Find out how retinoblastoma is treated and what side effects treatment can have.
Because retinoblastoma is so rare, it is treated in specialist centres. There are 2 specialist retinoblastoma centres in England. Children in other parts of England, Northern Ireland and Birmingham are referred to one of these centres to have treatment. These are:
- The Royal London Hospital
- Birmingham Children's Hospital
Parents have a lot to think about and are likely to be worried about getting the best treatment for their child. Talk to the doctors or specialist nurses about any worries that you have. They will understand and will want you to feel comfortable and confident with the treatment and care that your child is getting.
These centres have teams of specialists who know a lot about retinoblastoma and the best way to treat it. The staff might also be able to put you in touch with parents of other children who have already been through diagnosis and treatment.
Treatment for small tumours
Smaller tumours need local treatment. This means treatment just to the eye itself.
Your child might have:
- laser therapy
- cryotherapy (freezing therapy)
- thermotherapy (heat treatment)
These treatments aim to destroy the tumour.
Children have the treatment while they are asleep, under general anaesthetic. Some children might have chemotherapy after local treatment.
Treatment for larger tumours
Larger tumours can be treated with:
Your child might have a combination of these treatments.
Some tumours are treated with a type of internal radiotherapy called brachytherapy. Small radioactive plates (plaques) are stitched in place directly over the tumour. The radiation destroys the tumour. The plates stay in place for a few days and are then removed.
For a large tumour that hasn't responded well to other treatment, your child's specialist might suggest radiotherapy to the whole eye.
We have more information about radiotherapy to the eye area. It's aimed at adults with eye cancer.
For a very large tumour and when the eye is no longer working, surgery is used to remove the eye. Your child then has an artificial eye to replace the lost one.
We have more information about surgery to the eye. It's aimed at adults with eye cancer.
Chemotherapy uses drugs to kill cancer cells.
Your child might have chemotherapy to try and shrink the cancer. They might have this before one of the local treatments.
Your child's doctor might suggest chemotherapy if there is any risk that the cancer might have spread. Chemotherapy drugs that doctors commonly use include:
In some cases, your child might have chemotherapy into a blood vessel (artery) to the affected eye. This is called intra arterial chemotherapy. The drug doctors most commonly use is melphalan. They usually give this for retinoblastoma that has continued to grow after treatment, or for retinoblastoma that has come back.
Your child’s doctor will talk to you about possible side effects. The side effects your child might have depend on the type of treatment they have.
Most parents worry about whether their child will lose their sight. Whenever possible, the doctor will try to keep the sight of the eye. If one eye is affected and needs to be removed, the sight in the other eye isn’t affected. Children learn to adapt very quickly and live a normal life going to mainstream school.
If both eyes are affected it is likely that your child lose some sight. This might mean they need to have visual impairment support, either within a mainstream school or in a specialist school.
After radiotherapy to a whole eye, children might develop a cataract. This depends on the type of radiotherapy they have. A cataract is clouding of the lens of the eye, which leads to slow loss of vision. Recently, a new technique of giving radiotherapy has been developed which spares the lens and means that cataracts don’t occur so often.
A dry eye is another possible side effect of radiotherapy. This is because radiotherapy can damage the tear ducts. If your child has this side effect, they have to use eye drops or artificial tears to keep the eye moist and reduce the chance of infection.
Long term side effects
Longer term problems are rare. Radiotherapy can cause a change in the shape of the face. This is because the bones in the radiotherapy area might not grow at the same rate as normal.
But it is important to remember that most children are cured with treatment.
Retinoblastoma that has come back
Very rarely, the cancer can come back again. Or another tumour can develop in the centre of the brain. This is called trilateral retinoblastoma and is very rare. The symptoms include headaches, and feeling and being sick. Contact the doctor if you are concerned about any symptoms your child has. Your child will be monitored very closely.
Children with inherited retinoblastoma can also develop second cancers later in life. But this is rare. Your doctor will talk to you about this if your child is at risk.
Coping when your child has cancer
It is understandably devastating when a child is diagnosed with cancer. Although many children with cancer are successfully treated, it is a difficult time for everyone affected.
As well as the doctors and nurses on the ward, you and your child will be supported by a number of professionals during and after treatment. These include your GP, cancer nurse specialists, social workers, play specialists and a psychologist or psychotherapist.
Talking to other people who are experiencing the same thing can also help. Our discussion forum Cancer Chat is a place for anyone affected by cancer. You can share experiences, stories and information with other people who know what you are going through.
There are children's organisations that you can contact for help and support.
The Childhood Eye Cancer Trust is a charity for families and people affected by retinoblastoma. It offers support and information, funds research and raises public awareness of this rare cancer.
Tel: 020 7377 5578 (Monday to Friday, 9am to 5pm)