The Buy My Cancer project (www.buymycancer.org), launched in Poland in 2022, seems to be a logical development of several tendencies in the recent transformations of cancer. The project aims to raise funds for CAR-T cells therapies for blood cancer patients, a therapy presented as highly innovative and promising and, as other therapies of this kind, involving very high costs (estimated in this case to be around $400,000 per patient). To raise funds, the cancerous cells of the patients selected are photographed and transformed into works of art and then sold as NFTs (‘nonfungible tokens’ – an experimental procedure to assign value to digital images by making them non-replicable). It is striking how not only is the illness located clearly at the level of the cancerous cells, but there is also an attempt to extract value from the cells themselves (or, at least, their image). Further, CAR-T cells therapies are part of a broader range of therapies in which the approach is to target specific markers in the cancerous cells, in this particular case by engineering lymphocytes aimed at the target. The success rate of the treatment is estimated to be around 40% for patients for whom other therapies do not work, and, in this sense, CAR-T cells are part of a wider discourse of hope in cancer therapeutics.

In 1990 Del Vecchio Good et al. described a transition, which began with the War on Cancer in 1971, from cancer as a diagnosis leading to a social death to a more optimistic approach to the condition. Greater availability of funds, resulting in more research and more cancer treatments, has promoted over the years what Del Vecchio Good and colleagues define as an ‘economy of hope’ (Del Vecchio Good et al., 1990: 60). Breast cancer, more than other types of cancer, seems to be the perfect example for a story of hope, as several new treatments have increased the survival times of patients. A woman who, after a breast cancer diagnosis, decided to look for information online would find encouraging data, with many websites of major charities and associations describing survival times for the condition as good. The pharmaceutical landscape includes several treatments that can keep the disease at bay for longer periods. It is difficult, however, to know whether a patient can be considered cured, because with the current knowledge and diagnostic capacity the best result that can be achieved and shown is that someone is not presenting any evidence of disease. New treatments are indeed developed with the hope of reducing the risk of relapse for early-stage disease, and to extend survival times for patients with metastases. However, most new treatments are not developed for all breast cancer patients, as an increasing number of newly introduced drugs target just specific subtypes of tumours. This segmentation, according not only to stages but also to the biological profile of the tumour (see Ross et al., 2021, and below), redefines breast cancer as a group of diseases occurring in the same bodily location – the breast.

In previous literature, the concept of assemblage has been used to theorise how biomedicine conceptualises the human body, its parts and its functioning (Johnson, 2018). However, there is reason to push the concept of the assemblage beyond the internal workings of the body and how biomedicine conceptualises them. For instance, a new definition of breast cancer as a plurality of conditions not only creates a reconceptualisation of the disease but entails further new relationships between the ill body, the biomedical categories defining the disease and the healthcare institutions treating it. One aspect of such relationships can be partly understood through the assemblage of the ‘techno-body’ of the cyborg – how different kinds of prostheses transform the body (e.g., Gibson et al., 2007; Shildrick, 2013; 2015). I propose the concept of medical-bodily assemblage to indicate how the biomedical conceptualisation of the human body simultaneously redefines the body itself and opens up different kinds of management (diagnosis, monitoring) and transformation (treatment) of the same body. Moreover, how medical professionals and patients reappropriate, use or reject these ideas is central to understanding the current transformation of breast cancer. In this chapter, I discuss how these new biomedical approaches are reassembling the experiences of illness and the pharmaceutical promises of regaining a healthy body after a diagnosis. The introduction of new drugs and surgical techniques, 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 (Kerr et al., 2021; Greco, 2022a; 2024; and Chapter 1 of this book). New definitions of early-stage and metastatic breast cancer and therapeutic approaches are creating new assemblages between biomedical tools and patient's bodies. How do patients deal with medical innovations? How do they negotiate access to specific treatments with the biomedical establishment? What impact are new targeted treatments having on the daily activities of medical professionals? Guided by these questions, in the following pages, I discuss how biomedical innovations are reshaping our understanding of breast cancer.

