Retinoblastoma and me: age 12-18
This area of the website has been written for anyone aged between 12 and 18 who had retinoblastoma (Rb) when they were younger. You might want to learn about the treatments you were given so we’ve included these below.
If you have any questions you can’t find the answer to here, please contact one of our support workers who will be happy to help.
What is Rb or retinoblastoma?
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 the 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.
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 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 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 Rb will get it themselves. Special genetic blood tests are 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.
At the 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 your CHECT support worker if you want a copy.
You may be interested to know more about the treatment you had as a young child. This section gives you information about all the treatments which are used for Rb now.
Cryotherapy works by making the eye really cold. The doctors will put an instrument that looks like a pen on your eye which freezes the tumour to stop it from growing. You might have to have this done up to three times depending on what the doctor advises.
This will be done while you are under anaesthetic and your eye might be a bit sore when you wake up, but if it is you can take some medicine. The doctor will also give you cream to take home which you will need to put on the eye that had the cryotherapy for about five days or as long as prescribed.
Laser therapy is a treatment that involves an infrared beam, which is directed onto the surface of the tumour to destroy it. It is done under general anaesthetic and the doctor will direct the infrared beam directly to the tumour through the pupil.
This can sometimes be combined with chemotherapy. If this is necessary, an infusion of chemotherapy is given and then the laser will be given the same day. Normally laser therapy is given in one or two sessions.
Chemotherapy is a type of medicine that is commonly used as a cancer treatment. For retinoblastoma you will usually need to have about four to six cycles of chemotherapy.
In order to get it you will need to have a special tube inserted inside your chest; which is called a Hickman line or port. The chemotherapy will then be given through this tube and will take about six to eight hours each cycle.
The Hickman line or port will stay in your chest until you have finished all of your cycles. Chemotherapy not only kills the bad cancer cells but some of the good cells as well which means that it can make you feel a bit tired, sick and sometimes your hair can fall out. Once you have finished all of the chemotherapy your hair will grow back.
Intra-arterial chemotherapy (IAC) or Melphalan (IAM)
Intra-arterial Melphalan is a specific chemotherapy drug that is given under general anaesthetic. A catheter (which looks like a long straw or tube) is fed all the way up through the inside of your leg and all the way to your eye.
The doctor will then put the Melephalan chemotherapy medicine in and it goes through the tube, directly into the eye that needs treatment. It takes about 30 minutes to give the Melphalan. You may need to have up to two doses of this chemotherapy.
Enucleation means the removal of an eye. This is done when the tumour(s) are so large that no other treatment can be used. An enucleation is done under anaesthetic and takes about two hours.
When you wake up you will have a conformer in your eye which is a temporary eye that looks like a large contact lens but resembles an eye. You will need to keep this in for about six weeks until you are able to get an artificial eye.
Radiotherapy is a treatment that can be given to the whole eye. It is done by using high-energy invisible rays from a machine – these rays destroy cancer cells. This treatment is usually given every day, five days a week, for four weeks, but this can change depending on what the doctor suggests.
Plaques are small radioactive discs that are stitched to the outer surface of the back of the eye, this is done under general anaesthetic.
Each plaque has a time limit that it needs to stay on for in order to give the correct amount of medicine. While the plaque is in place, you will need to stay in isolation at the hospital and wear a patch over your eye. The doctors will take the plaque out under general 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. This can sometimes be difficult for parents to talk about though as it may bring back memories of a difficult time.
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 you can contact the team and be seen sooner at clinic.
If you contact the Rb Team the best person to talk to in the beginning is the clinical nurse specialist.
Royal London Hospital Rb Team: 020 3594 1419
Birmingham Children’s Hospital Rb Team: 0121 333 9462
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 a CHECT support worker.
You can talk with people who had Rb at our Members’ Days. You can also ask a support worker to link you with someone else who might feel the same or you can talk to people on our Facebook page.
School, college and work
Starting a new school, college or university or going into the world of work can be a big step for any of us. You may be very excited about the new challenges ahead. You may also be wondering if there are any extra things you need to think about because of Rb, or if there are any organisations which could support you.
Some of the issues that we talk about in the schools sections for younger children may still apply to you. Before you start somewhere new think about how you would answer questions you may be asked by other students or colleagues about the condition and perhaps the way treatment has affected your vision or the way you look.
You can answer any questions you want or choose not to say anything if you prefer, it’s up to you.
If your vision has been affected by Rb or treatment it’s best to tell the school, college, university or employer as they must make reasonable adjustments for anyone with a disability.
Hi, I’m Lottie. As you can (hopefully!) see, I’m your average teenage girl, if not more into make-up, boys and partying than my friends! I was diagnosed with retinoblastoma in my left eye when I was one and had my eye removed on my 2nd birthday – great birthday huh?
I’d like to tell you that living with an artificial eye is easy… but I’m not one to sugar coat things so I’m afraid I can’t. Growing up, I was constantly stared at, pointed at and even heard nasty comments behind my back.
I used to let this get me down but gradually I realised that these things are down to people’s curiousness as opposed to maliciousness. Thinking about it, even now, if I see someone with an imperfection, I look at them for a little longer than everyone else in the crowd, finding my mouth hanging open and, unattractively, “catching flies”.
I sometimes wish that I had something else missing – my little toe perhaps? As then no one would know I was any different. Recently however, I’ve learned that my eye makes me who I am. Although, yes, it is part of my physical being, the journey I have been on in coming to terms with it has made me the person I am today, and to be honest, I’m really not that bad!
I’ve never let my eye get in the way of school. Never have I not been able to get stuck in with my classmates thanks to my eye. In my opinion, attracting more attention to it yourself makes you an easy target for intrigued children’s questioning, something most of us would rather not have to put up with.
At school, I achieved highly in my GCSEs, and am now at sixth form studying law, English literature, French and performing arts. I hope to achieve highly in these subjects and go on to pursue a degree in journalism at university. I would never let my eye stop me from reaching these goals. In fact, I don’t think my mum would let me!
Some people think that living with an artificial eye would affect your day-to-day life but they couldn’t be more wrong. As soon as I was 17 I was eager to learn to drive and certainly wasn’t willing to let anything stop me! Now I drive to sixth form each day and enjoy the sense of freedom driving brings, as well as being able to get to the local drive-thru whenever I fancy!
I have had various different part-time jobs also, working in retail and catering. I found applying for jobs daunting, and at interviews I always thought people were judging me because of my eye.
However, thanks to my keen interest in performing arts, I now love meeting new people and am not scared to approach strangers – a confidence I found within myself a while ago. Learning this skill, of not caring what others think, is a valuable life lesson for anyone, with or without Rb!
Out of school, I have weekly singing lessons and, having achieved my grade three, I am now working towards grade five, something I am immensely proud of. I have also completed the Duke of Edinburgh Award (only bronze as I’m not a fan of mud) which taught me how to work as a leader and also as part of a group, traits which have helped me through life ever since.
National Bureau for Students with Disabilities – This is an extremely useful website. It has lots of information about education, apprenticeships, training, work, where to get advice and support, and knowing your rights.
Action for Blind People – This is an organisation which can provide career and employment advice to people who are blind or partially sighted.
Teen Focus is an online news site created for, and written by, teenage members of CHECT. It’s a place to read stories from other young people who have been affected by retinoblastoma, and find out the latest news about Rb and the work of CHECT.
If you’d like to contribute an article or blog post to Teen Focus, please email us at firstname.lastname@example.org. We also hold regular work experience opportunities for our teenage members to spend a week in the CHECT office, editing the site. If you want to apply for work experience, please do get in touch.