When I was a child of six or seven living in southern Italy, I overheard my mother and aunt having a serious and tense conversation about a friend, a young woman with ‘un brutto male’. An Italian euphemism for cancer, this phrase is difficult to translate but means something like ‘a nasty disease’.

I cannot recall the word ‘cancer’ ever being used explicitly in my family. Even now, I carefully avoid saying it when talking to my mother because I know how much the mere mention of cancer would upset her. Despite the silence, il brutto male has been present in our lives. The young family friend about whom my mother and aunt were talking had breast cancer, as did several other female relatives and friends. My personal encounter with breast cancer came when I was 23 and a suspect lump led me to undergo a breast ultrasound. The test results were unclear and opened a space of doubt. The following weeks were characterised by an uncertainty that was finally resolved through surgery and histology that showed the lump was benign. When I asked the radiologist whether I was ‘at risk’ the answer was that ‘every woman is at risk’. ¹ I have not (at the time of writing) received a breast cancer diagnosis, but the risk of the disease has been with me ever since, accompanying me as a young adult and an adult migrant woman.

Unlike the older women in my family, I used the word cancer. I also looked for information online and asked explicit questions of medical professionals. When I was younger, I thought that the word's rejection represented the residue of past beliefs dominated by magical thinking. ² This might be accurate, but I know now that this is only a portion of the truth. ³ The refusal to mention cancer was one of the many strategies that women, including the women in my family, used to deal with it, to accept, negotiate and reduce its role in their lives. However, so was my reaction to the risk of breast cancer. These different behaviours are part of the processes of assemblage that I explore in this book.

Years later, when I started to research breast cancer, I returned to the small towns where I grew up, as well as meeting women in France and the UK and interviewing medical professionals from a long list of hospitals. Assemblages of cancer is the result of my long-standing interest in breast cancer, and it illustrates the tensions and contradictions extant in the experiences and representations of breast cancer in Western Europe, with a focus on the UK, France and Italy. In the European Union (EU), breast cancer is the most common cancer, with over 355,000 cases diagnosed in 2020 in the EU-27, and the third most common cause of death by cancer, after lung and colorectal. ⁴ These numbers give an immediate idea of the magnitude of the phenomenon and can explain why, nowadays, the euphemistic language of the past has become much less common and breast cancer has been pushed to the forefront of public discourse. To fully comprehend its impact, it is crucial to examine the challenges it poses to individuals and how social and political views of the disease shape individual responses. As I discuss below, the social attention on breast cancer needs to be understood as a combination of factors, including its high incidence and gendered nature, its importance to medical innovation, and advocacy initiatives that have been very successful in attracting funds.

Breast cancer is a multiform presence in our lives. For some of us, it is a risk; for others, a diagnosis, whether ours or that of someone close to us; for others still, it is a reminder to book a screening appointment. However, despite its ubiquity, breast cancer is far from experienced in the same way by all those directly or indirectly touched by it. As Zillah Eisenstein reminds us, our bodies, and breast tissue in particular, ‘absorb their environs in unique ways’ (2001: 61). In Assemblages of cancer, I consider the different responses and reactions resulting from the fact that inequalities and cultural, social and political differences are absorbed by our bodies and model our experiences. In the following pages, I discuss how this book uses the concept of assemblage and how the organisation of breast cancer treatments has developed historically around specific scripts and regimes. I then turn to the strongly gendered nature of breast cancer and the discourses built around the disease and elaborate the specificities of the Western European context for breast cancer. I conclude this Introduction with a presentation of the methodology of the different research projects on which this book is based and an overview of the chapters that follow.

Cancer experiences

In this book, I explore how inequalities and different social and cultural landscapes shape experiences of breast cancer and responses from patients, medical professionals and institutions. My use and understanding of experiences as an empirical tool are informed by reflections and explorations in the social sciences, including anthropology and science and technology studies (STS). Moreover, the dynamism and fluidity of experiences of cancer are strongly linked with another central concept in this book, that of assemblages (see below).

How to understand the experiences that individuals have of the societies and cultures in which they are located, and the methods by which such experiences can be accessed, are key questions in different social sciences, including anthropology. As Willen and Seeman have discussed, starting with the late 1980s and 1990s, ethnography has shown a strong interest in experiences. However, ethnographers have taken a ‘pluralistic […] stance’ (Willen and Seeman, 2012: 5) in approaching the topic. Phenomenological and psychoanalytical perspectives have been central in informing theories and positions in the ethnographic study of experience. This interest in experiences has not diluted the attention on how social and cultural forces shape human events. It has instead ‘provided a conceptual bridge between individual lifeworlds and the much broader political-economic trends and cultural-symbolic systems that constrain and inform them’ (Willen and Seeman, 2012: 6). The greater attention to individual experiences has also influenced how we look at diseases and how individual suffering and pain are interwoven into the broader social and cultural ideas surrounding health and illness.

Medical anthropologist and physician Arthur Kleinman is among those who gave a central role to individual experience, starting from the introduction of the central distinction between disease and illness. Disease is presented as a ‘natural process’ and is opposed to ‘the experience of illness’, which ‘is a cultural or symbolic reality’ and ‘involves feelings, ideas, values, language and non-verbal communication, symbolic behaviour, and the like’ (Kleinman, 1973: 209). For Kleinman (1997), the centrality of individual experience is a barrier to reductionism – that is, to the limitation of the multiplicity of values and meanings of disease to a reduced set of categories and terms – present above all in biomedicine, but from which anthropology is not exempt. If we focus on illness experiences, there is a gap between individual experiences and how healthcare systems and cultural constructions of illness plan the unfolding of these events and inform the meanings that individuals attribute to them. However, experience is not simply individual and intimate, as approaches coming from STS have underlined, focusing on the relationships between different entities and how they ‘become what they are in relation to other entities’ (Skeide, 2021: 454). Skeide (2021) analyses the experience of labour pain, considering it a ‘shared relations-in-practice’ and showing how labour pain is not just a central element in the experience of women giving birth, but also a catalyst capable of modifying the actions and behaviours of medical staff and family members. More generally, we can understand experiences as the meanings and emotions that people attach to specific events, and such meanings involve the combination not only of individual sensations and memories but also different interactions with external actors and objects. Individual experiences, although partially ineffable, allow us to glimpse a reality that oscillates between the intimacy of individual and embodied knowledge while structuring relationships between the people and cultural and social contexts in which they move.