Between early diagnosis and breast surgery: how to assemble a healthy body

The history of breast cancer has been marked by a series of breakthroughs, including the evolution of the surgical treatments of the disease, innovations in radiotherapy and the inclusion of hormonal treatments and new targeted therapies. These changes and innovations have contributed to lengthening survival times (Youlden et al., 2012), particularly for patients whose cancer has not spread outside the breast involving vital organs. Early-stage breast cancer is now defined as ‘curable’, and, as we will see, through a redefinition of the concept of chronicity, the encouraging vision of a curable disease has also been rearranged to include the situation of (some) patients with metastatic breast cancer. Therapeutic successes for breast cancer are presented as effective, especially when coupled with an early diagnosis. As Löwy writes ‘[c]ancer experts stipulated that the only way to transform a fatal disease into a treatable condition was to be “faster than the cancer”’ (Löwy, 2010: 2). According to the linear model of cancer progression discussed in the Introduction, tumours of small size can be successfully treated, and this representation underpins the organisation of information campaigns urging women to check for changes in the feeling and appearance of their breast (Gardner, 2006). It also underpins the choice to organise screening campaigns for specific segments of the population – that is, post-menopausal, middle-aged women – that are considered to be particularly at risk. In the UK, in 1986, a commission headed by breast surgeon Patrick Forrest recommended the introduction of an NHS-supported triennial screening for British women between the ages of fifty and sixty-nine. The first British screening programme started a couple of years later. During the 1990s, screening programmes were also consolidated in Italy and France. In Italy, these programmes began first in some regions of northern Italy, and then gradually spread to the centre and south of the peninsula, but it is only since 2007 that all Italian regions have a screening programme, with Puglia and Sardinia among the last to activate one (Giordano and Giorgi, 2011). In France, screening programmes started earlier, in 1989, in some departments of the country, and despite the efforts to extend screening programmes throughout the country, it was only in 2004 that this goal was achieved (Philip et al., 2005). In each of the three countries, a large amount of financial and organisational resources are directed into screening campaigns, especially to extend the number of women taking part in them and to make sure that the hard-to-reach population that could benefit most from them will take part (see Fagan Robinson and Arteaga Pérez, 2023 for an analysis of care for hard-to-reach groups). However, breast cancer screening efforts and the linear model of cancer progression supporting them are not exempt from criticism. Several medical professionals and public health experts have pointed out the low effectiveness of early diagnosis as the preferred approach to tackling breast cancer (in this regard, see among others, Baum, 2015). Azra Raza, oncologist and author of the bestseller The First Cell, summarises in this way the contradictions of breast cancer screening: ‘[e]arly detection of more aggressive breast cancer [is] not helpful because by the time the tumor appeared on a mammogram, it had already spread and was incurable’ (Raza, 2019: 218).

Despite the doubts about its usefulness, breast cancer screening and early diagnosis have become the pivotal aspects of the biomedical and social approach to the disease. As I discussed in Chapter 2, several charities and patient groups have contributed to spreading the simplified message that breast cancer screening ‘saves lives’ (Sulik, 2011; Carter, 2015). The innovations that characterised breast cancer surgery in the 1980s reinforced the idea that early detection is the key to treating breast cancer satisfactorily and avoiding the surgical removal of the breast. Tumorectomy has contributed to the presentation of breast cancer as a surmountable experience that leaves minimal or no traces at all in women's lives. As we will see in Chapter 4, technical improvements in the surgical treatment of breast cancer are slowly introducing the idea that the removal of a breast tumour is not necessarily a mutilating experience but that, for some patients, it can be the occasion to improve the appearance of the breast (see also Greco, 2016d). However, the extension of screening programmes is also linked to an increase in the diagnosis of in situ cancers. These are slowly developing indolent lesions that do not spread to other organs and often do not threaten the woman's life. However, they are in many cases treated with a mastectomy, thus creating a contradiction that fractures the relationship between early diagnosis and conservative surgery (Löwy, 2010). Dr Isabelle, a French oncologist, explained why a mastectomy is often performed to treat what she defined a cancer with a good prognosis (cancer de bon prognostic), that is, intraductal or in situ tumours:

This excerpt shows how difficult it is to establish a correlation between the radicalness of the surgery and the severity of the disease. According to Dr Isabelle, a mastectomy is in many cases sufficient to eliminate the risk that an in situ or intraductal tumour might develop into a more severe form. However, the medical opinion about in situ cancer is divided. Esserman and colleagues presented in 2013 a variable model of progression, according to which only some types of cancer have the linear progression that predicts the evolution of an in situ cancer into an invasive one. Other types of indolent lesions will never develop into an invasive form. According to Esserman and colleagues ‘Ductal carcinoma in situ is a pathological entity that is an unintended result of breast cancer screening, rarely diagnosed before screening was adopted. Diagnosis of ductal carcinoma in situ results in immediate treatment with aggressive locoregional therapy.’ The authors further write that ‘[r]esults of studies suggest that only a subset of ductal carcinoma in situ progresses to clinically significant invasive cancer during a patient's lifetime.’ (Esserman et al., 2014: e238). However, it is difficult to predict the evolution of an in situ lesion (Sakorafas and Tsiotou, 2000), which can explain the surgical approach described by Dr Isabelle. Even when associated with a low risk of developing metastases, mastectomy is experienced differently by patients. Some find it difficult to consider breast removal a treatment corresponding to a cancer of good prognosis. Other therapies (chemotherapy and radiotherapy), often associated with surgery, are also mentioned in this excerpt, and systemic therapy is used to stem rapidly evolving infiltrating tumours. According to Dr Isabelle, many patients interpret this combination of treatments as less debilitating than mastectomy because, in many cases, the breast, and the body integrity associated with it, can be preserved. Patients and doctors can attribute different meanings to treatments. For oncologists, the main objective is to avoid the development of metastases, that is, the extension of the cancer to other organs.

