Audre Lorde documented her experience of breast cancer in The Cancer Journals, a powerful book published in 1980 that combines elements of memoir, journal writing, poetry and essay. The book substantially influenced the building of an alternative understanding of breast cancer. Lorde's autobiographic and political analysis pushes for the inclusion of the experiences of Black and queer women, calls attention to environmental causes of the disease and refuses the invisibilisation of breast cancer experiences. The Cancer Journals also addresses the fear that, even after the completion of therapies, any symptom might be a sign of a relapse (see also Gardner, 2009). Lorde describes the anxiety caused by breast cancer as ‘an immobilizing yield to things that go bump in the night, a surrender to namelessness, formlessness, voicelessness, and silence’ (1980: 8). Anxiety is closely connected to the deep state of uncertainty women find themselves in after receiving a breast cancer diagnosis. Patients adopt various strategies to give a name and shape to their anxieties in an effort to contain them, manage them and maintain a certain level of control over their lives. Attempts to retain control are inextricably linked to the resources that patients can mobilise and the spaces for action that the organisation of the local health systems allows.

One of the hallmarks of this uncertainty is its entanglement with the pharmacological, technological and biological changes that have characterised the approach to breast cancer in recent decades. As seen in Chapter 3, the very definition of breast cancer has been modified by descriptions of the disease that emphasise the role of biomarkers and individualised and stratified therapeutic approaches. In this context, not only the biomedical approach but also the meaning of the disease itself is in constant transformation. As we have seen, breast cancer has been divided into two different entities: ‘curable’ early-stage breast cancer and ‘incurable but treatable’ metastatic breast cancer. However, even in best-case scenarios, where treatments have obtained the best possible results (i.e., ‘no evidence of disease’), the possibility of relapse extends the uncertainty of patients. In this context, some types of treatment – such as hormonal therapy, which is usually administered for five or ten years – have been extended or introduced to reduce the risk of relapse, creating a new normality (Trusson et al., 2016) in which patients live with the changes and the alterations caused by active treatments as well as by adjuvant therapies prescribed for several years.

For patients with metastatic breast cancer, there is an even more profound uncertainty: while dying from the condition becomes almost certain, current treatments have extended the survival times. However, at an individual level, patients do not know whether treatments will be effective for them, or for how long. Nor do they know the impact that a specific treatment will have on their quality of life. The relative improvements in metastatic breast cancer survival have opened up new spaces for uncertainty and instability in patients’ lives. Women do not know how much time they have left or how they should organise it (Greco, 2022c). The uncertain and provisional nature of metastatic breast cancer has created a liminal space between a chronic and a terminal condition. Women inhabit this space uncomfortably. Some patients try to contain the uncertainty that marks their life by searching for different sources of information and becoming familiar with the biomedical world (Greco, 2020a). Others use the experience of the disease to redefine their expectations and their priorities. Previous theorisations of the impact of the disease were addressed using the concepts of biographic disruption and recomposition (Bury, 1982). However, these theorisations are less relevant in the context of the liminal lives of patients with metastatic breast cancer because their situation is altered by a sustained uncertainty that is difficult to recompose.

Patients find themselves living a provisional life and, in this context of instability, the solutions and approaches they establish must also be flexible and adaptable to a reality that can rapidly mutate.

Illness narratives have been a core methodological tool in the social studies of health and illness. In this book, while using this approach, I consider the limits and risks of the method, including the difficulties for patients in making sense of and expressing the illness; the provisional nature of narratives, which can change as patients elaborate further their understanding; the fact that the narrative is not only retrospective but also looks at the future, and the need to negotiate pre-existing dominant narratives (cf. Frank 1995). A way that I use to counterbalance the limitations of illness narratives is to look at them through the concept of biographical assemblage to push the analysis further, pointing out how patients need not only to understand their own experience but also to relate to biomedical knowledge and estimates and deal with the resulting uncertainty.

In this chapter, I explore the uncertainty and provisionality of the disease, and the approaches adopted to contain it, observing the ways that these elements constitute assemblages that are imperfect, unstable and changeable because breast cancer itself is unstable, not only as a biological reality but also as a biomedical and social phenomenon. New knowledge, redefinitions of previous approaches and the possibility (and hope) of new therapies and new drugs continuously reshape the meaning of the disease, another determinant that patients must manage as part of living with breast cancer. Patients need to rebuild a relation with their body that includes medical treatments and their side effects. Moreover, biomedical uncertainty around drug efficacy drives patients to engage in new ways with their present and future lives. In this sense, that the system of medical-bodily assemblages is open and ready for recombination is a necessity that begins at the moment of diagnosis, as the next section explores.

