Retinoblastoma is a type of children’s cancer that happens in a part of the eye called the retina. The retina is a thin layer of tissue at the back of the eye. It changes the light that travels into our eyes into signals that are sent to the brain, allowing us to see.

Types of retinoblastoma

There are two main types of retinoblastoma:

  • A heritable form – this means that the retinoblastoma is due to a gene that has been passed down through the family tree and is inherited by certain members of the family. Sometimes this type of retinoblastoma may cause the cancer, in the form of a tumour, or lump, to be present in both eyes (bilateral).
  • A non heritable form – which is when retinoblastoma is not passed on in through the family. Normally this type of retinoblastoma is only present in one eye (unilateral).

If you’re not sure about the type of your child’s retinoblastoma, talk to your specialist for more information about your child’s cancer and its treatment.

What are the symptoms?

The most common symptom of retinoblastoma is an unusual white reflection in your child’s eye, which can sometimes be noticed in a photograph if a flash photo is taken of your child. You might also notice your child squinting or they that are have poor vision.

How is it diagnosed?

Retinoblastoma is normally diagnosed after a number of tests in a hospital. Your child will normally have examination of the eye, which may be done by a specialist when they are asleep under general anaesthetic. Other tests may also include scans to examine the eye more closely and blood tests.

Your child’s specialists will be able to work out the stage of cancer from these tests. The stage is the size of the tumour and whether it has spread to other parts of your child’s body.

How is it treated?

Your child’s exact treatment will depend on their type of retinoblastoma they have and how far their tumour has spread, so it’s best to talk to their specialist for further information.

A smaller tumour is normally treated with local therapy, which is treatment to destroy the tumour given directly to the eye under general anaesthetic. This includes laser therapy, when a laser is directed through the pupil to heat the tumour or cryotherapy, a technique used to freeze the tumour.

A larger tumour is normally first treated with chemotherapy. Chemotherapy, which uses anti-cancer drugs to kill cancer cells, is usually given as an injection or through a drip every 3–4 weeks for four or more sessions of treatment. Surgery and radiotherapy, where radiation is used to kill cancer cells, may also be used.

What happens after treatment?

Your child will normally have regular follow up appointments, where their specialist will check their progress and make sure their cancer hasn’t come back.

Many children don’t have long-term health problems following treatment, but some do. Talk to your child’s specialist about the potential long-term side effects of your child’s treatment.

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