A situation similar to the diagnosis of an in situ cancer is that of women with BRCA 1 and 2 mutations. Identified in the 1990s, these mutations are associated with a high risk of developing breast cancer. There is, however, a ‘contrast between the sophistication of a diagnostic technology grounded in the latest developments in molecular biology and the crudeness of the solution to the diagnosed gene mutation – the mutilation of a healthy female body’ (Löwy, 2010: 1). Options for patients with the gene mutation are indeed limited to a preventive bilateral mastectomy, close screening appointments or, in the UK but not in France and Italy, the possibility of taking tamoxifen or raloxifene. However, preventive hormonal therapy has limited effectiveness in this case, as BRCA 1 and 2 mutations are often associated with non-hormone-responsive cancers.

The possibility of diagnosing indolent lesions and genetic mutations fuels, in some cases, a return of surgical radicalism (Löwy, 2010), which, as we have seen, is in opposition to the objectives of early diagnosis and recalls the apparent contradiction mentioned by Dr Isabelle. However, the evolution in surgical approaches to breast cancer represents only one aspect of the treatment. As Dr Isabelle reminds us, different treatments are often necessary to keep the disease at bay in the most complex cases, even in the presence of early-stage breast cancer, which is usually defined as curable. To achieve the balanced situation that can be defined as a cure, a complex mosaic of treatments – surgery, chemotherapy, radiotherapy, hormonal therapy and monoclonal antibodies – are currently used. Some have been introduced more recently, while others have been used for decades. In the case of breast cancer, where the best result that can be obtained is a temporary NED (No Evidence of Disease) status, the concept of cure is inappropriate, as for many patients being cancer free can be a precarious and sometimes temporary condition (see Greco, 2022c; and Chapter 5). The absence of the disease is never certain but must be confirmed through periodic screening. A diagnosis of breast cancer that is still in an early stage amplifies significantly the biomedical promise of being able to keep cancer at bay and prevent its return. Hormonal therapies, which we will describe in the next section, are often prescribed for several years after the acute phase of the treatments, extending the possibility of avoiding a relapse. A characterising trait of the current therapeutic approach to breast cancer is that it is increasingly presented as a linear and personalised pathway. A life without cancer is a complex assemblage of knowledge about the disease, relations with medical professionals and therapies that follow one another at different points in the therapeutic pathway.

The personalised approach to breast cancer and its limits

Since the 1990s, oncology has tended to develop drugs capable of targeting specific reproductive mechanisms of the tumour and attacking cancerous cells with minimal damage to the surrounding organs and tissues. This approach has been defined as ‘personalised’ medicine, and the new class of targeted drugs is often described as highly effective while causing fewer side effects, particularly when compared with chemotherapy (Schirrmacher, 2019). The concept of personalised medicine is also being used to underline that this approach can offer tailored treatments for groups of patients, thus improving the benefits. However, commentators have also highlighted the limits of this approach, characterised by high prices of targeted therapy not often justified by the results that it delivers for small numbers of patients and the fact that they may subtract resources from less innovative approaches that could benefit a wider number of patients (e.g., Sturdy, 2017). Moreover, the term ‘personalised’ itself is misleading, as the approach rarely entails, as the term would suggest, offering ad hoc treatment for each patient, but instead focuses on standardised treatment for all patients whose tumour presents the same biomarker. In this sense, ‘targeted’ or ‘stratified’, often used as synonyms, are more appropriate descriptors of the approach. Targeted therapies are an important component in the treatment landscape for breast cancer, where the possibility of locating new molecular subtypes is changing how this cancer is considered and treated. Among the oncologists whom I have interviewed, there is a common view that can be summarised in Dr John's words: ‘Breast cancer isn't just one disease, it has been recognised that there are different kinds of disease.’ The segmentation into subtypes at a molecular level is an essential aspect of the current understanding of the disease, up to the point that it has been argued that ‘breast cancer’ should be considered an umbrella term including different subtypes of disease, some of which can even be seen as rare diseases (Bartlett and Parelukar, 2017; see also Harbeck and Rody, 2012).

The salient characteristics of cancer biology have been known for several decades. The relationship between breast cancer and hormones began to be understood as early as 1896, when Beatson published an article discussing how three patients with advanced breast cancer benefited from an oophorectomy (Love and Philips, 2002). The fact that some types of cancer had receptors that made them more susceptible to hormones such as oestrogen and progesterone has been known since the 1970s, and this awareness led to the creation of tamoxifen, a landmark treatment for breast cancer. Tamoxifen was among the first hormone-focused drugs used to treat metastatic breast cancer, and the first to greatly impact on the condition, as it aims to modify the endocrine environment that increases the growth of hormone-responsive tumours. ¹ Pharmacologist Craig Jordan played a leading role in its development, as he was one of the first to see that the drug, initially synthesised as a post-coital anti-conceptional, could be turned into a hormonal treatment for breast cancer. Tamoxifen was more tolerable and less toxic than chemotherapy. It laid the foundation for the idea that some specific therapies could tackle specific cancer subtypes, thus slowly shifting the treatment paradigm at a time when chemotherapy was receiving most of the attention. The first cancer drug to introduce some traits of what is now considered targeted therapy ² (Jordan, 2006; see also Hedgecoe, 2004), tamoxifen revived the interest in hormonal cancer treatments. Since then, various hormonal drugs, such as the more recent aromatase inhibitors (Eraso, 2020), have been developed. However, Jordan writes that in the 1970s, when tamoxifen was introduced, it was ‘not hailed as a breakthrough by the clinical community’ (Jordan, 2003: 205). He continues:

The history of tamoxifen, according to Jordan, illustrates the evolution of biomedicine's understanding of breast cancer and the treatments against it. The shift of tamoxifen from a drug ‘on life support’ to the ‘first targeted medicine’ can be better understood if we consider that the approach towards breast cancer in the 2000s has been characterised by what Keating et al. define as ‘a progressive dismantling of a common pathology’ (Keating et al., 2016: 22) in which breast cancer as such has become less relevant, with more prominence given to the biological characteristics such as biomarkers, the analysis of gene expression profiles or DNA mutations, that characterise it. Breast cancer subtypes can be considered as ‘bio-clinical objects’ (Keating et al., 2016) emerging from the encounter of a redefinition of tumours and the availability of new chemotherapeutic agents that can target tumours expressing certain biological characteristics. These bio-clinical objects appeared in a period of attention to stratified approaches against cancer, as opposed to the priority given to systemic treatment, such as chemotherapy, prevalent in the 1970s. That explains why, today, tamoxifen is considered the first ‘non-toxic targeted treatment for breast cancer’ (Jordan, 2003: 205). Still, despite tamoxifen's longevity and wide use against the disease, it is another drug that is universally regarded as a game changer: trastuzumab. In addition to oestrogen and progestogen receptors, a third receptor, the HER2, had already been known since the 1980s, and for decades its presence was considered an indicator of poor prognosis for patients (Ménard et al., 2002; Figueroa-Magalhães et al., 2014). However, the situation changed in the late 1990s with the introduction of trastuzumab, one of the first monoclonal antibodies, a class of drugs capable of targeting specific proteins in cancer cells. The drug, marketed by Roche under the name of Herceptin, is considered one of the most important breakthroughs for the treatment of breast cancer and has been described as the ‘poster child’ for targeted therapeutics (Issa, 2007). The introduction of trastuzumab caused ‘a shift in expectations as to what benefits these drugs could deliver: neither just palliation nor quite a cure. Rather, like insulin for diabetics, or some of the new AIDS drugs, these compounds would turn cancer into a chronic disease, which could be managed over long periods of time’ (Timmermann, 2019: 125). The innovation represented by trastuzumab – that is, the possibility of extending survival times not by eliminating cancer once and for all, but by keeping it at bay thanks to prolonged use of the drug – combined with its extremely high cost, was a shock for several healthcare systems (for the UK, see Barrett et al., 2006). As one of my interviewees, Dr Harry, a British consultant, mentioned:

The approval of trastuzumab in the UK – which took place a few years after the creation of NICE (see Chapter 1) – was at the centre of controversy regarding the cost of the drug (Hedgecoe, 2004; 2006). The above interview excerpt shows the surprise at the drug's efficacy, initially prescribed as a second or third line of treatment for patients with metastatic breast cancer. However, the importance of trastuzumab for the survival of patients with metastatic breast cancer was unanimously mentioned by the doctors whom I interviewed. ³ Dr Maria, a breast cancer consultant, also noted the drug's role in extending survival times:

Today, trastuzumab is used in neoadjuvant therapy for early-stage breast cancer and metastatic breast cancer in the UK, France and Italy. While trastuzumab was a major innovation in breast cancer, a variety of new therapies were mentioned alongside it in the interviews I conducted with medical professionals. This growth of drugs targeting specific markers establishes a further medical-bodily assemblage between the patient's body, the tumour with specific markers and the complex created between biotechnologies, diagnostic procedures, biomedical treatments and the medical systems that regulate their administration.

While the literature discusses widely the impact of an extensive range of new drugs on patients, it discusses more rarely how these new therapies are changing how treatments are administered and how a large set of new personalised treatments can clash with the organisation of healthcare facilities. Dr Maria acknowledged that a new challenge for medical professionals is to learn how to manage new treatments, each with its potential sets of serious side effects. She mentioned that trastuzumab, for example, despite the good results that it can provide, can also cause heart problems, and that oncologists have to learn how to monitor heart function or treat heart failure. This also means engaging with cardiologists and other specialists. However, the interdisciplinary collaborations made necessary by the new drugs might not be straightforward, because, as Dr Maria mentioned during the interview, other specialists already have busy schedules, and it may be challenging to add the follow-up of breast cancer patients to their workload (Greco, 2024). ⁴ Other medical professionals also underlined the impact of new treatments on medical services. Isabella, a nurse and a cancer services manager whom I interviewed in the UK, said that while the lines of treatment for metastatic patients have increased, the oncological service in which she worked had had the same capacity for the last thirteen years. She added that ‘all the new treatments are having a massive impact on that, so we are trying to respond by saying: “OK which patient do we really not need to see any more?”’, indicating that the increase in therapies for metastatic breast cancer could mean decisions to have fewer follow-up appointments for patients with early-stage breast cancer. ⁵ The intersection between overstretched services and efficient but difficult-to-manage drugs for metastatic breast cancer can have an unforeseen effect on early-stage breast cancer, as the reduction of follow-up appointments for patients can further reinforce the perception of this stage as curable. Martin and colleagues (2017), who have analysed the impact of targeted therapies for metastatic breast cancer in France, illustrate similar difficulties. The high number of therapies and the range of side effects demand more effort from oncologists, as they have to familiarise themselves with new therapies and approaches to patient care. Targeted therapies also make it necessary to increase the collaborations between different professionals. These elements can disrupt the management of patients and delay the use of these targeted therapies (Martin et al., 2017). As seen in Chapter 1, targeted therapies can be costly, but they also alter the financial organisation of French healthcare facilities. In France, funding is provided ‘according to the nature and volume of medical procedures performed [and a] cost-per-case mix (i.e. per-case payment system) is applied based on the type of medical activity documented in the French national hospital database’ (Benjamin et al., 2014: 2). In this context, oral targeted therapies might shift part of the funds from the hospital to the community, and the disruption they bring to the organisation of local funding could potentially influence patient access to such medications (Benjamin et al., 2014; Martin et al. 2017).

