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Voices from South Africa:
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.
South Africa: Among the 3,881 responses, 39 responses identified as living in South Africa. While this number is a small representation of the young adults living with breast cancer in South Africa, it provides valuable insight into their experiences.
Key Takeaways
Young age remains a barrier, misperceptions around age and risk contributed to delayed reporting by 73% of respondents.
Limited use of genetic testing – by only 19% of respondents – compromises treatment personalization and fails to address hereditary cancer risks.
Fertility preservation was not widely discussed – only 28% reported discussing with their HCP – posing a barrier to those who may not have completed family planning.
Employment and financial security are profoundly impacted; many lost work or income.
Psychological and social challenges are widespread, with fear of recurrence, disease-related anxiety and fear of dying affecting many respondents.
Supportive care gaps persist, especially for childcare, household help, and services tailored to young adults.
Significant policy and advocacy opportunities to increase patient involvement and improve access.
A Closer Look
The Diagnosis Journey: Detection, Testing and Understanding
Respondents reported a lack of awareness of the signs/symptoms of breast cancer, correlating with delays in reporting symptoms cited by 73% of respondents. Reasons behind these delays ranged from young age and lack of family history to limited time, financial concerns, inability to take time off school or work, pregnancy or breastfeeding, and fear, and they often correlated with later stage diagnoses, with 73% reporting diagnosis at Stage II or III. The majority were diagnosed with Invasive Ductal Carcinoma, consistent with global patterns. Notably, 65% 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.
46% 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.
91% of respondents reported a clear understanding of their treatment plan and why they were receiving each treatment. 56% had an individualized treatment plan based on their type, age, and family history. 97% had a good relationship with their oncologist and the same number felt they could ask questions about their treatment plan. Highlighting a potential lack of patient involvement and education, 29% did not receive any written material about their diagnosis, or did not understand what they received.
Treatment and Clinical Trails: Access, Participation, and Decision-Making
During their treatment journey, 97% of respondents felt comfortable asking their healthcare providers questions, and 94% 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 rarely used, with only 19% of respondents reporting that they had utilized it. Knowledge of key biomarkers remained limited, with 68% unaware of their hormone receptor status and 78% 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 respondents who answered questions about clinical trial awareness, perception and availability. 97% would like to learn more about clinical trials and 32% had a positive or very positive perception of clinical trials. However, only 6% had ever been asked to participate in a trial and 74% were unsure if clinical trials were even available in their area, representing a significant access gap.
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
South Africa’s overburdened public healthcare system contributed to the financial strain of treatment, despite 78% of respondents receiving government healthcare and 91% reporting no existing medical debt prior to their diagnosis. While this access offered some initial financial relief, the cost of treatment still influenced decision-making.
Still, this support was not enough to shield survivors from financial instability, with many reporting significant changes during and after treatment. Employment was particularly affected, with a majority experiencing disruptions to their work status at diagnosis or during treatment. Among the 46% of respondents raising children under the age of 18, these disruptions posed additional challenges in balancing career and family responsibilities alongside the demands of treatment.
Body Image, Sexuality, and Fertility
Body image and sexuality emerged as significant areas of impact, with approximately 97% of respondents reporting negative changes in how they viewed themselves and/or experienced intimacy. In addition, 31% of respondents cited changes in relationships with loved ones, friends, and coworkers while 23% 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 28% of respondents reported that their healthcare provider discussed fertility preservation options before treatment. Just 5 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: 40% difficulty with housekeeping, 31% difficulty managing work or school, 46% financial insecurity, 46% difficulty caring for children
A significant number of women reported needing emotional support during the cancer journey, with 28% expressing this need at diagnosis and 81% reporting that they received emotional support at that time. After treatment, the number of women who needed emotional support decreased, while the number who received it increased.
19% reported no support services specifically tailored to young women with breast cancer.
Patient Empowerment and Advocacy
Young adults in South Africa expressed strong engagement with patient advocacy or support groups (78%) and online communities (75%). However, 19% 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.
37% of responders believe the government has policies improving access to cancer care, but the majority were unsure or said no. 33% felt that patients were included in policy creation. 43% believe 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:
- 60% respondents seeking education about survivorship
- 43% wanting more information on self-care
- 10% needing physical or lymphedema therapy
- 17% needing support for grief and loss
- 47% 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/