I have been told I have cancer
Hearing you have cancer can be one of the most difficult things you, 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.
The Teenage and Young Adult (TYA) Service
The regional Teenage and Young Adult (TYA) Cancer Service is for young people who have been diagnosed with cancer (aged 14-24 years old). The TYA team of professionals 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 TYA regional team consists of
- TYA Lead Nurse
- TYA Clinical Nurse Specialists (CNS)
- Young Person’s Social Workers
- Young People’s Community Worker
- Administrative support
Regional TYA Service commitments
- To coordinate medical care
- To provide practical, financial and emotional support
- To provide opportunities for you to connect to other TYAs
- To empower you to be an active voice in your treatment and advocate for you at your request
- To provide age appropriate information and care
- To offer activities and opportunities to support your time in hospital
- To offer education and employment support
- To promote and educate healthcare professionals on the unique care needs of TYAs with cancer
TYA professionals you may meet within the Trust
If you are diagnosed with a cancer within the Northern Health and Social Care Trust, you will have access to a range of professionals who will provide you and your family with advice and support. The following gives an overview of the roles of these key professionals.
TYA Clinical Nurse Specialist
(Teenage Cancer Trust)
The clinical nurse specialist (CNS) is experienced in caring for young people with cancer and works with all those involved in your care. They provide expert advice, support, clinical information, and signposting to you and your family in hospital. They will act as your key worker alongside your oncology/haematology CNS and they will be a point of contact throughout your treatment and afterwards to ensure your experience is as problem-free as possible.
Young Person’s Social Worker
(CLIC Sargent)
CLIC Sargent social workers provide practical, emotional, and financial support to help you and your family cope with cancer and its treatment helping you get the most out of life. They are available from when you are diagnosed. They are available to help the whole family deal with the impact of cancer and its treatment. Support will always be tailored to your individual needs and the needs of your family. Where appropriate they will signpost to services that can help you.
All newly diagnosed children, teenagers and young adults are entitled to a Clic Sargent registration grant to help with the initial costs associated with attending hospital.
Ward Support Specialist
(Cancer Fund for Children)
Cancer Fund for Children’s Ward Support Specialists provide a range of activities, engagement, peer interaction and support to 12-24 year olds across N. Ireland whilst in hospital. Recognising that every teenager and young adult has their own unique interests and needs, they will work with you to identify individual, group and peer-support sessions/opportunities that are of benefit and interest to you. They aim to provide space in hospital for you to feel supported, listened to and where you can find some meaning and enjoyment. Where possible they encourage opportunities to meet other teenagers and young adults, understanding the vital role of peer support.
Young People’s Community Worker
(CLIC Sargent)
The CLIC Sargent Young People’s Community Worker provides social, emotional, and practical support with a specific focus on education, employment, and further training. They will help you understand how treatment / long term effects of treatment will impact on your education or career, and discuss what you would like to do afterwards at home. Although you will usually meet the Community Worker towards the end of your treatment, support is available during treatment for advice on education or employment issues.
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 TYA team will let you know of planned activities or groups you can take part in.
Useful websites
- www.cancerfundforchildren.com
- www.lifelinehelpline.info
- www.macmillan.org.uk
- www.clicsargent.org.uk
- www.teenagecancertrust.org
- www.trekstock.com
Your TYA team can guide you to other information and websites that you may find helpful.
Using and Sharing your Information
Your personal data will be managed securely and in a confidential manner, in line with the Data Protection Act 1998. The TYA service members work as part of a bigger Oncology and Haematology multidisciplinary team, therefore they may share information about you with other members of those teams. This will only happen where it is appropriate to do so.
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.
Staff work together to ensure that there is a combined approach to treatment and care ensuring that the best possible outcome is achieved for each teenager or young person.
Your wide range of expert medical and specialist support team includes:
- consultants – a specialist doctor
- surgical oncologists – doctors who use surgery to treat cancer
- radiologists – doctors who specialise in x-ray tests or scans (pictures of the inside of the body)
- medical oncologists – doctors who treat cancer primarily with chemotherapy
- clinical oncologists – doctors who treat cancer with radiotherapy and chemotherapy
- pathologists – doctors who specialise in identifying different types of cells using a microscope
- therapy radiographers – specialists who give radiotherapy and can help and advise you during your radiotherapy
- clinical nurse specialists – nurses with specific expertise in cancer
Other staff you may see
- dietitians – sometimes cancer can affect your diet, or eating habits and /or ability to eat – dieticians provide advice and education regarding your diet and nutritional needs
- occupational therapists – can help you with things that you have to do every day at home, at school or in your leisure time and provide special equipment to make things easier such as toileting, bathing and walking or getting around
- physiotherapists – cancer can sometimes affect your body’s movement –a physiotherapist can provide you with expert help to improve movement and activity through exercise and practice
- speech and language therapists – help you with any problems with your hearing, talking, understanding, breathing and swallowing
- social workers – ensure that you and your family get the support and contacts you and they need. They are there to talk to – and help you overcome any problems or worries you may have
- psychological and counsellor support team – complements the clinical team, offering support to address the needs of children, young people and their families as they deal with a cancer diagnosis