Illness shatters the boundaries of our body, identity and life. A breast cancer diagnosis throws women into a state of deep confusion as they face an imminent risk. Cancer infiltrates and transgresses (in the etymological sense of ‘going beyond’) what Donna Haraway (1989: 15) defines as the ‘strategic assemblage’ of the self. In this book, I have explored how women respond to breast cancer's transgression using the concept of assemblage. I have explored three levels of assemblages: bodily, institutional and cultural, and socio-relational, and shown how assemblages can be understood through different articulations of the concept. By considering these different types of assemblages, we gain a deeper understanding of the different aspects of breast cancer experiences.

The assemblages informing women's experiences begin with their bodies, the first element to be altered by the disease; the medical-bodily assemblages expressed through the surgical and pharmacological treatments linked to the disease alter even more the tissues and the biological processes of patients’ bodies. Moreover, breast cancer is not only one of the most gendered diseases but also one strongly linked to women's appearance. If we turn our attention from pharmaceutical to surgical interventions, as in the case of reconstruction, the technical possibilities to maintain a traditional female image play a fundamental role in reassembling the body. The alterations go beyond treatments and include redefinitions of the ill body through the stages of cancer and the presence of specific biomarkers and genes. Biomedical tools, including survival curves, standardised medical pathways and protocols, and the regime of personalisation, constituting what I have defined as medical-bodily assemblages, define how patients’ bodies are altered by different treatments. These tools also determine how long patients spend in treatment and the choice of treatments themselves, contributing to transforming the body and the sense of self. The preference for one type of reconstructive technique over another is also linked to the uses that women intend to make of their bodies, which constitute a first aspect of the biographical assemblage. This is because physical changes seep through the body and influence patients’ social, professional and emotional lives, affecting the relational assemblages linked to the disease. Furthermore, for many women, reconstruction is not necessary. They find themselves living in asymmetric bodies, which redraws the boundaries of the self and allows women to negotiate new relations with the dominant ideas of beauty and normality. In doing so, breast cancer patients advance the deconstruction of the normative ideas that constrict the bodies of all women, regardless of whether or not they have received a cancer diagnosis. The changes brought about by the disease often continue for years: scans are repeated annually, hormone therapies are prescribed for five or sometimes ten years, prostheses need to be changed and, for younger women, breast cancer often means an early entry into the changes of menopause. At the same time, the risk of a relapse is always present, even several years after the initial diagnosis. The post-diagnosis body is a precarious and unstable entity, and managing its instability requires specific biographic assemblages.

If, as Collier and Ong (2007) argue, biomedicine is a global assemblage that adapts to local contexts in a universal healthcare context, new therapies introduced into public healthcare systems need to be not only effective but also economically sustainable. New therapies need to be integrated into local systems through specific organisational assemblages, which can lead to friction with how these local systems are organised (as in the case of metastatic breast cancer therapies in the UK and France). Even when this global assemblage is completed and the therapies are introduced in the protocols and formal pathways, patients still have to navigate the system to ensure their therapeutic pathway is correctly assembled and negotiate access to (or avoidance of) specific treatments, conducting their own bricolage-assemblages. The treatments that patients access, in turn, are based on specific medical-bodily assemblages that define links between biomedical concepts and the organs and tissues of patients. Such medical-bodily assemblages also guide specific bodily assemblages through which surgery and other physical transformations shape patients’ bodies.

Standardised protocols can only partly predict the impact of the disease and the therapies. The variability of both efficacy and side effects, and a range of possible complications, mean that medical-bodily assemblages change from case to case. Women respond by constructing their own biographical assemblages of meaning and practice. Searching for information, consulting more than one doctor and asking for second opinions, learning how to navigate health systems, switching between public and private healthcare and deciding which treatments to undergo while interrupting others: all these actions represent attempts at finding meaning and solutions that are not in opposition to those proposed by biomedicine, but complementary to them, in an effort to strike a balance between biomedical injunctions and patient needs.

