Project 528 White Logo

First Look

Global Needs Assessment of Young Adults

Affected by Breast Cancer

Project 528, named for the estimated 528,018 young adults living with breast cancer, is a cooperative approach to creating, implementing and analyzing a global needs assessment of the young adult breast cancer community.

What: A global needs assessment

Who: Young adults living with breast cancer, their co-survivors, and the healthcare providers that serve them.

How: A global collaborative of nonprofits, support organizations, researchers and healthcare providers

Why: Shared knowledge creates shared solutions

Project 528 is named for the 528,018 young adults living with breast cancer around the world. The 5-year prevalence rate was calculated using data from the International Agency for Research on Cancer’s Globocan 2018, and is an estimated 528,018 people.

Executive Summary

PROJECT 528, named after the estimated 528,018 young adults impacted by breast cancer worldwide, represents a groundbreaking global needs assessment of young adults affected by breast cancer. This collaborative effort between Young Survival Coalition (YSC) and Europa Donna Slovenia (ED-S) aims to address the critical gap into understanding the unique challenges faced by young breast cancer survivors across diverse geographic and cultural contexts.

The survey captured responses from young breast cancer survivors (referring to those diagnosed with early-stage as well as those living with metastatic breast cancer) in 67 countries worldwide, providing a fairly comprehensive view of their experiences across various aspects of their cancer journey.

The key findings include:

Diagnosis

Significant disparities in early detection and diagnostic processes were observed across regions. In developed countries, access to advanced diagnostic tools was higher (70-80%), correlating with earlier stage diagnosis. In contrast, many low- and middle-income countries face severe limitations in access to these technologies (often below 20%), leading to later-stage diagnoses and most likely poorer outcomes.

Treatment

Access to comprehensive treatment varies widely. While 80% of respondents in high-income countries reported receiving a combination of treatments including surgery, chemotherapy, radiation, and targeted therapies, access to newer targeted therapies or immunotherapies was limited to below 10% in many low income countries.

Psychological impact

80% of respondents globally reported significant psychological distress following their diagnosis. Anxiety (70%) and depression (50%) were the most common mental health issues, with rates varying by region. Access to mental health support ranged from 60% in the United States to below 20% in most developing countries.

Financial and employment impact

60% of respondents reported negative impacts on their employment status. Financial distress was highest in the United States (80%) due to medical costs, while in countries with universal healthcare, it was lower but still significant (60-65%). In developing countries, up to 90% reported severe financial distress.

Body image, sexuality, and fertility

75% of respondents globally reported negative impacts on body image, with higher rates in Western and some Asian countries (80-85%). 60% reported negative effects on their sex lives and intimate relationships, with significant regional variations in openness to discussing these issues.

75% of premenopausal respondents expressed concern about future fertility. Access to fertility preservation discussions and services varied dramatically, from 70% in the US and Canada, to only 20-30% in developing countries.

Patient empowerment and advocacy

Patient engagement varied significantly, with the highest rates in North America (75-80%) and the lowest in developing countries (30-40%). Online communities played a crucial role, especially among younger patients, with 40% of respondents globally using online resources for support.

The survey revealed significant disparities in care, support, and outcomes for young breast cancer survivors across different regions. Key areas for improvement include:

Enhancing early detection and access to advanced diagnostics in low- and middle-income countries.
Improving access to comprehensive treatment options, including targeted therapies, globally.
Integrating mental health support into standard cancer care protocols worldwide.
Addressing financial toxicity through improved insurance coverage and financial support systems.

Increasing awareness and access to fertility preservation options for young patients.
Developing culturally sensitive approaches to addressing body image and sexuality issues.
Leveraging digital platforms to expand access to support and information, particularly in underserved areas.
Integrating patient voices more fully into healthcare decision-making processes globally.

PROJECT528 provides a robust foundation of information to inform targeted efforts to enhance the lives of young breast cancer survivors worldwide. The findings underscore the need for global collaboration to address disparities and improve care for this unique patient population across diverse geographic and cultural contexts.

Introduction

Breast cancer in young women is a complex and challenging disease that occurs at a critical time in their lives, often during peak years of career development, family formation, and personal growth. While the unique challenges faced by young breast cancer survivors have long been recognized, comprehensive global data on their experiences and needs has been lacking. PROJECT 528, named after the estimated 528,018 young adults impacted by breast cancer worldwide, represents a groundbreaking effort to address this critical gap in knowledge and understanding.

Initiated as a collaborative effort between Young Survival Coalition (YSC) and Europa Donna Slovenia (ED-S), PROJECT 528 aims to conduct the first-ever worldwide needs assessment of young adults impacted by breast cancer. This initiative emerged from years of advocacy and engagement at international breast cancer conferences, particularly the Breast Cancer in Young Women Conference (BCY) series, where the need for such a comprehensive survey was identified and endorsed by leading experts in the field.

It is crucial to understand that PROJECT 528 was not conceived to dictate global priorities or to determine YSC’s global activities. Rather, this survey and resulting data were born out of the recognition that no one else was undertaking this vital work. The primary goal of PROJECT 528 is to raise awareness of the challenges young adults with breast cancer face globally and to highlight the unmet needs they are experiencing. By capturing and sharing this data, we aim to educate and empower the global healthcare community with relevant information to improve health outcomes for this unique population.

PROJECT 528 seeks to ignite interest and action within the global community around the specific needs of young breast cancer patients and survivors (referring to those diagnosed with early-stage as well as those living with metastatic breast cancer). By providing this comprehensive data, we hope to equip healthcare providers, researchers, policymakers, and advocacy groups with the information they need to set priorities that meet the specific needs of their local communities.

The global burden of breast cancer in young adults is significant and geographically diverse. According to the International Agency for Research on Cancer’s Globocan 2018 data, the 5-year prevalence of those diagnosed with breast cancer before the age of 40 is distributed across various regions: 39% in Asia, 25% in Europe, 14% in North America, 12% in Latin America and the Caribbean, 8% in Africa, and 1% in Oceania. This distribution underscores the importance of a truly global approach to understanding and addressing the needs of this population.

Young breast cancer survivors face a unique set of challenges that distinguish their experiences from those of older patients depending on socioeconomic factors and geographical location, particularly in low and middle-income countries. Access to advanced diagnostic tools and comprehensive treatment options varied dramatically depending on socioeconomic factors. This disparity correlated strongly with stage at diagnosis, leading to more late-stage diagnoses in resource-limited settings. Financial toxicity emerged as a major concern across all regions but was particularly severe in low and middle-income countries, where up to 90% reported significant financial distress. Employment impacts were more pronounced in countries with less robust labor protection laws. Access to mental health support varied dramatically, from 60% in the United States to below 20% in most developing countries. These disparities extended to fertility preservation, with access to related discussions and services ranging from 70% in North America to only 20-30% in developing countries.

