Living Through Uncertainty: Cancer Patients’ Experiences in Early-Phase Experimental Drug Trials

Abstract

Drug discovery and development, particularly in oncology, increasingly involves patient participation in early-phase clinical trials, yet little is known about the lived experiences of these patients within such high-stakes settings. While biomedical outcomes are well documented, the subjective emotional and existential dimensions of trial participation remain underexplored. The current study addresses this gap by asking: How do cancer patients experience and interpret their involvement in early-phase experimental drug trials? This qualitative research employed an interpretative phenomenological approach and involved in-depth, semi-structured interviews with a purposive sample of ten advanced-stage cancer patients (n = 10). The study uncovers the emotional and cognitive meanings patients assign to trial participation, emphasizing its role as both a medical decision and a deeply personal journey. Interview data were collected in a clinical oncology setting and analyzed systematically using Interpretative Phenomenological Analysis (IPA) to identify essential experiential themes. The results revealed four interrelated themes: negotiating uncertainty, clinging to hope, confronting existential vulnerability, and trusting the medical system. These themes illustrate how patients make sense of their experiences by integrating fear, agency, and meaning into their clinical decision-making process. The findings suggest that early-phase trial participation extends beyond clinical engagement, serving as a vehicle for patients to assert identity, find purpose, and preserve hope. These insights contribute to a more ethically grounded, patient-centered approach to clinical research and offer a foundation for future studies examining the relational and emotional dimensions of medical innovation.