The Uncertain Presence: Experiences of Living with Metastatic Breast Cancer

Abstract

Drawing from interviews with women with metastatic breast cancer in the UK and France, in this article I analyze uncertainties linked to this condition. In particular, I show how the impossibility of foreseeing the evolution of the condition, also as an indirect consequence of medical innovation, initiates an irreparable disruption of life after diagnosis. I further show how the lives of the patients are not only limited by the illness, but also by the difficulty of finding a place in society. I argue that such experiences are best understood through the concept of the crisis of the presence.

Exploring the experiences of women living with metastatic breast cancer [MBC]: A systematic review of qualitative evidence

“…From the moment of their initial diagnosis of breast cancer, to the juncture of diagnosis of progressive MBC disease, many women lived for an extended time with the prevailing thoughts and fears that cancer may return; it was always in their consciousness [6,38]. The news that breast cancer had progressed was profoundly shocking and terrifying.…”

“…The diagnosis had a damaging impact on their lives and precipitated a sense of loss of the women's holistic existence, affecting their professional identity. For example, many women had to give up work [38]. Worries about personal appearance; relationships with partners; role as mothers; bonding with family and friends; loss of purpose, well-being, and interference with the ability to manage activities of daily living were reported as overwhelming [41][42][43][46][47][48][49][50].…”

“…Additionally, there is a deficiency in accessibility to clinical trials for women with MBC and difficulty in obtaining information on their disease evolution. There is a need to have a specialised MBC nurse whose role could potentially support women with MBC throughout their cancer trajectory [38,59]. Furthermore, there was a lack of conversation from HCPs on aspects of the disease that affected women's sexuality because of treatments [47].…”

Coexisting cancer regimes: Transformations of breast and lung cancer in the United Kingdom

“…That these treatments reduce (without ever eliminating) the risk of a relapse contributes to the perception of ESBC as a curable condition (cf. Greco, 2022b and, for how the possibility of a relapse leaves patients in a liminal state, Rees, 2017 ). For women with MBC, experimental treatments available through clinical trials are an option when other treatments stop producing results.…”

“…The therapeutic landscape for breast cancer, and especially for MBC, does not include a single treatment able to cure the disease but rather a complex mosaic of options that can keep the cancer at bay for a longer period without ever eliminating it. If ESBC is increasingly defined as curable, MBC is described as ‘treatable but not curable’ and increasingly represented as a chronic disease in the medical literature ( Greco, 2022b ). Many doctors are of the opinion that this trend will continue, and there will be more therapies available and an increasingly stratified approach, showing important economies of hope ( Delvecchio Good, 2001 ) linked to targeted therapies.…”