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Voices from Sweden:
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.
Sweden: Among the 3,881 responses, 97 responses identified as living in Sweden. While this number is a small representation of the young adults living with breast cancer in Sweden, it provides valuable insight into their experiences
Key Takeaways
Young age remains a barrier – 21% were told they were “too young” for breast cancer, and 38% delayed reporting symptoms.
Employment and financial security are profoundly impacted; many lose work or income even within a publicly funded healthcare system.
Psychological and social challenges are widespread, with isolation, fear, and body image issues affecting most respondents.
A major gap exists in long-term survivor education, with 75% of respondents reporting they received no related information.
Supportive care gaps persist, especially for household help, managing work or school, and services tailored to young adults.
Patient advocacy and empowerment are strong, but government engagement and clinical trial access remain limited.
Survivorship and emotional healing are pressing unmet needs – highlighting the importance of peer networks, counseling, and policy-level investment in long-term support.
A Closer Look
The Diagnosis Journey: Detection, Testing and Understanding
While respondents reported a high awareness of the signs/symptoms of breast cancer, delays in reporting symptoms were still cited by 38% of respondents. Reasons behind these delays ranged from young age and lack of family history to limited time, pregnancy or breastfeeding, and fear, and they often correlated with later stage diagnoses, with over half reporting diagnosis at stage II or III. The majority were diagnosed with Invasive Ductal Carcinoma, consistent with global patterns. Notably, 21% of respondents reported being told by a healthcare provider that they were too young for breast cancer, reflecting a critical gap in awareness and early support.
67% 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
During their treatment journey, 91% of respondents felt comfortable asking their healthcare providers questions, and 75% had a provider readily available to address concerns. Over half of respondents had an individualized treatment plan based on type, age, and family history. Genetic testing was widely utilized by 70% of respondents. However, knowledge of key biomarkers remained limited, with 15% unaware of their hormone receptor status and 32% unaware of their HER2 status. These findings highlight the importance of not only clear communication between providers and patients, but also ensuring comprehensive, individualized care that incorporates genetic and biomarker information for optimal treatment planning.
Interest in clinical trials is high among the respondents who answered questions about clinical trial awareness, perception and availability. 60% would like to learn more about clinical trials and 72% had a positive or very positive perception of clinical trials. However, only 37% had ever been asked to participate in a trial and 46% were unsure if clinical trials were even available in their area, representing a significant access gap.
75% 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 Impact
The psychological impact of breast cancer was seen amongst respondents, with over half reporting experiencing general anxiety, disease-related anxiety, fear of recurrence, or fear of dying. These findings highlight the ongoing need for comprehensive psychosocial support that extends beyond treatment into survivorship.
Financial and Employment Impact
Sweden’s strong healthcare infrastructure played a significant role in reducing some of the direct financial strain of treatment, with nearly all respondents (96%) receiving government healthcare and 91% reporting no existing medical debt prior to their diagnosis. The cost of treatment did not influence decision-making.
However, this security did not completely shield survivors from financial instability, as many reported significant changes during and after treatment. Employment was particularly affected, with a majority noting disruptions to their work status at diagnosis or during treatment. For the 70% of respondents raising children under the age of 18, these disruptions created additional challenges in balancing their careers and family responsibilities with the demands of treatment.
Body Image, Sexuality, and Fertility
Body image and sexuality emerged as significant areas of impact, with approximately half of respondents reporting negative changes in how they viewed themselves and experienced intimacy. In addition, 54% of respondents cited changes in relationships with loved ones, friends, and coworkers while 41% noted changes in romantic relationships. For young adults, these shifts can have lasting effects on confidence, self-esteem, and overall quality of life, underscoring the need for greater integration of sexual health and wellness into care planning.
Fertility preservation was not widely integrated into treatment planning. While cost was not a barrier, only 45% of respondents reported that their healthcare provider discussed fertility preservation options before treatment. Just 13 individuals underwent fertility preservation procedures. These findings underscore a gap in proactive communication and planning around fertility. These needs are particularly important to address with young adults who may not yet have started or completed family planning.
Practical burdens and supportive services
Practical burdens included: 51% difficulty with housekeeping, 59% difficulty managing work or school, 36% financial insecurity, 36% difficulty caring for children
More than half of women needed more supportive care at diagnosis; 69% reported needing emotional support at diagnosis, but only 55% received it. However, all women who indicated needing support after treatment received it.
A striking 68% reported no support services specifically tailored to young women with breast cancer.
Patient Empowerment and Advocacy
Young adults in Sweden expressed strong engagement with patient advocacy or support groups (69%) and online communities (71%). However, 68% indicated that they did not have support specifically focused around unique issues young women face, illustrating the complexity of survivorship and a critical need to tailor advocacy, education, and resources to their lived experiences.
66% of responders believe the government has policies improving access to cancer care, but the majority were unsure or said no. 38% felt that patients were included in policy creation. 45% believe their government is actively working on policies focused on better access for young adults with breast cancer. This signals moderate awareness yet potential gaps in patient engagement in national health policy.
In Their Own Words: Patient-Identified Needs and Priorities
Respondents identified the following ongoing needs:
- 45% respondents seeking education about survivorship
- 31% wanting more information on self-care
- 25% needing physical or lymphedema therapy
- 20% needing support for grief and loss
- 17% urging government policies to better support young patients
Interactive Data Explorer
Read the full reports and view the Interactive Data Explorer.
Comprehensive Reports
Learn more about the Project 528 methodology and process in the Project 528 First Look report.
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
*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
Slides & Visuals
Source: Young Survival Coalition, Project 528
Specific Data or Findings
Source: Young Survival Coalition, Project 528 ([Year]), [add description]
Learn more at: https://project528.youngsurvival.org/citation/