Alongside the modifications introduced by biomedicine, other changes are linked to the social and cultural context. As we have seen, although the rhetoric of the pink ribbon is also present in Europe, it is often manipulated in a utilitarian way by associations that use a known aesthetic to locate themselves in the associative panorama, establishing new forms of cultural-political assemblage. There is now some degree of criticism of the rhetoric of the pink ribbon and the type of activism – based on glamorisation and cause-related marketing – that the Komen Foundation (among others) exemplifies. As we have seen, a hallmark of breast cancer is its individualisation. From the injunction to avoid dangerous lifestyles, to emphasising personalised therapies, breast cancer is presented as an individual problem. Different forms of associationism developed around the disease amplify these messages, from informational websites and patient meetings organised by local groups, to end-of-treatment workshops. The goal is to construct the ideal patient, a patient capable of taking care of her own health. However, assemblages and changes occur at not only a bodily but also a moral level of the cultural-political assemblages, with the pervasive message that cancer can be an opportunity for moral growth. Patients are asked to follow medical pathways and social and moral scripts, and they find themselves navigating messages that can contradict their experiences. In some cases, they can diverge from these social scripts and assemble new values, usages and meanings. In doing so, they build more personal biographical assemblages from negotiations between different elements, including aspects of their pre-diagnosis life and their own expectations and hopes for their post-diagnosis future. Some patients also adopt a more critical approach to the messages they receive, leading them to what I have defined as political growth rather than a moral one. Both cultural-political assemblages and biographical assemblages involve a ‘montage of dissimilars’ (see Saldivar, 1979) that sees individual aims and goals intersect with external cultural discourses and patients orient themselves among contradictory messages and instructions.

We have also seen that many patients renegotiate the role of the disease in their lives by negotiating treatments. Some patients rearrange and negotiate the therapies, adapting them both to their present and future life, trying to preserve essential functions of their bodies. In these cases, patients know they are contravening biomedical prescriptions and the social script urging them to adapt their behaviour so as to avoid a possible relapse. Selective and negotiated adherence to treatments is part of the bricolage-assemblage and another way of managing the relationship with biomedicine and the ways that biomedicine shapes the body. An individual's prospective biography is partial, contextual, provisional and more open. It requires specific biographical assemblages by collecting information on the possible evolutions of the disease, finding a personal place in relation to the organisation of healthcare, the treatments and the public discourses about breast cancer, and attempting to find meaning in these complex entanglements. Social roles reshaped around the disease do not always coalesce around forms of biosociality linked to breast cancer and its subtypes. Furthermore, personal and emotional relationships often fall apart as a consequence of the disease. Relational assemblages are frequently reconfigurations that include absences in a woman's present life as part of the negotiations required of her.

As mentioned in the Introduction, while I have covered three countries and collected rich materials, the pervasive nature of breast cancer means that there are experiences that I could not include in my analysis. However, other researchers have touched on them. Projects have covered the experiences of cis and trans men with breast cancer (Sledge, 2021) and LGBT+ people with cancers (e.g., Meidani and Alessandrin, 2017; Meidani, 2020; Bryson et al., 2020). Other studies have covered in more detail the intersections between international migration and access to cancer treatments (e.g., Pian, 2015; Kotobi and Sargent, 2023; Ludet et al., 2023) and racial specificities of cancer experiences (e.g., Gibbon, 2016; Madlock Gatison, 2016; Wright, 2023). Incorporating these and further complexities in future studies would expand our understanding of the provisional assemblages of cancer.

Experiences of cancer and experiences of gender

The assemblage processes that have been explored in this book are strongly connected to how illness can be socially interpreted. One of the aims of, and a common thread that runs through, this book has been to explore intimate, embodied events that profoundly altered the lives of the women encountered and to try to understand how a private and complex experience like breast cancer is shaped, defined and influenced by social and cultural aspects. In this book I have illustrated how patients can partly reappropriate, reshuffle and redefine the sense of the illness. The social and cultural elements defying the experiences of disease can be rearranged but not eliminated (or at least, not all of them). Among the aspects that remain, there is undoubtedly the impact of gender. As was seen in the Introduction, breast cancer is a prism for gender. Social constructions, definitions and ideas of femininity and of what is intrinsic and inherent in being a woman are inseparable from the experience of illness. As we have seen, this does not mean that women adhere to these definitions of gender. Medical-bodily, biographical and relational assemblages are, in fact, ways to deal with ideas of gender.

