Your child will be treated by a specialist retinoblastoma team at either the Royal London Hospital or Birmingham Children's Hospital.

However, if your child needschemotherapy, it will usually be carried out at a local children's cancer centre and overseen by the retinoblastoma team at one of the two specialist hospitals.

The recommendedtreatment for retinoblastoma will depend on the stage of the tumour which can either be:

  • intraocular where the cancer is completely within the eye
  • extraocular where the cancer spreads beyond the eye to the surrounding tissue, or to another part of the body (this is rarely seen in the UK)

Most cases of retinoblastoma (9 out 10) are detected early and successfully treated before the cancer spreads outside the eyeball.

If the cancer has spread beyond the eye it will be more difficult to treat. However, this is rare as the condition is usually identified well before it reaches this stage.

Depending on the size and position of the tumour, your child's specialist will be able to accurately stage the cancer into one of a number of categories (A to E).

Visit the American Cancer Society to readmore abouthow retinoblastoma is staged.

Treating small tumours

There are two possible treatment options for treating small tumours contained within the eye. These are:

  • laser treatment to the eye (photocoagulation or thermotherapy)
  • freezing the tumour (cryotherapy)

These treatments are carried out under general anaesthetic, so your child will be unconscious and won't feel any pain or discomfort during the procedure. In some cases, chemotherapy (see below) may be needed before or after these treatments.

Treating larger tumours

Larger tumours will be treated with one or a combination of the following treatments:

  • brachytherapy if the tumour isn't too large, small radioactive plates called plaques are stitched over the tumour and left in place for a few days to destroy the tumour, before being removed; radiotherapy to the whole eye may be recommended for larger tumours that haven't responded to other treatment methods
  • chemotherapy may be used to shrink the tumour before one of the above treatments are used, or it may be recommended if there's achance of the cancer spreading; in some cases, chemotherapy medication can be delivered directly to the eye
  • surgery to remove the eye is often necessary for very large tumours where there's no sight from the eye; if your child needs to have their eye removed, they'll have an artificial eye fitted in its place

You can find out more about artificial eyes from the National Artificial Eye Service.

Side effects of treatment

Your child's treatment team will discuss any possible side effects of treatment with you. Different treatments have different side effects.

Sight lossis one of the biggest worries for parents. Your child's treatment team will do everything they can to avoid your child losing their sight. If your child needs to have one of their eyes removed, the sight in their other eye won't be affectedas long as there are no tumours in the important areas for seeing in that eye.

Children who lose sight in one eye are usually able to adapt very quickly to using their other eye, without it affecting their home and school life. If both eyes are affected by retinoblastoma, your child will probably have some degree of sight loss, and they may need support either within a mainstream or specialist school.

The UK-based retinoblastoma charity, the Childhood Eye Cancer Trust (CHECT), has more information about theside effects of treatment for retinoblastoma.


Retinoblastoma requires a long period of follow-up tests, which will initially be carried out at one of the specialist retinoblastoma centres. After a period of treatment and observation, the tests will usually take place at your local eye department.

Content supplied by the NHS Website

Medically Reviewed by a doctor on 21 Dec 2018