Coming off treatment, and survivorship
When treatment ends, patients and families may feel excited about the future.
Coming off treatment is often an anticipated and celebrated milestone. However, it may be surprising to discover mixed feelings about what comes next. As a survivor of childhood cancer, you are now entering the next phase of your journey: survivorship.
We have developed resources to support childhood cancer survivors, their parents and carers, and others around them such as teachers and GPs, to identify, better understand and address the additional health, wellbeing, social and academic challenges that children and adolescents may experience in the years following treatment for cancer.
We deliver the state-wide program that helps children and adolescent survivors of cancer to monitor and manage the potential long-term impacts of their cancer diagnosis and treatment, and stay healthy in the years that follow.
We also partner with health services and researchers to improve the available support and information for families once treatment ends, and to strengthen research and health service improvements with the aim of improving the quality of life for, and treatments available to, future paediatric cancer patients.
“We lived in a sort of bubble – The return to normality takes a long time”
– Parent of a childhood cancer survivor
PICS resources – coming off treatment, and as a childhood cancer survivor
Our resources to support you during the coming off treatment and survivorship phases include topics such as:
- what to expect next – adjusting to the new ‘normal’
- understanding and navigating the potential impact on a child or young person’s development, such as education and social skills
- the potential ‘late-effects’ of having cancer, and the associated treatments.
These resources have been developed in a variety of formats, such as factsheets, videos, and handbooks.
Below are some highlighted PICS resources and topics. You can access the full range in our resources library.
Coming off treatment, and what to expect
Health after treatment
A different learning curve - navigating the potential impacts on a child's development
The Long Term Follow-up Program
Some cancer treatments can cause other health issues, which might not show up until years later. PICS runs the Long Term Follow-up Program (LTFP) to help children and adolescents monitor and manage their health in the years following cancer treatment. The program provides multidisciplinary clinics tailored to individual needs, and helps in the transition to adult focused community and/or hospital services.
LotusLab
The end of childhood cancer treatment can be a challenging new phase for patients and families. Traditionally, there is not much contact with or support provided to families during this time, until their first appointment with the PICS Long Term Follow-up Program – potentially years later.
In partnership with Murdoch Children’s Research Institute (MCRI), PICS is developing a mobile app called LotusLab to bridge this gap and help families feel more informed and supported about life and living healthily after treatment. We have worked with childhood cancer survivors and their families to ensure content in the app meets the needs of users.
LotusLab will include:
- a range of post-treatment topics to help patients and families understand what to expect in this next stage of their cancer journey
- informative videos with childhood cancer survivors, their families, and health professionals
- useful links for further information and support
- personal documents like a treatment summary and surveillance roadmap.
LotusLab will also provide up-to-date information on supportive care and survivorship clinical trials, and can help to identify which trials families might be interested in.
Read more about the project to develop the app, in the projects library.
The Victorian Childhood Cancer Outcomes Registry (VCCOR)
The VCCOR is a database that will provide a clearer and more complete picture of paediatric cancer care in Victoria by bringing together data that is already routinely collected.
It is designed to support research and statewide service improvement, with the potential to improve the quality of life and treatments available to future paediatric cancer patients.
I’ve finished treatment – What else can I do to have a healthy life?
There is no one-size-fits-all answer to what ‘healthy’ looks like after childhood cancer treatment. Our resources and other supports can help guide you, but being actively involved in your own health and wellbeing care every day is the best way to make sure you stay healthy:
- Learn about your diagnosis, treatment and any potential long-term health risks.
- Lead a healthy lifestyle: Eat a balanced diet, exercise regularly, maintain oral health and be sun smart. Keep in touch with your GP.
- Take control and responsibility for your future healthcare by engaging with your healthcare provider in your consultations and know when your medical appointments are.
- Support your wellbeing through friendships, interests, and self-care.
If you’re worried about anything medical, contact your healthcare provider.
External websites and supports
Whether you are wanting to learn more about potential late effects, the different supports and services available after treatment, or additional guidance when transitioning out of paediatric services, check out our list of external websites and supports across the treatment phases.
