Young people aged 12-18

This area of the website has been written for anyone aged between 12 and 18 years old who had retinoblastoma (Rb) when they were younger.  We have information about the different treatments for retinoblastoma in this area as you might want to learn about the treatments you were given.  If you have questions you can’t find the answer to here please contact one of our support workers.

 

What is Rb?

Retinoblastoma (Rb) is an eye cancer of early childhood. This cancer develops in the retina of the eye.  The cancer can be in two eyes (bilateral) or in one eye (unilateral).  Retinoblastoma is one of less common childhood cancers and accounts for only about 3% of all cancers in those under the age of 15.  In the UK between 40-50 children are diagnosed with retinoblastoma each year.

 

Why me?

Our bodies are made up of tiny building blocks called cells, sometimes when new cells are being made by the body one is made incorrectly.  Usually the body knows that one is wrong and gets rid of it, but sometimes that one cell keeps growing, copies itself and divides to make more incorrect cells.  This group of faulty cells is called a cancer or tumour.  A tumour which develops in the back of the eye (the retina) is called a retinoblastoma (Rb).  For some people who had Rb a cancer just grows by chance or by accident because the body didn't get rid of the incorrect cell.
Some people can develop a retinoblastoma (Rb), not by chance but because someone in their family has Rb. If a family member has Rb, the chances of another family member getting Rb may be higher.  This is because some people have a type of retinoblastoma which is in their genes, it is known as genetic or heritable retinoblastoma.
Genes are the instructions in the cell and they tell the cells how to grow.  People with genetic/heritable retinoblastoma have a mistake in the instructions in their cells.  This mistake can be in all or many cells in the body.  Genetic/heritable retinoblastoma can be passed from generation to generation.  It is possible for more than one person in a family to have this type of Rb.  If someone has the genetic type of Rb they have more chance of developing retinoblastoma tumours and also in some cases other cancers too.  Not everyone who has genetic/heritable retinoblastoma will get retinoblastoma themselves.  Special genetics blood tests have to be designed to find this out for each person.  Also screening under anaesthetic and follow up clinics will check each person who has genetic/heritable Rb for their risk of developing cancer.
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Clinic

If you had Rb when you were younger, you will have to be checked often by the doctors in a clinic.  They are checking to make sure you are ok and that you have no effects from the treatments you have had.  Clinic is somewhere you can ask any questions you have about Rb or the treatment you had.  They may also give you information when you start to get older about ways you can look after yourself.  If you have genetic/heritable retinoblastoma the doctors will give you information about what this may mean for you in later life.
There is a good booklet called What's the point in coming to clinic? made by the CCLG you can ask the support worker if you want a copy.
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Click on the links below for further pages within this section you might like to read:

My treatment

A brief explanation of all of the treatments doctors may offer or have offered for children who have or have had retinoblastoma and what is involved.

Who can I talk to?

Need someone to talk to? Whether it is someone who has been through a similar experience or a medical expert for advice we can point you in the right direction.

School/college/work

Looks at different ways of telling your friends and colleagues about how retinoblastoma affected you, how to tackle negative comments and how to keep safe.

My story

Hear our younger members' accounts of how they have been affected by retinoblastoma and how they have overcome any difficulties.

Into adulthood

Looks at further considerations adults who had Rb as a child may have depending on treatment and the type of retinoblastoma they were diagnosed with.

Extras and links

Some links to some other relevant websites you might find interesting which are especially designed for young people.