“Eu tenho o direito de querer viver”: narrativas sobre a experiência de viver com e além do diagnóstico de câncer de mama metastático

Abstract

Metastatic breast cancer (MBC) is an incurable condition which remains under-recognized in the context of Brazilian public health. While advances in precision medicine have led to the development of increasingly targeted drugs for the molecular profiles of tumors and have extended survival in some cases, in Brazil the lack of epidemiological data and inequities in access to information and innovative therapies continue to define a highly challenging reality. Drawing on the sociology of diagnosis and the concept of “living with and beyond disease,” this study analyses how the diagnosis of MBC is mobilized in the narratives of Brazilian patients, with a focus on their trajectories of access and oncological treatment, as well as on their individual and collective strategies for coping with the diagnosis. This exploratory qualitative study was based on participant observation and the analysis of 16 in-depth interviews using semi-structured questions. The findings were discussed in collaboration with an “expert patient.” The narratives reveal a subjective process of reconfiguring the “self” after the disruptive impact of a diagnosis associated with the imminence of death. We observed a shift in expectations from “cure” to “quality of life,” the latter being an imprecise construct, open to multiple interpretations in clinical decision-making. Faced with communication barriers with healthcare professionals, patients turn to social networks—support groups, digital environments, or closed WhatsApp/Facebook groups—for information. Experiences of extended survival through access to innovative drugs are valued as “exemplary,” giving rise to epic and chronicity narratives. In this sense, medications play a significant role in restructuring hope for the continuation of life, even though this process is marked by tensions and uncertainties, intensified by the dichotomy between oncological and palliative care approaches. Strategies to access new drugs include active negotiation, litigation, and the “customization” of care. Although sociability around the diagnosis of MBC in Brazil is still incipient and informal compared with contexts of advanced capitalism, the extension of survival and the work of activist groups have fostered a transition from the individual narrative of being an “exception” to the emergence of a collective perspective. It is essential that the diagnosis of MBC be recognized as a public health priority, with policies not only aimed at the incorporation and provision of new health technologies, but also at the planning of services prepared to inform patients about the specificities of their diagnoses and possible therapies, in order to address the complexity of the trajectories and demands of the population that is, or should be, surviving beyond the metastatic diagnosis.