Another central aspect is how ethnography can access individual experiences. Geertz (1986: 373) affirms that ‘[w]hatever sense we have of how things stand with someone else's inner life, we gain it through their expressions’. A way of accessing the expressions of experience is therefore by understanding the culture in which experiences develop. In this sense, detailed ethnographic accounts are a good proxy for understanding individuality. For Turner (1986), the experience can be revealed clearly in ritual and aesthetic presentations of social norms and conflicts. Both the latter two approaches presuppose the subsumption of experience into culture and its cultural manifestations. According to Willen and Seeman (2012), Kleinman's reflections emphasising that individual experiences are only partially linked to their cultural and social context are a ‘vital corrective’ (Willen and Seeman 2012: 9) of understanding of individual suffering as completely filtered through cultural rituals and interpretations (in this regard, see also Seeman 2004). The reconstruction of the cultural context and meaning of an individual's narrative therefore can give us an essential, but still incomplete, access to their experiences, especially those of illness. In this book, the illness narratives represent the main tool for accessing the experiences of illness. However, I further consider how these experiences structure and reorganise the relationships between patients, the medical system and the various social and personal spheres in which the women I met move. In this sense, my approach is a strong interpenetration of the analysis of individual experience and the context – cultural, social and economic – in which they are located. This further means not only reconstructing the individual specificity and the wider context, but identifying the deep links between these two dimensions. To do this, I use the concept of assemblage, which, as Chenhall and Senior highlight, ‘provide[s] a variety of ways of capturing social phenomena in relation to individuals’ (Chenhall and Senior, 2018: 182).

Assemblage as an analytical framework for cancer

I adapt the concept of assemblage with reference to Deleuze and Guattari's formulation (1980). The two philosophers discussed assemblage in an effort to decentre the notions of subjectivity, power, territory, language and signification. My use of assemblage is linked to how Deleuze and Guattari apply the concept in their theory of the body (Deleuze and Guattari, 1980; see also Grosz, 1994; Currier, 2003). This theory was formulated in opposition to psychoanalysis and the idea that bodily and psychical unity is the norm, and that any violation of bodily unity is in itself pathologic. ⁵ For Deleuze and Guattari, bodies are normally connected with various elements outside the limits of the skin. ⁶ Their work has been applied to medicine to underline how ideas of health and illness exist as a combination of individual bodies, diagnostic and medical tools and procedures, and larger social contexts (Fox, 2011; Duff, 2014). Deleuze's work has also been used to advance an approach to health that focuses on experiences in becoming rather than on factors of risk projected onto the future. In this sense, Deleuze's focus on positive and negative ‘encounters’ has been used as a framework to explore experiences of health as they manifest in a given moment, contrasting the focus on long-term developments that preoccupies much of public health (Duff, 2014). Many of the assemblages I discuss in the book (of pathways, meanings, relationships and uses of the body), especially on the patient side, could be compared with the role of the bricoleur (Marcus and Saka, 2006; Sassen and Ong, 2014). While I incorporate such concept explicitly within the idea of the bricolage-assemblage (see below), I also question some of the optimistic approaches often linked to the concept, which generally assume creative subjects that use limited resources to create spaces of agency (De Certeau, 1980). In discussing assemblages, I instead highlight how women with cancer not only can often reach only provisional re-compositions but also have to do so with bodies and social roles significantly altered by the disease. According to Marcus and Saka, assemblages offer ‘a time-limited object for contemplation’ (2006: 102) that underscores their contextual and provisional nature. This point is crucial for exploring experiences with breast cancer. Because the different assemblages are temporary, women need to reassemble and renegotiate them when circumstances change. These configurations involve both material and non-material associations, transformations of the self and attempts to redefine one's position in the world. Some of the formulations within the assemblage approach tend to present these as ‘states of being’, or to argue categorically against the existence of subjectivities. In my analysis I, on the other hand, often explore assemblages as work conducted by different actors – from the cognitive/emotional work of making sense of one's illness, to organising and navigating healthcare systems. In this sense, my use of assemblage as a concept privileges highlighting the uncertainty and incompleteness of different kinds of relations, as well as how activities that are usually understood as purely cognitive or limited to the coordination of individuals have an impact not only on the bodies but also within the bodies of patients, being ultimately linked to medical interventions.

I consider assemblage as a general-level concept that is on the same level as, for instance, the structure or practice, and that is capable of offering insight into social phenomena located at different scales. My choice of assemblage as a framework for the analysis derives from its capacity to conceptualise fluid and uncertain relations as those that emerged in my fieldwork. Fluidity and uncertainty inform not only the patients’ experiences (e.g. Greco, 2022c) but also aspects often presented as specific and stable, including targeted therapies and therapeutic pathways. Further, the concept of assemblage illustrates how apparently remote social constructs, such as epidemiological tools or the regulation of healthcare systems, can affect individual bodies of patients.

