Key Facts:
- Around 20,000 Australians who survived childhood and adolescent cancer require lifelong care, with numbers expected to rise 20% in the next decade
- 80% of childhood cancer survivors experience at least one long-term health problem, with mortality rates up to 10 times higher than their peers
- Current survivorship care is fragmented and inadequately funded, with support often ending when patients leave the paediatric system
- More than 20 national organisations have united to demand comprehensive, whole-person care plans and sustainable support systems for survivors
National health, research and advocacy organisations have united to demand lifelong care for childhood and adolescent cancer survivors, warning that around 20,000 Australians are being failed by a fragmented system.
More children and adolescents are surviving cancer in Australia, but for many, it's the start of a lifetime of treatment-related health issues that may not be fully addressed.
Children's Cancer CoLab is leading a national push to boost awareness of this hidden health crisis and ensure that survivors receive the ongoing physical and emotional support they need to thrive.
Around 20,000 Australians live with the lifelong consequences of childhood and adolescent cancer, with this number expected to grow by up to 20 per cent over the next decade. Yet dedicated survivorship funding is fragmented and inadequately documented.
The nationally endorsed* Childhood and Adolescent Cancer Survivorship Position Statement, Surviving Cancer Is Not Enough, argues that survivorship must be a core part of every cancer plan, roadmap and research agenda.
Eight in 10 childhood and adolescent survivors experience at least one long-term health problem. Their mortality rates are up to 10 times higher than their peers, even decades post-treatment and globally only two-thirds achieve paid employment.
Chronic physical conditions can include heart disease, secondary cancers, neurocognitive and learning difficulties, mental health issues and illness, poorer social and emotional wellbeing, growth and developmental disorders and fertility impairment.
Children's Cancer CoLab Chief Executive Officer Dr Udani Reets said survivorship was often overlooked and lost in the 'survived cancer' narrative. She said more resources were needed to ensure adequate long-term care.
"Survivors do receive a survivorship care plan outlining their needs following treatment, to be used by future health care providers," Dr Reets said. "However, these plans are often confined to a clinical perspective and don't consider all facets of a survivor's life.
"We need holistic care plans linked to funded services for the survivor, their family and carers, who also face challenges such as juggling ongoing care with work, and financial stress. You can have the best care plan, global guidelines or national frameworks, but if patients can't access the support they need, it leaves them distressed and lost."
The position statement advocates for whole-person, whole-family support, long-term, proactive care coordination, co-developed, evidence-informed care plans and equitable, accessible and sustainable systems and resources.
CoLab Board Chair, Professor Brendan Murphy AC, said coordinated physical and emotional care for childhood and adolescent cancer survivors should be a national health priority.
"We need to recognise survivorship as a lifelong issue," Professor Murphy said. "Long-term physical and psychological needs must be addressed in every cancer survivor's health plan, which is not happening for enough children and young adults after treatment.
"Survivors often face multiple health and societal challenges, which require coordination across a complex health system. Unfortunately, the long-term support that survivors need often ends when they are too old for the paediatric system.
"This issue can't be solved by one organisation, so we have united with charities, hospitals, healthcare organisations, patient advocacy groups and professional bodies across Australia to highlight the urgent need for action. Childhood and adolescent cancer survivors deserve better."
*At time of publication, the Position Statement is supported by Children's Cancer CoLab, Children's Cancer Foundation, Redkite, Leukaemia Foundation, Canteen, Koala Kids, Cancer Council Queensland, Neuroblastoma Australia, QUT Centre for Healthcare Transformation, Peter MacCallum Cancer Centre, Maddie Riewoldt's Vision, Ronald McDonald House Charities Vic & Tas, Abbey Solo Foundation, The WA Comprehensive Kids Cancer Centre, The Kids Research Institute Australia, Clinical Oncology Society of Australia, Kids with Cancer Foundation, Child Cancer Research Foundation, Kids Cancer Support Group, Australian Cancer Survivorship Centre, and The Royal Children's Hospital.
Colbey's story
When he was 10, excruciating pain in his right arm led to a devastating diagnosis for Colbey Alderson: Ewing sarcoma, a rare bone cancer. After 15 rounds of intensive chemotherapy, Colbey went into remission on his 11th birthday, but this wasn't the end of his cancer journey. "People think once treatment is over, you're done," he says. "You beat it. 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, now 23, has cycled through six psychologists and psychiatrists, searching for someone to help him process the unique trauma of childhood cancer. Only recently has his psychiatrist suggested he is finally ready to move forward from his cancer-related mental health challenges.
The physical impacts of Colbey's cancer and treatment refuse to fade. He has limited mobility in his arm that was riddled with cancer, and he takes longer to recover from illnesses and infections. Then there's "chemo brain"- the cognitive fog that plagued him throughout high school and university.
"People assume that surviving cancer means you're cured and life returns to normal, but that's not the reality," Colbey says. "You're managing the aftereffects of cancer for the rest of your life, and that comes at a high cost financially, physically, and emotionally. We need to talk more openly about survivorship, so people understand what life is really like after childhood cancer. We must push for better care systems that support survivors throughout their entire lives, not just during treatment."
Note: Colbey is Melbourne-based. Additional written case studies are on CoLab's website. Audio quote from Udani Reets is attached below.
Surviving cancer is not enough
Over 20,000 Australians live with the lifelong consequences of childhood and adolescent cancer, yet dedicated survivorship research and care remain fragmented and underfunded. In an unprecedented, united front, more than 21 organisations have endorsed a national position statement calling for survivorship to be a core part of every cancer care plan, roadmap and mission. Surviving cancer isn't enough – survivors need comprehensive lifelong care to thrive.