Other challenges include concerns about fertility and family planning, the impact on young children, disruptions to education and career progression, recurrence and long-term effects of treatment that must be managed for decades. Additionally, young survivors often face a higher risk of aggressive cancer subtypes and may experience more severe psychosocial impacts due to the life stage at which they are diagnosed.

Through PROJECT 528, we hope to provide a platform for young breast cancer survivors’ voices to be heard and their experiences to be recognized on a global scale. By sharing this data, we aim to catalyze research, improve care practices, and foster the development of support systems tailored to the unique needs of young adults with breast cancer across diverse geographic and cultural contexts.

As we present the findings of PROJECT 528, we invite the global healthcare community to use this data as a starting point for further investigation, policy development, and improvement of care practices. Our goal is not to prescribe solutions, but to provide a robust foundation of information that can inform and inspire targeted efforts to enhance the lives of young breast cancer survivors worldwide.

“Fear of recurrence consumes me daily. Although mental health support was recommended, access was limited, and stigma made it hard to seek help openly. I leaned heavily on spirituality and family support.”

Methodology

PROJECT 528 employed a comprehensive and collaborative approach to create, implement, and analyze a global needs assessment survey of young adults diagnosed with breast cancer. The methodology was designed to ensure broad representation across geographic regions, cultures, and healthcare systems, while maintaining scientific rigor and ethical standards.

The survey was developed through a collaborative process involving global thought leaders, healthcare providers, industry representatives, and patient advocates. A Global Collaborative was formed to play an advisory role in the development of the survey, ensuring that it addressed key areas of concern for young breast cancer survivors while being culturally sensitive and globally applicable.

The survey covered a wide range of topics including demographics, diagnosis experience, treatment access and understanding, psychological impacts, financial issues, fertility concerns, supportive care needs, and patient empowerment. Questions were designed to capture both quantitative data and qualitative insights into the lived experiences of young survivors.

Global Ambassadors, consisting of breast cancer patient community leaders, survivors, and caregivers around the globe, were recruited to act as liaisons between the project and constituents in their state, region, or country. This approach helped ensure diverse representation and cultural relevance. Global Influencers, including individuals and organizations committed to spreading awareness about the initiative, supported the widespread distribution of the survey. They pledged to support the worldwide distribution of PROJECT 528, helping to reach a broad and diverse participant base.

The survey was distributed globally through multiple channels, including patient advocacy organizations, healthcare providers, social media platforms, and online communities. The survey was conducted online, translated into 14 languages (Arabic, Castilian, Chinese, English, French, German, Greek, Hindi, Hungarian, Italian, Japanese, Portuguese, Spanish and Turkish) to ensure accessibility. Data collection occurred over two years, allowing for broad participation across different time zones and regions.

As this was a non-interventional, anonymous patient survey, distributed by the patient associations themselves, and not initiated or funded by a research or educational institution, no ethical review was required. Participant anonymity was ensured, and informed consent was obtained from all respondents. The project was committed to safeguarding all participants and ensuring the ethical use of collected data.

Data analysis was conducted using a mixed-methods approach, combining quantitative analysis with qualitative thematic analysis of open-ended responses. Comparative analyses were performed to identify regional variations and correlations between different factors.

Key areas of analysis included:

Demographic patterns and their correlations with cancer experiences.
Disparities in access to diagnostics, treatments, and supportive care.
Psychological and social impacts across different cultures and healthcare systems.

Financial toxicity and its implications for treatment and quality of life.
Patient empowerment and engagement in different healthcare contexts.
Awareness of access to clinical trials across regions.

Preliminary findings were reviewed by the Collaborative and other experts in the field to ensure accuracy and relevance. This process helped identify any potential biases or limitations in the data analysis.

The results of the survey are being compiled into this detailed preliminary report, infographic and an interactive dashboard for wide dissemination through academic publications, presentations at international conferences, and accessible summaries for patient advocacy groups and policymakers.

PROJECT 528 aims to provide a comprehensive and nuanced understanding of the global landscape of young breast cancer survivorship, laying the groundwork for targeted interventions and improvements in care worldwide.

Limitations

There are several limitations that should be considered when interpreting the results and drawing conclusions about the experiences of young adults with breast cancer. These limitations stem from various aspects of the survey design, data collection, and the nature of the respondent pool.

Firstly, the geographical distribution of respondents appears to be uneven, with a significant number of responses coming from the United States. This imbalance in representation limits the global applicability of the findings. The predominance of responses from certain countries could lead to conclusions that are more reflective of those specific healthcare environments rather than providing a truly global perspective on young adult breast cancer experiences.

The method of survey distribution and access could also introduce bias. If the survey was primarily distributed through online channels or breast cancer support networks, it might have reached a more engaged and digitally connected subset of patients. This could lead to an overrepresentation of individuals who are more proactive in their care or have better access to information and support services. Conversely, it might underrepresent those who are more isolated, have limited internet access, or are less connected to support networks.

The self-reported nature of the data introduces the potential for recall bias, especially for respondents who were diagnosed several years ago. The accuracy of information regarding diagnosis details, treatment experiences, and timeline of events may vary depending on the individual’s memory and the time elapsed since their diagnosis. This could affect the reliability of some of the reported experiences and outcomes.

Another limitation is the potential for selection bias. Participants who chose to complete the survey may have had more extreme (either positive or negative) experiences with their diagnosis and treatment, which could lead to an overrepresentation of these perspectives in the results. Those with neutral experiences or those who have moved on from their cancer experience might be less likely to participate, potentially skewing the overall picture of young adult breast cancer experiences.

The survey’s structure, while comprehensive, may not capture the full complexity of individual experiences. Fixed-choice questions, while necessary for quantitative analysis, may sometimes force respondents to select options that do not perfectly match their unique situations. This could lead to oversimplification of some issues and may not fully reflect the nuanced experiences of young adults with breast cancer.

The cross-sectional nature of the survey provides a snapshot of experiences at a single point in time, which may not fully capture the evolving nature of the cancer journey, including long-term survivorship issues or changes in perspective over time. This limitation makes it difficult to understand how patients’ needs, perspectives, and challenges may change throughout their cancer journey and beyond.

The varying levels of healthcare literacy among respondents could also impact the reliability of some responses, particularly those related to medical details of their diagnosis and treatment. This could lead to inconsistencies or inaccuracies in the reported medical information.

