Why is my genetics status important?
Genetics is the study of genes and how the information that they contain is passed down from one generation to the next. Knowing if your retinoblastoma is genetic or not is important. It will determine your follow up pathway in to adulthood but will also enable you to make informed decisions if you plan to have a family in the future. People with genetic Rb are also at increased risk of second cancers and it’s important to know the signs and symptoms of these. Our support team can link you in with clinical geneticists that work in the NHS and who will be happy to see you in one of their clinics. For more information on the genetics of retinoblastoma, see here.
After cancer treatment
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 of Rb
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.
How can CHECT support me?
CHECT’s support team are here to support anyone affected by Rb, lifelong. We’re on hand to support our teenagers and young adults (TYA), their families and friends. Support looks different for different people, and needs often change with time. Be it clinical, emotional, practical, or social support, here are a few ways in which we can support you:
• Face to face support at outpatient clinics.
• Ongoing remote support via phone, text, email, social media or video call.
• Links in to our TYA support group.
• Access to our TYA WhatsApp group.
• Invites to our annual face to face TYA support event.
• Invites to our quarterly online TYA support events.
• Links in to clinical teams e.g. CNSs, geneticists and late effects teams.
• Visual impairment support via partner charities.
• Signposting to local support services.
• Employment and education support.
• Access to a range of camps and holiday experiences.
Talking to people about your Rb
Often it can be difficult and overwhelming to talk to people about your Rb. You might also find it difficult to explain your experience due to your young age and lack of memory at the time of treatment. Talking helps, but it’s important to think about who needs to know, so that they can support you properly, but also who you want to know. You may find that you don’t want to talk about your thoughts or feelings, or the cancer and its treatment, and that living normal, day-to-day life is the best way for you to cope. This is ok, but make sure that you have a family member, friend or professional that you can confide in if need be.
Mental health and Rb
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.
Body image and Rb
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.
Relationships and Rb
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 and Rb
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.
Education, work and Rb
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.
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