Having cancer can be a scary experience for anyone, no matter what age, but for young people it can be particularly frightening and can feel isolating.
Hearing you have cancer can be one of the most difficult things that you and your family and friends will ever have to deal with. To help you cope with the challenges you may face, it is important to make the most of the expert help around you.
This section is to help you understand cancer and provide information that can inform and help support you or young people close to you going through cancer.
Teenage and Young Adult cancer awareness video
What is cancer?
Cancer can be difficult to understand. It is a general term given to a large group of diseases that have uncontrolled growth and spread of abnormal cells in the body.
The most common types of cancer diagnosed in children are leukaemia, brain and central nervous system tumours and lymphomas.
The most common cancers in young people aged 16 to 24 years are: lymphomas, carcinomas, germ cell tumours, brain, other CNS and intracranial tumours; malignant melanoma, leukaemias, bone tumours and soft tissue sarcomas.
The most common cancer in young men is germ cell tumours (testicular cancer).
The most common cancer in young women is carcinomas (thyroid, cervix, bowel and ovary).
For more information on these types of cancer, visit the Macmillan Cancer Support website.
Family centred care
Cancer in childhood or adolescence is extremely rare and therefore it is vital that young people are treated with specialist care and understanding. The cancer care and expertise provided within the Trust is not only in treating the cancer, but also in ensuring the young person’s psychosocial and emotional needs are addressed.
The Trust provides support to young people and their families, siblings and partners during and after the young person’s cancer treatment. When a young person has cancer, the focus must be on the needs of the whole family – if loved ones are supported, the young person in turn will be supported. Our staff have expert knowledge and understand the emotional as well as the physical needs of teenagers, young adults and their families who have experienced cancer.
The Adolescent and Young Adult (AYA) Service
The Adolescent and Young Adult (AYA) Cancer Service in Northern Ireland includes a team of professionals who offer care and support to you and your family, to help you to live life to its fullest potential. The service covers the whole of Northern Ireland.
The Adolescent and Young Adult Team has a:
- Lead nurse based in Belfast
- Clinical nurse specialists in your local hospital
- Young person’s social worker
- A community worker
The aims of the service are to:
- Coordinate medical care
- Provide practical, financial and emotional support
- Provide opportunities for you to connect to other young people
- Empower you to be an active voice in your treatment and advocate for you at your request
- Provide information and care
- Offer activities and opportunities to support your time in hospital
- Offer education and employment support
- Promote and educate healthcare professionals on the unique care needs of teenagers and young people with cancer
Tests and treatment
There are many different types of tests you might have to find out if you have cancer. The type of test you need depends on the symptoms you have and the part of the body affected. You might also have tests to monitor your cancer during and after treatment.
Whatever the reason for the test or scan, it can be a scary and difficult time. Finding out more about what a test involves and what it is going to be like on the day can be helpful and hopefully reduce any fears you may have.
You can find out more about tests and scans for cancer on the Cancer Research UK website.
The type of treatment you may receive will be based on a number of factors, including the nature of the cancer and your general health. The three main types of treatment for cancer are:
- surgery involves the removal of the cancer from the affected areas of the body.
- chemotherapy involves the use of drugs to damage cancer cells in the body.
- radiotherapy is the use of radiation on a specific part of the body.
Find out more about the treatments for cancer in young people from the Macmillan Cancer Support website.
The effects of cancer
Cancer and its treatment can have many effects physically, psychologically, financially and socially. The Adolescents and Young Adult Team is here to help you and your family and loved ones cope with these challenges.
During or after treatment, you may worry about whether the cancer and its treatment will affect your relationships, body image. The team can provide you with information and advice about talking to your family, friends and medical team about what is happening to your body and issues affecting your thoughts and feelings.
Psychological and emotional effects of cancer
Cancer can affect you in different ways. You may think that no one understands what you are going through, but there are other young people in a similar situation to you who really do get what you are feeling.
They might be going through exactly what you are – or they may have been through it in the past. Talking to them or reading their personal experiences could help you understand what’s happening to you and help you know you are not alone.
You will find a selection of personal stories from young people across the UK who have or have had cancer on the Teenage Cancer Trust website. You might like to join their informal support network.