Lastly, the survey’s focus on young adults with breast cancer, while valuable, means that the findings cannot be generalized to other age groups or cancer types. The unique challenges faced by this demographic may not be representative of the broader cancer patient population.

Despite these limitations, the survey provides a wealth of information that can inform healthcare providers, policymakers, and support organizations about the unique challenges faced by young adults with breast cancer. By acknowledging these limitations, researchers and stakeholders can interpret the results more accurately and identify areas for future, more targeted research to address gaps in understanding and support for this population.

Results

Demography of Respondents

The survey demonstrated a truly global reach, capturing responses from young breast cancer survivors across a wide range of countries and continents. Participants hailed from diverse geographic locations (from 67 countries – Figure 1). This broad international representation provided a rich tapestry of experiences, reflecting the varied cultural, socioeconomic, and healthcare contexts in which young breast cancer survivors navigate their diagnosis and treatment. The global nature of the survey allowed for valuable cross-cultural comparisons and highlighted both universal challenges faced by young survivors worldwide and region-specific issues. For instance, while certain emotional and physical impacts of breast cancer were consistently reported across all regions, access to advanced treatments, support services, and financial implications varied significantly between high-income and low- to middle-income countries. This global perspective is crucial for understanding the complex, multifaceted nature of young breast cancer survivorship and for informing international efforts to improve care and support for this population.

The survey captured a diverse group of young breast cancer survivors from various regions globally, providing a comprehensive view of the experiences and challenges faced by this unique population. The age range of respondents was primarily between 25 and 45 years old, with an average age of approximately 36 +/- 6 at diagnosis. This demographic is particularly significant as it represents women who are often in the prime of their careers and family-building years, adding layers of complexity to their cancer experience.

The educational background of respondents varied widely, reflecting global disparities in access to education. In Western countries such as the United States, Canada, Australia, New Zealand and Western Europe, a larger proportion of respondents held bachelor’s degrees or higher (approximately 60-70%). This contrasts sharply with developing countries, where the rate of higher education among respondents was notably lower (30-40%). This educational disparity may have significant implications for health literacy, access to information, and the ability to navigate complex healthcare systems.

Employment status emerged as a critical factor in the survey, highlighting the profound impact of breast cancer on young women’s careers. Prior to diagnosis, about 70% of respondents were employed full-time or part-time. However, this number dropped significantly post-diagnosis, with only about 50% maintaining employment. The impact was more severe in countries with less robust labor protection laws. For example, in the United States, despite having some of the best medical care, respondents reported higher rates of job loss or reduction in work hours (around 40%) compared to countries like Sweden or Germany (around 25%).

Family status played a crucial role in the experience of young survivors. Approximately 65% of respondents had children, with about half of those having children under the age of 10 at the time of diagnosis. This added significant stress and complexity to their cancer journey, particularly in managing childcare during treatment and concerns about long-term impacts on their families. The survey may reveal that many young mothers faced unique challenges in balancing their treatment with caring for young children, most likely leading to increased emotional distress and financial strain.

The survey also captured data on marital status, though this varied significantly across cultures. In Western countries, about 60% of respondents were married or in long-term partnerships at the time of diagnosis. However, in some Asian and Middle Eastern countries, this percentage was higher, often exceeding 80%. Worth noting, the survey noted that about 48% of respondents reported changes in romantic relationships post-diagnosis.

Ethnicity and race were also important factors in the survey, though the distribution varied greatly depending on the country of origin. In multicultural societies like the United States, Canada, and Australia, the survey captured a more diverse ethnic mix, which allowed for some analysis of how race and ethnicity intersect with breast cancer experiences. For instance, women of African descent, regardless of their country of residence, reported higher rates of aggressive breast cancer subtypes, highlighting the importance of considering genetic and racial factors in breast cancer research and treatment globally.

Socioeconomic status, while not explicitly measured, could be inferred from factors such as education level, employment status, and reported financial impacts. The survey revealed that breast cancer had a more severe financial impact on women from lower socioeconomic backgrounds, often leading to long-term financial instability.

Overall, the demographic data from the survey underscores the complex and multifaceted nature of the young breast cancer survivor experience, highlighting the need for tailored support systems and policies that address the unique challenges faced by this population across different cultural and socioeconomic contexts.

Static-Viz-5B 2026

Diagnosis

Based on the survey data and analysis provided, the diagnosis experience of young breast cancer survivors reveals a complex and multifaceted landscape with significant variations across geographic regions, cultures, and socioeconomic backgrounds. The detection and initial symptoms play a crucial role in early diagnosis, with breast self-examination and awareness being particularly important for young women. Globally, 70-80% of respondents reported detecting their cancer through a hard lump as the first sign. However, awareness of less common symptoms varied considerably between developed and developing countries, reflecting disparities in health education and breast cancer awareness campaigns.

In developed countries like the United States, Canada, Australia, New Zealand and Western Europe, awareness of less common symptoms such as skin changes, nipple discharge, or dimpling was notably higher, with 60-70% of respondents reporting familiarity with these signs. In contrast, this awareness dropped to 30-40% in many developing countries, particularly in parts of Africa and South Asia. Interestingly, some Asian countries, particularly Japan and South Korea, reported higher awareness of subtle changes like skin texture alterations (70-75%), possibly due to targeted public health campaigns. This geographic variation in symptom awareness highlights the need for tailored education programs that consider cultural contexts and existing healthcare infrastructures.

The survey revealed a concerning trend of symptom dismissal or delay in seeking medical attention, especially among younger women. Approximately 40% of respondents reported delaying seeking medical attention after noticing symptoms. This delay was more pronounced in regions with lower breast cancer awareness and in cultures where discussing breast health is taboo. For instance, in parts of the Middle East and North Africa, up to 60% of young women reported delaying seeking help due to cultural stigma. This data underscores the critical need for culturally sensitive awareness campaigns and the breaking down of societal taboos surrounding breast health.

Reasons for delay varied geographically, reflecting different societal norms and healthcare systems. In the United States and Western Europe, the most common reason for delay (cited by 50% of those who delayed) was the belief that they were too young for breast cancer. This highlights a critical gap in public understanding of breast cancer risk in young women. In developing countries, lack of access to healthcare (40%) and financial concerns (35%) were more prominent reasons for delay. This disparity points to the need for not only education but also improvements in healthcare accessibility and affordability in lower socioeconomic regions and less developed regions.

The average time from first symptom to diagnosis varied widely, typically 4-6 weeks in the US, Canada, and Western Europe, but extending to 3-6 months on average in parts of Africa, South Asia, and South America, with some cases taking over a year. This delay in diagnosis can significantly impact prognosis and treatment options. Notably, even in Western countries, younger women reported longer times to diagnosis, often due to initial dismissal of their concerns by healthcare providers. This trend was consistent across regions, suggesting a global need for increased awareness among healthcare professionals about breast cancer in young women.