Another important aspect concerning targeted and personalised therapies is that they have not supplanted the systemic therapies, in combination with which they are often used. As Dr Mark, another among my interviewees in the UK, underlined, differently from targeted therapies, chemotherapy is used for all subtypes of breast cancer, although at different points in the therapeutic pathways:

What emerges from the interview is that it is not so much the chemotherapy itself that has changed, but instead how it is administered and the availability and quality of drugs that can help patients with the side effects.

The approach targeting specific biomarkers is also extended to subtypes of tumours for which, until recently, no specific treatments were available. Tumours that do not present HER2 receptors or hormonal receptors are called triple-negative breast cancer, and until a few years ago the most common treatment for these was chemotherapy. But since the 2010s clinical trials have been testing targeted therapies for this subtype, such as PARP inhibitors, indicated in particular for treating triple-negative breast cancer in the presence of a BRCA mutation (Lyons, 2019). In 2022 the Associazione italiana di oncologia medica (Italian Association of Medical Oncology), together with biopharmaceutical companies and patients’ associations, organised an event in Italy to discuss the new therapies for triple-negative breast cancer. An article describing the initiative emphasised how the introduction of new treatments can pave the way to chronicise triple-negative breast cancer as it is happening for the other subtypes of breast cancer, extending the survival times and preserving patients’ quality of life (Quotidiano Sanità, 2022). Despite the efforts of individual healthcare facilities and governments to accommodate expensive new medicines in oncology (see Chapter 1), many difficulties persist.

The current construction of breast cancer as an individual problem that can be better faced with highly personalised therapeutic pathways while offering opportunities to improve the life of patients can simultaneously increase healthcare inequalities. Second-wave feminism has shown that individual difficulties are often rooted in social inequalities, and it has also shown how confining problems to a personal sphere limits the capacity to address their structural origins (Heberle, 2015). In this sense, the rhetoric of personalisation in oncology can be considered a sign of a broader social tendency to individualisation.

Moreover, the emphasis on a pharmaceutical approach is at least in part to the detriment of primary prevention, and efforts to reduce the incidence of the disease by tackling social and environmental inequalities are not prioritised. Further, presenting cancer treatments as highly personalised makes it more difficult to create common advocacy platforms for fairer access to treatments. The emphasis on personalisation in cancer care is not neutral, making it extremely relevant to explore the impact that new treatments are having on medical professionals and patients.

Breast cancer: almost chronic, but still not there

In the comic book Cancer Made Me a Shallower Person, Miriam Engelberg, a US graphic novelist who died from breast cancer in 2006, the same year in which the book was published, defines the difference between early-stage and metastatic breast cancer as the ‘divide’ in the breast cancer community. As we have seen in the previous section, metastatic breast cancer is increasingly presented as a manageable condition. ⁶ At the same time, tangible success characterises early-stage breast cancer where extended survival times have been obtained by moving drugs initially intended for metastatic patients – tamoxifen, aromatase inhibitors and more recently trastuzumab – to the adjuvant setting. The shift of drugs from metastatic to early state is common in the organisation of breast cancer treatments: drugs that give good results in the metastatic phase are regularly tested as treatments for early-stage breast cancer patients in order to avoid relapse (Greco, 2024). ⁷

Preventing the spread or the recurrence of cancer in metastatic form is an important goal, and the number of drugs used to reduce this risk contributes to the construction of early-stage breast cancer as a treatable disease. Metastatic breast cancer, on the other hand, cannot be cured. However, the new image of this stage of the disease, increasingly defined as a treatable disease that can be kept at bay for several years, is paving the way toward a definition of metastatic cancer as a chronic condition. At the base of this vision, there is a new use of the concept of chronicity, linked to the fact that ‘medical innovations have brought about changes promising to turn severe diseases into chronic ones via new long-term treatments’ (Greco and Graber, 2022: 1). Dr Jessica, a French psycho-oncologist who has dedicated her career to supporting patients with breast cancer, said:

