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, 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 is a localised treatment 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 chemotherapy medicine in and it goes through the tube, directly into the eye that needs treatment. It takes about 30 minutes to give the medicine. You may need to have up to two doses of this chemotherapy. Because the chemotherapy is going directly to your eye and not around your whole body, you tend to experience less side effects.

This is another kind of localised treatment where the medicine is injected directly into the front of your eye while you are under anaesthetic. As with IAC there tend not to be less side effects because the chemotherapy is delivered directly to the eye and not to the whole body. The eye may be a little sore afterwards because of the freezing treatment given as part of the procedure.

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.

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.

Although you may no longer be having treatment for Rb, there may still be things that you struggle with or need support around. Our team are here for you. Once active treatment at hospital ends, you will be followed up regularly and seen by your normal Rb team in London or Birmingham. As time passes, they will then discharge you to a late effects clinic nearer home. You will be seen here until you transition to an adult late effects service. How regularly you are seen in late effects will depend on your genetic status and if you have any ongoing issues. Otherwise, you’ll have their details and can contact the team if need be. For more information, see here.

Late effects are symptoms or issues caused by Rb or it’s treatment that present in the weeks, months and years after treatment. Your genetic status and different Rb treatments will often be the predictor of what these late effects may be and what to look out for. You should receive a referral in to a late effects clinic, particularly if you have genetic Rb. If you have worries or concerns about late effects, or want to find out more about your nearest late effects service, contact our support team. For more information on late effects, click here.

Maintaining good health and wellbeing is important and there are many things that we can do to minimise our risk of cancer. These include:
• Be aware of general signs and symptoms of cancer
• Seek medical advice from your GP for any new lumps, unexplained or persistent pain.
• Check your skin regularly and visit your GP if you notice any skin changes – including new lumps, moles, or changes to any existing moles.
• Wear sunscreen and hats, avoid over-exposure to the sun and sunbeds.
• Eat a healthy and balanced diet
• Avoid smoking
• Minimise alcohol consumption
• Exercise regularly
• If you have genetic Rb, you should avoid unnecessary radiation exposure. This includes routine x-rays (including dental) and CT scans. On occasion, these investigations may be necessary for diagnostic purposes but it is important to notify the health professional that unnecessary radiation exposure should be avoided and MRI is preferable if possible and appropriate.

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 retinoblastoma 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 hard 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 Women’s & 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 Retinoblastoma Team: 020 3594 1419

Birmingham Children’s Hospital Retinoblastoma Team: 0121 333 9475

If you want to talk to someone about how retinoblastoma 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 retinoblastoma at our Members’ Days or the TYA WhatsApp group.

It’s important to look after your mental health. Knowing that you have had cancer, or are living with the after effects can have a huge impact on your mental health and emotional wellbeing. There are so many things that can impact on how you feel emotionally, including: school, work, relationships, family, health, self-confidence, hormones, the past, grief, body image, disability, sometimes just day to day life, and sometimes there appears to be no reason at all. It’s normal to have thoughts and worries on your mind that get in the way of you feeling at your best, but it’s important to share these and do things that help manage them. There are so many ways that you can access emotional support and some helpful things that you can do to manage difficult feelings. These include: talking to others about how you feel, writing down how you feel, having fun with friends, being active, and speaking to others who feel the same. Any member of our support team can be on hand when you need to chat but can also provide you with advice on getting extra help from your hospital psychology team, your GP or a counsellor if you are struggling to cope.

Rb and its treatments can affect how you look – some of these changes are temporary and some permanent and it’s important to seek support if you’re struggling with these changes. Accepting that your appearance has changed because of your cancer can be difficult and this may affect your self-confidence or how you feel about your body. People may not understand these feelings because their main concern is that you are healthy and well; but it’s important to still acknowledge that your thoughts and feelings are normal. Whether it be facial changes due to radiotherapy, or an artificial eye as a result of surgery, talking to others who have similar experiences and feelings can be really useful. Our support team can help you navigate these feelings and can also connect you with other teenagers and young adults at CHECT. See Olivia’s story about living with her artificial eye. 

Having positive relationships in every aspect of your life is important – whether it be friends, family, colleagues, or in a partner. Starting new relationships can be exciting but you might find it hard to know how to talk about your Rb. If you worry about meeting new people, remember it is your decision when, what and how you tell a new partner. Some people want to talk about their experiences from the start of a relationship and others prefer to wait until they know someone better. If you decide it is the right time to talk to your partner, think about what you want them to understand. For example, what are the most important things for you? Think about how much you want to share. You may only want to tell your partner the type of cancer or some things about your treatment? You might want to talk only about the things that affect you now? Whatever you decide, is the right thing for you, and our support team are here to help you or your partner too.

Visual impairment can be a direct result of Rb treatment. Some people may be sight impaired, and others severely sight impaired. The clinical teams at hospital will provide support and guidance around visual impairment but we’re here too, and can support through any issues that you may be dealing with. We can also link you in with other sight support charities who can advise on equipment and adaptions to make life easier – at home, in education or at work. Contact our team to find out more and see further information in the Useful Links section of the website.

Although many people can offer really beneficial support to you, it may be helpful to you to speak to someone who has had the same or a similar experience to you. We can connect you with other young people affected by Rb at CHECT, or those affected by other cancers through other charities. You can access groups, events, or even holidays. Our teen and young adult group is full of friendly young people for you to get to know across our WhatsApp group, social media channels, online meets or face to face CHECT Support events. Speak to our support team if you want to find out more.

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 retinoblastoma, or if there are any organisations which could support 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.

If your vision has been affected by retinoblastoma or treatment it’s best to tell the school, college, university or employer as they must make reasonable adjustments for anyone with a disability.

Rb may affect other areas of your life, including education and work, Positive experiences in education and work are an important part of building your self-confidence, establishing friendships and growing as a young person. Notifying school, college, university or work about the cancer and any late effects is important, and you, or your parent/guardian should get in contact with them to talk this through. This will allow them to be more aware of your needs, or of any adaptions that they need to make to support you well. Get in touch with our support team if you need guidance around these conversations or to find out about other charities, like Young Lives vs Cancer that may be able to help.

If you’re struggling to secure work, there are a number of services and charities out there that are able to help. Your local Jobcentre, and charities like the RNIB and Thomas Pocklington Trust support people who are visually impaired in securing education and employment – see the “Useful Links” section of our website for more information.

If you would like to get a job, change jobs or do a course, you could speak to a careers adviser. There are different career advisers depending on where you live in the UK:
• In England, if you are aged 13 or over, you can call the National Careers Service helpline for young people on 0800 100 900. You can also chat with their advisers online.
• In Scotland, contact Skills Development Scotland by calling 0800 917 8000 or visit them online.
• In Wales, contact Careers Wales by calling 0800 028 4844, or chat with their advisers online.
• In Northern Ireland, contact the Careers Service NI on 0300 200 7820 or visit them online.

Most monocular-sighted people can hold an ordinary licence if they’re still able to meet the standards of vision for driving, although they will need to inform the DVLA and their insurance company of their condition. Be aware that you can be fined up to £1,000 if you don’t tell the DVLA about a medical condition that affects your driving. You may be prosecuted if you’re involved in an accident as a result. Consult your eye specialist if you have any doubt about whether your vision meets the requirements. If you have a health condition or vision impairment in your sighted eye, please check the rules for that condition with the DVLA.