Misdiagnosis or delayed diagnosis was reported by about 30% of respondents globally. In regions with limited access to specialized breast cancer centers, misdiagnosis rates were significantly higher, reaching up to 40% in some parts of Africa and South Asia. This data highlights the critical importance of specialized training for healthcare providers and the need for improved diagnostic protocols, particularly in resource-limited settings.

The diagnostic process revealed significant disparities across different regions, particularly in access to advanced diagnostic tools (Figures 2 and 3). In high-income countries, access to advanced diagnostic tools like genetic testing, MRI, and digital mammography was relatively high (70-80% of respondents). In contrast, in many low- and middle-income countries, access to these technologies was severely limited, often below 20%. This disparity correlated strongly with stage at diagnosis, with earlierstage diagnoses more common in areas with better access to advanced diagnostics. Access to genetic testing and risk assessment varied widely across regions. In high-income countries, particularly the US and Western Europe, about 60% of respondents reported being offered genetic testing. This number dropped to less than 20% in many developing countries. The availability of genetic testing correlated with earlier detections in high-risk individuals and more personalized treatment approaches. This disparity in access to genetic testing not only affects individual patient care but also impacts our global understanding of breast cancer genetics, potentially skewing research data towards populations in developed countries.

chart visualization

The stage at diagnosis showed significant regional variations, which correlated strongly with the availability and accessibility of screening programs and advanced diagnostic tools. In countries with well established screening programs, such as the United States, Canada, and Australia, a higher proportion of respondents were diagnosed at earlier stages (Stage 0-II, around 70%). In contrast, in many developing countries and even some parts of Eastern Europe, late-stage diagnoses (Stage III-IV) were more common, sometimes exceeding 50% of cases. This stark difference in stage at diagnosis has profound implications for treatment options, survival rates, and quality of life for young breast cancer survivors.

The most common type of breast cancer reported was Invasive Ductal Carcinoma (IDC), accounting for approximately 70-80% of cases across all regions. However, there were notable variations in hormone receptor status. Triple-negative breast cancer, which is often more aggressive and has fewer treatment options, was reported more frequently in younger women and women of African descent, regardless of their country of residence. This finding highlights the importance of considering genetic and racial factors in breast cancer research and treatment globally, and the need for targeted research into the biological factors contributing to these disparities.

The manner in which diagnoses were communicated varied widely and had a significant impact on patients’ understanding of their condition. Key factors influencing satisfaction with diagnosis communication included time spent explaining the diagnosis, use of visual aids, presence of a support person, and provision of follow-up resources. Cultural differences in communication styles were evident, with some Asian countries showing a higher tendency to communicate diagnoses to family members first. Western countries generally prioritized direct communication with the patient. These cultural variations highlight the need for culturally competent communication training for healthcare providers working with diverse populations (Figures below).

chart visualization

Language barriers were a significant issue in multicultural societies. In countries like the United States, Canada, and Australia, non-native English speakers reported lower satisfaction ratings with diagnosis communication (40% compared to 65% for native speakers). This linguistic divide underscores the importance of professional medical interpretation services and multilingual patient education materials in ensuring equitable care for diverse populations.

The level of understanding of one’s diagnosis varied significantly across educational levels and regions. Globally, only about 55% of respondents reported fully understanding their diagnosis and treatment plan. This number was higher in English-speaking countries (70% in the US, UK, and Australia) and lower in non-English speaking and developing countries (as low as 30% in some regions). Education level correlated strongly with understanding, with university-educated respondents reporting better comprehension (75%) compared to those with only primary education (40%). This educational disparity highlights the need for tailored patient education strategies that consider varying levels of health literacy.

chart visualization

“Insurance delays or denial of necessary scans significantly prolonged the time to diagnosis. Fear of bad news and avoidant behavior further kept me from seeking help earlier.”

Conclusion

The diagnosis experience of young breast cancer survivors is characterized by significant disparities across geographic, cultural, and socioeconomic lines. While advances in diagnostic technologies and awareness campaigns have improved early detection in many areas, significant challenges persist, particularly in developing countries and among younger age groups. The data underscores the need for increased awareness of breast cancer symptoms in young women, improved access to advanced diagnostic tools, better communication strategies for delivering diagnoses, and addressing socioeconomic barriers to timely and accurate diagnosis. As the incidence of breast cancer in young women continues to rise globally, addressing these challenges becomes increasingly crucial for improving outcomes and quality of life for this unique patient population. Future efforts should focus on reducing disparities, improving global access to advanced diagnostics, and developing cost-effective and efficacious detection screening for this population.

Treatment Approaches and Variations

The survey revealed significant variations in treatment approaches across different regions, reflecting disparities in healthcare systems and access to advanced therapies. In western countries, there was a huge difference regarding the number of options that the patients can choose from (47% in the US, 44% in Canada, 32% in Australia and New-Zealand), while only 21% in Western Europe of patients have more than 1 treatment approach to choose from. This number plunges to 17% in Central and Eastern Europe. While it is around 25% to 36% in other regions of the world.

In low- and middle-income countries, treatment was often limited to surgery and chemotherapy, with less access to newer targeted therapies or immunotherapies. For instance, while over 70% of eligible patients in high-income countries reported access to targeted treatments like HER2-targeted therapies, this number dropped to below 10% in many low-income countries. This disparity in access to advanced treatments correlated strongly with both stage at diagnosis and overall survival rates.

8 Shankar A, Roy S, Rath GK, Chakraborty A, Kamal VK, Biswas AS. Impact of Cancer Awareness Drive on Generating Understanding and Improving Screening Practices for Breast Cancer: a Study on College Teachers in India. Asian Pac J Cancer Prev. 2017 Jul 27;18(7):1985-1990. doi: 10.22034/APJCP.2017.18.7.1985. PMID: 28749636; PMCID: PMC5648409.

Surgery Options

Surgical options varied widely across regions. In high-income countries, breast-conserving surgery (lumpectomy) was more common, especially for early-stage cancers, with rates around 60-70%. However, in many developing countries, mastectomy remained the predominant surgical approach, often due to limited access to radiation therapy facilities necessary for breast conservation.

Chemotherapy and Targeted Therapies

Chemotherapy remained a cornerstone of treatment across all regions, but the types and combinations of drugs varied. In high-income countries, newer generation chemotherapies and personalized regimens based on genomic testing were more common. For instance, about 60% of respondents in the US and Western Europe reported receiving genomic testing to guide treatment decisions, compared to less than 20% in developing countries.

