Almost half of all women (48%) under the age of 40 who are living with advanced breast cancer have children under the age of 18, and 64% of these young patients also experience employment disruptions after they are diagnosed, according to findings from a survey conducted by the Young Survival Coalition as part of Project 528. Highlights of the data it collected were presented at the Advanced Breast Cancer Eighth International Consensus Conference (Abstract OR36).
“For the first time, we now have global data that reflect the voices of young women with advanced breast cancer. This survey gives us the evidence we need to understand their unique challenges and to ensure that research, services, and policies are shaped by their lived experiences—not by assumptions,” said Jennifer Merschdorf, Chief Executive Officer of the Young Survival Coalition, which conducted the Project 528 survey.
Background
Project 528 is a global collaborative group of nonprofits, support organizations, researchers, and health-care providers conducting a global needs assessment of the young adult breast cancer community. The project is named for the estimated 528,018 young adults impacted by breast cancer worldwide. The survey was led by Young Survival Coalition, one of the first groups involved in the project that recruited other global breast cancer organizations to the cause.
“We launched Project 528 to fill a critical gap—the voices of young adults living with advanced breast cancer are often underrepresented in clinical discussions and policy dialogues," said Ms. Merschdorf.
As part of the project, the Young Survival Coalition conducted a survey of 3,881 respondents—including 385 individuals younger than 40 and living with advanced breast cancer—to understand the experiences, challenges, and needs of younger patients with advanced breast cancer across the world.
Key Survey Findings
The survey revealed that 40% of younger women with advanced breast cancer delayed seeking care for their cancer due to provider dismissal, lack of awareness, fear, or other reasons. Only 14% of all responding patients were diagnosed as a result of clinical screening or routine care, showing a significant gap in early cancer detection for younger adults.
Although 90% received genetic testing, only 59% received genomic or companion testing. Only 46% of patients reported that they were offered more than one treatment option, and targeted therapies had the lowest levels of patient understanding.
Eighty percent of respondents reported experiencing psychological distress, which was rarely addressed. Challenges associated with childcare, housekeeping, and transportation were common, and many respondents reported other areas of unmet needs, as well as severe financial toxicity.
“Our analysis of young women living with advanced breast cancer underscores a consistent theme,” said Ms. Merschdorf. “The current standard of care, while medically advanced, remains deeply fragmented when it comes to the lived realities of younger... patients. From diagnosis delays to unmet psychosocial needs, patients face a system that too often demands self-advocacy in the face of fatigue, fear, and financial strain."
“Beyond research and services, these findings can inform the development of health policies that better reflect and support the lived experiences of young adults facing breast cancer. Ultimately, the goal is for these data to drive meaningful improvements in research, care, and policy that truly serve this community,” she added.
Disclosure: For full disclosures of the study authors, visit thebreastonline.com.