As with all general-level concepts, particularly those focused on fluid relations, assemblage poses the risk of encompassing everything and, therefore, losing analytical power if it is not delimited in some way (Duff, 2023). Rather than confining the concept at a specific level, I use different declinations of assemblage – some linked to existing concepts and others taken inductively from my data – to provide a rigorous analysis. Such articulations are the focus of the next section.

The articulation of assemblages

In this book, I consider assemblages at three levels: the body level, the macro-institutional and cultural level, and the socio-relational level. Within these levels, a number of different processes can be understood as different typologies of assemblages. At the body level, the bodies of patients are transformed by different treatments, both materially (e.g. through surgery and drugs) and by establishing links between bodies, cancerous cells, and medical tools such as protocols, survival curves and the promises of personalised medicine. I explore such phenomena through the concepts of medical-bodily assemblage, indicating both biomedical procedures that directly shape patients’ bodies – such as surgery – and the more indirect connections between biomedical concepts and tools and the patients’ bodies. At the institutional and cultural level, global ideas about breast cancer built within biomedicine, and cultural discourses about the disease, are transformed when introduced into local contexts and further negotiated and redefined by patients. Such phenomena can be understood through the concepts of cultural-political assemblage – that is, how public discourses about breast cancer are negotiated collectively and individually; of organisational assemblage (cf. Tlili, 2008) – which I use to analyse how healthcare organisations set up standardised pathways and protocols to manage the patients; and of bricolage-assemblage – which capture how patients themselves navigate the healthcare system. At the social and relational level, women contend with uncertainties about possible relapse and survival times and with disruptions to their work and to their family, romantic and friendship relations by assembling provisional and tentative biographies and social roles. These aspects can be understood through the idea of the biographical assemblage, that is, how patients make sense of their own experience and try to understand their possible future, and relational assemblage (Lahti and Kolehmainen, 2020), that is, how relations between patients and the people around them change as a consequence of the illness.

Breast surgery represents the most visible process of bodily assemblage through which bodies are reassembled by breast cancer: tissue – and, in some cases, the whole breast – is removed and, for those that choose to undergo reconstruction, the breast is recreated by either a prosthesis or using auto-transplant techniques (with tissue from other parts of the body). Beyond surgery, bodies are further transformed by the side effects of radiotherapy and drug therapies, including chemotherapy and hormonal therapy. The embodied effects are linked in a causal chain with several medical tools (Fox, 2011), in processes of medical-bodily assemblage. In other words, decisions about which therapies to administer, when and for how long, depend on medical tools such as estimation techniques, guidelines and organisational and procedural criteria. Among these tools are survival curves, which plot the percentage of patients with a given kind of cancer who are alive at specified intervals, and estimates of the risk of cancer relapse after treatment (Jain, 2013). The benefits and side effects of treatments are balanced based on these probabilistic estimates. The introduction of new treatments also depends on both clinical trials and local authorisations of new treatments, with the latter based on efficacy and cost considerations. Treatment combinations are increasingly standardised by national guidelines, and the distributions of sequences of treatments across different medical institutions are increasingly standardised by local patient pathways. Thus, the ways that different medical tools define the impact of a disease and its treatments on patients’ bodies align with the general concept of assemblage, especially its evocation in the idea of ‘human, social and technical machines’ (Deleuze and Guattari, 1980: 50). Such medical-bodily assemblages intersect with organisational and cultural-political assemblages. The standardisation of treatments and the standardisation of pathways are both discourses central to contemporary biomedicine, which aims to create optimal approaches that are universally valid. Dominant cultural discourses around breast cancer also have a global reach, defined by the emphasis on early diagnosis, expectations about positive transformations, and the pink ribbon approach of glamorisation and cause-related marketing (King, 2006; Sulik, 2011). The concept of global assemblages (Collier and Ong, 2007; Ong, 2016) describes how these phenomena with claims to universality are adapted to local histories, values, politics and organisations. This entails both the development of local biomedicines (Lock, 2017) and reconfigurations of cultural discourses, advocacy and activism.

Once global biomedicine has been adapted to local healthcare systems, the consequent standardisation still leaves gaps in patient trajectories. Extensive gaps in cancer knowledge, together with the probabilistic nature of much of what is known about the evolution of cancer, leave patients needing to actively assemble the available information to make sense of the disease and plan their lives. Similarly, women with breast cancer confront cultural discourses that promote normative ideas of patienthood, ranging from adherence to screening and treatments, to gendered ideas about the appearance and the attitude one should maintain during treatment and including moral requests to use the cancer experience to improve oneself. Both these processes can be understood as aspects of biographical assemblages through which patients make sense of their experiences. Actual experiences of navigating healthcare systems are often far less linear than the ideal version presented in patient pathways. Patients often have to produce bricolage-assemblages, i.e. to assemble their own pathway, either to fill gaps in the organisation of healthcare systems or to obtain access to specific preferred treatments. Further, as I discuss in the book, some aspects of the pink ribbon discourse, such as the glamorisation of the disease and cause-related marketing, have seemingly become less important in the countries I study, in a process of redefinition of cultural-political assemblages. However, normative ideas of patienthood persist.

Finally, the impact of breast cancer extends beyond the body and involves patients’ biographies, life perspectives, social roles and relations. The probabilistic estimates about relapse and survival not only guide transformations of the body but also drive patients to deal with the uncertainty introduced into their future lives. Therefore, patients need not only to make sense of their biography, including the disease, but also to assemble partial and provisional visions of the future that might await them, visions always tainted with uncertainty, all of which constitutes biographical assemblages. Furthermore, the disease and the treatments limit the capacity to work and socialise by changing the body and the status of cancer patients. In a neoliberal context, women often have to assemble a new professional profile that includes the limitations introduced by the disease. New relations emerge, particularly around a shared disease (Rabinow, 1996), while other relations do not hold. This requires women to manage relational assemblages, reassembling existing and new connections while managing the expectations to provide care that continue to fall upon women even after the diagnosis (Sulik, 2007).