Access to targeted therapies showed the starkest disparity. While HER2-targeted therapies like trastuzumab were standard of care for HER2-positive breast cancers in developed countries, with over 90% of eligible patients receiving them, access was severely limited in low-income countries, often below 20%. This disparity had significant implications for survival rates in HER2-positive breast cancers across different regions.

Radiation Therapy

Access to radiation therapy varied significantly. In high-income countries, about 70-80% of respondents who had breast-conserving surgery reported receiving radiation therapy. However, in many low- and middle-income countries, this rate was much lower, often below 40%. The lack of radiation facilities in many regions was a significant barrier, often necessitating mastectomy even for early-stage cancers that could have been treated with breast conservation.

Hormone Therapy

For hormone receptor-positive breast cancers, endocrine therapy was widely prescribed across all regions. Factors influencing adherence included side effect management, cost of medications, and ongoing patient education and support.

Treatment Understanding and Decision-Making

Treatment understanding was a critical issue across all regions. Globally, only about 55% of respondents felt they fully understood their treatment plan. This number was higher in English-speaking countries (around 70% in the US, UK, and Australia) and lower in non-English speaking countries and regions with lower overall education levels (as low as 30% in some developing countries).

Factors influencing treatment understanding included:

Education level: Respondents with higher education levels reported better understanding of their treatments.
Quality of patient education materials: Countries where hospitals provided comprehensive, easy-to-understand materials saw higher rates of patient understanding.
Time spent with healthcare providers: Longer and more frequent consultations were associated with better understanding.

The level of patient involvement in treatment decision-making also varied. In Western countries, particularly the US and Canada, about 70% of respondents reported being actively involved in treatment decisions. This percentage was lower in Eastern European countries (40-50%) and significantly lower in many Asian and African countries (20-30%), reflecting cultural differences in doctor-patient relationships and healthcare systems.

“I relied on alternative therapies like acupuncture and massage to cope with treatment side effects. These, alongside limited, but essential mental health resources, were critical to my recovery.”

Side Effects and Supportive Care

Side effects of treatment were reported universally, but management and support varied. Fatigue was the most commonly reported side effect (over 90% of respondents), followed by hair loss, nausea, and cognitive issues (“chemo brain”). However, access to supportive care to manage these side effects varied greatly.

The survey also revealed significant disparities in access to mental health support during treatment. In the United States, about 60% of respondents reported access to mental health services as part of their cancer care. This number dropped to 30-40% in many European countries and below 20% in most developing countries.

Access to Innovative Treatments

Access to clinical trials showed significant regional variation. In the United States, about 30% of respondents reported being offered participation in a clinical trial. This number was lower in Western Europe (20-25%) and significantly lower in developing countries (5-10%). This unequal access to clinical trials not only impacts the treatment options and potential outcomes for individual breast cancer patients but also creates far-reaching consequences for global breast cancer research. The limited participation from developing countries can lead to a bias in research data, as studies predominantly reflect the experiences and responses of patients from developed nations. This skewed representation may result in findings that are not fully applicable to diverse populations worldwide, potentially overlooking genetic, environmental, or lifestyle factors specific to underrepresented regions. Consequently, this disparity could hinder the development of truly global and inclusive treatment strategies for breast cancer.

Interestingly, among patients who were well-informed about clinical trials, interest was high (70-80%), with many citing a desire to help future patients as motivation. This suggests that improving education and awareness about clinical trials could significantly increase participation rates globally. However, our data shows that 70% of patients globally were not asked to participate in clinical trials by their medical team, and when asked, 34% were approached by their doctors, and 11% by their nurses. The results clearly indicate a need for a better training for providers to initiate those conversations.

Treatment Costs and Financial Impact

The financial impact of breast cancer treatment varied dramatically across regions. In the United States, despite having some of the most advanced treatments available, respondents reported the highest rates of financial distress (80%), largely due to medical costs and loss of income. In countries with universal healthcare, like Canada, the UK, and Australia, the financial impact was lower, but still significant (60-65%), mainly due to loss of income and incidental expenses.

The financial security of patients was evaluated before, during, and after medical treatment using a scale ranging from not secure at all to fully secure. The findings highlighted notable geographical differences. Globally, financial security significantly declined during treatment and only slightly recovered afterward. In the United States, the pattern closely resembled the global average. Western Europe demonstrated consistently higher levels of financial security throughout the treatment process. Canada initially showed the highest pre-treatment security but experienced a sharp decline during treatment, with some recovery afterward. In contrast, Africa and Central/South America reported the lowest financial security levels, with significant challenges persisting during and after treatment.

MBC Global data

These figures highlight that financial security generally decreased during treatment and slightly improved afterward, but remained below pre-treatment levels in most regions, with developing areas experiencing the most severe financial insecurity.

Conclusion

These figures highlight that financial security generally decreased during treatment and slightly improved afterward, but remained below pre-treatment levels in most regions, with developing areas experiencing the most severe financial insecurity.

“Better social security nets are urgently needed to prevent financial devastation for those seriously ill. Limited access to mental health resources, often unaffordable, adds to the financial strain.”

Clinical trial awareness, interest and access

Clinical trial participation plays a crucial role in advancing breast cancer research and treatment, but the survey revealed significant disparities in awareness, interest, and access across different regions and demographics. On average, 40% of respondents were aware of clinical trials, with 60% of those aware expressing interest in participation (Figures 6 and 7). However, only 20% had actually been offered participation in a trial. This gap between awareness, interest, and actual participation highlights a significant missed opportunity in breast cancer research and treatment advancement.

Regional variations in clinical trial awareness and access were stark. In the United States, approximately 60% of patients were aware of clinical trials, with 30% being offered participation. These figures dropped dramatically in developing countries, where awareness was as low as 20-30%, with only 5-10% of patients being offered participation. This disparity not only affects individual patient outcomes but also has broader implications for global breast cancer research, potentially biasing research data towards populations in developed countries, and therefore overlooking genetic, environmental, lifestyle and sociological factors specific to the population in low and middle income countries.

Education level and geographic location were key factors influencing awareness and access to clinical trials. Respondents with higher education levels, particularly those with college degrees or higher, reported greater awareness of clinical trials (70-80%) compared to those with high school education or less (30-40%). This educational disparity was consistent across all regions but was particularly pronounced in low- and middle income countries.

Age and disease stage also played a role in clinical trial access. Younger patients (under 40) and those with metastatic disease were more likely to be offered trial participation. This trend was consistent across regions but was more pronounced in countries with more developed research infrastructures.

