A national survey released today to mark World Cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs Day has revealed significant gaps in cancer support across Australia, with people diagnosed with rare and less common cancers experiencing the greatest unmet needs – particularly in access to information, mental health support and help navigating financial hardship.
The Cancer Lived Experience Survey, commissioned last year by Rare Cancers Australia (RCA), captures the voices of nearly 2,500 people impacted by cancer, offering deep insight into their unique experiences before, during and after diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results, throughout treatment, and beyond.
Findings show cancer experiences vary widely, with many respondents reporting they did not receive the support they needed. People with rare and less common cancers consistently reported higher levels of unmet need than those with common cancers, including access to information (35%), connection with others with similar experiences (37%), and not being referred to social services (28%) and financial support services (32%).
Mental health emerged as the most significant unmet support need across the survey. Nearly half (49%) of respondents with a rare or less common cancer said their mental health could have been better supported, compared with one-third (34%) of people with common cancers.
The survey also highlights the serious financial impact of cancer. One in five respondents (21%) reported spending more than $10,000 on out-of-pocket cancer-related costs. Financial strain was a serious finding for people with all cancer types but what was particularly stark was how heightened it was for those with rare and less common cancers, with 58% saying their household financial situation had worsened as a result of cancer, compared with 42% of those with common cancers.
The theme for World Cancer Day, ‘United by Unique’, calls for a people-centred approach to cancer care that recognises and responds to each individual’s unique needs. RCA Chief Executive Officer, Christine Cockburn, said the findings reinforce the importance of tailored, navigated support – particularly for people facing the isolation and complexity of rare cancer.
“These results show a clear and urgent need for better access to information and supportive care services, especially for people navigating the uncertainty of a rare cancer diagnosis,” Ms Cockburn said.
“What we heard through this national survey reflects what our Specialist Cancer Navigators see every day. Yet too many people are still navigating this experience alone, with more than one in three people (37%) with a rare or less common cancer reporting they wanted to be referred to a supportive care navigator but were not.
“Understanding lived experience must be central to improving cancer care in Australia. We must listen to patients and carers to design services that are responsive, integrated and fit-for-purpose,” she said.
One of those voices is Melbourne woman Bronwyn White, who was diagnosed with a rare and aggressive sarcomacancer arising from bones and/or soft tissue in 2020.
“When you’re diagnosed with cancer, especially one that is rare, access to support and relevant information quickly becomes vital,” Ms White explains. “It took time and effort to find information that was specific to my cancer and my situation.
“I remember being offered counselling and access to a cancer support app through my workplace. After talking to the counsellor about not feeling ‘seen’, I logged into the app and found my cancer wasn’t even listed. It was deeply disappointing and made me feel like support for my situation didn’t exist.
“I can’t stress enough how important access to information and support is. It helps people understand what to expect, make informed decisions about treatment, and regain a sense of control,” she said.
The survey findings informed RCA’s recent Now it’s personal: Access and equity for all report, which outlines six key policy recommendations to improve equity, access and support for people living with rare and less common cancers in Australia. Additional findings for people with rare and less common cancers include:
- Almost half felt their symptoms were overlooked or dismissed.
- 1 in 4 were diagnosed with a different condition before they got their cancer diagnosis
- 1 in 3 had to attend four or more appointments about their symptoms before receiving a diagnosis.
- 1 in 5 waited more than six months from their first medical appointment to cancer testing; for 1 in 14, that wait stretched to over three years.
- By contrast, 88% of people with common cancers reported being tested within three months of seeing a healthcare professional about symptoms.
- Young people (25 to 34) were more likely to delay testing, believing their symptoms weren’t serious.
This World Cancer Day is a reminder that every cancer experience is unique—and that person-centred, responsive care is essential to improving outcomes, equity and experience across Australia.
The full Cancer Lived Experience Survey report is available here.