The body is the most visible element in which gender norms are made and unmade. My analysis of surgical practices shows how the female body is the terrain of multiple assemblages – medical-bodily, cultural-political and biographical. However, it also shows how reconstructive surgery is not simply a (re)construction of the canonical image of femininity but also a way to question it. Women who desire a specific reconstructive technique, those who stop at the reconstruction of a volume through the insertion of a prosthesis and decide that they do not need the reconstruction of the nipple or other surgeries, or those who use an external prosthesis illustrate the multiplicity of ways in which normative femininity is realised, and, ultimately, its ephemeral character.

McCann (2018) analysed the adherence to norms of femme femininity in terms of assemblages. One element she emphasises is how this adherence is a way of feeling connected with other women. This approach ‘helps to refigure the core issue of femme as one of belonging rather than visibility’ and ‘offers a way of reconceptualizing the feelings and attachments of at-home-ness that are invoked by femme’ (McCann, 2018: 285). McCann suggests extending this approach to norms of femininity more generally. We have seen how reconstruction is not simply a way to re-establish conformity and compliance with dominant ideas of femininity but also an attempt to regain a sense of ‘at-home-ness’ (to borrow McCann's term) in one's body and life post-diagnosis. For other women, as we have seen, illness becomes an opportunity to escape precise norms of self-presentation and find new spaces for action and individual growth through dissident forms of embodiment.

However, it is not only the body that is made and unmade but also the social roles linked to femininity. Sulik (2007) emphasised how, for many women, illness represents the moment in which they are forced to abandon caring roles and start to receive care, both from the medical system and from their entourage. The stories of the women I met show how the two roles often coincide and are reassembled. Some women turn to their partners and family for support, but they continue to provide support and reassurance. Furthermore, the disease introduces a new temporal dimension in care, the future. Many women find themselves negotiating care practices that can be effective not only in the present but also in a future of which they will not be part. Building memories that will comfort children, partners and friends is indeed an act that responds to a gendered vision of the female role and the organisation of the family. At the same time, other women try to ‘use’ their experience of illness as a way to extend the space assigned to them by gender roles. They try to rebuild the life that breast cancer has shattered in new ways that include empowerment and reappropriation of one's life.

Experiences of gender and illness experiences are strongly intertwined, and opposite tendencies intersect. From reconstructive surgery to the rhetorics of resilience and courage, illness is constructed as an adjuvant of normative femininity. As we have seen, most women do not entirely reject these indications; they are instead subjected to partial, creative and sometimes subversive forms of integration. Analysing these processes through the concept of assemblage is what has made it possible to observe this redefinition of gender norms in breast cancer experiences.

Comparing healthcare systems in transition

The organisation of breast cancer treatments is characterised by rapid, fragmented and costly innovation. In this book, I have focused on the experiences of illness in three European countries (the UK, France and Italy) with healthcare systems that can be described as universal. However, different approaches fall under the definition of universalism. A marked integration of the public and private sectors and significant forms of co-payment characterise Italy. Although none of the patients I interviewed in Italy paid for mastectomies or chemotherapy, it is not uncommon for Italian women to have diagnostic tests and specialist follow-up consultations in the private sector. At the same time, many French women have paid for reconstruction, with the social insurance system and the possibility of it partly covering the costs of private healthcare facilitating the public/private blend. In the UK, the NHS represents the last bastion of public service remaining after the wave of privatisation that swept the country in the 1980s and 1990s. This gives the NHS a symbolic role absent in the French and Italian healthcare systems. Despite this, even in the NHS, as we have seen, several forms of privatisation are creeping in, including in cancer care.

Among the heuristic advantages of comparing similar contexts, there exists the possibility of seeing not only differences but also similarities. In this case, the comparison has highlighted similarities that show how European healthcare systems deal with medical innovations for cancer.

