Voices from Australia:

Project 528 Findings

Project 528 is the world’s first global comprehensive needs assessment of the young adult breast cancer community. Named for the estimated 528,000 young adults affected by breast cancer globally, Project 528 collected survey responses from 3,881 patients, caregivers, and healthcare providers to identify unmet needs and inform advocacy and care strategies.

Australia: Among the 3,881 responses, 49 responses identified as living in Australia. While this number is a small representation of the young adults living with breast cancer in Australia, it provides valuable insight into their experiences.

Key Takeaways

Young age remains a barrier – 29% were told by a healthcare professional they were “too young” for breast cancer, and 43% delayed reporting symptoms due to misperceptions around age and risk.

Employment and financial security are profoundly impacted – 73% experienced changes to their employment due to cancer, and nearly half who described their financial situation as “very secure” prior to treatment became less secure during and after treatment, even within a publicly funded healthcare system. Additionally, 32% said cost of treatment impacted decisions, and 16% reported medical debt after treatment despite 70% receiving government healthcare.

Psychological and social challenges are widespread – 89% experienced fear of recurrence, 87% had disease-related anxiety, and 77% reported fear of dying, with 43% facing depression and 49% experiencing isolation.

Universal emotional distress – zero respondents reported no emotional or mental health effects, indicating that challenges with emotional wellbeing are nearly universal among this group.

Supportive care gaps persist – 83% struggled with housekeeping, 62% had difficulty managing work or school, 49% found it difficult to care for children, yet 68% did not have access to support services specifically tailored to young women. While up to 72% needed supportive care throughout the cancer journey, less than half reported receiving emotional support.

Significant policy and advocacy opportunities – only 34% believe the government has policies improving access to cancer care, 34% felt that patients were included in policy creation, and just 17% believe their government is actively working on policies focused on better access for young adults with breast cancer, signaling both a lack of awareness and potential gaps in patient engagement in national health policy.

A Closer Look

The Diagnosis Journey: Detection, Testing and Understanding

The average age of diagnosis is 37 and more than half were diagnosed at Stage II or Stage III. Only 4 respondents were diagnosed with metastatic breast cancer. A strong majority reported having a high awareness of signs and symptoms of breast cancer. 95% underwent genetic testing, and 35% had genomic testing. Only 6% didn’t know their hormone receptor status and 7% didn’t know their HER2 status — indicating relatively high awareness compared to other countries surveyed.

stage at diagnosis

patient experiences

56% had a family history of breast cancer and 43% delayed reporting symptoms due to factors like age, lack of family history, lack of time, or pregnancy/breastfeeding.

Alarmingly, 29% were told by a healthcare professional they were “too young” for breast cancer. This points to persistent age-related misconceptions in healthcare. Still, 85% felt their healthcare provider expressed compassion when sharing their diagnosis.

61% of respondents are raising children under the age of 18. They faced the dual burdens of intensive caregiving

and managing their diagnosis and treatment – highlighting the emotional and logistical demands unique

to young patients with dependent children.

Treatment and Clinical Trails: Access, Participation, and Decision-Making

67% of respondents reported a clear understanding of their treatment plan and why they were receiving each treatment. 61% had an individualized treatment plan based on their type, age, and family history. 71% had a good relationship with their oncologist, and 80% felt they could ask questions about their treatment plan. Highlighting a lack of patient involvement and education, 42% did not receive any written material about their diagnosis, or did not understand what they received.

Interest in clinical trials is high. 64% would like to learn more about clinical trials and 64% had a positive or very positive perception of clinical trials. However, only 25% had ever been asked to participate in a trial and 52% were unsure if clinical trials were even available in their area.

patient provider communication

51% of respondents were not informed about the broader, long-term health impacts of their treatment,

highlighting the need for better long-term survivor education.

psychological burden

Psychological Impact

Emotional and mental health challenges are widespread but often under-supported. The emotional toll of cancer was evident:

89% experienced a fear of recurrence
77% reported a fear of dying
87% experienced disease-related anxiety
43% experienced depression and 49% isolation

Notably, all respondents reported experiencing some degree of psychosocial impact from their diagnosis, indicating that challenges with emotional wellbeing are nearly universal among this group.

This data reflects the persistent emotional and psychological impact of breast cancer on young adults, emphasizing the need for accessible mental health care and ongoing survivorship counseling.

Financial and Employment Impact

Breast cancer brings a significant disruption to women’s careers and livelihoods. 73% experienced changes to their employment due to cancer, with the largest shift occurring during treatment.

Financial stability was also affected with nearly half who described their financial situation as “very secure” prior to treatment becoming less secure during and after treatment. 32% said cost of treatment impacted decisions, and 16% reported medical debt after treatment, despite 70% receiving government healthcare.

when employment changed

These findings underscore that while public healthcare eases direct treatment costs, secondary financial burdens – such as lost income and support costs – remain significant.

Body Image, Sexuality, and Fertility

Impacts to body image, relationships and practical issues were all significant. 72% of respondents had concerns about body image and 68% reported changes in relationships with loved ones, friends, or coworkers.

treatment effect on sexual health australia

fertility preservation

51% had discussions with their healthcare providers about the impact of cancer treatment on their fertility and family planning, but only 17% underwent procedures. Cost did not appear to be a barrier to making fertility and family planning decisions.

Practical burdens and supportive services

Practical burdens included: 83% struggled with housekeeping, 62% had difficulty managing work or school, 53% experienced financial insecurity, and 49% found it difficult to care for children.

practical challenges

supportive services

Significant gaps were reported between the need for support and what kind of support young adults with breast cancer actually received. Up to 72% needed supportive care throughout the cancer journey, while less than half reported receiving emotional support. 68% did not have access to support specifically tailored to young women.

A striking 68% reported no support services specifically tailored to young women with breast cancer.

Patient Empowerment and Advocacy

Community engagement was lower than expected compared to other countries surveyed: 59% are members of a patient advocacy group while 39% engage in online communities. Responders joined advocacy groups or online communities in order to talk to others who understood their diagnosis, ask questions, or seek advice on practical issues, like alleviating treatment side effects.

support group participation

government policy

34% of responders believe the government has policies improving access to cancer care, but the majority were unsure or said no. The same number felt that patients were included in policy creation. 17% believe their government is actively working on policies focused on better access for young adults with breast cancer. This signals both a lack of awareness and potential gaps in patient engagement in national health policy.

Responders joined advocacy groups or online communities in order to talk to others who understood their diagnosis, ask questions, or seek advice on practical issues, like alleviating treatment side effects.

In Their Own Words: Patient-Identified Needs and Priorities

Respondents identified the following ongoing needs:

55% seeking survivorship education
51% wanting additional therapies or treatment
34% needing physical therapy or lymphedema therapy
28% needing grief and loss support
36% calling for government policies to better support young cancer patients and their families.

These findings reinforce the need for more comprehensive, age-sensitive, and family-inclusive cancer support systems in Australia.

Interactive Data Explorer

Read the full reports and view the Interactive Data Explorer.

Explore the Data

Comprehensive Reports

Learn more about the Project 528 methodology and process in the Project 528 First Look report.

Learn More

YSC logo

For those diagnosed with breast cancer before 40, YSC is the global home for intelligent, empowered survivorship — providing the most comprehensive tools, resources, and expert-driven community so they can confidently navigate every stage of their life after diagnosis.

Learn more about the support and resources available at youngsurvival.org.

Thank You to the Project 528 Sponsors

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*As of November 2025

Cite Project 528

Reports & Publications

Young Survival Coalition. Project 528: Global Needs Assessment of Young Adults with Breast Cancer. [Year]. www.youngsurvival.org