The role of healthcare providers in clinical trial awareness and access was crucial. Oncologists were reported as the primary source of information about trials in most cases (70%). However, the survey indicated that many healthcare providers, particularly in less developed regions, may lack up-to-date information about available trials or may not prioritize discussing trial options with patients. In the United States and Western Europe, about 60% of patients reported that their oncologist had discussed clinical trials with them, compared to only 20-30% in many developing countries.

Patient advocacy groups and online communities played an increasingly important role in clinical trial awareness, especially among younger patients. About 30% of respondents reported learning about clinical trial opportunities through these channels, highlighting the potential of digital platforms in bridging information gaps.

The survey also revealed a concerning trend of racial and ethnic disparities in clinical trial access, particularly in diverse countries like the United States. African American and Hispanic patients reported lower rates of trial offers (20% and 25% respectively) compared to white patients (35%), even when controlling for factors like education and income.

Globally, there was a notable difference in the types of trials available. High-income countries had a more diverse range of trials, including early-phase studies and trials for novel therapies. In contrast, trials in low- and middle-income countries were more likely to be later-phase studies or trials comparing established treatments.

“Despite my interest in clinical trials, no one discussed them with me. I only learned about trials from online communities, but by then, it was too late to join one.”

Conclusion

In conclusion, while clinical trials offer significant potential benefits for both individual patients and the broader field of breast cancer research, substantial barriers to awareness, access, and participation persist. Addressing these disparities through improved patient education, healthcare provider training, and more inclusive trial design and recruitment strategies could significantly enhance the global landscape of breast cancer research and treatment.

chart visualization

Psychological impact

The psychological impact of breast cancer on young survivors is profound and multifaceted, affecting various aspects of their lives across different regions globally. The survey reveals that the emotional, mental health and social challenges faced by these women are universal (Figure 8), yet the intensity and manifestation of these issues vary significantly based on cultural, socioeconomic, and healthcare system factors.

Globally, an overwhelming 80% of respondents reported experiencing significant psychological distress following their breast cancer diagnosis. This high prevalence was consistent across all regions, indicating that the emotional impact of breast cancer transcends geographical and cultural boundaries. However, the nature and severity of this distress showed regional variations.

Anxiety and depression emerged as the most common mental health issues among young breast cancer survivors. Approximately 70% of respondents globally reported experiencing clinical levels of anxiety, with the highest rates observed in North America (75%) and Western Europe (72%). This may be due to greater awareness and reporting of mental health issues in these regions. Lower reported rates in some Asian (60%) and African (55%) countries may be attributed to cultural stigma surrounding mental health discussions rather than a true lower incidence. About 50% of respondents reported experiencing depression, with rates highest in the United States (55%) and Canada (53%). Interestingly, some Scandinavian countries reported lower rates of depression (around 40%), possibly due to stronger social support systems and universal healthcare.

Fear of recurrence of cancer was nearly universal, with 90% of survivors reporting this as an ongoing concern, even years after treatment. This fear showed some interesting regional patterns. It was most intense in countries with higher survival rates, such as the United States, Canada, and Western European nations (95-98% reporting this fear). In countries with lower survival rates, particularly in parts of Africa and South Asia, the fear of recurrence was still high but slightly lower (80-85%). This could be due to a more immediate focus on current survival rather than long-term concerns.

Breast cancer profoundly affects young survivors’ psychological well-being, particularly in areas of body image, sexuality, and fertility. Globally, 75% of respondents reported negative impacts on body image, with rates reaching 80-85% in Western and some Asian countries. These concerns were often linked to cultural pressures and media influences, causing significant emotional distress. Sexuality and intimate relationships were also heavily impacted, with 60% reporting negative effects. This led to feelings of inadequacy and relationship strain, compounded by a lack of support in many regions. Fertility concerns emerged as a major source of anxiety, with 75% of young women expressing worry about future childbearing. This uncertainty about fertility often resulted in long-lasting emotional impact, affecting life planning and relationships.

Access to mental health support varied dramatically across regions, significantly impacting psychological outcomes. In the United States, about 60% of respondents reported access to mental health services as part of their cancer care. This number dropped to 30-40% in many European countries and below 20% in most developing countries. Cultural attitudes towards mental health played a significant role in the utilization of available services.

The financial impact of breast cancer treatment had a significant correlation with psychological distress, varying greatly across healthcare systems. In the United States, despite having some of the most advanced treatments available, respondents reported the highest rates of financial distress (80%), which strongly correlated with higher rates of anxiety and depression. In countries with universal healthcare, financial distress was lower but still significant (60-65%), mainly due to loss of income and incidental expenses. In developing countries, financial toxicity was often catastrophic, with up to 90% reporting severe financial distress, leading to extremely high levels of anxiety and depression.

The survey revealed interesting patterns in coping mechanisms and resilience across different cultures. In Western countries, there was a higher tendency to seek professional help and engage in support groups. In many Asian countries, family support was more prominently reported as a primary coping mechanism. Spirituality and religious practices were more commonly reported as coping strategies in African and Middle Eastern countries.

Conclusion

In conclusion, the psychological impact of breast cancer on young survivors is profound and multifaceted, with significant variations across different regions of the world. While some aspects of this impact, such as fear of recurrence and body image concerns, appear to be nearly universal, the intensity and manifestation of these issues are heavily influenced by cultural norms, healthcare systems, and socioeconomic factors. The data underscores the critical need for integration of mental health services into standard cancer care protocols globally, culturally sensitive approaches to addressing psychological distress in diverse populations, increased awareness and destigmatization of mental health issues related to cancer survivorship, improved access to supportive care services, particularly in developing countries, and greater attention to the longterm psychological needs of survivors, extending well beyond the active treatment phase.

chart visualization

Employment and financial impact

The financial and employment impact of breast cancer on young survivors was substantial across all regions, but with significant variations in severity and available support systems. Globally, 60% of respondents reported negative impacts on their employment status, with the severity of impact varying based on healthcare systems, labor laws, and social support structures.

In the United States, 50% of respondents reported negative employment impacts. This high rate was often attributed to the complex interplay between employment and health insurance coverage in the U.S. system. Many women reported fear of losing their jobs due to extended absences or reduced capacity to work, which would in turn result in loss of health insurance at a critical time.

Western European countries showed slightly lower negative employment impacts, with about 40 to 45%. This lower rate was likely due to stronger social support systems and more robust labor laws protecting employees during illness. However, even in these countries, young survivors often faced challenges in career progression and long-term earning potential.

In developing countries, the employment impact was more severe, with up to 70% reporting significant negative effects. This higher rate was often due to less formal employment structures, weaker labor protections, and the physical demands of many jobs in these economies.

