Survivorship Position Statement

Surviving cancer is not enough

Children's Cancer CoLab and more than 20 leading Australian organisations across health, research and advocacy are calling for greater awareness, effort and investment for the youngest cancer survivors.

Surviving cancer is only the beginning‍

Every year, about 1,000 Australian children and adolescents are diagnosed with cancer. Survival rates have improved over the past few decades, but the true burden of survivorship remains mostly invisible and unmet.

“People think once treatment is over, you're done. But nobody tells you about what comes after. The physical limitations, the mental health struggles, the financial burden all continue long after the cancer is gone.”
Colbey Alderson, childhood cancer survivor

The scale of the problem

• Nearly 80% of survivors experience one or more late effects, physical and psychological challenges that emerge during or after treatment ends
• Survivorship challenges can persist for years, decades or a lifetime
• Most families endure work disruptions, financial strain, psychological distress and fragmented care
• 1 in 3 adult survivors of childhood cancer globally are unable to participate in paid employment

The impacts don't stop at treatment

Survivors don't just face late effects. They also confront cascading impacts that reshape their social connections and life prospects.

Some struggle to re-enter education and access care systems. Many experience psychological distress, learning difficulties or cognitive changes. Those living in regional and remote areas face additional barriers to specialised care and support, compounding an already difficult path.

Carers and siblings are also deeply affected. They can experience work disruptions, financial strain and emotional toll that can last for years.

A fragmented care system

Our assessment of the current system for survivorship care is that it is inadequate and fragmented. For survivors and their families, they can experience:

• Psychological distress, trauma and mental health challenges
• Social isolation and strained relationships
• Disrupted education and school pathways
• Reduced employability and socio-economic opportunities
• Ongoing and compounding health issues
• Financial strain and uncertainty
• Sustained pressure on family and community support networks, with cascading emotional burden on siblings and carers

Without comprehensive support, these impacts can intensify, deepening inequities, limiting future opportunities, eroding emotional wellbeing, and placing increasing demands on healthcare and community systems.

A critical gap in Australia is the lack of comprehensive, coordinated follow-up care that begins when active cancer therapy ends and continues throughout survivors' lives.

We can and must do better

Some effects from cancer and treatment are not reversible. But with best practice survivorship care and support, the outcomes for young people and their families could be greatly improved.

Best practice care:

• Enables survivors to manage and anticipate late effects
• Reduces disability and premature deaths
• Facilitates re-entry to education and employment
• Supports psychological wellbeing and social connection
• Strengthens family stability and financial security
• Empowers survivors and families as active partners in their care

What we're calling for

We advocate the following principles to achieve best-practice care.

Whole-person, whole-family support

Holistic, person-centred care that is respectful and responsive to each survivor and family's unique circumstances, needs and culture.

Long-term, proactive care coordination

A coordinated team working together to provide timely support for survivors' medical, psychological, educational, vocational, social and financial needs throughout the survivorship continuum — from hospital to home and community, across transitions to adult care.

Co-developed, evidence-informed care plans

Survivors, carers and doctors working together as equal partners to develop individualised care plans that respond to each survivor and family's unique needs and priorities.

Equitable, accessible and sustainable systems

Survivors and families receive tailored support at the right time, with services designed and delivered that are cost-effective, inclusive, accessible, and standard care for all.