Adolescent and Young Adults
A diagnosis and treatment for cancer as a young person presents unique challenges to you and the people around you. Your parents, grandparents, siblings and peers will respond in different ways. We hope that some of the frequently asked questions can help you to get the support and information you need.
- Why is a cancer diagnosis for a young person so different?
- What services and support are available for young people with cancer in Western Australia?
- Is there recommended web-information and support available for young people with cancer?
- General Sites for young people
- Sites for younger people & children
- Sites for young adults
- Sites for family & friends
Why is a cancer diagnosis for a young person so different?
As a young adult you may be developing your independence and want an active part in making decisions about your health and treatment, however a cancer diagnosis is a time when it can be helpful to have support from an older adult who can assist you to understand the consequences of decisions that you make.
The priorities and focus in your life may include things that are hard to juggle while going through treatment, like developing a social life and keeping up with friends, exploring your sexuality, big events like exams, school balls, birthday celebrations and going travelling. It can be hard to know how to keep things as normal as possible and hard for those around you to know just how to help and support you best.
What services and support are available for young people with cancer in Western Australia?
The services and support available to most cancer patients is often less familiar with the needs and priorities of young people. There is now a growing range of services and information specifically for young people with cancer.
In Western Australia there is a nurse who specialises in coordinating care for adolescents and young adults and supporting them and the people around them. This is a free state-wide service that can provide you or your family with support and information. They can also link you with appropriate services for your age group. This link will take you to the WA Cancer and Palliative Network website, where you can find information on this service and contact details.
Is there recommended web-information and support available for young people with cancer?
There is also a lot of valuable information from around the world that you can find on the internet, but it is important to know which websites are reliable and reputable. Below are some sites that adolescents, young adults and their loved ones have told us is useful.
General Sites for Young People
- Canteen provides support services and programs for young people aged 12-24 affected by cancer. Offers meetings, camps, education seminars and outings for young people living with cancer; this includes patients, siblings and offspring.
- National Cancer Institute – Adolescents and Young Adults with Cancer page (US site that includes wide range of disease and age specific information on diagnoses, treatment, prevention, clinical trials and survivorship)
Sites for Younger People & Children
- Make A Wish Foundation of Australia. Grants wishes to children under 18 years who have a life-threatening illness according to the foundation's medical criteria.
- Ronald McDonald House in Perth provides accommodation for families of children suffering from cancer-related diseases and other life-threatening illnesses, who are receiving treatment at the Princess Margaret Hospital.
- Starlight Foundation. Grants wishes to chronically and terminally ill children.
- Very Special Kids House. Provides support to families who have children with a progressive life-threatening illness, including respite and palliative care, and to bereaved families.
- Camp Quality. Provides camping and recreation opportunities for children with cancer (birth through to 18 years).
- Children's Leukaemia and Cancer Research Foundation. Inspired by 9-year-old Jennifer Harper, diagnosed with leukaemia in 1977. When her father, Peter Harper, discovered there was no research into children's leukaemia being done in WA, he set out to raise funds for this purpose.
- Kids Helpline. A free, confidential telephone, email and web counselling service for 5-18 year olds.
- Group Loop. An online community for teens with cancer and their parents offering support, education and hope while dealing with a cancer diagnosis.
Sites for Young Adults
- Teenage Cancer Trust: Focuses on the needs of teenagers and young adults with cancer by providing dedicated teenage units in local hospitals in the UK. (UK website aimed at adolescents & young adults).
- Livestrong: Founded by cyclist Lance Armstrong after his own cancer experience. It has a special “Young Adult Alliance” dedicated to the issue of young adults living with cancer. Click on “Grants and Programs” and then on “Young Adult Alliance.” The Livestrong website also provides access to the Podcast Series for young adults with cancer. (US website aimed at all ages).
