The experience of living with metastatic breast cancer

Abstract

Over the last 10-15 years the medical management of metastatic breast cancer has improved survival, so women are living longer with progressive disease. Little is understood about women’s problems and needs and how they live their everyday lives.

This study aimed to explore the experience of women with metastatic breast cancer by applying three phases: a cross-sectional survey exploring quality of life, experience of care and where they turned for support; exploration of the narratives of 30 women considering the social consequences of living with progressive breast cancer on identity; and finally triangulating medical and nursing documentation, a measure of physical functioning and ten women’s narratives to define the illness trajectory of metastatic breast cancer.

Phase 1: Quality of life was found to be poor with women experiencing a significant symptom burden. Experience of care was poor with unmet information and support needs. There was little evidence of General Practitioner or palliative care involvement in care.

Phase 2: In weathering the oscillations of progressive disease, women faced threats to their social identity. Women sought ways to maintain their social roles and social order to avoid social isolation. To do this they adopted contingent identities: stoicism or absolved responsibility. Women used these contingent identities to mediate any discontinuity between the self, the body and social order. These self-representations were used by women to maintain their social roles and social order and in doing so avoiding being discredited and socially isolated.

Phase 3: Mapping women’s illness trajectories identified three typical trajectories. The illness trajectories demonstrated the complexity of living over time with progressive disease, through phases which give definition to a previously ill-defined pathway.

Living with metastatic breast cancer challenges the personal resources of the individual and poses interesting questions about how healthcare professionals provide information, effective symptom control, and emotional and practical support to women.

Current models of care are not meeting women’s needs and new approaches to care provision need to be considered.

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