Retinoblastoma and me: age 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.
What is Rb or retinoblastoma?
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.
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 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 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 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 it may be higher. This is because some people have a type of Rb 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 they have more chance of developing a cancer. Not everyone who has someone in their family with Rb is at risk, or will get Rb themselves. Special genetics blood tests have to be done to find this out.
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.
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 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 is a type of medicine. It is different to the type of medicine that your mum or dad 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) or Melphalan (IAM)
Intra-arterial Melphalan is a special type of chemotherapy. It is a different type of chemotherapy medicine because this one is given one or two times and you will have the medicine 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.
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.
Radiotherapy is a way to help your eye feel better. You will need to have an anaesthetic and the doctor will use a very special machine which has invisible rays of medicine that go into your eye to help make your poorly eye better.
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.
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 talk and share your experiences.
The closest people you might like to talk to about how 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 the treatment has made you feel about yourself then people you can talk to are the clinical nurse specialist, the play specialist at the hospital or the Childhood Eye Cancer Trust support worker.
You can talk with people who had Rb at our Members’ Days. You can ask a support worker to link you with someone else who might feel the same.
There are lots of different ways the doctors can help make you better when you have Rb. Ask your mum or dad what is happening or has happened to you so you can read about your treatment.
Some children’s eyes don’t work very well after treatment or they may have a magic/special eye now.
When you first started school or came back to school after treatment your mum or dad will probably have spoken to your teacher about how they can help you in class and how to find the best seat for you if you can’t see well out of one or both of your eyes.
You might need to wear special glasses for when you do PE so that you protect your eyes. If you are starting middle or secondary school and are nervous about changing school, tell your parents how you feel. It might be possible to put you in a class with one of your friends at your new school to make you feel a bit better.
At school your friends may ask you about your magic/special eye. What would you like to tell them about it? Talk to mum or dad about what you would like to say and what you are happy for your friends to know.
You don’t have to tell them anything – it can be your secret, but sometimes it is good to know what to say if anyone asks. Here are some suggestions from other children who have a magic/special eye which you might like to try out.
- I have two eyes, but can only see with one.
- I have a magic/special eye that doesn’t see.
- I have two eyes but only one that moves.
At school some of your friends might ask about Rb or why you have to go to hospital for check ups. You don’t have to answer any questions they have but it is good to have some answers ready in case people ask you. Here are some ideas:
- I was sick when I was little and I’m better now but I have to see the doctor for check ups sometimes.
- My eye was sick when I was little and I had treatment for it.
- I was sick when I was little but you can’t catch the illness from me, it’s not that sort of illness.
- I fought a serious illness when I was younger and now I’m better.
If you want your class to know about Rb you can ask your mum or dad to talk to them about it, or you might like to do it yourself with your teacher. Sometimes it is easier to have a special time to talk about it with your class and answer their questions with your teacher or parents. Your friends might ask you less questions after this.
Not everyone will want to tell their class though, so you can decide what is best for you.
Mum or dad may find this section useful too: Starting school
I had retinoblastoma in one eye…my right one! It was diagnosed on 30 January 1998, in a hospital in Lisbon. Five days later I went to St Barts in London. The very next day my eye was enucleated (removed) and two days later I was flying back home.
For me it was just another trip with my parents (I was used to travelling by plane as my mum and dad work for an airline). Two weeks later I went back to London to get my prosthesis and to confirm if I needed further treatment. Unfortunately, that was the case… a six month chemotherapy protocol waiting for me in Portugal.
I can’t remember anything about my enucleation surgery. Not even around chemotherapy treatment do I have memories. Maybe the visits to the hospital to check everything was ok, which lasted till I was eight and a half years old, and where I made some friends, but they are all I can remember of the process.
I do remember three moments in particular that happened to me. I was prepared for them as my dad always told me that they could happen, and I always should be proud to be as I was… someone who did fight a cancer and only lost a small part in the battle.
One year after the surgery I went with my dad to a tennis tournament. As I didn’t want to follow the matches, my dad left me in the babysitting facilities.
When playing with other kids (I was four years old) my prosthesis went to a position with a total different direction compared to my left eye. One of the kids asked me what was going on and I told him it was a magic trick I could do. All the kids got excited about that. Somehow I managed to put it back to normal. Everybody asked me to do it again, and the girl looking after us was really puzzled.
I told everybody that a magician NEVER does the same trick twice in front of the same audience. When my father was told about this story he couldn’t believe it, he couldn’t help but laugh and be proud of me!
I was playing in the playground when suddenly my prosthesis fell out. I kept it in my hand, while all the other kids were scared about it (they didn’t know about my eye). After a moment, I just said. “C’mon… be cool, I do this every night, it’s so simple to take an eye out”.
The next day my dad went to school and told all my fellow students about my story, the fight with cancer, the enucleation, all I’ve been through, and with no crying. From that day on I became a kind of little hero. One week later NOBODY was talking about it anymore.
One day in the classroom it happened again. I found myself with my fake eye in my hand. I asked the teacher if I could go to the bathroom.
The teacher was saying (not looking at me) “Miguel, you have to wait for the end of the lesson to go to the toilet”. When finally she faced me, prepared to end the conversation with a “no permission”, she didn’t know how to react!
I knew – go outside and put the eye back in its place and repeat that simple explanation about me: I see the same as you do, with only half of the work (something I told my dad before and he thought was the best way to understand my condition).
My parents always treated me like what I was… a kid like all the others. Having my dad and momma explaining to me that I won such a big battle made me feel special.
Understanding that I could be as good as all the others made me understand I had no excuses, I had to be as good as I knew I could be!
It’s very important to me to read about others’ experiences, to know more and more about everything related to Rb. And I know that my dad really likes to read it as well.