Voices from Hungary:

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.

Hungary: Among the 3,881 responses, 147 responses identified as living in Hungary. While this number is a small representation of the young adults living with breast cancer in Hungary, it does provide valuable insight into the experience of a young adult in Hungary’s experience with a breast cancer diagnosis, treatment and survivorship.

Key Takeaways

Young age remains a barrier – over a quarter were told they were too young for breast cancer, perpetuating delays and dismissals in diagnosis.
Employment and financial security are profoundly impacted – financial security dropped from 70% to 40% during treatment, and nearly half experienced employment changes despite a publicly funded healthcare system.
Psychological and social challenges are widespread – with the vast majority experiencing disease-related anxiety, fear of recurrence, and body image concerns.
Fertility counseling is insufficient – only 16% had discussions with healthcare providers about fertility preservation, and only 6% underwent preservation procedures, indicating a need for more proactive conversations.

Written educational materials are critically lacking – 82% respondents did not receive or understand written materials about their diagnosis, representing a major communication gap.
Clinical trial access is severely limited – despite high interest and positive perceptions, only 11% were ever asked to participate, and 58% were unaware of local availability.
Supportive care gaps persist – especially in age-specific services, with 50% reporting no support tailored to young women with breast cancer.
Government engagement is extremely low – less than 1% of respondents were aware of policy efforts to improve cancer care access, highlighting a critical need for patient involvement in policymaking.
Survivorship education is the top unmet need – 54% respondents identified this as a current priority, emphasizing the importance of long-term support, counseling, and policy-level investment in survivorship care.

A Closer Look

The Diagnosis Journey: Detection, Testing and Understanding

Respondents reported high awareness of signs and symptoms of breast cancer, with the vast majority (80%) noticing signs or symptoms that led to their diagnosis, while 14% were diagnosed through routine screening. The median age of diagnosis was 36 and 63% were diagnosed at Stage II or lower. 13 respondents did not know their initial stage at diagnosis. The most common diagnosis was invasive ductal-carcinoma (46%) followed by ductal carcinoma in situ (20%).

Awareness of tumor biology was high, with only 9% not knowing their hormone receptor status and 8% not knowing their HER2 status. However, genomic testing rates were notably low at only 21%. In contrast, 71% underwent genetic testing. 38% reported a family history of breast cancer.

22% delayed seeking medical attention – most commonly due to age, lack of family history, fear, or limited time. Alarmingly, 28% reported being told by a healthcare provider they were too young for breast cancer, indicating persistent age-related biases in clinical settings.

56% of respondents are raising children under the age of 18, with an additional 7% caring for adult children. These respondents 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.

Stage at diagnosis results

Genetic testing.

Diagnosis communication.

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

Among respondents who discussed their treatment experience, 67% had a clear understanding of their treatment plan and why they were receiving each treatment. 52% (n=76) received an individualized plan tailored to their cancer type, age and family history.

82% received their diagnosis in person. 50% felt they were able to understand and ask questions, and 59% said their healthcare provider demonstrated compassion, a striking finding emerged: 82% reported not receiving written materials to explain their diagnosis – or not understanding what they were given. This indicates a critical gap in communication and educational resources. 61% said they had a healthcare professional they could talk to regularly, and 71% felt they could ask their healthcare provider questions. 73% reported having a good relationship with their oncologist.

Interest in clinical trials is high among the 141 respondents who answered questions about clinical trial awareness, perception, and availability. 66% would like to learn more about clinical trials and 51% had a positive or very positive perception of clinical trials. However, only 11% had ever been asked to participate in a trial and 60% were unsure if clinical trials were even available in their area, representing a significant access gap.

Long-term survivorship information showed more positive results: 51% received information about the long-term impact of cancer treatment on overall health, and 53% received information about fertility impacts – suggesting reasonably good communication on these topics.

Provider communication.

Psychological burden.

Psychological Impact

Emotional and mental health challenges are widespread but often under-supported. The emotional toll of a young breast cancer diagnosis was profound, with 76% reporting disease-related anxiety, 69% feared dying, 62% feared recurrence, 54% experienced general anxiety, 27% faced depression, and 21% felt isolated. Only 5% reported no psychological challenges.

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 significant disruption to women’s careers and livelihoods. At diagnosis or during treatment, 46% experienced changes in employment status. Before diagnosis, 77% were working full-time or part-time. The impact on daily functioning was substantial, with 51% reporting difficulty managing a job or school and 16% experiencing loss or reduction of employment.

Before diagnosis, 70% described themselves as financially very secure; this dropped dramatically to only 40% during treatment. Although 88% benefited from government-funded healthcare, 18% said the cost of treatment still impacted them financially, and 16% experienced problems securing health or life insurance. Additionally, 11% had existing medical debt prior to diagnosis, and 48% faced financial insecurity as a result of their diagnosis and treatment.

Employment changes.

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

A young breast cancer diagnosis impacts many areas including significant body image issues, relationship challenges and practical concerns. Changes to body image and sexuality were nearly universal, with 69% expressing concerns about body image, 64% reporting impacts on sexuality, and 50% reporting changes in relationships with loved ones, friends, or coworkers. Additionally, 33% experienced changes in romantic relationships, while 17% reported no social or relationship issues.

Treatment effects.

Fertility preservation.

Among respondents, only 5% underwent fertility preservation procedures, and 16% said their healthcare provider discussed fertility options, indicating a significant gap in fertility counseling. Encouragingly, 93% said cost did not influence their fertility decisions, likely reflecting government coverage or support programs.

However, the low rates of fertility preservation discussions highlight the need for more consistent and proactive fertility counseling for young adults facing breast cancer treatment.

Practical burdens and supportive services

Everyday burdens were common and included: 54% struggled with housekeeping, 51% had difficulty managing work or school, 29% found caring for children challenging, 44% had difficulty navigating the healthcare system, and 48% faced financial insecurity.

Practical support needs were described as “fairly well met” overall for those who needed assistance, including transportation, childcare, and housekeeping support.

Supportive services were inconsistently accessed throughout the cancer journey:

50% needed support at diagnosis; 29% received it
49% needed support during treatment; 33% received it
43% needed support after treatment; 29% received it

Challenges faced.

Supportive services.

A striking 50% reported no support services specifically tailored to young women with breast cancer, indicating a significant gap in age-appropriate care resources.

Patient engagement showed strong virtual participation, with 89% being members of online communities, though only 37% were members of patient advocacy organizations or support groups in person, demonstrating the growing importance of digital peer-to-peer connection.

Patient Empowerment and Advocacy

When asked about government policy involvement, respondents expressed significant concerns about policy and patient engagement. Only 14% believed government policies were improving cancer care access, while 82% said no or didn’t know. Just 11% felt patients were involved in policymaking, and less than 1% were aware of government efforts to improve access through new policy initiatives.

Group participation.

Government policy.

This represents one of the most critical gaps identified in the survey and suggests an urgent need for stronger collaboration between government agencies and patient advocacy organizations to ensure that patient voices inform national cancer strategies.

In Their Own Words: Patient-Identified Needs and Priorities

Respondents identified the following ongoing needs:

54% education about survivorship
43% government policies to better support young patients and families
37% access to additional therapies or treatment options
30% grief and loss support
27% virtual peer connection
24% peer connection (in-person)
13% information about caring for yourself
9% support for other friends/family
8% physical therapy, lymphedema therapy

These findings reinforce that survivorship education, government policy advocacy, and access to additional treatment options remain top priorities among young adults with breast cancer in Hungary.

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

Lilly Logo.

*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