These are not only theoretical considerations. Assemblages describe concrete situations, such as having prostheses or one's own tissue inserted, having to learn about new therapies and think of one's survival time, consulting several doctors and pondering the need to stop working because the treatments make it impossible to continue.

Paradigm changes in breast cancer regimes

Breast cancer is presented as a success story in oncology. The development of cancer screening campaigns, among which those for breast cancer are some of the most visible, has promoted the belief that ‘early diagnosis saves lives’. The historian of medicine Ilana Löwy explains that the early twentieth century saw the affirmation of a conceptual framework, or ‘cancer schemata’, according to which the idea that ‘small, localized tumours were an early stage in the development of a malignancy was linked with the idea that cancers can be cured at that stage’ (Löwy, 2010: 2). Thus, the early stage is considered a window of opportunity during which identifying a tumour can radically change the prognosis. This linear vision of the development of cancer is only partially correct, as it does not account for the specific biology of the tumour, nor for the fact that the smaller dimensions of the tumour at diagnosis do not exclude the possibility that malignant cells that could produce future metastases are already circulating in the blood or the lymphatic system. Still, the model remains dominant both within biomedicine and in the media and social representations of breast cancer. The emphasis on early diagnosis, and the campaigns that both public health organisations and major advocacy organisations promote, are the most visible expressions of such cancer schemata.

A diagnosis of breast cancer is followed by a series of treatments, which have been synthetised in the ‘slash/poison/burn’ triad, or surgery, chemotherapy and radiotherapy. These approaches, which have the objective of ‘curing’ the tumour by eliminating it, define a therapeutic ‘cancer script’ (Löwy, 2010), that is, a sequence of treatments to which a person with breast cancer should submit. There is a strong link between the therapeutic script and the emphasis on early diagnosis, as the idea behind the therapeutic script is that the linear progression of cancer can be interrupted by treatment, especially if the tumour has been ‘caught early enough’. Early diagnosis is thus promoted as the best way to obtain optimal results from the treatments, and at the same time every improvement in treatment is presented rhetorically as increasing the need for an early diagnosis. One example can be found in the introduction of conservative breast surgery following clinical trials in the 1980s, which showed that a quadrantectomy (that is, the removal of one quadrant of the breast) followed by radiotherapy resulted in the same survival rates as the previously prevalent treatment, mastectomy (that is, the removal of the whole breast). Conservative surgery for smaller lesions thus introduced the idea that early detection can save not only patients’ life, but also their breast.

Early diagnosis further shapes what US sociologist Maren Klawiter has termed ‘cancer regimes’ (Klawiter, 2008). The first regime, that of medicalisation, was put in place in the first half of the twentieth century, and included women with breast cancer symptoms. The regime of medicalisation depicted the breast cancer as curable, especially through radical surgery. The second regime, which Klawiter defines as biomedicalisation and locates as starting in the 1970s and 1980s, is strongly determined by the availability of effective screening tools. In effect, in the biomedical regime breast cancer is redefined as a risk for all women, and public health policies extend screening to women with no symptoms, who are reframed as being ‘at risk’. The development of genetics and the discovery of the BRCA genes mutations has further redefined the definitions of risk for women without symptoms. As the carriers of BRCA mutations have a higher risk of developing breast cancer, ‘pre-vivor’ identities have developed around BRCA (Gibbon, 2007; Gibbon et al., 2014), and mastectomies of healthy breasts have been introduced as a possible preventive measure (Löwy, 2010).

In Assemblages of cancer, I discuss another change of regime. Despite early diagnosis and the availability of effective treatments, the number of cases in which an early diagnosis does not ensure a positive outcome has opened the way for what can be defined a regime of personalisation (Greco, 2024). Some of the patients who successfully complete all treatments still develop metastases at a later date, along with those who are metastatic at first diagnosis. Patients with metastatic breast cancer will almost certainly die from breast cancer; the key question is when it will happen – how long the disease can be kept at bay. Metastatic breast cancer has been a major site of medical innovation with the introduction of new treatments, often defined as ‘personalised’ or ‘stratified’, aiming to target the specific biochemical properties of a tumour, such as the presence of receptors sensitive to specific hormones or proteins. The new treatments aim to extend survival times, but the extension of the survival time is dependent upon the availability of and access to a new array of treatments and therapies. At the same time, the results of targeted therapies, even when successful, remain highly uncertain, and patients often live in a precarious situation in which the assemblage work, even in the best-case scenario, has to be repeated several times – for instance, to find new treatments when a line of treatment stops working.

Breast cancer as a social paradigm for cancer survivorship

In 2014, a campaign organized by the British charity Pancreatic Cancer Action featured an image of a young woman with a bald head and the quote ‘I wish I had breast cancer’. This image is part of larger project in which patients with pancreatic cancer expressed the wish to have a different type of cancer. An explanatory text offered some context to better understand these shocking quotes: pancreatic cancer has some of the lowest survival rates among cancer subtypes, and many patients die within a few months of their diagnosis. In this sense, pancreatic cancer is not a success story within oncology. As expected, the campaign generated vast debate and also drew critique. This episode captures the tensions around the phenomenon that anthropologist Kirsten Bell has described as the ‘breast-cancer-ization’ of cancer experiences (Bell, 2014). Breast cancer has been turned into a reassuring pink ribbon (chosen as a badge for breast cancer campaigns), and its prominence in the media has turned the disease into a template for the right behaviours and emotions that should accompany also the diagnoses of other kinds of cancer.

