Adolescents and Young Adults (AYAs) have very specific concerns when they are diagnosed with cancer.
This is a time when you want to meet others and form close relationships. It’s a time when you want to focus on school, careers or starting families.
A cancer diagnosis can interfere with these important parts of life.
My Diagnosis and Treatment
The most common types of childhood cancers include cancers of the blood (leukaemia and lymphoma), solid tumours and bone cancers.
Different things will determine where you have your treatment. Usually, it’s to do with your age, the type of cancer you have and the services that are available near you. You might not always get to choose but you should be able to ask about your options and explore what the alternatives are.
Being diagnosed as a teenager or young adult isn’t the same as getting cancer in later life. Your child will have needs that require specialised knowledge and skills – not only medical but also psychological and educational. It’s vital that we take into account what is going on in their life – like their education, relationships, emotions, and the role family plays in their life.
Because of this, the National Cancer Care Programme (NCCP), of which Childhood Cancer Foundation Ireland is a member, believes that there should be cancer services specifically designed for AYAs.
Childhood Cancer Foundation Ireland, along with Canteen Ireland and and CanCare4Living advocated for such provision and to have children and AYA’s recognised in our national cancer strategy for the first time. We are pleased that the 2017 -2026 National Cancer Strategy has made provisions for these services, which will be aimed at young people between the ages of 16 and 24.
You can read more about our advocacy work here.
Do I have a say in what happens in my treatment plan?
You always have a say. It might not feel like you do, it may feel like decisions are being made for you and in fact, sometimes you won’t have a choice over certain elements, but you are always able to ask questions about your treatment so that you can understand it fully.
You can always say “Sorry, can you explain why things are happening this way.” This will allow you to understand why certain decisions are being made – and if you have a choice, it will help you to determine what the options are and get your views heard.
We would always advise to ask someone to come in with you to your appointments.
What to expect during treatment
- Your whole routine is likely to change during treatment.
- There will be regular hospital appointments, which may involve a lot of travel.
- You may have to stay in hospital overnight for treatment.
- The treatment may make you feel unwell for a time and may cause changes in your appearance.
Everyone reacts differently to treatment, so it’s hard to say how you might feel. Some people might struggle with side effects, while others sail through.
If you’re having problems, always ask the team looking after you for help. And try to remember that, although the side effects of cancer treatment can be tough, most of them are only short-term and will gradually disappear once your treatment is complete.
Losing your hair
Chemo drugs target and kill cancer cells. The drawback is that they are so super keen that they can’t tell the difference between cancer cells and other fast-growing ‘healthy’ cells. This is why it can make your hair fall out.
Your hair can form a big part of your identity. This means losing it and dealing with changes can be very hard, even traumatic. It’s absolutely normal to be more worried about losing your hair than the cancer itself – don’t feel bad if you can relate to this.
There is a ton of support and loads that you and your team can do. Make sure that whatever you choose to do makes you feel empowered and confident.
Energy levels, concentration and nausea
Treatment can be intense and it’s common to feel really tired (or ‘fatigued’ if you want to get technical). The tiredness should ease up when your treatment is finished but you’ll have been through a lot physically and emotionally, so it’s quite normal to feel tired for a while afterwards.
Try to focus on doing what makes you happy and energised and remember to be kind to yourself. If you need to have a Netflix binge, do it.
Heard of ‘chemo brain’? It’s when you feel ‘foggy’ or find it hard to focus on anything for very long. It might mean that studying or work needs to take a backseat for a while, which can feel frustrating. Be kind to yourself.
Chemo is renowned for making people feel nauseous. If you’re vomming a lot – talk to your specialist. They might be able to prescribe anti-sickness drugs to reduce this. Rather than having three meals a day, try eating small meals and snacks – or just whenever you feel like it.
Ginger and peppermint can help. You could try ginger or peppermint tea, sucking on mints, ginger biscuits or ginger ale.
Weight Gain from Treatment
Taking steroids may make you feel hungrier, and you might find it difficult to maintain your former weight. Your appetite will go back to normal once you stop taking the steroids.
You may find that you feel more anxious or emotional while you are taking steroids, and that you feel tired and low for a while after you stop taking them. Keep an eye on how you’re feeling. If you feel like you are struggling to cope or you’re constantly down, tell your consultant and get help.
It may be the drugs, or you might need some extra support for everything you’re dealing with.
Some chemotherapy drugs may temporarily or permanently affect your ability to have children. If your ovaries or testicles are within your radiotherapy treatment area, this also may affect your fertility.
It is important to talk to your specialist about the options available to you before beginning treatment.
You may be able to store eggs or sperm before your treatment begins, to use if you and a partner want to have children later.
Find out more on your fertility option here
Supports and Services for your Emotions and Mental Health
These organisations and communities can support you with all aspects of your emotions and mental health – whether you’re experiencing anxiety, depression or stress, or you just need someone to talk to.
CanTeen Ireland is a registered charity and the nationwide support group for young people between the ages of 12 and 25 years who have, or have had, cancer.
Their aims are to support, empower and develop young people who have, or have had cancer. CanTeen Ireland provides an opportunity for young people who have been affected with cancer to meet up in a relaxed and informal setting and to attend fun activity weekends away together as a group. Membership is free to our 260 members.
Cancer Fund for Children offers families from across the Island of Ireland, whose child has been diagnosed with cancer (aged 0-24), a free therapeutic short break at Daisy Lodge – its state-of-the-art facility in the foothills of the Mourne Mountains in Co. Down.
A therapeutic short break gives families living with a cancer diagnosis the chance to relax and spend quality time together away from the pressures of gruelling cancer treatment and hospital visits. Families find strength from a therapeutic short break with Cancer Fund for Children.
It is not a ‘holiday’ in the traditional sense but an opportunity for families to relax, spend precious time together during or after a cancer treatment and get away from the busy round of medical appointments, the isolation of hospital wards and invasive treatments. Specialist therapeutic support and a range of complementary therapies are available.
There are many organisations in Ireland who provide support, advice and services to families affected by childhood cancer.
We have compiled a list of Nationwide support please click here to learn more about support services near you.
Further and Higher Education
You are a childhood cancer survivor. You have been through so much and it’s now time for you to think about a new stage in your life.
You know that the treatment that saved your life may have longer lasting effects that have made education a little more difficult for you than your peers. You may also have missed a lot of school while you were sick.
If you are looking to go to college, are under 23 years of age and have a disability or diagnosed learning difficulty, you should consider applying for the Disability Access Route to Education (DARE) entry scheme.
Designed to compensate for difficulties posed by studying with a disability, DARE offers successful applicants the opportunity to avail of desired college or university courses that they may not have gotten the points for through the standard application process.
Who can apply for DARE?
In order to be considered for DARE entry, you must have completed the Leaving Certificate (you can apply while in sixth year, at the same time as filling out the CAO), be aged under 23, and have a disability of some kind (physical or mental).
You will need to provide evidence of your disability with your DARE application. You can find out what you will need to submit as evidence on the DARE website.
To learn more about DARE visit accesscollege.ie/dare