At Rare Cancers Australia (RCA), our vision is that every person impacted by rare cancer will be supported from every angle, from the beginning. We do whatever it takes to change the story of a rare cancer diagnosis, through limitless support and relentless advocacy.
RCA commissioned the 2025 Cancer Lived Experience Survey to better understand what people diagnosed with cancer and their carers are experiencing. Almost 2,500 people generously shared their personal and rich insights, telling us what happened and how they felt during their cancer experience. We would like to thank and acknowledge everyone who completed the survey, helping us better understand what’s really happening for people affected by cancer in Australia so together, we can make a difference.
The results
The full results of the survey are now available.
The findings show that people with rare and less common cancers face additional challenges, from before diagnosis through to survivorship.
The results highlight:
- delayed diagnosis of rare and less common cancers, with missed opportunities for earlier detection
- people with cancer want more support and better access to supportive care services – and this need is significantly higher for those with rare and less common cancers
- carers of people with cancer also want better support.
The results also show significant opportunities to improve services and support, drawing on what is working better for common cancer pathways.
Throughout the survey results, there is a comparison between experiences and outcomes for those with rare and less common cancers, and common cancers. These contrasts allow us to best identify areas with the greatest gaps, and learn from improvements for people with common cancers to shape policy, care and support for everyone with cancer.
What happens next?
Results from the Cancer Lived Experience Survey are already shaping RCA’s support services and informing our advocacy work. The survey findings informed our 2025 report, Now it’s personal: Access and equity for all, which makes six practical policy recommendations that will address inequities faced by people with rare and less common cancers.
About the survey
The Cancer Lived Experience Survey was designed to identify unmet needs among adults with cancer in Australia and the carers who support them. We wanted to understand, at a national level, what’s really happening when people are diagnosed with cancer, what’s working well, and where services, support and care pathways can be improved.
The survey explored:
- pre-diagnosis and diagnosis
- treatment
- support and impact.
Three-quarters of survey respondents had, or cared for someone who had, a rare or less common cancer.
The survey was conducted by So What? Research on behalf of Rare Cancers Australia.