Along with the therapeutic cancer script, that is, as mentioned, the sequence of treatments that a patient should undergo, there is a ‘social script’ for breast cancer (Klawiter, 2008). This script includes a set of prescriptions and expectations defining how patients should behave, their duties and the socially appropriate ways to react. The therapeutic script and the social script mutually reinforce each other, as the promise of cure following an early diagnosis is linked to the injunction to follow the screening recommendations and exercise optimism in the face of a diagnosis. Both are located in cultural and biomedical landscapes that define practices and behaviours linked to the treatment of cancer and that inform patients’ experiences of the disease. Breast cancer has become the paradigm both for medical success and for the optimistic approach required of patients. Awareness campaigns, ‘pink’ rhetoric and cause-related marketing have turned breast cancer into a linear experience that starts with a timely diagnosis and ends the day the last treatments are administered. One of the main shortcomings of this simplified and marketised presentation of breast cancer is that it leaves out the complexities of the disease. Women who, without or despite an early diagnosis, develop metastatic breast cancer are usually not part of this optimistic narrative. However, this representation of the disease is gradually changing: the lengthening of survival times for metastatic breast cancer and the expansion of the regime of personalisation are fostering new experiences of breast cancer and new forms of activism.

Through breast cancer awareness raising, women have been offered constricting social scripts (Klawiter, 2008) marked by gendered definitions of courage and resilience. These scripts are gradually incorporating the experiences of women living with metastatic breast cancer, with the latter defined as an ‘incurable but treatable condition’. The individualistic and consumeristic ideas of breast cancer until recently emphasised the possibility of curing breast cancer; now these ideas are changing to include the possibility of living with a treatable form of cancer. In this way expectations of optimism and resilience are extended to patients with terminal cancer. However, the recent nature of these changes creates a fluid and unstable situation in which new and old tendencies coexist. Both women living with early stage and women living with metastatic breast cancer are presented with contradictory advice and information. Patients are invited to trust and follow traditional biomedical patterns – such as taking part in screening programmes – while seeing that this is not enough and that many women who develop metastases need to find a way to access the newest drugs or even a clinical trial. At the same time metastatic breast cancer is increasingly being presented as ‘chronic’, a reassuring medical term, as it is traditionally used to describe long-term, manageable conditions such as diabetes (Greco, 2022a). One of the aims of Assemblage of cancer is to offer an analysis of how new and old tendencies are changing the cultural landscape of breast cancer, and to explore the impact of these changes on women's lives.

One of the reasons why multiple actors – such as charities and corporations – have been so successful in creating a neoliberal model of survivorship is because breast cancer can be constructed as a female disease, with women pushed to abide by gendered norms and roles. Exploring the gendered nature of the disease is necessary in order to understand how such a dominant model of survivorship has been built.

Breast cancer as a prism for gender

Breast cancer is presented as a female condition and, although it is recognised that malignant cells can also develop in ‘male’ breast tissue, male breast cancer is usually considered a rare and unusual occurrence. However, we do not know how many of those diagnosed with breast cancer perceive themselves as women (or men). Queer theorist Eve Kosofsky Sedgwick, discussing her own breast cancer diagnosis, writes: ‘One of the first things I felt when I was facing the diagnosis of breast cancer was, “Shit, now I guess I really must be a woman”’ (Kosofsky Sedgwick, 1993: 262). Kosofsky Sedgwick perfectly summarises the gendered restrictions of breast cancer: the insistence that the disease is a threat to femininity is in itself a skilful act of construction of femininity as a vague but powerful entity that deeply influences women's lives. Breast cancer, even more so than other typically female cancers, such as endometrial or ovarian cancer, ⁷ is considered an attack on femininity, and this stems from the centrality of the breast in women's lives. Female breasts are among the most visible body traits used to differentiate between men and women. The term ‘mammalian’ – which derives from the Latin mamma/mammae: breast – was chosen by Linnaeus to redefine the zoologic taxonomy. ‘Mammalian’ creates a link between human beings and ‘all other organisms with hair, three ear bones and a four-chambered heart’ (Schiebinger, 1993: 40). While reason – a human feature that through categories such as Homo sapiens is defined as eminently male – differentiates human beings from the other animal species, female breasts link humans to other living creatures (Schiebinger, 1993: 55). Through their breasts, women are anchored to the natural world, and therefore it is considered natural for women to have breasts. Prevention campaigns often rely on erotic images, contributing to the sexualisation of the disease, and they have become just another opportunity to disseminate a standardised and normative image of the female body: young, slim and toned (Saywell et al., 2000). During treatments, women can be offered to participate in programmes teaching them how to skilfully apply make-up to hide the signs of treatments (Kendrick, 2008), and many women I met during fieldwork were offered a small tissue prosthesis immediately after a mastectomy.

These examples remind us that the changes brought by breast cancer appear on multiple levels. On the first level, different embodied transformations derive from the condition. Different forms of surgery involving the removal of the breast have been, since the end of the nineteenth century, one of the treatments for breast cancer. Since the 1980s, biomedicine has paid increasing attention to surgical treatments that conserve most of the breast, and to breast reconstruction. Recently, this has developed further with the aestheticisation of oncologic surgery, which now aims to recreate the breast with a better appearance than it had pre-diagnosis.

