The hidden burden of diagnosis, the need for holistic care, and Kapa3’s commitment to patient navigation, psychosocial support and empowerment.
A cancer diagnosis at a young age affects far more than physical health. It can disrupt education, employment, family life, personal relationships, financial security and plans for the future. For young women living with advanced breast cancer, these challenges are often particularly complex, as they must navigate treatment and uncertainty while continuing to fulfil multiple personal, professional and family responsibilities.
The findings of Project 528, a global needs assessment led by the Young Survival Coalition (YSC), provide important evidence of these often-overlooked realities.
Presented at the 8th International Consensus Conference for Advanced Breast Cancer (ABC8) in Lisbon in November 2025, the survey gathered 3,881 responses from 67 countries. The findings presented at the conference focused on 385 young respondents under the age of 40 living with advanced breast cancer.
The results highlight significant gaps in access to information, psychological support, financial protection, practical assistance and meaningful participation in healthcare decisions.
Above all, they reinforce an essential message: cancer care must address the whole person, not only the disease.
The revealing findings of Project 528
The survey findings offer a compelling picture of the challenges experienced by young women with advanced breast cancer and demonstrate how deeply the disease affects everyday life.
Motherhood and family responsibilities
Almost half of the respondents (48%) had children under the age of 18.
For young mothers, living with advanced breast cancer means balancing demanding treatment schedules, physical symptoms and emotional uncertainty with the everyday responsibilities of raising children.
Childcare, family routines and concerns about their children’s future can become considerable sources of distress.
These findings highlight the importance of family-centred supportive care that recognises both the needs of patients and those of their loved ones.
Employment disruption and financial toxicity
The socioeconomic consequences of advanced breast cancer are substantial.
64% of respondents reported disruption to their employment following diagnosis, while 40% accumulated medical debt.
According to the detailed Project 528 report, the proportion of respondents who considered themselves financially secure fell from 51% before diagnosis to just 7% during treatment.
These findings illustrate the phenomenon of financial toxicity: the economic burden associated with cancer, including loss of income, treatment-related expenditure, travel costs, caregiving responsibilities and reduced employment opportunities.
Financial insecurity can further intensify emotional distress and create additional barriers to accessing appropriate care.
For younger patients, whose careers and financial independence may still be developing, the consequences can extend well beyond the treatment period.
Psychological distress and quality of life
80% of respondents reported psychological distress or mental health difficulties.
Concerns relating to body image, fertility, sexual health, emotional well-being and loss of independence were widespread, yet were often insufficiently addressed within routine cancer care.
For many young women, advanced breast cancer also raises difficult questions about identity, relationships, intimacy, motherhood and the future.
These challenges demonstrate why psychosocial support should not be viewed as an optional addition to cancer treatment.
It is an essential component of comprehensive, person-centred oncology care.
Delays in seeking care and diagnosis
The survey also revealed important gaps in awareness and early detection.
40% of respondents reported delaying their initial medical consultation. Contributing factors included fear, limited awareness of symptoms and experiences of having their concerns dismissed or underestimated by healthcare professionals.
Only 14% reported being diagnosed through screening or routine medical care, while 85% sought diagnosis after identifying symptoms themselves.
These findings point to the need for greater awareness of breast cancer in younger populations, timely clinical assessment of concerning symptoms and improved communication between patients and healthcare professionals.
They also remind us that young age should not automatically lead to the dismissal of potentially significant symptoms.
Gaps in information and access to precision medicine
The findings also identified differences in access to diagnostic testing and understanding of treatment options.
Although 90% reported undergoing genetic testing for inherited mutations, only 59% had received genomic or companion diagnostic testing to investigate characteristics of the tumour.
Such testing, when clinically indicated, can provide valuable information to support personalised treatment decisions.
Moreover, only 46% of respondents reported being offered more than one treatment option, while targeted therapies were among the least understood treatment approaches.
These results highlight the importance of accessible medical information, effective patient–professional communication and shared decision-making.
Online patient communities also emerged as valuable sources of information, peer support and empowerment. However, the detailed Project 528 report found that 43% had not been referred to peer-support or patient advocacy groups by their healthcare teams.
As Jennifer Merschdorf, Chief Executive Officer of the Young Survival Coalition, emphasised, healthcare systems too often place the burden of self-advocacy on patients who are already coping with fatigue, fear and financial strain.
The Kapa3 connection: From identifying needs to meaningful action
The findings of Project 528 are more than statistics. They reveal the personal, social and economic dimensions of cancer that healthcare systems must increasingly recognise and address.
Although the survey reflects experiences reported across different countries and healthcare contexts, many of the challenges it identifies are also relevant to the needs that cancer patients and families may encounter in Greece.
At Kapa3 – Cancer Guidance Center, we believe that the experience of cancer extends far beyond hospital appointments, medical consultations and treatment decisions.
Cancer affects the ability to work, care for loved ones, maintain financial stability, access essential services and participate fully in everyday life.