“I lost my job due to extended treatment absences. Returning to work was daunting, with colleagues not understanding my limitations. Cancer impacts your career in ways no one prepares you for.”

The nature of employment changes varied:

Job loss was reported by 25% of respondents globally, with higher rates in countries with less robust labor protections.
Reduction in work hours was common, affecting 40% of those who remained employed.
Career progression was impacted, with 50% reporting that their cancer diagnosis and treatment had negatively affected their career advancement opportunities.

The financial impact of breast cancer treatment was profound and varied significantly across different healthcare systems:

In the United States, respondents reported the highest rates of financial distress (80%), largely due to medical costs and loss of income. Even with insurance, many faced significant out-of-pocket expenses and struggled with high deductibles and co-pays.
In countries with universal healthcare, like Canada, the UK, and Australia, the financial impact was lower but still significant (60-65%), mainly due to loss of income and incidental expenses not covered by healthcare systems, such as travel costs for treatment, childcare, and supportive care services.
In developing countries, the financial impact was often catastrophic, with up to 90% reporting severe financial distress, often leading to long-term debt or depletion of family savings.

Insurance and financial support mechanisms varied widely:

In the US, 70% of respondents had some form of health insurance, but many still faced significant out-of-pocket costs.
In countries with universal healthcare, out-of-pocket costs were lower, but respondents often faced challenges with coverage for newer treatments or supportive care.
In developing countries, health insurance coverage was much lower (often below 30%), leading to higher reliance on personal savings, family support, or charity.

The long-term financial effects were significant:

Globally, 50% of respondents reported ongoing financial challenges even years after treatment, including difficulty rebuilding savings and career setbacks.
In all regions, younger survivors reported more severe long-term financial impacts, likely due to interrupted career progression at a critical stage.

The survey revealed that financial toxicity had a significant impact on treatment decisions and adherence. In the US, about 15% of respondents reported declining or delaying a recommended treatment due to cost concerns. This number was lower in countries with universal healthcare (5-7%) but significantly higher in countries without comprehensive health coverage (up to 30% in some cases).

Conclusion

Overall, the data underscores the need for comprehensive financial support systems for young breast cancer survivors, including better job protection laws, improved health insurance coverage, and financial counseling services. The economic impact of breast cancer extends far beyond the immediate treatment phase, affecting long-term financial stability and career trajectories of young survivors across the globe.

Impact on body image, sexuality, fertility issues, awareness and access to solutions.

Body Image

Concerns about body image and changes in physical appearance were reported by 75% of respondents globally, as a significant and pervasive issue for young survivors across all regions but with significant regional variations. Western countries, particularly the United States and Australia, reported the highest rates of body image concerns (80-85%). This may be linked to cultural emphasis on physical appearance and media influences. Some Asian countries, like Japan and South Korea, also reported high rates (75-80%), possibly due to societal pressures and beauty standards. Lower rates were reported in some African and Middle Eastern countries (60-65%), which might be attributed to different cultural norms regarding body image or a greater focus on survival over appearance.

Sexuality

The impact on sexuality was equally significant, with 60% of respondents reporting negative effects on their sex lives and intimate relationships. However, there were notable regional differences in the openness of discussing these issues. Young survivors in Western countries were more likely to report openly about sexual issues (70-75% in US, Canada, and Western Europe). In more conservative societies, particularly in parts of Asia and the Middle East, reporting of sexual issues was lower (40-50%), but this may be due to cultural taboos rather than a lower incidence.

The availability of supportive care services for sexual health issues varied greatly across regions and correlated with better outcomes. In the US and some European countries, about 50% of patients reported access to sexual health support. This dropped to less than 20% in many developing countries. Women who had access to these services reported better sexual function and relationship satisfaction over time.

“The physical changes from surgery were hard to accept, especially in cultures that emphasize appearance. I found little support for dealing with body image concerns or the impact on my intimate relationships.”

Fertility

Fertility issues emerged as a critical concern for young breast cancer survivors, with 75% of respondents expressing worry about their ability to have children in the future. The impact of fertility concerns on quality of life was significant and often long-lasting, affecting decisions about treatment, relationships, and long-term life planning.

Regional variations in fertility concerns were notable:

In countries with advanced reproductive technologies and fertility preservation options (e.g., US, UK, Australia), fertility concerns were high (80-85%) but often accompanied by proactive discussions about preservation options. In countries with limited access to fertility preservation, concern rates were slightly lower (65-70%) but often accompanied by a sense of helplessness or resignation.
Access to fertility preservation discussions and services varied dramatically by region. In the US and Canada, 70% of applicable patients reported discussing fertility preservation with their healthcare providers (Figure 9). This number dropped to 30-40% in many European countries and to only 20-30% in developing countries. This disparity highlights a critical gap in comprehensive care for young breast cancer patients in many parts of the world.
Cultural factors played a significant role in the impact of fertility issues. In some cultures where childbearing is highly valued (e.g., certain Middle Eastern and African countries), fertility concerns were reported to be a major source of distress (85-90%). In countries with lower birth rates and changing family structures (e.g., Japan, Germany), fertility concerns, while still significant, were slightly lower (60-65%).
The cost of fertility preservation emerged as a significant barrier, even in countries where the option was available (Figure 10). In the US, for example, 60% of women who were aware of fertility preservation options reported that cost was a major factor in their decision not to pursue them.
This highlights the need for financial support and insurance coverage for fertility preservation in
cancer patients.
There was a notable gap between the desire for fertility preservation and actual access to these services. While 75% of premenopausal women expressed concern about fertility, only 20% globally reported undergoing any fertility preservation procedures (Figure 11). This gap was widest in developing countries, where the desire for fertility preservation was high but access to services was severely limited.

Interestingly, survivorship concerns related to fertility extended beyond the ability to have children. Many survivors reported ongoing concerns about the potential impacts of their cancer treatment on future pregnancies and the health of future children, indicating a need for long-term follow-up and counseling on these issues.

The lack of information on fertility preservation options at the time of my diagnosis left me feeling helpless. While I was aware of the risks, cost and limited access made pursuing options impossible.”

chart visualization

Conclusion

In conclusion, the impact of breast cancer on body image, sexuality, and fertility is profound for young survivors, with significant variations across regions, cultures, and healthcare systems. The data underscores the critical need for comprehensive, culturally sensitive approaches to addressing these issues, including better integration of body image and sexuality discussions into standard care, improved access to fertility preservation options and information, and long-term support for survivors navigating these challenges. As the incidence of breast cancer in young women continues to rise globally, addressing these aspects of care becomes increasingly crucial for improving overall quality of life for this unique patient population.

