able to give you information about local support services you may find helpful.
There are also national cancer charities that can offer support and information about retinoblastoma.
Childhood Eye Cancer Trust
Information and support for families affected by retinoblastoma.
Children's Cancer and Leukaemia Group
Information and resources for parents and carers of children with cancer.
- Website: www.cclg.org.uk
- Children's Cancer and Leukaemia Group: cancer in children and young people
- Children's Cancer and Leukaemia Group: my child has cancer
Grace Kelly Childhood Cancer Trust
Information and support services for families affected by childhood cancer.
Macmillan Cancer Support
Information and support for anyone affected by cancer.
- Website: www.macmillan.org.uk
- Helpline: 0808 808 00 00
- Macmillan Cancer Support: support line service
- Macmillan Cancer Support: find local support services
Cancer Research UK
Information and support for anyone affected by cancer.
Content supplied by the NHS website, refreshed 19 August 2026. View the original NHS article ↗
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