What is Retinoblastoma?
Retinoblastoma is a rare eye cancer that develops in the retina — the light-sensitive layer at the back of the eye. It usually affects babies and young children under the age of five.
Retinoblastoma can affect one eye (unilateral) or both eyes (bilateral). Some cases are linked to an inherited genetic change, so families may be offered genetic testing and support.
Signs & Symptoms
Symptoms may include:
- a white glow or reflection in the pupil, often seen in photographs
- a squint (eyes looking in different directions)
- redness or swelling of the eye
- poor vision or the child not focusing as expected
- different-coloured pupils (less common)
These symptoms can also be caused by many non-cancer eye conditions and do not necessarily mean cancer.
How is it Diagnosed?
If retinoblastoma is suspected, your child will be referred to a specialist eye cancer centre. Tests may include:
- eye examination under anaesthetic – the key test for diagnosis
- ultrasound of the eye – to view the tumour
- MRI scan – to assess the size and position of the tumour
- genetic testing – to check if the cancer is inherited
These tests help the team understand how far the tumour has developed and plan the safest treatment.
Treatment
Treatment aims to remove or shrink the tumour, protect the child’s vision and prevent the cancer spreading. The exact treatment depends on the size, location and number of tumours.
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Chemotherapy
Chemotherapy may be used to shrink tumours. It can be given:
– through a vein (systemic therapy)
– directly into the artery feeding the eye (intra-arterial therapy)
– as an injection into the eye (intravitreal therapy) -
Local Treatments
Used to destroy small tumours or treat remaining areas after chemotherapy, including:
– laser therapy
– cryotherapy (freezing the tumour)
– thermotherapy (heat-based treatment) -
Radiotherapy
Rarely used as a first treatment now, but may be offered for certain tumours or when other treatments are not suitable. -
Surgery
If the tumour is too large to save the eye safely, removal of the eye (enucleation) may be recommended. Children adapt incredibly well with an artificial eye and continue to lead full, active lives.
Supportive Care
Your child may receive:
- vision assessments and optical support
- psychological or emotional support
play therapy during hospital visits - help with caring for an artificial eye if needed
- genetic counselling for families
Supportive care helps children feel confident and supported throughout treatment.
Monitoring Response
Regular eye examinations under anaesthetic, scans and vision checks are used to monitor how well treatment is working and to guide any further care.
Outlook & Support
Retinoblastoma has one of the highest survival rates of all childhood cancers, especially when diagnosed early. Most children go on to live healthy, active lives with excellent long-term outcomes.
During treatment your child will be cared for by a specialist children’s cancer team. Help is available with managing side effects, vision adjustments, school and emotional wellbeing.
Lennox Children’s Cancer Fund will support your whole family from diagnosis, through treatment and beyond.
Key Facts
- Common Age: Babies and young children under 5
- Survival: Around 98% long-term survival in the UK
- How common? Rare, but the most common eye cancer in young children
