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Voices from Italy:
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.
Italy: Among the 3,881 responses, 89 responses identified as living in Italy. While this number is a small representation of the young adults living with breast cancer in Italy, it provides valuable insight into their experiences.
Key Takeaways
Young age remains a barrier – 17% were told by a healthcare professional they were “too young” for breast cancer, and 15% delayed reporting symptoms due to factors like age, lack of family history, or lack of time.
Employment and financial security are not profoundly impacted – only 46% reported changes in employment status as a direct result of cancer or its treatment, and encouragingly, 94% received government healthcare with cost of treatment not influencing decisions. Only small changes in financial stability were reported, and most had no prior medical debt.
Psychological and social challenges are widespread – 46% reported fear of dying, 44% experienced disease-related anxiety, 40% had fear of recurrence, 35% experienced general anxiety, 18% faced depression, and 20% experienced isolation.
Supportive care gaps persist – 48% struggled with housekeeping difficulties, while up to half of women needed more supportive care across the cancer journey. At diagnosis, 52% reported needing emotional support but only 39% received it, and the gap widened after treatment when less than half received the emotional support they needed. Additionally, there is limited access to survivorship education and young-adult specific resources.
Patient advocacy and empowerment are strong – 77% were members of patient advocacy groups and 66% engaged in online communities to connect with others who understood their diagnosis, ask questions, and seek advice on practical issues.
Government engagement and clinical trial access remain limited – only 39% believe the government has policies that improve access to care, and just 20% felt patients are involved in policy creation. Clinical trial participation is hindered as only 7% had ever been asked to participate in a trial and 67% were unsure if clinical trials were even available in their area, despite high interest (67% would like to learn more).
A Closer Look
The Diagnosis Journey: Detection, Testing and Understanding
The average age of diagnosis was 37 and more than half were diagnosed at Stage II or lower, but 15% did not know what stage they were initially diagnosed, highlighting a communication issue. A strong majority reported high awareness of signs and symptoms. 60% underwent genetic testing, while only 30% had genomic testing, but awareness of tumor biology was limited, 24% did not know their hormone receptor status and 41% did not know their HER2 status. 58% had a family history of breast cancer. 15% delayed reporting concerns, citing age, lack of family history, or lack of time. Alarmingly, 17% were told by a healthcare professional they were “too young” for breast cancer.
32% 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
74% of responders reported a clear understanding of their treatment plan and why they were receiving each treatment and 67% started their treatment right away. 83% had a healthcare provider they could ask questions and reported good relationships with their doctors, but only 10% were included in discussions about creating their treatment plan. Highlighting a lack of patient involvement and education, more than half did not receive any written materials upon their diagnosis and beginning treatment or did not understand what they did receive. More than half, 58% received information about long-term health impacts of treatment.
Interest in clinical trials is high, 67% would like to learn more about clinical trials and 60% had a positive or very positive perception of clinical trials. Only 7% had ever been asked to participate in a trial and 67% were unsure if clinical trials were even available in their area.
58% 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 cancer was evident with 46% experiencing fear of dying and 40% fear of recurrence. 44% experienced disease-related anxiety and 35% general anxiety. Depression (18%) and isolation (20%) were also noted.
Financial and Employment Impact
Breast cancer brings a significant disruption to women’s careers and livelihoods. Only 37% are working and 46% reported a change in employment status as a direct result of cancer or its treatment—occurring at diagnosis, during treatment, or after treatment.
Encouragingly, 94% received government healthcare, and the cost of treatment did not influence decisions. Only small changes in financial stability were reported, and most had no prior medical debt.
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,changes in relationships, and practical issues. 52% expressed concerns about body image and appearance. 57% experienced changes in their sexuality and 45% reported changes in relationships with loved ones, friends, or coworkers. 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.
23% had discussions with their healthcare providers about the impact of cancer treatment on their fertility and family planning, but only 10% undertook any fertility preservation actions. Cost did not appear to be a barrier to making fertility and family planning decisions.
Practical burdens and supportive services
Practical burdens included: 48% difficulty with housekeeping, 24% difficulty managing work or school, 22% financial insecurity, 15% difficulty caring for children.
Up to half of women needed more supportive care across the cancer journey, 52% reported needing emotional support at diagnosis, but only 39% received it and the number of women who needed support after treatment finished grew and less than half received emotional support.
Patient Empowerment and Advocacy
Community engagement was high: 77% were members of patient advocacy groups and 66% engaged in online communities. Responders joined advocacy groups or online communities in order to talk to others who understood their diagnosis, ask questions, or seek advice on practical issues, like alleviating treatment side effects.
39% of respondents believe the government has policies that improve access to care, but the majority were unsure or said no. Only 20% felt patients are involved in policy creation. Nearly half emphasized the need for stronger government support for young cancer patients and their families.
While healthcare access appears strong thanks to government coverage, the social, emotional, and practical burdens remain substantial, underscoring the need for policies and support systems that reflect the realities of young women living with breast cancer.
In Their Own Words: Patient-Identified Needs and Priorities
Respondents identified the following ongoing needs:
- 45% respondents seeking education about survivorship
- 31% wanting more information on self-care
- 28% needing physical or lymphedema therapy
- 16% needing support for grief and loss
- 49% 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/