In this excerpt, the introduction of new treatment options is presented as one of the most important shifts in metastatic breast cancer, which is starting to look similar to other chronic conditions. Significantly, the diseases chosen as a term of comparison are diabetes and heart failure, which are often considered (especially diabetes) manageable conditions. The breast cancer community is divided on whether metastatic breast cancer can be considered a chronic disease (see Greco, 2022a). Associations such as Europa Donna show more optimism about the possibility of keeping the disease under control for extended periods; however, other groups do not share this opinion. In 2008, the late Barbara Brenner, executive director of Breast Cancer Action until 2010, rejected the definition of metastatic breast cancer as chronic: ‘Using the term chronic implies that breast cancer is a manageable disease, and downplays the reality that it is far too often fatal. It also diminishes the fact that we are in desperate need of better treatments’ (Brenner, 2008). According to Brenner, breast cancer can be defined as a ‘recurrent’ disease; this is because ‘recurrent diseases relapse repeatedly, with periods of remission in between’ (Brenner, 2008, citing Wikipedia).

Dr Maria underlined during her interview that many patients, like Barbara Brenner, do not consider the term chronic adequate to describe metastatic breast cancer: ‘patients don't like that. [There is a] research group of patients here who advise us […] and they think it's undermining the severity of the condition, because you will call diabetes a chronic condition, but the perceived threat is not the same.’ The idea that breast cancer can best be described as a recurrent disease was also mentioned by another consultant interviewed, Dr Luke, who said: ‘another definition might be a series of acute episodes linked together by areas of more chronic stabilisation’. This description has the advantage of not erasing the difficulties of managing the condition, as recognised by reference to acute episodes. It also probably reflects that, while median survival times for metastatic breast cancer have increased since the 1990s, only approximately one third of patients survive five years after the diagnosis (see Sundquist et al., 2017). However, while important, survival statistics do not tell the whole story. As many of the medical professionals interviewed pointed out, biomarker-based diagnostic stratification is also crucial in the metastatic phase of the disease. For example, Dr Maria said: ‘certainly hormone receptor-positive breast cancer can easily be called a chronic disease; the HER2 positive which responds to treatment probably falls into that group’. Dr Luke was even more explicit in this regard: during the interview, he said that it would be incorrect to ‘lump all metastatic breast cancer together as one condition’, and continued by saying:

In this extract, hormone-responsive and triple-negative breast cancer are presented as two different diseases, not only in the early stage but also in the metastatic phase, to the point that the first can be considered chronic, while the second is defined as terminal. In this case, a further element of stratification is mentioned to explain the differences between the two situations, namely the localisation of metastases, in the bones in one case and in the liver in the other. In the medical literature, the idea that metastatic breast cancer can be considered a chronic disease is often mobilised as an indicator of the successes and progress achieved in treating metastatic breast cancer (Greco, 2022a). Chronic is a term that can be used to describe a variety of circumstances, and chronicity in biomedicine is increasingly defined in multiple ways, even if the duration of the condition remains the primary aspect. Earlier syntheses present in the literature have found different criteria for the definition of chronicity, including duration, biological indicators, the impact on patient's lifestyle (Walker, 2001), slow onset, recurrent or deteriorating development and poor prognosis (O’Halloran et al., 2004). ⁸

Several medical professionals whom I interviewed were uncertain about the chronicisation of metastatic breast cancer because they were unsure of how to define chronicity. Dr Trevor, for example, said: ‘I don't even know what the definition of chronic disease is. When you think of chronic disease, you think of COPD [chronic obstructive pulmonary disease], you think of … hypertension, you think of diabetes …’. Some interviewees responded to the question of whether metastatic breast cancer could be considered a chronic condition by offering a more complex definition of chronicity itself. Dr Harry, for example, affirmed that metastatic breast cancer, while more serious than a diagnosis of diabetes, could be understood in the same way as a diagnosis of heart failure, adding that ‘half the people with heart failure die within five to ten years, so [it] cannot be cured’. In some cases, the evolution of metastatic breast cancer was compared with conditions that have recently acquired chronic status, such as HIV/AIDS, underlining that future evolutions in the treatment of the disease might turn the condition into a more manageable problem as has been done with HIV/AIDS (as also suggested by Timmermann, 2019). Some other medical professionals interviewed mentioned disease management as a possible criterion for discussing the chronicity of metastatic breast cancer.

The fact that patients continue to need specialist care delivered in hospitals and that, in the majority of the cases, metastatic breast cancer cannot be managed at home or by general practitioners is, for many, a reason why it cannot be considered a chronic condition. These considerations echo Dr Maria's description of how new treatments can impact on already stretched services and professionals and present a multidimensional conception of chronicity that goes beyond survival times. Elsewhere (Greco, 2022a), I have used the comparison with a nebula to help understand the variable conceptualisation of chronicity that emerges from interviews with medical professionals (and patients). A nebula is a conglomerate of different interstellar materials with a fluid structure that can originate stars, planets or other planetary objects. Similarly to a nebula, in the different definitions of chronicity ‘we can find different structuring principles that can push the concept in different directions’ (Greco, 2022a: 110). As we will see in the final part of this chapter, the instability of the concept of chronicity is also a further element that adds to the medical-bodily assemblage, and leads patients to adopt different practices of biographical assemblage. It is thus important to explore patients’ experiences.