The aestheticisation of oncologic surgery is another example of how breast cancer can be used to reinforce traditional ideas of femininity. In this case, the breast becomes an object to be saved, lost, rebuilt and rediscovered, but it can also be considered a prism through which patients are invited to refract the different aspects of their experience. However, the femininity built through breast cancer goes beyond the body to become a prescriptive norm regarding behaviours, attitudes and ideas. If the symbol of bodily femininity is compromised, women are invited to redefine femininity in behavioural and moral terms, and to implement a series of strategies that preserve it, to show that they are still women and still feminine.

The intersection between the effects of the disease and gendered norms about the body brought the women I met to develop different kinds of answers, including both critiques of and negotiations with biomedical and social expectations. The reactions to these prescriptions are different, rich and imaginative. Far from a sweetened and positive view of disease as an opportunity for improvement, many of the women I encountered offer a political reading of their experience. If we look at breast cancer through the prism of gender, we can see that there are two different processes of assemblage located in and through women's bodies and their experiences with illness. On one hand, social, cultural and biomedical expectations invite women to assemble the pieces of their experience in a way that reconstructs their body and their role in society according to the traditional gender norms. And while this is in fact the experience of some of the women I met in my research, for many others cancer was an opportunity to reshuffle and reassemble their bodies and their lives in a different order. These stories do not see severe illness as a source of inspiration, but as a political catalyst, capable of providing a critical perception of the world. Assemblages of cancer is also a story of the numerous acts of resistance that start from the body and branch out into the different aspects of women's lives, from professional to social to intimate.

Breast cancer in Western Europe

The Western European focus of this book is linked to general considerations about the local variability of both illness and medicine. As mentioned, while biomedicine insists on a standardised nature of international medical science, cancer acquires different meanings and is treated differently according to the place, as a consequence of the variation between local biomedicines and between local biologies (Mathews et al., 2015, following Lock, 2001). This also means that ‘global’ biomedicine goes through global assemblages (Collier and Ong, 2007; Ong, 2016) when introduced in a specific local context. In this sense, the local assemblages of medicine do not only involve medical institutions and regulations, but extend to therapies themselves. Further, when compared to the extensive literature on breast cancer in North America (e.g. King, 2006; Klawiter, 2008; Sulik, 2011; Jain, 2013), my study of Italy, France and the UK shows distinct patterns in terms of the organisation of healthcare, public images of breast cancer, and forms of advocacy and activism, that it is important to analyse. My study illustrates the relevance of ethnographic engagement with the functioning of healthcare systems. Ethnographic attention to healthcare systems has been mostly limited to two kinds of contexts. The first comprises countries in the Global South with limited healthcare resources, where access to cancer treatments is often delayed and partial (see, e.g. Livingston, 2012, on Botswana; Nédélec, 2018, on Ivory Coast). The second is the United States (US), in which a significant part of the uninsured or under-insured population is excluded from some treatments (see Dao and Mulligan, 2016).

My overall research has allowed me to compare three Western European countries with advanced universal healthcare systems, in which the entire range of treatments for breast cancer is usually publicly covered. Such contexts have attracted less ethnographic attention, apparently based on the assumption that universal coverage avoids inequalities that would need to be explored in detail. One book-length exception is the volume edited by Andersen and Tørring (2023), which shows how cancer in Denmark can be understood through the welfare state. The authors analyse how the welfare state offers an implicit pact to protect citizens and ensure equal life opportunities, but also asks citizens not to burden the healthcare system with avoidable requests (which can contribute to delays in cancer diagnosis). They show how waiting time in healthcare has become a proxy for the more irregular process of tumour growth (Andersen, 2023: 9), motivating an expansion and acceleration of cancer diagnosis and care. Tørring (2023) shows the process through which this expansion and acceleration has been advocated and found a place within the Danish welfare state, while Merrild (2023) shows how, despite this, the Danish healthcare system cannot offer equality to marginalised people who embody multiple health problems deriving from poverty and exclusion. ⁸ The three countries I analyse have never had welfare systems as strong as those in the Nordic countries, but universal healthcare has held legitimacy (especially in the UK). In this context, I explore how the organisation of healthcare systems and the need to navigate them and negotiate access to treatments influence patients’ experiences, even in the context of full healthcare coverage.

In this sense, the study of breast cancer reveals some of the significant transformations of healthcare systems in Western Europe. These include increasing privatisation and, since breast cancer is a branch of oncology characterised by significant medical innovation, the importance of clinical trials, experimental treatments and new therapies that are often costly for public healthcare, as well as ongoing issues of unequal access for patients. The comparative approach further helps to understand the relevance of the different factors that influence patients’ experiences, which is in line with the extended case method approach (Burawoy, 2000; 2009 – see also the next section). Comparative work allows us to differentiate between traits that are common to different contexts and traits specific to a context, identifying what can be generalised and what is more local. Further, conducting an analysis that is multi-sited/comparative and that looks at different scales within a given context allows us to see the relative weight of transnational and local factors in the experiences of individual actors. The comparative stance has been a valuable tool to explore how ideologies and cultural constructions around breast cancer have shaped the experiences of the disease, but also how dominant culture paradigms (for instance, the well-known pink ribbon culture) have been refashioned in local contexts. Comparison has also been a helpful tool to approach biomedical constructions of breast cancer, and their impact on the different actors involved – such as patients and medical professionals – can vary in different contexts. In this case, the comparison between different countries offered a deeper understanding of the social and cultural traits that inform individual experiences of breast cancer and the different processes of assemblages that women put into action.

