The importance of the person/patient/survivor's lived experience across the cancer control continuum

The focus of the vast majority of the original research articles in oncology is the tumor itself: its molecular beginnings, its development and progression in a microenvironment, its growth and clinical detection, and its treatment and response— cure, remission, recurrence, or metastasis. It is important, however, that we also focus research efforts on the person in whom the cancer develops, is detected, is treated, and is cured or clinically managed for the rest of his or her life. What that person thinks and feels, perceives and recalls— their lived experience— not only is central to his or her quality of life across all aspects of the cancer control continuum but also affects his or her risk of developing cancer and/or risk of premature mortality after a cancer diagnosis. These impacts of the lived experience on cancer outcomes are mediated by the activities of the central nervous system either directly (via extensive biological pathways linking the brain and all bodily tissues) or indirectly (via behavioral choices directed by the brain that in turn affect cancerrelated biology), as diagramed in the theoretical model shown in Figure 1. 4 Examples of external stimuli that negatively impinge on these processes include acute and chronic negative events (eg, stressors), whereas positive effects can be induced by interventions (eg, cognitive behavioral therapy). As the person/patient/survivor progresses through the cancer control continuum, he or she is also exposed to multiple cancerspecific experiences that can engender cancerspecific negative thoughts and feelings (eg, worries about screenings and treatments and symptom experiences), which in turn can result in more broadspread experiences of anxiety and depression. Independent effects of cancerspecific biological factors secreted by the tumor or other cells in the tumor microenvironment can also begin to affect the lived experience (eg, cytokineinduced fatigue, cognitive dysfunction, and depressive symptoms). At the same time, the person/patient/survivor’s lived experience is also influenced by overarching contextual factors at individual, family, and societal levels that can exacerbate or ameliorate cancerrelated disparities (eg, socioeconomic status, marital/partner status, and health insurance status) consistent with ecological models of health and disease. In this brief editorial, we would like to call attention to the importance of renewed interdisciplinary research efforts to investigate the numerous behavioral and biological pathways linking the multifaceted lived experience of the person/ patient/survivor to outcomes across the cancer control continuum and explore their potential to support innovative interventions capable of significantly reducing disparities in the public health burden of cancer. To that end, we first highlight recent compelling evidence of significant effects of the lived experience of depression and anxiety on the risks of cancer incidence and mortality and note the likely systematic underestimation of the impact of those effects due to conceptual silos in this area of research. We then highlight several highly relevant aspects of the findings in the original research report by Balachandra and colleagues in this issue of Cancer. We end with a brief discussion of implications for future intervention research in this area that may contribute to reductions in cancerrelated health disparities by improving the person/patient/survivor’s lived experience. One important component of a rigorous evaluation of potential risk factors for the development of cancer or for premature mortality after a diagnosis is largescale epidemiological cohort studies. These studies typically involve standardized assessments of the potential risk factors and potential confounding variables followed by multiyear tracking of populationrepresentative samples of participants recruited when they were free of any cancer (to study factors predictive of the subsequent development of a cancer) or when they were recently diagnosed with a cancer (to study factors predictive of premature mortality). Because of the inherently subjective nature of the lived experience, it is perhaps not surprising that relatively few such studies have been conducted to examine any particular aspect of the person/patient/ survivor experience. Studies have more often focused on exposures to factors that can be objectively quantified and reach