Missing targets: the experiences of personalised medicine

Targeted therapies in cancer care have introduced what, following Klawiter (2008), I have defined a regime of personalisation, linked to the promises that patients would receive therapies that best suit their needs (Greco, 2024; and Introduction to this book). New tailored treatments should improve not only survival but also the quality of patients’ lives. However, patients do not always find it empowering to have information about the molecular profile of their tumour (Kerr et al., 2021). Patients’ narratives show us another, less widely appreciated, side of therapeutic innovation: the uncertainty of the condition and the limits of technical progress. Uncertainty, unpredictability and a complex relation with therapeutic options mark the experience of several of the patients whom I met (see also Greco, 2022a; 2022c). Natalie, a British woman in her early sixties, had received various therapies, and her therapeutic path was marked by uncertainties and difficulties, the first of which was trying to establish the exact nature of her tumour. A few years after being diagnosed with early-stage breast cancer, Natalie was diagnosed with bone and liver metastases in 2016. The examination showed that Natalie's tumour was back, that it had invaded the liver and also that the tumour was ER-positive. The medical professionals had reason to think that Natalie's tumour might also be HER2-positive, but the lack of a tissue sample meant that it was not possible to confirm that. Natalie was prescribed paclitaxel chemotherapy and was told there was a good chance that therapy could keep her situation stable for up to two years. However, after six months of treatment, the chemotherapy stopped working. At that point, Natalie explained to me, the doctors tried to perform another liver biopsy to gather more information about her tumour type. But a liver biopsy can be painful and tricky to perform, especially in cases like Natalie's, where the tumour is hard to reach. In Natalie's words:

This excerpt shows that Natalie had already received several treatments to keep her metastatic breast cancer at bay. However, these therapies were of limited efficacy. Although doctors were deciding whether to try a new drug – eribulin – the lack of information about the nature of the tumour made it difficult to plan the next steps. At the time of the interview, Natalie was waiting to try to have a new liver biopsy. She was in a situation of uncertainty and impasse that she defined as a ‘no man's land’. ⁹

Natalie was not the only woman I met whose pathway was complex and marked with uncertainty. The case of Kathy, another British woman in her fifties, shows how complex the management of innovative therapies can become for patients. At the moment of the diagnosis, Kathy's tumour had already spread outside the breast. Despite the shocking news, the fact that her tumour was HER2 positive was encouraging, as trastuzumab could potentially slow down the progression of the disease. She said this information gave her hope; however, the first treatment she received, chemotherapy combined with trastuzumab, did not provide the results the medical professionals hoped for. Kathy decided to try another treatment, Kadcyla, ¹⁰ which she had to self-fund because the NHS did not offer the drug at that time in the area where she was living. However, the treatment did not work and Kathy was ‘running out of options’. She was resigned to undergoing another round of chemotherapy but was aware that the perspective did not offer her much hope. She was, however, able to find one of the last slots remaining in a clinical trial, and this time the treatment offered was able to effectively keep the disease at bay and improve her health and quality of life. Kathy's story also shows another side of the regime of personalisation: the increasing unaffordability of targeted treatments. The combination ofincreasingly expensive treatments and the opening of the NHS to private patients gives a new, probably untended, meaning to the concepts of personalisation, in which patients’ financial capacity may become a more decisive factor than their molecular profile (for other examples of privatisation of cancer care in the UK beyond breast cancer see Kerr et al., 2021 and Arteaga Pérez, 2022a).

Patients are aware of the financial stratification creeping in to cancer care, as this excerpt from Camilla's interview shows:

NICE guidelines establish which patients are entitled to specific treatments; outside of that frame, private treatment is an option that only a small number of patients can access, and, as Kathy's experience shows, there is no guarantee that it will work.

These stories show not only the limits but also the dark areas of the regime of personalisation. Having a specific marker does not guarantee that the treatments will be effective, which also shows how the medical-bodily assemblage established by targeted treatments is not a simple biochemical relation between the marker and the drug, but involves probabilistic relations as well as financial factors.

Further, the idea that numerous lines of treatment for metastatic breast cancer represent different aces up the sleeve of doctors, which they can prescribe in sequence, and that each of them can keep the disease at bay, is a linear vision of how these treatments are used. Mutatis mutandis, this idea follows the linear cancer schemata mentioned by Löwy (2010), according to which detecting and intervening on small lesions is a guarantee of success in breast cancer treatment. Similarly to the early detection of small tumours, the possibility of offering different lines of treatment for metastatic breast cancer is the best approach that contemporary biomedicine can offer. Early diagnosis, the shift of drugs to the adjuvant setting and the development of multiple lines of treatment for metastatic breast cancer have certainly improved patients’ prognosis and quality of life. However, this progress is not linear, nor equally distributed. Some patients benefit more than others: the characteristics of the tumour, and the possibility of accessing information and treatments, greatly influence the impact of medical innovation on their lives. As an alternative to a linear view of breast cancer, in this chapter and this book more generally, I propose instead the idea of medical-bodily assemblage as an analytical tool, aiming to capture the complexity and multidimensionality of breast cancer.

