What happened to my eyes?What happened to my eyes?
Rb is a type of illness called cancer. People can get cancer in different parts of their body but Rb is a cancer in the eye.
What is cancer?
Our bodies are made up of tiny cells, which are so small you can only see them through a microscope. Cells are sometimes called the building blocks of life. Cells group together to make parts of our body like our bones, skin, muscles and organs.
Our cells work hard to keep us healthy, they split to make new cells and this is what helps us to grow.
Sometimes a few cells can get sick and don't work well with the healthy cells; these cells can grow very quickly and split to make more sick cells. When cells behave like this, it is called cancer.
What is Retinoblastoma?
Rb is a type of cancer that can affect one or both eyes. This is where sick cells grow in the back of the eye to make a lump called a tumour, on the bit of the eye called the retina. This part of the eye sends signals to your brain and then the brain turns the signals into pictures, which is how we see. If there is a lump, on the retina, it makes it very hard to see, and if the lump is very big, you can't see with that eye at all.
Rb is a very rare cancer and each year in the UK, about 45 children find out they have it. Most children with Rb get it when they are very young and almost all children who have Rb are told they have it by the time they are 5 years old.
Rb is a very serious illness and parents get very upset and sad when they find out their child has it. When the child gets better they will get happier but some parents find it hard to talk about what happened when they first found out that their child had Rb.
How does your eye work?
This is a picture of the eye from the front. You can see the pupil, which is black, and the iris, which is the coloured part of the eye.
This is a picture of the eye from the side view as if you were able to look inside the eye from the side. The green bit would be the coloured circle if you look from the front and is called an iris. The smaller black circle in the middle is called a pupil. The pupil gets bigger in the dark and smaller when it is light; this helps the right amount of light to get through the lens, and onto the retina. The lens is the oval shape behind the iris and helps to put what you are looking at into focus.
You can sometimes see the signs of retinoblastoma, or Rb for short, in a photograph. If you had Rb when you were little you can ask your Mum or Dad if they noticed the signs of it in a photograph.
In most children when they have their photograph taken, the pupil in the centre of the eye stays black or goes red. This happens when the light from the camera flash travels through the pupil and lens to the retina. But, in children with Rb, their pupil looks white as the light from the camera's flash reflects off the tumour or lump on their retina.
The boy in the photo below has Rb in his right eye. You can tell because his right eye looks very unusual and the pupil is a whitish yellow.
Another sign of Rb is when a child's eyes do not point in the same direction and is called a squint. Sometimes the eye with the lump doesn't seem to move as well as the other one.
The girl in the picture below has a squint, her eyes don't point in the same direction.
The boy in this photo has Rb and you can tell because his right pupil looks white. His Mum and Dad noticed his eye looked different and took him to the doctor to be checked. The doctor knew that something was wrong and sent the boy and his parents to a special eye hospital where he needed to have treatment to make him better.
How do doctors find it?
To find the lump (and sometimes there can be more than one) you need to look closely at the back of the eye.
The doctor will use an instrument called an ophthalmoscope which shines a bright light into the eye like a special torch. It has a magnifying glass in it so that they can see even very small lumps or tumours. They need to put drops in the eye (and they can sting a bit) to make the pupil, that's the black bit in the middle, get bigger so they can see through it.
To get a really good look, it is best if the small child goes to sleep for a little while because if they are awake they wriggle about so the doctor can't see properly.
The child will be given a medicine to make them sleep this is called anaesthetic. Sometimes the doctor will give the child the anaesthetic medicine in a mask that they have to breath through. They can be a bit sleepy or upset when they wake up. Children who have an anaesthetic mustn't have anything to eat or drink for a while before they go to sleep so they get pretty hungry and thirsty too!
How do they make it better?
Sometimes when children have Retinoblastoma or Rb, their tumours can grow too big and damage their eye. If it gets very big, it could spread to other parts of their body. This is very serious. If it does get very big, the doctors decide that an operation called an enucleation is needed, which is when the whole eye is taken out. After the operation, children need to wear a plastic shell (called a conformer) for 6 weeks until they can have an artificial eye put in. The operation doesn't hurt a lot and a bandage is only needed for a few hours. Afterwards the eye might look a bit bruised but it soon gets better.
If children have smaller tumours in their eyes then the doctors will try different things to stop them growing.
Cryotherapy
- Is when the child goes to sleep with an anaesthetic, and the doctor takes instrument that looks like a pen, and puts it onto the tumours to make them freeze like ice.
Radioactive plaques
- The child goes to sleep with an anaesthetic and the doctor puts small pieces of material (plaque) inside the eye, which makes high-energy rays to get rid of the tumour. When a child has this treatment, they need to stay in hospital for a few days in a room with their parents and then they have another anaesthetic to take the plaque out again.
Chemotherapy
- This is strong cancer-fighting medicine, which is given to children through a special tube called a Hickman line or Wiggly. The Hickman line goes into their chest and they need to have medicine through the tube several times, so it is left in for a few weeks. This medicine is very strong and can make children feel very sick and make their hair fall out, but it helps to destroy the tumours and the child's hair grows back afterwards.
Radiotherapy
- Is another way of stopping the tumours, this is when the doctors use a special machine which uses invisible rays to destroy the sick cells in the eye. The rays are very strong and can sometimes affect the bones growing around the eye so the socket at the side of the eye might look a bit different when the child grows up.
The doctors use some or all of these special treatments to help save the eye and to make sure the tumour does not grow anymore. All the treatments make the child with Rb better.
If you had Retinoblastoma when you were little you probably had one or more of these treatments. If you have any questions about them, please ask your parents or an adult who is close to you to help you to understand.
Artificial eyes and surgery
When the lumps in the eye have grown too big and the eye has to be taken out(enucleated), a conformer (plastic shell) is fitted for a few weeks until the inside of the socket gets better. When the socket is better the child can go and have an artificial eye fitted. Some children call their artificial eye, their special eye or their pretend eye.
Ever wondered what the inside of your eye looks like? Well, it's pink, just like the inside of your lip. Nothing nasty to see at all!
During the operation to remove the eye the doctor puts a special ball called an implant behind the muscle in the eye socket and the artificial eye is put over that.
The artificial eye is made of something called acrylic (a sort of plastic) and is white and shiny. The iris (coloured circle) comes in many, many different colours, just like real eyes and is hand painted to match the other eye.
As the child grows bigger and the other eye changes colour or size, a new artificial eye is made by taking a special moulding of the socket. The artificial eye needs to be polished on a special machine every few months.
Sometimes the artificial eye can get sticky and infected. It is particularly bad if you have a cold or the weather is windy. It is easily cleaned with damp cotton wool. If it gets infected, there are special drops which the doctor can give to make it better. As the child grows up, this becomes less of a problem.
The artificial eye needs to be taken out and washed but how often varies from person to person. When the child is little their mum or dad will help them to take out their special eye to clean it, but when they get older they will learn how to do this on their own.
Below are some pictures of artificial eyes.
When the cancer cells stop growing or are taken away, it is called being in remission. However, all children who have had cancer will still need to go to see the cancer doctor and the eye doctor to make sure they stay well.
It is important for all children to eat healthily and to cover up in the sun, but your mum or dad has probably told you that it is very important for you to take care of yourself as you had cancer. You shouldn't smoke when you are older either.
It is also important to tell someone if you notice changes in your eyesight, and if any new lumps or bumps appear anywhere on your body. You will need to go and see the doctor about these things.
The most importantly thing is to make sure you have as much fun as possible to make up for all the time you had to spend in hospital! |
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