Jain (2013) observes how the for-profit insurance-based US system is characterised by the distorting principle that the funding (and profit) of cancer research depends on maximising the treatments and payments for insured patients with cancer. Beyond the explosion in the cost of cancer drugs, and the speculation on life expectancies that characterises the whole insurance system, it also means that uninsured patients are largely excluded from several kinds of treatments, with even insured patients sometimes driven to bankruptcy by co-payments. This means extracting value from patients who are insured and well positioned on survival curves, while categorising uninsured patients as a low-value, surplus population.

The cost-benefit analysis in universal healthcare systems is not about calculating the life expectancy of each individual patient but, rather, the cost of treatment for the overall group of patients. ¹ In Chapter 3, I have shown an example of this calculation concerning the introduction of trastuzumab. Even in a social insurance system such as the French one, and more so in single-payer systems such as those of the UK and Italy, the assumption is that every drug approved for use in the public sector will be available to anyone. Public discourse focuses on the collective cost of cancer treatments and, in some instances, on the idea that this cost is bound to increase progressively with the ageing of the population. ² The positive aspect is that no patient in any of the three countries is excluded from treatment because they are uninsured, and any co-payment ³ is unlikely to drive them into bankruptcy. The negative aspect is that universal systems cannot curb the rise in cancer drug costs, which sometimes means not covering the costs of newly introduced drugs when their effectiveness and cost-benefit relation are not clearly defined.

Private health insurance presents some of the same issues in the refusal to refund costs for drugs that await full approval. However, in universal healthcare systems, one of the main limits is their (at least partial) obligation to follow the logic of systems built on private insurance-focused systems, asking patients to resort to complementary insurance or pay out-of-pocket to cover the additional, if not the entire, cost of specific treatments.

Consequently, in the three countries I have discussed, some of the social inequalities present, for example, in the US context, are substituted, to a degree, by inequalities linked to the subtype and stage of cancer. Most treatments are provided (almost) for free to all patients, especially if they develop only early-stage breast cancer and do not require any experimental treatment. However, patients who could benefit from experimental treatments, especially if they develop metastatic breast cancer, can find that public healthcare systems do not cover such treatments. The extent to which this coverage may be less comprehensive than that offered by certain private healthcare insurance policies is linked to the local authorisation of new drugs.

Personalised cancer medicine has high costs attached and most often extends life by a few months rather than years, yet it alters the nature of universal healthcare and the principle of solidarity on which those systems are based (see Fleck, 2022). The intersection between policies of retrenchment and the cost of many cancer drugs, with breast cancer at the forefront, is accelerating the privatisation of healthcare systems by creating spaces for patients who can afford to pay for treatment. Some patients, especially in the case of metastatic breast cancer, turn to private services for treatment, which significantly impacts on women who decide to go down this path and women who do not. The presence of a private route is perceived as an element that destabilises a system based on equality. In addition to inequalities between patients who either have or lack additional health insurance and inequalities between patients who can and cannot pay out-of-pocket, there are further inequalities in the cultural and social capital necessary to navigate the system and assemble one's own access to specific treatments, even before needing to pay for them.

Although the healthcare systems in the UK, France and Italy each have their own historical development, which continues to influence local organisational assemblages of biomedicine, they are not stable entities. The partial privatisations, wider political changes and transformations linked to medical innovations are changing the nature of each system. These tensions were particularly apparent during the COVID-19 pandemic, but they also manifest in recurring crises that see healthcare systems described as overwhelmed. Generally speaking, each healthcare system is in transition, holding to its universalism and national history while contending with external global pressures.

Livingston (2012) has analysed the mediation between sophisticated biomedical knowledge and the scarcity of means in a cancer ward in Botswana in terms of improvisation. However, improvisation is not a term that we would immediately associate with cancer care in the Global North, where policy makers and professionals endeavour to improve the organisation of healthcare. The role of scientific language in stabilising and objectifying the reality that scientists study is known (see Wolfgram, 2016), and biomedical language is no exception. Terms such as pathways, protocols and personalised medicine reinforce the idea that not only biomedical knowledge but also biomedical practices are stable, objective and linear. They present treatment pathways that stand in semantic opposition to the improvisation described in the Global South. However, my ethnographic research questions this linearity and shows that tinkering and improvisation also play an essential role in cancer care in the European countries I have studied. Rather than being due to a lack of tools and instruments, the tinkering processes can be traced to gaps in a generally functional system, to complexities introduced by innovations and to the irreducibility of individual patients to the standard. In this sense, the concept of assemblage, and in particular the distance between the organisational assemblages of healthcare institutions and the bricolage-assemblages of individual patients, enables us to capture the heterogeneous, provisional and non-linear aspect of cancer care in Europe, which counters ideas of linearity and objectivity in not only cancer care but also biomedicine more generally.