Constructing fieldwork

This book is the result of ten years of study of breast cancer. My overall research has been a multi-sited ethnography (Marcus, 1995) of the experiences of breast cancer in three Western European countries – France, Italy and the UK – conducted between 2011 and 2020. I focused my research on specific regions within the three countries, conducting ethnography in the Paris region (Île-de-France) in France, in Greater Manchester and Cheshire and more generally in northern England in the UK, and in a northern region (Emilia-Romagna) and a southern one (Apulia) in Italy. In each case, however, I also conducted interviews outside these regions, as specific lines of research brought me into contact with patients and medical professionals in other areas. This focus on specific regions has allowed me to reconstruct the formal (e.g., standardised pathways) and informal networking of medical institutions. It has allowed me to become familiar with the different institutions involved in the experiences of many of the patients I interviewed. In the case of Italy, which is marked by a particularly pronounced north–south divide in terms of economic conditions (and stigma against the south – Greco, 2016a; 2019), including both a southern and a northern region allowed me to capture one of the main axes of inequality in the country. Overall, my fieldwork has been constructed in a way that resembles the Anti-book created by Chilean artist Francisca Prieto. This artefact is, at a first sight, a booklet containing a poem, which cannot be read as long as the traditional book format is maintained: the text becomes intelligible only when the book format is altered and the pages are assembled in a three-dimensional icosahedron. Similarly, my fieldwork can also be defined as an ‘anti-fieldwork’. I did not spend a well-defined amount of time ‘away’ in the country or region that I was studying, but, because I studied, worked and lived as a migrant in two of the countries I discuss here, my fieldwork and my personal life were strongly intertwined. I lived in the same contexts as the women I interviewed, and I went to the same medical facilities both as a researcher and as a patient for my own periodical screening. Disassembling the established disciplinary boundaries of the fieldwork has given me a unique perspective, which has been substantiated by more traditional methodological perspectives. ⁹ In my research I have followed the extended case method approach (Burawoy, 2009) to compare the experience of illness in different contexts, to connect the ethnographic data with structural phenomena located at a larger scale than the one I directly observed and to advance theoretical understandings by exploring the deviation of my research results from existing theories. The research has been informed both by a critical medical anthropology approach (Singer and Baer, 1995) and by a feminist approach that gives priority to understanding the experiences of women with breast cancer (Greco, 2016b).

What I present in the next chapters are, first, illness narratives of women with breast cancer. Although they have focused on different aspects – and a few interviewees preferred not to discuss certain details of their experiences – all have presented rich narratives. My interviews with medical professionals were more focused on the main questions of the three different research projects I conducted. In the first, conducted in Italy and France, the focus was mostly on breast surgery and reconstruction; in the second, conducted in the UK, on metastatic breast cancer; and in the third, also conducted in the UK, on how medical innovation and changes in healthcare policy have influenced patients’ experiences. However, in each case the interviews with medical professionals extended to other aspects and experiences of the illness.

During fieldwork, I collected more than 150 in-depth interviews with patients with breast cancer, activists and members of advocacy groups, and with medical professionals working on breast cancer (oncologists, surgeons, nurses, radiologists, psycho-oncologists and administrative staff). I used different strategies to contact medical professionals and patients. I contacted some doctors directly, especially those who had published studies on different aspects of breast cancer, and I contacted other medical professionals through a snowball procedure. For the interviews with patients, in the UK, France and northern Italy, I used the mediation of medical professionals and patients’ associations in addition to a snowball procedure involving patients whom I had already interviewed. For the interviews conducted in southern Italy, I also used my own family and personal network. The assemblage of different approaches allowed me to come into contact with a diverse group of patients in terms of age, class and formal education. One dimension of diversity that I was not able to include in my research was the ethnic and racial one. Almost all the patients I met were white, although a few had a migratory background. This was a result of breast cancer patient advocacy being predominantly white in all three countries, and also of the fact that, when contacting patients through medical institutions, I almost exclusively met white women. This is certainly a limitation of my research, and more studies with women of colour are needed for the European context. On the other hand, the medical professionals I met were more ethnically and racially diverse, especially in the UK, given the National Health Service's (NHS) history of recruitment from abroad.

In each case, I avoided conducting single-institution ethnographies, and I included medical professionals from, and patients in treatment at, different hospitals. This allowed for a wider horizon when approaching the study of phenomena that go beyond specific institutions, including medical innovation, healthcare policies, medical cultures and the social representations of breast cancer. This approach further allowed me to explore the unequal distribution of medical techniques between institutions. Finally, it was necessary to avoid limiting my ethnographic focus to single institutions because patients’ (and in some cases, medical professionals’) experiences are not limited to a single institution. In each country, patients’ trajectories while in treatment can cover multiple institutions, although I found stronger patient mobility in France, and especially in Italy, while in the UK the system of referrals and pathways restricted the mobility of patients, who were effectively limited to the nearest hospital offering cancer treatment and specialised centres offering treatments not available locally.

I have integrated the interviews with formalised observations of events organised by patients’ associations and/or medical professionals, and of medical conferences. In addition, ten years of continuous exchanges with patient-activists inform my understanding of the political and cultural implications of breast cancer.

Finally, I have included in my research several written sources, such as newspaper articles, websites on cancer, informative materials produced by medical institutions, pathographies written by patients and extensive corpora of medical literature. The documentary part of my research allowed me to obtain further insight into the experiences of medical professionals and patients, to reconstruct public discourses about breast cancer and the history of innovation in treatments and to better link my ethnographic data to structural phenomena. These critical analyses of medical literature have allowed me to reconstruct specific discourses, both about breast cancer and about related social issues, such as gender and behavioural norms, as they emerge from scientific production in biomedicine.

In this book

In introducing A Thousand Plateaus, Deleuze and Guattari observe how books themselves are assemblages bringing together different materials and points of view and that ‘There is no difference between the subject of the book and the way in which it is done’ (Deleuze and Guattari, 1980: 10). This book indeed brings together different research projects conducted in three different countries, more than a hundred individual experiences explored through in-depth interviews and several other materials such as policy documents, medical literature, pamphlets, websites and so on.

