Retinoblastoma and me

Why me?

Retinoblastoma or Rb is an illness. Nobody gets retinoblastoma 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 itself 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 or a cancer called retinoblastoma. For some people who have retinoblastoma a cancer just grows by chance or by accident because the body didn’t get rid of the wrong cell.

Some people can develop retinoblastoma not by chance but because someone in their family has retinoblastoma. If a family member has retinoblastoma, the chances of another family member getting it 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 retinoblastoma.

If someone has the genetic type 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.

Coming to clinic

If you had retinoblastoma 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 retinoblastoma or the treatment you had. They may also give you information when you start to get older about ways you can look after yourself.

Cryotherapy

Cryotherapy is to help make your eye feel better. It works by making the eye really cold. The doctors will put an instrument that looks like a pen on your eye, they will do this at the hospital after you have your anaesthetic to make you sleep, so you won’t feel it. When you go home the doctor will give you cream to put on your eye for a few days to help make it feel better.

Laser

Laser therapy is a special type of medicine that the doctors will give you while you are under anaesthetic. The doctors will use a special infrared beam that shines directly into your eye so that it gets right to the area that needs treatment.

Chemotherapy

Chemotherapy is a type of medicine. It is different to the type of medicine that your mum, dad or guardian gives you at home so you will have to go to the hospital to have it.

The doctors will put a tube in your chest so the chemotherapy medicine can go through the tube and into your body and poorly eye. You will have to have an anaesthetic while the doctors put the tube in. The tube is called a Hickman line or wiggly. You will need to have the medicine four to six different times so they will leave the Hickman line in your chest until you are finished having the medicine.

Chemotherapy medicine can make you feel a bit sick and tired, but it will be helping your eye to feel better. Sometimes the medicine can make you feel a bit sleepy or grumpy and for some children it can make their hair fall out, but if this happens your hair will grow back once the medicine is finished.

Intra-arterial chemotherapy (IAC)

Intra-arterial chemotherapy is a different type of chemotherapy medicine because this one is given while you are under anaesthetic and you don’t need a Hickman line.

While you have your anaesthetic the doctors will put a special long tube that goes through a very small hole made in your leg and goes all the way up your body and into your poorly eye. The medicine will go right into the eye to help make it better.  After the medicine gets to your eye the doctors will take the long tube out and put a plaster on your leg.

Intravitreal chemotherapy (IVC)

This is another kind of chemotherapy where the medicine is put directly into your poorly eye while you are under anaesthetic and you don’t need a Hickman line.

Enucleation

Your eye is poorly and the only way to make sure that it doesn’t make the rest of you feel sick is to take it out and put a new eye that isn’t poorly in its place. This will be a special eye and won’t be used for seeing.

You will have an anaesthetic so that you won’t feel the doctor take it out. When you wake up you will have a bandage over your new eye and it might be a bit sore.

Radioactive plaques

These plaques are like small round pieces of material that the doctor will put inside your eye. In order for the doctor to get the plaque on your eye you will need to have an anaesthetic.

When you wake up you will have to stay in your hospital room until the doctor takes the plaque off. You will have an eye patch over your eye so that the medicine stays inside of your eye. When the doctor takes the plaque off you will have another anaesthetic.