The team will provide opportunities throughout the year for you to get together with other young people affected by cancer for support and fun.
Fertility and cancer
Cancer treatment can sometimes lead to infertility (inability to have a child), which can be confusing and difficult to come to terms with as a young person.
If you have concerns about your fertility you should speak to your clinical nurse specialist, doctor or consultant. Visit the Macmillan Cancer Support website or Teenage Cancer Trust website for information on fertility issues and advice and support on the emotional impact of infertility.
Your education and work
One of the biggest worries for a young person with cancer may be the fear of falling behind in school or work, or losing contact with school friends.
It is important to talk to your family, friends and employers or teachers to explain your situation and how you are feeling as they can help to make things as easy and accessible for you during your cancer diagnosis and/or treatment.
Your team can offer you support with education and work. Helpful information and advice are also available through the UK charity Young Lives vs Cancer, which is dedicated to helping young people and their families affected by cancer.
Sometimes it can feel like everyone is speaking a foreign language when you are talking to doctors or consultants or even just looking up information about your cancer. This can make everything seem even more confusing.
Medical terms and words can be hard to understand, so to make it a little easier the Teenage Cancer Trust has put together a glossary for young people to explain what some of them mean.
Cancer myths
Cancer myths have been circulating for years. Sometimes it is hard to know what is myth and what is fact. Many young people now use the web to find out their information and this can make matters worse as there are millions of web pages out there misinforming people about the preventions, cures and causes of cancer.
Research by the Teenage Cancer Trust showed young people worryingly believe toilet seats, being fat, kissing and a trauma to the testicles in boys can all cause cancer.
It is important as a young person to get the true facts about cancer. Get more information about the facts about cancer and debunking the myths from the Teenage Cancer Trust website.
Cancer prevention
Whether someone will get cancer depends on their genes (the DNA our body is made up of), their environment and aspects of their life, many of which they control and can prevent the chance of developing cancer.
Cancer prevention is an important measure for young people to keep their body as healthy as possible.
The five important lifestyles choices to consider in the prevention of cancer are:
- Not smoking
- Keeping a healthy body weight and eating a balanced diet
- Consuming alcohol sensibly
- Keeping active
- Staying safe in the sun
- Avoid tanning beds
Find out more about how to lead a healthy and active life, and prevent cancer, from the Cancer Research UK website.
I think I might have cancer
It can be worrying if you think you have signs and symptoms that could be cancer – symptoms must always be persistent and unexplained to be a concern.
Remember, cancer in young people is very rare and symptoms could also be signs of other, everyday common illnesses. It is always important to visit your GP if you have any concerns.
Know your body and what is normal for you. Keep track of any changes and discuss these with your doctor. These can be:
- An unexplained lump, bump or swelling that remains for a period of weeks
- Unexplained aches and pains that don’t go away – these can be experienced anywhere in or on your body
- Persistent and unexplained sweating or fever
- Significant unintentional weight loss
- Unexplained new limp or leg weakness
- Extreme tiredness. Another way of saying this is ‘chronic fatigue’ (this does not mean struggling to get out of bed on a school/work day, it means absolute exhaustion that does not go away)
- Excessive bleeding, bruising easily or rash of small red spots
- Changes in a mole on the skin – these could be itching, bleeding, change in shape, colour, asymmetry and blurred or jagged edges
- Lots of infections
Find out more about the signs and symptoms of cancer in young people from the Teenage Cancer Trust website.
Peer support opportunities
We recognise that for some young people they may never have met another young person with cancer. We know that cancer can be a lonely or isolating time, and the team provide opportunities throughout the year for young people to come together in groups for fun and support. These groups vary depending on what is required. The Teenage and Young Adult Team will let you know of planned activities or groups you can take part in.
Other professionals you might meet
Your care will be provided by a multidisciplinary team (many people looking after you), all the staff involved are specialists in their field.
Useful resources
Cancer Fund for Children
Lifeline helpline
Macmillan
Young Lives vs. Cancer
Teenage Cancer Trust
Trekstock Cancer Support
Your team can guide you to other information and websites that you may find helpful.