Assemblages of Cancer offers a comparative, in-depth analysis of breast cancer in the UK, France and Italy, linking patients’ experiences with the biomedical, political and cultural context of the disease. The book is based on ten years of ethnographic research with patients and medical professionals across the three countries. It shows how breast cancer experiences can be best understood as provisional assemblages involving transformed bodies, uncertainties due to a possible relapse, and tinkering with standardised protocols and pathways to make treatments work for each patient. The analysis highlights the shared specificities and internal variations of breast cancer in the three countries. It explores how universal healthcare systems impacted by privatisation processes, local variations in the workings of biomedicine, and local changes to the North American pink ribbon discourses and advocacy transform the experiences of breast cancer. The book presents an in-depth analysis of how breast cancer and its treatments alter not only women’s bodies but also their personal and professional lives. It further analyses patients’ strategies to rebuild new meaning and values around the uncertainties brought by cancer and to counter its consequences. Across the chapters, the analyses cover questions linked to the organisation of healthcare systems, cultural discourses about breast cancer, and medical innovation. They connect these topics to how patients’ bodies are redefined and how their experiences and expectations for the future change. Additionally, they examine how breast cancer affects patients’ working lives and relationships, ultimately leading to a new understanding of the disease in Europe today.
This chapter explores the experiences of patients coming to terms with the different ways in which cancer treatments change their bodies through surgery. It discusses how most patients undergoing a breast reconstruction do not necessarily abide by a gendered idea of how a female body should be, and have different aims. Some try to obtain a breast as similar as possible to the pre-operative one, seeking access to the techniques with the more ‘natural’ result; others look only for a breast volume that can be passed for a breast in different contexts, which can be obtained through simpler techniques or through an external prosthesis. For others, the reconstruction is psychological and includes accepting an asymmetric or flat chest. In all cases, the appearance of the body is only one of the issues, and sensitivity and embodied perception are equally important. The chapter explores the multiple meanings and uses of breast reconstruction, showing how the study of the different ways to assemble a post-surgical body allows us to go beyond the debate focused on the concepts of agency and resistance that have characterised the feminist analysis of cosmetic and reconstructive surgery. Patients’ orientations contrast with those of medical professionals, who often follow the aims of aesthetic surgery and more restrictive gender norms in trying to obtain a breast that fits the dominant canon and that is ideally better than the pre-diagnosis one.
This chapter explores the ramifications that a breast cancer diagnosis has on the different aspects of women’s lives, further offering an overview of the strategies they use to reconfigure their lives and those of their families. It first discusses how the working lives of those diagnosed in working age have been impacted and redefined by cancer. Several interviewees have described the cancer as an event that brought them to rethink their priorities, reducing their engagement with jobs that, in some cases, they did not appreciate in the first place. However, other women, especially those in the metastatic phase, have been unable to continue to work in roles they liked and that fulfilled their lives because of the disability brought by the illness and a lack of adjustments by employers. A second point explored is the relationship with partners and families. The gendered nature of breast cancer extends to how care is redefined within the family and to the degree to which different interviewees can rely on support from their partners and family. While many interviewees described being able to rely on several people during their illness, in some cases the illness was described as characterised by limited support or the end of the relationship with a partner. Finally, the chapter explores how the illness has redefined friendships and how sometimes friendships have become part of the support available.
This chapter discusses the role of medical innovation in the continued redefinition of breast cancer. The oncologists interviewed were often optimistic about the potential of targeted treatments and immunotherapy, hoping both to transform metastatic breast cancer into a chronic disease with longer survival times and to reduce relapse of early-stage breast cancer through adjuvant therapies. The segmentation of breast cancer not only according to stages but also according to the biological profile of the tumour is rearranging it as a group of diseases occurring in the same bodily location – the breast. Moreover, the availability of targeted treatments particularly effective for some subtypes of breast cancer allows the emergence of new biomedical rhetorics that present early-stage breast cancer as curable and metastatic breast cancer as a condition that can become chronic. However, some of the medical professionals interviewed recognised the continuing challenges in the treatment of breast cancer, especially in the metastatic phase. The introduction of new treatments, which can see delays in approval or unequal geographic distribution, has created a complex therapeutic landscape that patients can find challenging to navigate, as well as inequalities in access to specific treatments. Using in-depth interviews with patients, the chapter analyses how patients deal with medical innovation. In particular, it explores how patients negotiate with the biomedical establishment for access to specific treatments. Patients deal with the power and prestige asymmetries in the doctor–patient relationship to assemble their combination of treatments.
This chapter discusses the different kinds of uncertainty that a breast cancer diagnosis brings and the provisional and precarious nature of the post-diagnosis life. A diagnosis of cancer always involves a shock, and the chapter first explores how it introduces a disruption in patients’ biographies and how they attempt to manage the uncertainty that the cancer causes. Women can use different strategies to regain control of their lives; in some cases, they search for medical professionals and institutions that they feel can be trusted; in other cases, they try to regain control by acquiring information and becoming experts on their condition. Even when the treatments have obtained the best of currently possible results – ‘no evidence of disease’ – the possibility of relapse extends the uncertainty of patients. In this context, some types of treatment have been extended to reduce the risk of relapse, creating a new normal. For patients with metastatic breast cancer, there is an even more profound uncertainty: while dying from the condition becomes almost certain, current treatments have extended the survival times for many patients, but, at an individual level, women do not know whether treatments will be effective for them, for how long, and the impact that a specific treatment will have on their life. Women do not know how much time they have left or how to organise it. The uncertainty and provisionality of breast cancer have created a liminal space between a chronic and a terminal condition that women inhabit uncomfortably.
