Retinoblastoma
Retinoblastoma is a rare type of eye cancer that can affect young children. It affects the retina, which is at the back of the eye.
If these symptoms are severe, persistent or worsening, seek medical advice promptly.
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Retinoblastoma is a rare type of eye cancer that can affect young children. It affects the retina, which is at the back of the eye.
What is retinoblastoma?
- Retinoblastoma is a rare type of eye cancer that can affect young children. It mostly affects children under 3 years of age.
- It can be in 1 or both eyes and affects the back of the eye (the retina). The retina sends signals to the brain to help you see.
- Treatments are available and it can usually be treated successfully if it's found early.
- Retinoblastoma is often linked to a change in a gene that controls the growth of the eye. It can run in families.
Symptoms of retinoblastoma
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.
What happens at the GP appointment
The GP will check the back of your child’s eyes using a light, like at an eye test.
Your child may be referred straight to hospital or to a specialist eye doctor (ophthalmologist) for further tests.
If your child is referred to a specialist, the appointment should happen within 2 weeks.
Causes of retinoblastoma
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.
Tests and next steps for retinoblastoma
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.
Getting your results
You should get your child's results on the same day as the tests, or after a few days.
A specialist will explain what the results mean and what will happen next.
If your child has retinoblastoma
It can be overwhelming to find out your child has cancer.
A specialist retinoblastoma team at the hospital will support your child and your family, and can answer any questions you might have. They will also be able to suggest local services that you might find useful.
Treatment for retinoblastoma
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.
Laser treatment
Laser treatment uses a strong beam of light, directed into the eye, to kill cancer cells.
Your child may have laser treatment for retinoblastoma if the tumour is small.
Very small tumours may be successfully treated with laser therapy alone.
Cryotherapy
Cryotherapy uses freezing to kill cancer cells. A small device is placed on the eye to freeze the cancer.
Your child may have cryotherapy for retinoblastoma if:
- the tumour is small
- the tumour is on the outer edge of the retina
Chemotherapy
Chemotherapy is medicine that kills cancer cells.
Your child may have chemotherapy for retinoblastoma:
- to shrink the tumour before having another treatment
- to treat cancer that's in both eyes or has spread
Radiotherapy
Radiotherapy uses radiation to kill cancer cells.
It's usually done by putting a small piece of radioactive material in the eye, or sometimes by aiming a beam of radiation at the tumour (this includes a treatment called proton beam therapy).
Your child may have radiotherapy for retinoblastoma if:
- the tumour is small
- other treatments have not worked
Surgery
Sometimes surgery might be needed to remove the affected eye. This is called enucleation.
Surgery may be needed because:
- the cancer is spreading to other parts of the eye
- other treatments have not worked
If your child's eye is removed, it will be replaced with an artificial eye that looks and moves similar to their other eye.
You and your child will be supported through surgery and recovery by your specialist treatment team.
Care after your child's treatment
Your child may need several rounds of treatment. They will need to attend appointments and have tests in between treatments to check how well it is working.
Your specialist team will be able to give you more information about follow-up care after your child's treatment.