Breast cancer and disease–society assemblages

My analysis of socio-relational assemblages follows a long-standing notion within medical anthropology, that health problems and social vulnerability are intimately interwoven (see Singer, 2009). We have theorisations of how social and health problems interact dynamically and feed back into each other via the concepts of recursive cascades and recursive debilities (Manderson and Warren, 2016; Rogers, 2022). What we lack is a way to understand how these multiple difficulties are provisionally reassembled without ever being fully resolved.

In this book, I have explored how biomedical and social context elements influence patient experiences. Despite claims that early-stage breast cancer is curable and personalised therapies can turn metastatic breast cancer into a chronic disease, both stages introduce uncertainty into patient lives. The fear of a relapse, the side effects of treatments and the impact of the disease on the social life of the patients are elements that women must consider as they navigate their post-diagnosis life. A relevant factor is age, with younger patients finding themselves suffering the effects of an increasingly precarious world of work amid the dismantling of welfare state guarantees.

As discussed in this book, breast cancer is a highly gendered disease, in terms not only of its bodily changes and public discourse but also of how it impacts on women's place in society, including their work and their relations of care. If, for the women interviewed in France, the welfare state guarantees still offer some forms of protection and support (for example, in the case of childcare), personal support networks play a more central role in the UK and Italy. Breast cancer can disrupt an already fragile balance.

Women use cultural and social frameworks, along with the support of family and social networks, to contain the impact of illness. These containment methods are a negotiation between the resources that are available and those that would be necessary to deal with the disease. By interpreting these methods as relational assemblages, we can see how they are adaptable and temporary.

Women face not only the uncertain outcome of treatments but also financial, social and professional instability, which the disease can amplify. This could also explain why the cultural script is sometimes adjusted to accommodate political growth rather than moral growth.

The literature often considers disruptions introduced by a disease as part of a linear trajectory that can be recomposed in a new equilibrium that incorporates the limitations of the disease (for a critique of this assumption, particularly regarding metastatic breast cancer, see Greco, 2022c). Although this might be the case for many women, analysing these new situations as biographical assemblages allows us to highlight their provisional and dynamic nature and the work necessary to maintain them. The post-diagnosis equilibrium is not a stable endpoint but demands continuous renegotiation, with the effects of the disease often continuing to be felt many years later. This is even more true for patients with metastatic breast cancer, whose life is constantly dominated by the disease. The new positions in the world that the women whom I met have achieved were never concluded processes. Instead, they remained open, due to the need to include the changes associated with the social context and the breast cancer itself. Here, it is also important to underline that, while the stage of the disease (early-stage or metastatic, as well as the location of the metastases) significantly influences the experience of the disease, other biological elements – such as the tumour subtype – have a limited role in shaping patients’ experiences. In this sense, the segmentation of patients according to biomarkers does not produce ‘personalised’ medicine in the sense of offering different approaches for each individual, nor does it seem to capture patient experiences, remaining confined to the more strictly biomedical domain.

My comparative study has shown, on the one hand, a continuity of patient experiences across different biological profiles of their cancers. On the other hand, it has shown how those experiences can be understood as assemblages that are far more complex than the different attempts to standardise and simplify not only therapies but also the whole illness trajectories of patients.

Beyond specific aspects of breast cancer (for example, its gendered nature, the relative visibility of the surgical consequences), many of the points raised here apply well beyond the specific case, not only because of the breast-cancer-ization (Bell, 2014) of other cancers but also because assemblages of biomedical tools and patient bodies, biographies and social roles are essential to most diseases. In this sense, the provisionality of assemblages can illuminate both illness experiences and the uncertainties central to contemporary societies.