The Conclusion links the individual illness narratives with the biomedical, political and cultural context of breast cancer in the UK, France and Italy. It shows how comparing three different countries and looking at structural phenomena and embodied experiences can demonstrate how medical innovation, the organisation of healthcare and the gendered discourses around breast cancer all influence the experiences of illness. The comparison further illustrates the specificities of the Western European context when compared with the well-studied North American context and identifies the differences between the three countries. The chapter shows the continuities in patients’ experiences linked to the diffusion of mostly standardised treatments and the circulation of similar discourses around breast cancer. At the same time, both biomedicine and the image of breast cancer are redefined locally, and the experiences of individual patients can change significantly between national healthcare contexts. In this sense, ethnographic work across three West European countries reveals both how local contexts shape the treatment of breast cancer and how, in each context, there are points of contact in the experiences across different subtypes of breast cancer. There is a tendency in biomedicine to segment breast cancer into a growing number of distinct conditions and to present it as having standardised outcomes when given access to adequate treatment. However, the conclusions underline the similarity of patients’ experiences with different biomarkers, while also underlining how much of the final experience is social and depends on contextual, non-biological factors.
Starting with a discussion of the dominant international discourse around breast cancer linked to the ‘pink ribbon’ rhetoric, this chapter analyses how those discourses are adapted and transformed in the France, Italy and the UK and their impact on patients’ experiences. The US-based Komen Foundation was among the first associations to promote a rhetoric of prevention through early detection, merged with an injunction to optimism and a glamorous communication style. National charities and associations and charities in all three countries, as well as local healthcare authorities, have introduced campaigns in line with the pink ribbon rhetoric. However, some important changes are innovating the social and cultural understanding of breast cancer; for instance, metastatic breast cancer, usually invisibilised, has gained visibility in some more recent campaigns. Using interviews with different patient advocates and activists and fieldwork involving participant observation of several advocacy and activist initiatives and events, the chapter analyses the different opportunities for advocacy in the three countries. It also explores the various ways in which patients react to neoliberal injunctions to optimism. If, for some people, a diagnosis can be a catalyst of positive changes, the majority remain sceptical of rhetoric that fails to address their uncertainties about the development and possible recurrence of cancer. As breast cancer is the source of significant uncertainties, requiring patients to assemble their knowledge about the possible evolution of their cancer, a context of contradictory messages further complicates theit experiences of breast cancer.
The Introduction presents breast cancer as both a success story that has made it a paradigm for cancer in general and a prism that can help understand social phenomena. It discusses the concept of assemblage, which defines bodies as normally connected to physical and social elements outside the boundaries of the skin. This concept allows us to understand how the bodies of women with breast cancer are transformed by surgery and other therapies and influenced by medical tools and institutions. The chapter further discusses how, despite the aim to systematise knowledge and standardise treatments and pathways, patients still have to conduct their assemblage work to draw together the existing information and access the different treatments. The assemblage approach also allows the linking of transformations in breast cancer treatments with the social discourse about cancer, national healthcare institutions and patients’ experiences. The chapter shows the mutual reinforcement between the cancer schemata based on early detection, the social scripts that invite patients to be optimistic, and the regimes that present breast cancer both as containable through screening and allowing targeted treatments. It also discusses how the highly gendered image of breast cancer produces injunctions located at the intersection between gender norms and neoliberalism. The advantages of studying comparatively the UK, France and Italy are discussed, highlighting the specificities of Western Europe in terms of organisation of healthcare, advocacy landscape and the public image of cancer.
This chapter looks at how the organisation of national healthcare systems and the oncology services within them influences the experience of patients with breast cancer. UK, France and Italy have universalistic, high-quality public services that cover most cancer treatments free of charge. However, the chapter shows the different ways cancer treatment is partially privatised in the three countries, from charities taking charge of services and funding in the UK to the parallel offer of treatments in the private sector. In addition, the rapid development of new treatments for metastatic breast cancer introduces the question of how rapidly these costly treatments are authorised for use in the public sector. The combination of being pushed to resort to the private sector for some treatments and not being able to access some of the most recent treatments has introduced dimensions of economic inequality into healthcare systems that are usually considered universalistic. A further important element is how patients move between different medical institutions to access different treatments. While such movements are increasingly codified in standardised pathways, especially in the UK, patients often need to assemble their own trajectory across different institutions and to fill the gaps in the pathways. Moreover, patients in France and Italy are more mobile, while patients in the UK show less geographic mobility. Such a situation is further linked to the unequal geographic distribution of some treatments, with the phenomena of the ‘postcode lottery’ in the UK and a strong north/south divide in Italy.
The concluding chapter ties together the discussions and observations presented in the previous chapters. It outlines the contours of the book’s central argument, that of the ‘impossibility of disappearance’, or the idea that the disappeared tend to reappear in either concrete or symbolic forms. Moreover, the chapter reiterates the theoretical frame for understanding human disappearances, with specific foci on the state, family and kinship, community and intimate relations, and violence and care, of making disappear and enabling reappearance.