Patient engagement, empowerment, online communities, and patient advocacy groups

Patient engagement and empowerment varied significantly across regions and was strongly correlated with education level, access to information, and healthcare system structures. Globally, approximately 60% of respondents felt empowered to participate in treatment decisions, while 50% were aware of patient advocacy groups or support organizations. However, these figures showed substantial regional variation.

The survey revealed that shared decision-making was more common in the USA, Canada, and Western Europe, as was the use of patient portals and digital health tools. However, many patients across all regions reported feeling overwhelmed by the amount of information provided, highlighting the need for better strategies to communicate complex medical information effectively.

Notably, patients who reported higher levels of empowerment also reported better adherence to treatment plans, higher satisfaction with care, and better long-term quality of life outcomes. This underscores the importance of patient empowerment initiatives in improving overall cancer care outcomes.

The role of online communities and digital platforms in patient engagement and support emerged as a significant trend, particularly among younger patients. About 40% of respondents globally reported using online resources for support. This trend was particularly pronounced in regions with limited access to in-person support services, suggesting that digital platforms could play a crucial role in bridging support gaps in underserved areas.

“As a 23-year survivor, I advocate for younger patients to ensure they’re treated with urgency and empathy. Education on what to expect in the next stages is invaluable for empowering patients to navigate their journey.”

The survey indicated that online communities served multiple purposes for young breast cancer survivors:

Many respondents reported using online platforms to access and share information about treatments, side effects, and coping strategies.
Online communities provide a space of emotional support for patients to connect with others facing similar challenges, reducing feelings of isolation.
Some patients used online platforms to raise awareness about breast cancer in young women and advocate for better care and support.

Interestingly, engagement with online communities was correlated with higher levels of patient empowerment and better reported mental health outcomes. Patients who actively participated in online communities were more likely to report feeling informed about their condition and confident in their treatment decisions.

However, the survey also revealed potential drawbacks of online engagement. Some respondents reported feeling overwhelmed by the volume of information available online, and others expressed concerns about the reliability of information shared in these spaces. This highlights the need for moderated, evidence-based online resources specifically tailored to young breast cancer survivors.

Patient advocacy groups played a significant role in supporting and empowering young breast cancer survivors, though their presence and effectiveness varied across regions. In North America and Western Europe, 60-65% of respondents reported engagement with patient advocacy organizations, correlating with better psychological outcomes and higher levels of empowerment.

In many developing countries, access to such organizations was limited, with only 20-30% reporting engagement. This disparity in access to advocacy support correlated with lower levels of patient empowerment and satisfaction with care in these regions.

This trend was particularly pronounced in regions with limited access to in-person support services, suggesting that digital platforms could play a crucial role in bridging support gaps in underserved areas.

The survey revealed several key functions of patient advocacy groups:

Many respondents cited advocacy groups as valuable sources of reliable, accessible information about breast cancer and its treatment.
Advocacy groups often facilitated peer support by connecting survivors, providing emotional support and practical advice.
Some organizations helped patients navigate complex healthcare systems and access resources.
In some regions, advocacy groups played a role in pushing for policy changes to improve care for young breast cancer patients.

Engagement with patient advocacy groups was correlated with several positive outcomes, including better understanding of one’s condition, higher rates of participation in clinical trials, and improved long-term quality of life.

However, the survey revealed significant disparities in the recognition and integration of patient advocacy across different healthcare systems. While some countries had formal structures for including patient voices in healthcare decisions, others lacked such mechanisms entirely.

“Connecting with others who’ve been through the same journey helped me manage the fear of the unknown. While some support groups felt overwhelming, I found valuable tips on managing side effects and balancing family life.”

Conclusion

In conclusion, the data underscores the critical importance of patient engagement, empowerment, and advocacy in improving outcomes for young breast cancer survivors. Online communities and patient advocacy groups emerge as powerful tools for supporting and empowering patients, particularly in underserved areas. However, significant disparities exist in access to these resources, highlighting the need for global efforts to enhance patient empowerment and engagement across all regions. Future initiatives should focus on leveraging digital platforms to expand access to support and information, while also working to integrate patient voices more fully into healthcare decision-making processes worldwide.

chart visualization

Thank You

We sincerely thank all those who contributed to PROJECT 528, a global needs assessment of young adults affected by breast cancer. This initiative, led by Young Survival Coalition (YSC) and championed by Europa Donna Slovenia (ED-S), with support from Red Thred Solutions, addresses a critical gap in understanding the challenges faced by this population. We are grateful to the thousands of young breast cancer survivors from 67 countries who shared their experiences through the survey, providing valuable insights for future care and support systems.

Special thanks to Tanja Spanic, the President of Europa Donna Slovenia and past President of Europa Donna for her vison and help in conceptualizing of this project.

We appreciate the efforts of the Global Ambassadors in ensuring diverse representation and wide distribution of the survey. Thank you to Kim Angell (Canada), Aditya Manna (India), Natsu Kato (Japan), Saltanat Adisbekova (Kyrgyzstan), Jess Weller (New Zealand), Alison Walker (Scotland), Nalisha Monroe (Trinidad and Tobago), Anna Crollman and Tomika Bryant (USA), and Catherine Mooya (Zambia); and to our partners Think Pink Europe (Belgium), Health Bridge Alliance and Kriszti Toth (Hungary), Against Breast Cancer (UK), Joven & Fuerte (Mexico), Borstkanker Vereniging (Netherlands), Sofia Reino (Portugal), Campaigning for Cancer (South Africa) and Ana Ramirez Piris (at Exact Sciences).

Thank you, members of the Global Collaborative, for your invaluable contributions to developing a comprehensive and culturally sensitive survey, namely Naveena Nekkalpudi, Jodie Lydeker at Breast Cancer Now (Australia), Maira Caleffi at Femama (Brazil), MJ DeCouteau at ReThink (Canada), Phillip Odiyo at Faraja Cancer (Kenya), Alexandra Platas at MILC (Mexico), Tanja Spanic at Europa Donna (Slovenia), Conchi Biurrun at FECMA (Spain), Daiichi Sankyo and Pfizer.

The Global Collaborative, including thought leaders, healthcare providers, industry representatives, and patient advocates, was key in developing a comprehensive and culturally sensitive survey.

PROJECT 528 has established a foundation of information to inform efforts to enhance the lives of young breast cancer survivors globally. We acknowledge the limitations of our methodology, including potential geographical and language biases.

Interactive Data Explorer

Read the full reports and view the Interactive Data Explorer.

Explore the Data

Comprehensive Reports

Learn more about the Project 528 methodology and process in the Project 528 First Look report.

Learn More

YSC logo

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

Lilly Logo.

*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