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
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.
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. Please contact Cancer Council 13 11 20 where you can find information on this service and access contact details.
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 are useful.
- Canteen provides support services and programs for young people aged 12-24 affected by cancer. Offers counselling, meetings, camps, education seminars, online forums 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)
- 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 from regional WA, 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.
- 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.
- Redkite is an Australian cancer charity providing essential support to children and young people (0-24 years) with cancer, and the family and supoort network that support them.
- Now What: Now What has been developed by a team of people including CanTeen staff and young people whose lives have been affected by cancer.
- Life now Exercise for adolescents and young adults. Cancer Council WA and Youth Cancer service offer a free 12 week programme for 15 - 27 year olds who have finished their treatment within the last two years.
- 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)
- IVF Australia: Here a selection of helpful fertility information booklets can be found and options around fertility preservation discussed. Contact Cancer Council 13 11 20 for local services available.
- Leukaemia Foundation: information for young adults with a blood cancer.
- 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. (U.S. 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. (U.S.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).
- 13thirty Cancer Connect: An online discussion board and cancer information service for Teens Living With Cancer.(U.S. website aimed at young adults)
- Stupid Cancer: A site that is dedicated to connecting adolescents and young adults with cancer with trusted and credible survivorship information. (U.S. website aimed at young adults)
- The Sydney Children’s Hospital and its Centre for Children’s Cancer and Blood Disorders provides coping information for several topics including:
* Initial diagnosis
* Accepting the diagnosis
* What to tell your child
* Effects on parents, extended family and friends
* Helpful hints for parents
* Practical and financial assistance
* Coping with painful procedures
- For Friends: This booklet from Canteen provides information, practical tips, support and advice across a whole range of areas that impact on a young person who has someone in their family affected by cancer. It is written specifically for friends to help them know what to say and do to provide support to another young person who is going though an extremly difficult time.
- 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.
Some of the information on the website you might find helpful:
- Young Cancer Spouses: (Stupid Cancer website)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 13 11 20.