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Voices from Canada:
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.
Canada: Among the 3,881 responses, 113 responses identified as living in Canada. While this number is a small representation
of the young adults living with breast cancer in Canada,
it provides valuable insight into their experiences.
Key Takeaways
Young age remains a barrier – nearly a third (29%) were told they were “too young” for breast cancer, and almost half (44%) delayed reporting symptoms.
Employment and financial security are profoundly impacted – 77% experienced changes in employment status, and financial security dropped from 61% before diagnosis to just 30% during treatment, even within a publicly funded healthcare system.
Psychological and social challenges are widespread – 87% experienced disease-related anxiety, 82% feared recurrence, and 65% felt isolated, with body image concerns affecting 88% of respondents.
Fertility and sexuality require more consistent discussion and support – only 52% had healthcare providers discuss fertility options, and more than 60% reported receiving no or insufficient information about fertility at diagnosis. Additionally, 80% reported impacts on sexuality.
Supportive care gaps persist – 74% struggled with housekeeping, 37% found caring for children challenging, yet 69% reported no support services specifically tailored to young women with breast cancer. While 64% needed supportive care throughout their journey, only 33% received it.
Patient advocacy and empowerment are strong, but government engagement and clinical trial access remain limited – 63% are members of advocacy organizations and 82% participate in online communities, yet only 27% were ever asked to participate in clinical trials and just 19% believed government policies were improving cancer care access.
Survivorship and emotional healing are pressing unmet needs – 66% identified education about survivorship as an ongoing need, and 48% needed grief and loss support, 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
The median age of diagnosis was 35, and nearly 70% were diagnosed at stage II or lower. Only 5 responders reported they did not know their stage at diagnosis. A strong majority reported high awareness of signs and symptoms. They were aware of the potential symptoms of a breast cancer diagnosis including the most commonly reported and recognized symptoms–hard lump, change in breast size or shape, and nipple discharge.
At 88%, most young breast cancer survivors in Canada received genetic testing to assess hereditary risk; however only 33% had genomic testing to guide treatment decisions. While the majority understood key aspects of their tumor biology, knowledge gaps remained for a small but significant portion of patients. 7% did not know their hormone receptor status and 9% did not know their HER2 status. 50% had a family history of breast cancer.
44% delayed seeking medical attention – most commonly due to age, lack of family history, fear, or limited time. Alarmingly, nearly one-third (29%) reported being told by a healthcare provider they were “too young” for breast cancer.
At diagnosis, 43% respondents received their diagnosis in person. Encouragingly, 70% felt they were able to understand and ask questions, and 80% said their healthcare provider demonstrated compassion. However, half reported not receiving written materials to explain their diagnosis – or not understanding what they were given – indicating a clear opportunity for improvement in communication and educational resources. Only 60% said they had a healthcare professional they could talk to regularly, suggesting a gap in ongoing, personalized support during treatment.
42% 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
76% had a clear understanding of their treatment plan and why they were receiving each treatment. 60% received an individualized plan tailored to their cancer type, age and family history.
Interest in clinical trials is high for the responders who answered questions about clinical trial awareness, perception and availability. 76% would like to learn more about clinical trials and 61% had a positive or very positive perception of clinical trials. Only 27% had ever been asked to participate in a trial and 61% were unsure if clinical trials were even available in their area.
55% 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
Emotional and mental health challenges are widespread but often under-supported. The emotional toll of a young breast cancer diagnosis was profound on the survivors who answered questions about the psychological impact:
- 87% reported disease-related anxiety
- 82% feared recurrence
- 77% experienced general anxiety
- 65% feared dying
- 56% faced depression
- 65% felt isolated
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. At diagnosis or during treatment, 77% experienced changes in employment status, Before diagnosis, 61% described themselves as financially secure; this dropped to 30% during treatment. Although 97% benefited from government-funded healthcare, 9% said the cost of treatment still impacted them financially, and 19% experienced difficulties securing health or life insurance.
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 issues. Changes to body image and sexuality were nearly universal with 88% expressing concern about changes in appearance, 80% reporting impacts on sexuality, and 69% reported changes in relationships with loved ones, friends, or coworkers.
19% underwent fertility preservation, and 52% said their HCP discussed fertility options. Encouragingly, 84% said cost did not influence their fertility decisions – likely reflecting provincial coverage or support programs.
Still, more than 60% reported no or insufficient information about fertility at diagnosis, highlighting the need for consistent fertility counseling for young adults.
Practical burdens and supportive services
Everyday burdens were common and included:
- 74% struggled with housekeeping
- 58% had difficulty managing work or school
- 37% found caring for children challenging
- 46% had difficulty navigating the healthcare system
- 49% faced financial insecurity.
Practical support needs were “fairly well met” overall, but notable gaps persisted in childcare and housekeeping support.
Supportive services were inconsistently accessed: up to 64% needed supportive care throughout the cancer journey, while 33% received it.
A striking 69% reported no support services specifically tailored to young women with breast cancer.
Patient Empowerment and Advocacy
Most respondents were highly engaged with 63% serving as members of patient advocacy organizations or support groups and 82% participating in online communities – demonstrating the growing importance of peer-to-peer and virtual connection.
When asked about government policy involvement, only 19% believed government policies were improving cancer care access. 30% felt patients were involved in policymaking and only 8% were aware of efforts to improve access through new policy initiatives. This suggests a 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:
- 66% education about survivorship
- 55% government policies to better support young patients and families
- 48% grief and loss support
- 42% access to additional therapies or treatment options
- 37% peer connection (in-person)
- 29% virtual peer connection
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/