Retinoblastoma is a rare type of eye cancer that affects children younger than five. It is usually caught and treated early in the UK, which is why over 98% of children with retinoblastoma are successfully treated.
Babies with a family history of retinoblastoma will be screened for the cancer soon after birth. This is generally done at one of the two treatment centres in the UK: Birmingham Children’s Hospital or the Royal London Hospital. Your GP can refer you to one of these centres if you had retinoblastoma as a child and are expecting a baby.
About 40 to 50 children develop retinoblastoma each year in the UK.
The following information is for parents or carers of children who have just been diagnosed with retinoblastoma. It explains:
- what retinoblastoma is and why it develops
- the treatment and follow-up your child can expect
- warning signs to be aware of, in case retinoblastoma comes back
About retinoblastoma
Retinoblastoma is cancer of the retina. The retina is the light-sensitive lining at the back of the eye. Retinoblastoma causes the cells of the retina to grow rapidly and out of control. One or both eyes may be affected by the cancer.
In about 40% of cases, retinoblastoma is caused by a faulty gene. This may be inherited from the child’s parents or may develop randomly when the child is developing in the womb.
To check for retinoblastoma, an eye specialist will examine the child’s eyes by shining a light into them. If retinoblastoma is diagnosed or if there is a family history of retinoblastoma, the child will be checked by screening every few months for five years.
If retinoblastoma has affected both eyes, it is usually diagnosed in the first year of life. If only one eye is affected, it may not be diagnosed until the child is around 18–30 months old.
Treatment and follow-up for retinoblastoma
Most cases of retinoblastoma are found early and are successfully treated before the cancer spreads outside the eyeball. When the cancer is entirely within the eye, it is known as intraocular retinoblastoma.
Your GP will refer your child to a specialist eye hospital for further checks. If retinoblastoma is suspected or diagnosed, your child will be referred to one of two retinoblastoma treatment hospitals, where your child will be seen by a doctor trained in treating retinoblastoma.
Birmingham Children’s Hospital and the Royal London Hospital have specialist retinoblastoma teams. Screening and some treatment will be carried out there. If a child needs chemotherapy, it will usually be done at a local children’s cancer centre and overseen by the retinoblastoma team at one of the two main hospitals.
The Childhood Eye Cancer Trust website has information about all the treatments for retinoblastoma mentioned below, including their side effects.
Treating early-stage retinoblastoma
Treating a small tumour that is completely inside the eye usually involves one of the following treatments:
- laser treatment to the eye (photocoagulation)
- freezing the tumour (cryotherapy)
Treating larger tumours
Larger tumours will be treated with one or a combination of the following treatments:
- Radioactive plaque – if the tumour is not too large, a small radioactive disc is stitched over the cancerous cells and left in place for a few days to destroy the tumour, before the disc is removed.
- Chemotherapy – cycles of anti-cancer drugs may be given to kill the cancer cells. Sometimes, these anti-cancer drugs are injected directly into the blood vessel supplying blood to the eye.
- Surgery to remove the eye – this is necessary if the tumour is very large and the eye can no longer see. An artificial eye will be fitted. You can find out more information about having an artificial eye fitted on the National Artificial Eye Service and Moorfields Eye Hospital websites.
Children who lose sight in one of their eyes are usually able to adapt very quickly to seeing out of their healthy eye, without it affecting their life.
Your child may be offered treatment as part of a clinical trial. Search for clinical trials for retinoblastoma.
If the cancer has spread beyond the eye (extraocular retinoblastoma), it has the potential to spread around the body and is more difficult to treat. However, this is unusual in the UK.
Warning signs of retinoblastoma
It’s important to be aware of the warning signs of retinoblastoma. Two common signs are:
- the pupil looking odd – usually, the affected pupil reflects white, like a cat’s eye (see the picture on this page). This may be spotted in photos, where only the healthy eye appears red from the flash, or it may be noticed in a dark room or a room lit by artificial light
- a squint – the child’s eyes look in different directions
Sometimes, the iris (the coloured part of the eye) may change colour, or the child may complain that they cannot see as well as they used to.
These signs may be due to something other than retinoblastoma, but you should still get them checked by a GP immediately. The GP should carry out a red reflex assessment (PDF, 314Kb).
It is unusual for retinoblastoma to progress unnoticed until the child is older than five. In these rare cases, the eye may be red, sore or swollen, and there may be loss of vision.
More information and support
The Childhood Eye Cancer Trust (CHECT) website provides information about retinoblastoma. It also offers help and support to parents and carers of affected children as well as adults who were affected as a child. CHECT can also put you in touch with other parents of affected children.
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