Children aged 7-11

Welcome to the part of our website for 7 to 11 year olds. We hope you like it. Below we have tried to explain a bit about what happened or is happening to you. See the links at the bottom of the page for other pages within this section that you might like to read.

What is retinoblastoma or Rb?

Retinoblastoma (Rb) is a type of illness called cancer. Cancer can make people unwell in different parts of their bodies; Rb is a kind of cancer that makes your eye unwell.

Why me?

Retinoblastoma or Rb is an illness.  Nobody gets Rb because of something they have done or haven't done.
Our bodies are made up of tiny building blocks called cells, sometimes when new cells are being made by the body one can go wrong.  Usually the body knows that one is wrong and gets rid of it, but sometimes that one cell can keep growing, copy its self and more wrong cells can be made.  This group of wrong cells is called a cancer or tumour.
A person can develop wrong cells in the back of the eye, which may be a tumour of a cancer called retinoblastoma.  For some people who have Rb a cancer just grows by chance or by accident because the body didn't get rid of the wrong 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 called genetic.
Genes are the instructions in the cell and they tell the cells how to grow.  People with genetic retinoblastoma have a mistake in the instructions in their cells.  It is possible for more than one person in a family to have the genetic type of Rb.  If someone has the genetic type of Rb they have more chance of developing a cancer.  Not everyone who has someone in their family with retinoblastoma is at risk, or will get retinoblastoma themselves.  Special genetics blood tests have to be done to find this out.
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Coming to 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.
There is a good booklet called What's the point in coming to clinic? made by the Childhood Cancer and Leukaemia Group (CCLG) which you can ask our support worker for if you would like to see a copy.
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Who can I talk to?

If you have questions there are lots of different people you can talk to.  Below is a list of places where you can find some answers or just to talk and share your experiences.
  • The closest people you might like to talk to about how retinoblastoma (Rb) affected you as a baby or young child are your parents.  You might be able to find out a lot if you ask them about your diagnosis and treatment.
  • Your teacher can be a good person to talk to if something is worrying you.
  • The Retinoblastoma Team at the Royal London Hospital and Birmingham Children's Hospital will be able to answer medical questions for you.  You can ask them the next time you go to clinic or ask your parents if you can go to clinic sooner.
  • If you want to talk to someone about how Rb or how the treatment has made you feel about yourself then people you can talk to are the clinical nurse specialist, or the play specialist at the hospital or the Childhood Eye Cancer Trust support worker.
  • You can talk with people who had Rb at the Childhood Eye Cancer Trust Annual Members' Day or regional meet-ups.  You can ask a support worker to link you with someone else who might feel the same.
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Other pages in this section you might like to read include:

My treatment

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

At school

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

My story

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

Fun stuff and links

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