Our mission is to help bridge the gap between medical care and the practical, social and emotional needs that accompany a cancer diagnosis.
Patient navigation and guidance within healthcare and social support systems
As Professor Fatima Cardoso, President of the ABC Global Alliance, has highlighted, equitable access to appropriate diagnostics, personalised treatment and comprehensive supportive care is essential.
At Kapa3, we provide free patient navigation and social guidance services, helping people affected by cancer and their families better understand their rights and access available forms of support.
Our work includes guidance on administrative procedures, disability assessment and certification, social benefits, insurance-related matters, workplace rights and available community resources.
Through individualised support and cooperation with relevant services, we aim to reduce the bureaucratic and informational barriers that patients frequently encounter.
No person affected by cancer should have to navigate a complex health and welfare system alone.
Psychosocial support and quality of life
With psychological distress affecting such a high proportion of young patients in the Project 528 survey, emotional and psychosocial care must be recognised as a central part of the cancer journey.
Kapa3 provides psychological support services adapted to the needs of patients and caregivers, alongside social guidance and referrals to appropriate specialised services when necessary.
We recognise the importance of offering a supportive environment where people can discuss emotional uncertainty, changes in family and personal relationships, body image concerns, fear of recurrence or progression, and the challenges of adapting to life with cancer.
Our approach promotes dignity, emotional resilience and a more comprehensive understanding of quality of life.
Practical assistance and support for families
For a young mother living with advanced breast cancer, routine tasks can become overwhelming.
Childcare arrangements, travel for treatment, household responsibilities, employment obligations and financial pressures may all create additional burdens.
Kapa3 supports patients and caregivers by identifying their practical needs, providing information and connecting them with appropriate social services, community resources and support structures.
Through collaboration with local authorities, healthcare professionals and community organisations, we seek to strengthen continuity of support and help families navigate everyday challenges.
Empowerment, health literacy and patient advocacy
One of the strongest messages emerging from Project 528 is that reliable information is a fundamental resource for patient empowerment.
At Kapa3, we work to strengthen health literacy, informed participation and patient advocacy.
We encourage patients to ask questions, understand the information provided by their healthcare teams, become aware of relevant diagnostic and treatment options, and participate actively in decisions affecting their lives.
Our role is not to replace medical advice, but to help people access trustworthy information and feel better prepared to communicate with healthcare professionals.
At the same time, we advocate for more inclusive health and social policies that recognise the particular challenges experienced by adolescents and young adults affected by cancer (AYAs).
These include employment protection, financial security, psychosocial needs, family responsibilities, fertility-related concerns and continuity of care.
Moving forward together: Advocating for a better quality of life
Project 528 offers an important roadmap for researchers, healthcare professionals, patient organisations and policymakers.
It demonstrates the urgent need for healthcare systems that are not only medically effective, but also accessible, coordinated, compassionate and responsive to the realities of people’s lives.
The findings should be interpreted in the context of the survey’s limitations, including its reliance on self-reported experiences and uneven geographical representation. Nevertheless, they provide valuable patient-reported evidence that can inform further research and improvements in supportive care.
Behind every diagnosis is a woman who wants to continue living, loving, working, raising her children, building relationships and making plans for the future.
As Christina Thammasen, who shared her experience of living with metastatic breast cancer, reminds us:
“You have to keep fighting, you have to keep moving forward, you have to keep living your life.”
At Kapa3, we remain committed to ensuring that no woman, no young adult and no family affected by cancer has to face these challenges without information, guidance or support.
We advocate for a model of holistic, person-centred cancer care that extends beyond treatment and recognises every dimension of human life.
Because cancer care is not only about treatment. It is about protecting dignity, supporting everyday life and ensuring that no one is left behind.
Need support?
If you are a young person affected by cancer, a patient or a caregiver seeking guidance, psychological support or information about your rights, the Kapa3 team is here to help.
Kapa3 – Cancer Guidance Center
Telephone: +30 210 5221424
Email: info@kapa3.gr
Website: www.kapa3.gr
Sources and further reading
- Young Survival Coalition. Project 528 – First Look ABC Data: Global Needs Assessment of Young Adults Affected by Advanced Breast Cancer (2025).
https://project528.youngsurvival.org/wp-content/uploads/2025/11/MBC-Report-Project528_11.2025.pdf - ABC Global Alliance / ecancer. First global survey highlights challenges faced by young women with advanced breast cancer. 6 November 2025.
https://ecancer.org/en/news/27226-first-global-survey-highlights-challenges-faced-by-young-women-with-advanced-breast-cancer - Oncology Central. ABC8: Global survey highlights challenges that young breast cancer patients face. 6 November 2025.
https://www.oncology-central.com/abc8-global-survey-highlights-challenges-that-young-breast-cancer-patients-face/ - Project 528 – Official website and research findings.
https://project528.youngsurvival.org/results/
Article edited by:
Elena Panopoulou, Sociologist, Kapa3 Tripoli Team
Email: elenak3team@gmail.com
LinkedIn: Elena Panopoulou