- Vital Options: One of the first organisations to support young adults with cancer. Click on the “Young Adults” link. (US website aimed at young adults)
- Look Good...Feel Better: This national program helps men and women living with cancer to improve their appearances and self-esteem by teaching beauty techniques to camouflage the appearance-related side effects of cancer treatment. For more information about workshops go to the Cancer Council Look Good ...Feel Better page within this website. (Australian website aimed at all ages)
- Fertile Hope: a national (USA), nonprofit organisation dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility. The website has a ‘Fertility Options Calculator’ which can help you better decide which family building options are right for you- before, during or after cancer treatment. Please note: This is an American website which may contain information not relevant in the WA context. . (US website aimed at all ages)
- I’m Too Young For This: A site that is dedicated to connecting adolescents and young adults with cancer with trusted and credible survivorship information and support services. (US website aimed at young adults)
- The Warwick Foundation: The first and only Non-profit organisation in Australia focusing on supporting young adults (18-40 years) on their cancer journey. The website has a “mates in my shoes” program which is aimed at helping you find a mate you can talk to who is your age with similar interests and coping with the same disease. (Australian website aimed at young adults)
- OnTrac@PeterMac: The Victorian Adolescent & Young Adult Cancer Service at Australia’s only dedicated cancer hospital, the Peter MacCallum Cancer Centre. This website contains information on fertility, sexuality, depression and other areas that you may find helpful. (Australian website aimed at adolescents and young adults)
- Planet Cancer: A community of young adults with cancer which provides as much laughter as it does information. (US website aimed at young adults).
- Prepare To Live: Aims to be a source of help, hope, information and inspiration for young adult patients, survivors and care-givers dealing with cancer worldwide. (US website aimed at young adults).
- Real Time Cancer: A place where young adults dealing with cancer can connect through a web-based peer support community. It focuses on facing cancer with a positive attitude. (Canadian website aimed at 15-30 yr olds).
- Leukaemia Foundation. Revive is a Adolescent and Young Adults specific website and online forum that provides support and information for young people with a blood cancer diagnosis
Sites for Family & Friends
- The Sydney Children’s Hospital and its Centre for Children’s Cancer and Blood Disorders. Click on the link (on the left side) called “Coping with Cancer”. Contains information on topics including:
* Accepting the diagnosis
* What to tell your child
* Effect on family & friends
* Helpful hints
* Financial assistance
* Coping with painful procedures
* Supporting brothers & sisters
* A mother's perspective
* A father's perspective
* A teenager's perspective
* A brother's perspective
* A grandparent's perspective
* A family's experience
- For Friends. This fact sheet was put together by young people with cancer at CanTeen (an Australian support organisation created by young cancer patients for young people living with cancer). It is a “Tip sheet” for friends to help you with what to say and do. (Australian website aimed at 12-24 yr olds)
- How Friends and Family Can Help: This page is on the Australian Hodgkin’s Lymphoma Network website, but the information is relevant for friends of people with any type of cancer. Topics covered include:
* General ways to help people with cancer
* Specific ways to support a loved one with cancer
* Emotional help
* Practical help
* Things that won’t help
* What to say
* Gift ideas
(Australian website aimed at all ages)
- Reach Out: A great Australian website that exists to inspire young people to help themselves through tough times. The aim of Reach Out is to improve young people’s mental health and well being by building skills and providing information, support and referrals in a format that appeals to young people. It features the following key areas:
* Sorting stuff out: providing information on a range of mental health issues;
* Finding Help: providing guidance on where to find help in the community;
* Chilling Out: sharing personal stories from other young people and role models who have been able to get through tough times;
* Reach Out Community Forums: a place to get support and understanding from peers facing similar issues;
* Reach Out Central: (www.reachoutcentral.com.au) an interactive game designed to help young people develop skills such as problem solving, coping, communication and optimism.
Some of the information on the website you might find helpful:
Helping a friend with a chronic illness
Supporting a Friend with a Life Threatening Illness
Looking After Yourself When a Friend has a Life Threatening Illness
- Young Cancer Spouses: The needs of young spouses (partners) of cancer patients often go unrecognised and unappreciated. The emotional and logistical issues a young partner of a cancer patient faces are vastly different from partners of older cancer patients that dominate oncology units and support groups.
Young Cancer Spouses seek to provide a source of practical information gained from their experience as young cancer partners. They also strive to bring together other young cancer partners to share ideas, lend support, and validate their wide range of feelings and emotions so they can find comfort in an understanding community.
This is an American website, so some of the information may not be relevant, but it provides information specifically for partners of young adults with cancer. It covers areas like:
* Taking care of yourself
* Medical care
* Effects of caregiving
* Doctors & appointments
* Emotional support
* Practical caregiving tips
* Diet & exercise
* Effects of treatments
* Asking & accepting help
* Personal experiences
For further information or support please contact Cancer Council Helpline 13 11 20.