Assemblages of cancer focuses on the experiences of breast cancer in Western Europe. In line with the levels and types of assemblage introduced above, in Chapters 1 and 2, I focus on organisational and cultural-political assemblages on an institutional and cultural level; in Chapters 3 and 4 on medical-bodily assemblages that involve the bodies of patients; and in Chapters 5 and 6 on biographical and relational assemblages conducted by the women.

In Chapter 1, I show how global assemblages (Collier and Ong, 2007; Ong, 2016) involving biomedicine and organisational assemblage involving local healthcare systems define the configuration of breast cancer therapies in the three countries. I show, in particular, the different ways the universal public healthcare systems of the UK, France and Italy have seen different forms of privatisation. I further discuss how medical innovation is accompanied in some cases by delays in authorising costly new treatments (especially in the UK) and the unequal diffusion of techniques and treatments throughout the territory. Secondly, I present an analysis of how patients produce bricolage-assemblages involving their own therapeutic trajectories to fill the gaps in the organisation of healthcare, navigate the systems and negotiate specific treatment options. In particular, I discuss how this second type of assemblage is enacted through different kinds of health-related mobility, both local and, particularly in Italy, intra-national.

In Chapter 2, I discuss a second area of global assemblages linked to breast cancer: how the dominant international discourse about the disease has been partially reframed in the three countries, through cultural-political assemblages that renegotiate the dominant public discourse linked to the pink ribbon narrative. I show how North American pink ribbon campaigns have partially lost their dominant role in the three countries, but also how this has not put into question the emphasis on early diagnosis and the idea that cancer should bring a positive change in one's life. I further discuss the associative panorama in the three countries and how, for the patients involved in associations, the experience is a way to assemble answers to both the disease and the dominant cultural messages. Finally, in the chapter, I discuss an aspect of the biographical assemblage: how patients not involved in associations try to make sense of the dominant messages about the meaning of breast cancer.

Having introduced the broader policy, political and cultural contexts, in Chapter 3, I move on to discuss how the evolution of biomedicine has influenced breast cancer. I continue to discuss global assemblages between biomedicine and its local implementation in medical-bodily assemblages, shifting from healthcare systems to the activity of medical professionals. I explore the tensions between the ambition to segment breast cancer further, find effective treatments for each patient and transform metastatic breast cancer from terminal to chronic by introducing new treatments. However, I also show how different interviewees recognise the gaps still existing in breast cancer treatment. Both developments further establish medical-bodily assemblages in which patients’ bodies, tumour cells and biomarkers are linked with new biomedical apparatuses. I finally discuss how patients react to such evolutions, how they produce bricolage-assemblages to access specific treatments, and biographical assemblages to attempt to understand how treatments could lengthen their lives.

In Chapter 4, I continue the analysis of medical-bodily assemblages, focusing more specifically on the physical modifications of patients’ bodies deriving from breast surgery (which in turn includes tumourectomy, mastectomy and reconstruction). First, I focus on the biomedical perspective and how reconstructive surgery aims to re-establish and, in some cases, create ex novo breasts that conform to a gendered canon. Next, I show how most women aim to return to a pre-surgical condition; however, in some cases, this can mean just finding a volume that can pass as a breast in social situations or the acceptance of asymmetry or flatness. This involves bricolage-assemblages and navigating and negotiating the healthcare system to access the preferred reconstructive options. It further involves assembling a public presentation of one's body, especially if choosing to remain asymmetric, depending on different contexts. I conclude by discussing how the different aims of patients and surgeons illustrate the role of gender norms in breast cancer experiences and, at the same time, highlight how post-diagnosis bodies are entangled in gender norms.

Shifting from bodily to biographical assemblages, in Chapter 5, I discuss the different forms of uncertainty that breast cancer introduces in patients’ lives. A cancer diagnosis represents a shock, and in this chapter I discuss how patients attempt to manage uncertainty by pursuing information and access to institutions and professionals they can trust. I further show how uncertainties remain with the patients for a long time, regardless of the immediate outcome. If they obtain the best result achievable, ‘no evidence of disease’, the possibility of a relapse and the side effects of treatments continue to represent uncertainties for several years after the diagnosis. Patients with metastatic development enter a more radical uncertainty, as death from cancer is inevitable, and while survival times have improved in the last years, the ability to predict the life expectancies of individual patients is limited. In both cases, the probabilistic and open-ended perspective of breast cancer makes it necessary to attempt to assemble provisional and fragmented visions of one's future.

In Chapter 6, I discuss relational assemblages. I first show how breast cancer can influence women's working lives in different ways, with some women deliberately reducing their involvement in jobs that they were not satisfied with and others with greater job satisfaction finding obstacles to continuing to work as before. Next, I look at the re-assemblages of family relations and of gendered care responsibilities, examining to what degree different interviewees were able to rely on their immediate families, but also cases in which support was limited, or the illness brought an end to marriages and relationships. Finally, I discuss new forms of sociality developing around the illness, including the redefinition of friendships post-diagnosis.

In the Conclusion, I return to how individual illness experiences and the different political, biomedical and cultural contexts interact. In light of the different analyses conducted in the book, I offer a systematic discussion of the various assemblages linked to breast cancer. I also discuss how breast cancer highlights the differences between the UK, French and Italian healthcare systems, and the economic and social meaning of breast cancer in the US. Finally, I return to the social meanings and implications of the assemblages of breast cancer and discuss how many of the uncertainties visible in breast cancer are also relevant to most other disease–society assemblages.