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Voices from Netherlands:
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.
Netherlands: Among the 3,881 responses, 41 responses identified as living in the Netherlands. While this number is a small representation of the young adults living with breast cancer in the Netherlands, it provides valuable insight into their experiences.
Key Takeaways
Young age remains a barrier – 17% were told they were too young for breast cancer and 47% delayed reporting symptoms, contributing to 66% being diagnosed at stage II or III
Strong patient-provider relationships resulted in personalized treatment for 87% of young adults, supported by universal patient comfort in asking questions (100%) and readily available providers (88%)
Fertility preservation discussions were common – 72% were informed of potential impact of cancer treatment on future fertility; however, only a small amount pursued fertility preservation, revealing a significant gap between discussion and implementation.
Psychological challenges are widespread – fear of recurrence and disease-related anxiety were among the top mental health concerns. Nearly half of respondents experienced general anxiety, disease-related anxiety, fear of recurrence, or fear of dying
Supportive care gaps persist especially for household help (70% needed), managing school or work (70%) and services tailored to young adults (41% reported no young adult-specific support)
Policy and advocacy opportunities exist – while 55% believe the government has policies iproving cancer care access, only 24% felt patients were included in policy creation and 21% believe policies specifically support young adults with breast cancer
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 47% 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 66% reporting diagnosis at Stage II or III. The majority were diagnosed with Invasive Ductal Carcinoma, consistent with global patterns. Notably, 17% 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.
56% 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, all respondents felt comfortable asking their healthcare providers questions, and 88% had a provider readily available to address concerns. 87% of respondents had an individualized treatment plan based on type, age, and family history. Genetic testing was widely utilized by all respondents. However, knowledge of key biomarkers remained limited, with 14% unaware of their hormone receptor status and 22% 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.
51% of respondents were interested in learning more about clinical trials and 44% had a positive or very positive perception of clinical trials. Only 22% had been asked to participate and 51% were unsure if clinical trials were even available in their area.
43% 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 nearly 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
The Netherland’s strong healthcare infrastructure played a significant role in reducing some of the direct financial strain of treatment, with 70% of respondents receiving government healthcare and 97% 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 56% 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.
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
Body image and sexuality emerged as significant areas of impact, with 70% of respondents reporting negative changes in how they viewed themselves and experienced intimacy. In addition, 52% of respondents cited changes in relationships with loved ones, friends, and coworkers while 39% 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 better integrated into treatment planning, with 72% of respondents reporting that their healthcare provider discussed fertility preservation options before treatment compared to those in other countries surveyed. However, only seven 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: 70% had difficulty with housekeeping, 70% reported difficulty managing work or school, 33% experienced financial insecurity, and 42% had difficulty caring for children.
Women received supportive care across their cancer journey; 68% reported needing emotional support at diagnosis and all received it. The number of women who needed support after treatment finished decreased to 62% and 95% received emotional support.
A striking 41% reported no support services specifically tailored to young women with breast cancer.
Patient Empowerment and Advocacy
Young adults in the Netherlands expressed moderate engagement with patient advocacy or support groups (38%) and online communities (52%). However, 41% 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.
55% of responders believe the government has policies improving access to cancer care, but 45% were unsure. Only 24% felt that patients were included in policy creation, and 21% believed 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.
In Their Own Words: Patient-Identified Needs and Priorities
Respondents identified the following ongoing needs:
- 48% respondents seeking education about survivorship
- 21% wanting more information on self-care
- 38% needing physical or lymphedema therapy
- 17% needing support for grief and loss
- 21% 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/