Exploring the experience of advanced recurrence in people with cancer who perceived themselves as cancer free:a grounded theory study

Background: Evolving treatment options for people with cancer mean that increased numbers survive after diagnosis and enter a period where they perceive themselves as cancer free. Unfortunately, some experience a cancer recurrence, which can be at an advanced stage. Their prior treatment experience may influence their approach to this recurrence. New treatments are available to people in this illness stage. This experience is not well understood. Aim: To describe the experience of advanced cancer recurrence in people who have perceived themselves to be cancer free. Methods: A constructivist grounded theory approach. Qualitative interviews (n = 15) with people living a minimum of 2 or more years cancer free, with an advanced incurable cancer recurrence. Constant comparative method was used with theoretical sampling. Initial coding and focused coding enabled the development of final concepts. Concepts were substantiated using focused narrative synthesis literature review. Results: An inductively-developed understanding of three interactive concepts: Reluctant Acceptance, Seeking Life Through Continuous Treatment, and Hope in the Face of an Uncertain Future. These describe the experience from diagnosis of advanced cancer recurrence, with initial anger and sadness that the cancer is no longer curable. This shifts to a state of reluctant acceptance, which is a catalyst to seeking life through continuous treatment. Seeking life through continuous treatment creates hope in the face of an uncertain future, which then influences seeking life through continuous treatment. Conclusion: The experience of advanced cancer recurrence within the context of newly evolving treatment options leads to seeking treatment for advanced-stage cancer that is understood to be incurable but treatable. Seeking life through continuous treatment and hope in the face of an uncertain future are interactively linked to each other, creating a state of personal equilibrium for this population. This study illuminates the ways in which advanced cancer and treatment are perceived by this population. It provides direction for future research, which should focus on testing the model in a variety of settings, and developing understanding about the expectations and needs of people with advanced cancer recurrence