Calls to streamline cancer diagnosis ‘tsunami’Katelyn CatanzaritiAAPSun, 31 August 2025 5:01AM
For the 150,000 Australians diagnosed with cancer every year, the shock of that first appointment is only the beginning.
Beyond the fear and uncertainty, many are left lost in a maze of appointments, specialist care and confusing medical jargon.
Dr Susannah Morris, a highly educated health consumer advocate, thought she was as prepared as anyone could be when she was diagnosed.
She was wrong.
“I’m an academic in the social sciences. I’m used to reading large amounts of information. I do health policy research. I should be really well placed to understand a health diagnosis,” Dr Morris tells AAP.
“If I found it this hard to navigate the experience of being diagnosed with cancer and I had English as my first language and worked in social policy where I understood how systems function, then what about everyone else?”
The experience was like waiting for a tsunami to hit, Dr Morris says.
“Your horizon has changed, the ocean’s pulled back and you know the wave is really going to hit you but you’ve absolutely no idea what to do or where to turn.
“And you also find yourself in a foreign country where you don’t speak the language. You’re trying to learn a new vocabulary of cancer-speak.
“Even with all of the things to my advantage around this, in terms of education, profession, everything else, it’s really scary.”
The busy working mum of two was diagnosed with aggressive breast cancer in 2016 and has been living with ongoing treatment to reduce the risk of recurrence.
Her care has involved multiple surgeries, chemotherapy and interactions with dozens of medical staff across various allied healthcare fields and specialties, ranging from surgical, medical and radiation oncology to infectious diseases and immunology.
“I found the experience of my diagnosis and care pathway incredibly overwhelming and disempowering,” she says.
“But for everyone there are complexities. No provider sees everything that happens in a patient’s journey; everyone is trying their best but the system is organised around pathologies and providers, not the person.
“It makes the experience of navigating it much harder than it needs to be.”
All.Can, a not-for-profit organisation working to improve the efficiency of cancer care, is calling for Australians affected by cancer to contribute their experiences to a survey that will help shape the latest refresh to the Australian National Cancer Plan.
Dr Morris emphasises that navigating cancer care is about more than just surviving.
“People don’t just care if they’re alive or dead,” she elaborates.
“What’s common to everyone is that they want to live well with and beyond their cancer diagnosis and that includes dealing with chronic effects and treatment.
“The survey gives people the chance to share their experiences and unmet needs, so the system can better respond.
“It’s about greater co-ordination of care, and tools to help people self-navigate when they can, but also access to navigators – actual people – when needed.”
Dr Morris’ story illustrates the central challenge for patients: while treatment is delivered by experts doing their best in their own areas, the system is divided into silos that rarely fit together.
That can leave patients juggling multiple appointments, duplicating information and struggling to make sense of life-altering decisions.
All.Can’s survey aims to capture these lived experiences, with the goal of improving the accessibility, co-ordination and compassion of care.
It builds on previous research, including a 2018 global survey that captured the experiences of 800 Australians and informed the Australian National Cancer Plan.
Professor Christobel Saunders, co-chair of All.Can Australia and president-elect of All.Can International, says patients often struggle to understand the financial implications of their cancer journey even when the medical treatment itself is available.
“They want to understand the financial costs of their cancer and feel that they don’t,” she tells AAP.
“We know a significant proportion of people will face financial catastrophe – at least 10 per cent of their annual income will go towards treatment – and many cannot afford the tests, investigations, drugs or non-medical costs like child care and travel.”
The results of the survey will help inform better care navigation.
“Even with systems improving, we still have challenges around financial understanding and supporting populations who may struggle … including young people, Indigenous Australians and those from non-English speaking backgrounds,” she says.
According to Lifeline Australia chair and practising psychiatrist Steve Moylan, complexity is compounded by the psychological shock of the disease itself.
“A cancer diagnosis is a major life stressor,” he says. “It challenges how people see themselves and their future.
“There’s often a feeling of losing control. People are suddenly required to understand a lot of information, often couched in medical language, and make important decisions while under enormous stress.”
For Dr Morris, addressing long-term needs of cancer patients is critical amid the growing number living with “treatable, not curable” cancers – conditions that may be controlled for years but not eliminated.
That means recognising quality of life matters as much as quantity. Some patients face long-term pain, fatigue or osteoporosis as a result of treatment, while others may be in active therapy for the rest of their lives.
Dr Morris believes a more “person-centred” system would ease that burden.
“I think it often isn’t delivered because we really don’t start with the whole person and their need to live well with and beyond their cancer diagnosis,” she says.
Prof Moylan believes such changes could ease some of the mental strain cancer places on individuals and families.
“Supportive care, psychological care and practical assistance are not extras, they are fundamental,” he says.
“We need to see the whole person, not just the disease.”
The All.Can Australia survey is open until 17 September.
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