Other experiences of illness also show the inadequacy of linearity in the approach to breast cancer. Mariella, an Italian woman in her late fifties at the time of the interview, who had been living with metastatic breast cancer for several years, told me that up to that point her disease had been under control, thanks to an aromatase inhibitor. However, she also added that the therapy ‘had to be done for life’ (‘è a vita’), and was scared that there might be a shortage of the drugs she used. She told me she was grateful to the doctors and the health facility who treated her, but she also noted how her link with the hospital was, like her therapy, for life. Muriel, a French woman similar in age to Mariella, also discussed feeling anchored to a healthcare institution, even without a metastatic diagnosis. She told me that, despite being cancer-free, she would no longer go to live in other countries, because this would jeopardise her access to follow-up care and treatment in case of a relapse. For both women, cancer was an experience that altered not only their present but their future life as well. In different ways, both metastatic and early-stage breast cancer inscribe themselves in patients’ lives and limit them. The stories of the patients show how the experiences of illness are marked by unexpected difficulties, deviations from the expectations of biomedicine and new anxieties and fears generated by the intersection of complex therapies administered in functioning but imperfect healthcare systems. In this way, what seems personalised for the patients is the medical-bodily assemblage of what is available to them. What the patients find themselves doing is a biographical assemblage – a redefinition of their life expectations, not only in a chronological sense but also in an experiential, material and moral sense.

Conclusion

In this chapter, I have discussed how therapeutic and technological advances have changed the natural history and perception of breast cancer. As mentioned, cancer diagnosed in its early stages is considered curable, while metastatic breast cancer is increasingly being presented as a manageable condition that can be turned into a chronic one by using several lines of treatment. However, the difference between a tumour that has not spread outside the breast, and another that has metastasised involving other organs, is not the only one. Targeted therapies, together with a new understanding based on biomarkers and genetic profiles, are redefining breast cancer as a series of different diseases. Each of these diseases can be tackled with targeted treatments able to extend survival times. New treatments are also changing the status of cancerous cells, which now are not simply destroyed but need to be collected and identified in the hope that they might be the right kind of cells, those for which a treatment exists: as seen with the Buy My Cancer project, cancerous cells, while still dangerous, are now also becoming valuable.

However, at an individual level, there is no guarantee that these treatments will work, nor any way of knowing for how long. In the 1970s, the War on Cancer had raised hope that a single therapy for all cancers could be developed, but this approach has been sidelined. Instead, several therapies able to keep different types and subtypes of cancer at bay for longer periods have been prioritised. The presence of a number of treatments associated with some biological characteristics of the tumour defines the regime of personalisation. The economies of hope surrounding this cancer regime are circumscribed, fragmented and incremental, as the results in terms of survival times that new targeted therapies can offer for metastatic breast cancer are often measured in months and, only in the best of cases, in years. While new therapies have extended the survival of patients with metastatic cancer, biomedical progress has not yet significantly affected the terminal character of the disease.

The presence of multiple treatments is reshaping how healthcare systems deal with breast cancer: on the one hand, new treatments are creating new interdisciplinary collaborations necessary to manage complex side effects; on the other hand, their approval and availability take into account the financial pressure that these treatments put on universal healthcare systems. This latter aspect opens spaces for privatisation to accommodate patients who can pay for treatment, thus increasing inequalities. At the same time, the impact is not limited to the financial aspect, as the new therapeutic landscape is also altering the organisation of healthcare facilities and the everyday work of medical professionals. New ideas of medical progress are being assembled, particularly through the redefinition of what constitutes a successful cure, that is, extending the survival time through the continued use of several targeted treatments.

However, the linearity of biomedical models does not allow us to capture how the new therapeutic landscape changes the experiences of medical professionals and patients. In this case, the expectations of biomedicine and the concrete unfolding of individual experiences diverge significantly. The gap between what medical progress offers – some extension of survival time for some patients – and what it is not yet able to offer – a significant extension of survival time for all patients, allowing them to lead a life similar to that pre-diagnosis – opens a space of unpredictability in their illness experiences that patients strive to fill as best they can. Patients find themselves redefining their expectations with regard to biomedical progress as they experience the difficulties and contradictions of the current treatments, and they do so by using material, experiential and moral assembly practices which illuminate the potentiality, but also the limits, of new therapeutic approaches. The redefinition of cancer further influences the relationship between patients, medical professionals and medical systems, creating more complex and sometimes conflictual relationships because of the need to frequently access medical treatments and facilities and the difficulties and the anxiety produced by the precarious success of new treatments. At the centre of these new assemblages is the patient's body, altered by cancer and its treatments, which is the subject of the next chapter.