No longer healthy, not yet sick: the ambiguous space of the diagnosis

Breast cancer is a life-altering event. For many women, receiving such a diagnosis means crossing the border into what Susan Sontag (1978) has defined as the kingdom of the sickness. However, as with all borders, the one separating the sick from the healthy is the historically defined product of social and bureaucratic practices. For historian Ilana Löwy (2010), until the mid-twentieth century, one of the most significant traits of breast cancer was its visibility. Before the introduction of modern diagnostic tools, cancers affecting internal organs could not be diagnosed. However, the unequivocal signs of late-stage cancer of the breast could not be missed by doctors. The widespread use of modern diagnostic technologies has overturned the situation. The aim now is to detect cancer as soon as possible, with current screening technologies promising to identify small lesions rapidly and with greater certainty. Accordingly, breast cancer screening programmes aimed at age groups considered more at risk are widespread in the countries I studied (see Chapter 3). However, in many cases women themselves initiate the diagnostic process because, thanks to numerous public health campaigns they know how to detect small changes in their breasts. Among my interviewees, the most common event was feeling a lump and seeking answers about its nature. In some cases, other signs were present, such as a change in the shape of the breast (a British patient told me that her breast had ‘a funny shape’) or a bloody discharge from a nipple. While all these changes can be linked to the presence of a tumour, none is in itself an unequivocal symptom of cancer. During our interview, a British radiologist, Dr Roger, underlined that most patients referred by their GP for a lump do not have a cancer but just ‘a normal lumpiness in the breast’. The ambiguity of breast lumps means that many women have to insist with their GP for a referral for a mammogram.

The oncologists and radiologists whom I interviewed generally emphasised that screening appointments are organised to balance the need to offer an accurate diagnosis in a short time frame and avoid patient discomfort and anxiety. Dr Roger said that the aim is ‘to get as much done as possible within that one visit’. In the countries where I have conducted fieldwork, this usually means that patients have a mammogram that is followed by a same-day ultrasound if the results of the mammogram are unclear. If the results remain ambiguous, a biopsy can also be performed that same day. However, in the latter case, patients have to wait one or two weeks for the results. Obtaining a breast cancer diagnosis is often neither straightforward nor rapid. In the suspended time during which women are no longer healthy and not yet sick, they try to make sense of an unexpected situation by interpreting contradictory signals. Sylviane, a French woman in her late fifties, described this as the most difficult period:

Some medical professionals conducting the tests are not allowed to formulate a diagnosis, but their suspicions transpire through their behaviour (Locock et al., 2016). Sylviane summarised perfectly this situation: the word cancer is not openly pronounced, it is replaced by a ‘question mark’ against which no action can be taken. This space of uncertainty can be particularly long for some women for whom reaching a conclusive answer about whether they have breast cancer is more complicated. When, at the beginning of our interview, I asked Clothilde, a French woman who was in her fifties when she received a diagnosis, how she discovered her cancer, she described her story as ‘very complicated’, almost difficult to believe. Like many women, Clothilde felt a lump in her breast and, following the advice of her family doctor, underwent mammography, followed by an ultrasound. The results were uncertain and, a few months later, she underwent magnetic resonance imaging (MRI) of the breast. All the diagnostic tests, including the MRI, were inconclusive, and medical professionals, including a radiologist and a surgeon, were unable to offer a clear answer about the nature of the lump. Repeated tests and medical appointments continued for almost two years in which Clothilde received contradictory information, with professionals reassuring her that there was nothing to worry about as they continued to conduct further tests. Eventually, a doctor decided to perform a micro-biopsy to dispel any doubt. Clothilde agreed to undergo this procedure, but, after two years of tests, she was starting to think that it was nothing serious. As such, she went alone to collect the test results:

After two years of inconclusive results, Clothilde was shocked to be told that she had cancer:

At the time of the interview – a few years after her diagnosis – Clothilde knew that her difficult diagnostic pathway was due to the nature of her cancer. She was also aware of her privileged situation: she had access to several tests and could be seen by several medical professionals. Nonetheless, she received a breast cancer diagnosis for which she was not emotionally prepared. The simplistic messages of many campaigns against breast cancer encourage women to get screened because mammograms can save lives. However, as Clothilde recognised, this ignores complex situations like hers. She is not the only woman whose experience was marked by contradictory information and a lack of clarity. Manon, another French woman who received a diagnosis shortly before turning fifty, told me that she went to her family doctor because she had a persistent pain under her mammary fold. Given the nature of this pain, Manon did not think that it could be cancer, but her doctor still referred her for a mammogram. During the interview, Manon recalled that the medical professional conducting the exam ‘wasn't very clear’. In the end, they suggested that Manon's situation deserved further examination and advised her to go and see her doctor. According to Manon, the gynaecologist was also quite vague. Although she agreed that a biopsy might be needed, she did not give Manon any further insight. Recalling a colleague describing similar problems, Manon gave her a call. Unlike the doctors, the colleague urged Manon to book a biopsy appointment as soon as possible and gave her a list of places she could contact. Manon followed her colleague's advice, and also looked for information on the internet. The results of the biopsy – conducted at one of the specialised cancer centres suggested by her colleague, and in which Manon was able to secure an appointment only after insisting – showed what her online research had already led her to suspect: she had cancer. After the diagnosis, Manon was even more confused as to why the only person capable of giving her clear indications on a course of action was her colleague, who also urged her to speed up the process, while the medical professionals she encountered did not convey any sense of urgency. These initial encounters shaped Manon's experience and her relationship with medical professionals over the course of her journey.

Starting a diagnostic pathway often means stepping into a liminal zone in which the significance of minimal body changes is shaped by protocols, guidelines and the willingness and ability of medical professionals to conduct and interpret further tests. Historically determined, the diagnostic procedure and its results are an imperfect medical-bodily assemblage of the knowledge and resources available at both the individual and collective levels. Contemporary diagnostic pathways are processes that see different components dovetail to produce a cancer diagnosis. The patient's body is only one of these components. At the end of this process, many women found themselves in a very different position: when, to use Sylviane's words, the term cancer is mentioned, they become ‘cancer patients’.

Attempting to contain uncertainty

The diagnosis closes a first moment of uncertainty, but opens up many other uncertainties: uncertainties regarding the subtype of cancer, the treatments available and the prognosis.

For many of these questions, the answer lies in the clinical examinations, biopsies and exploratory surgeries. Exam after exam, visit after visit, patients collect information about the type of tumour (HER2-positive, hormone-receptor-positive, triple-negative) and the type of treatment (radiotherapy, chemotherapy, hormone therapy) and prepare to adapt their lives to those treatments. In Chapter 1, we saw that, for many patients, moving between different regions and medical institutions and entering into contact with different medical professionals can be a way to maintain a certain control over their situation and assemble a more manageable personal situation. However, patients can use other different strategies to maintain an active role in a situation that often positions them as passively waiting. Among these strategies is searching for information, with online tools often representing the easiest way to do that (see Greco, 2020a). Some patients look for information about their individual situation. For example, Christelle, a French woman diagnosed with breast cancer shortly before turning forty and toward the end of her pregnancy, went online hoping in particular to read accounts of other women diagnosed while pregnant, because she felt ‘very lonely in this situation’. Others had a selective approach to seeking information, deciding to only inquire about options for post-mastectomy reconstruction, but not for other types of treatments. This is because reconstruction, as we have already seen, is considered the moment in the sequence of treatments that offers greater margins of choice. Many of the medical professionals whom I interviewed expressed opposition to patients seeking information on the internet. In my fieldwork, I have found that patients were often dissuaded from researching online or redirected to sources deemed more reliable, such as institutional websites and the websites of national charities and associations. One reason that medical professionals often gave concerns the difficulty of understanding medical facts correctly without appropriate training. Moreover, some medical professionals interpreted patients searching for information as a sign of a lack of trust or as an attack on their expertise and skills. Although mistrust can sometimes be present, most of the women whom I interviewed used this form of autonomous inquiry as a compass to situate themselves within the confusing experience of living with breast cancer. The experience of Muriel clearly illustrates this:

This excerpt shows the contradictions inherent in the management of medical information, including how these contradictions shape the relationship women have with the medical system. In a system where doctors have many patients and little time, redirecting patients to institutional websites can be a way to reduce the length of consultations. However, doctors cannot always predict how patients will use this information or how it will impact on their therapeutic path. In the end, the radiologist agreed with Muriel that axillary radiotherapy was not necessary for her. It is worth noting that, as Muriel points out, patients want to better understand the role of treatments and what to expect, but often do not want the responsibility of deciding whether or not to pursue a treatment. They are aware that they do not have the tools (or even the energy) to make that decision. Furthermore, although information can become a negotiation tool that orients or rearranges patients’ therapeutic pathways, seeking information does not mean not trusting doctors. For many women, it represents a way of reconfiguring trusting relationships to enable patients to better understand the actions and requests of medical staff, and select what information they can obtain on their own and what information it is critical to receive from doctors and nurses. During our interview, Manon often repeated ‘je me suis renseignée’ (‘I tried to find out’), and she started to do so when medical professionals were unable to give her information about her biopsy:

This detailed description of how Manon searched for information on the internet shows how quickly and competently some patients can become familiar with medical information. Nonetheless, patients are aware that being seen to be too informed can backfire, requiring that they carefully manage their knowledge when interacting with medical professionals. In this sense, Manon's behaviour is illustrative. When he told Manon that her protocol included hormone therapy, the doctor asked whether she knew what that was. Manon told me that by then she had read everything she had found online about breast cancer treatments, that she knew what hormone therapy was and that she was, in fact, expecting it to be offered. However, she told the doctor simply that she had heard of it, understating her knowledge to avoid irritating (agacer) the professional by flaunting her knowledge. Communication between doctors and patients can be difficult, with lies and omissions from both sides not unusual (Fainzang, 2015). Although patients are aware of this and try to be careful, sometimes it can be difficult to strike the right balance, as Clothilde explained in her interview. Unlike Manon, Clothilde asked more questions, but could sense that this was occasionally perceived as a problem: ‘I think I'm a pain in the neck (que je suis une enquiquineuse) for doctors, because I ask a lot of questions.’ Other women considered gathering information to be more of a necessity than a choice. Camilla, after her metastatic breast cancer diagnosis, felt that she had ‘to explore options yourself because people don't tell you things’. She underlined that oncologists are often very busy and medical appointments short, making gathering information important for making best use of the time with a medical professional. However, she added that patients with serious illnesses should not be put in the position of having to research and advocate for themselves, and that this behaviour is often a way to counterbalance the shortcomings of the medical system.

Not all the women interviewed looked for information, whether online or elsewhere, and many were satisfied by what medical professionals told them, agreeing with them that looking for information without a medical background could be misleading and distressing. However, many women saw developing a medical understanding of their condition as a sense-making activity and a way of managing uncertainty by demarcating small areas of agency within a disempowering situation. For example, Olivia, a British woman in her fifties, told me that she was satisfied with the information she received from the medical staff and that she was more interested in knowing why she had developed a cancer in the first place. After her diagnosis, she started to notice that numerous people at her workplace had similarly received a cancer diagnosis. Thinking this high number suspicious and possibly linked to work conditions, she insisted with others on an inquiry. The results showed that Olivia and her colleagues represented a ‘natural cluster’ of cancers because they all had different subtypes of cancer. During our interview, Olivia told me that knowing whether her cancer might be work related was important and that she was ‘ready to fight’ to obtain an answer. She was not the only patient I met who wanted to know the cause of her illness. Others connected the onset of the disease with traumatic or stressful life events. As we will see more in detail in Chapter 6, for many, a cancer diagnosis opened up a space for reflection, prompting them to revisit their past and present lives. In this way, the focus shifts from the biomedical aspect of the cancer to the broader and more complex biographical aspects of their life. Many women made apparent the importance of understanding the role of the disease in the economy of their lives, leading them to rearrange not only biomedical information but also personal and social information, values and experiences in a biographical assemblage. In this way, they could give new meaning to not only the disease but also their own lives. In the next section, I discuss how negotiating treatments and their meanings was a further way to maintain some control over one's life.

Complying with treatments: assembling the present and the future

Many of the patients whom I interviewed underwent different combinations of the treatments that historically characterise breast cancer's therapeutic pathway: surgery, radiotherapy and chemotherapy. At the end of this process, although no longer sick, the patients are not cured. According to Dr Jessica, a French psycho-oncologist who has worked for decades in services specialised in treating patients with breast cancer, one of the most difficult moments for women is not the phase of active treatments, but the end of that phase, because it represents ‘the passage from being a sick person to being a not-cured person’ (‘le passage d’un état de malade à l’état de non-guérie’).

There is little certainty about what being cured means in the case of breast cancer. For Hortobagyi (2003), in the case of breast cancer, it might be appropriate to introduce the concept of ‘personal cure’, a situation achieved when a patient with breast cancer who has completed the treatments ‘eventually dies from a different cause (e.g., cardiovascular disease, chronic obstructive lung disease, stroke, etc.) before a relapse from breast cancer can be documented’ (Hortobagyi, 2003: 25). Hortobagyi suggests that, while this definition is inadequate because it does not give any useful information about survival times or the effectiveness of available treatments, for individual patients, ‘this is a perfectly satisfactory definition of cure’ (Hortobagyi, 2003: 25). However, this concept of personal cure offers no indication to patients of their status while they are still alive. The definition ‘no evidence of disease’ (and its acronym, NED), as we have seen, is used to indicate the situation of a patient who, after the initial course of treatments, no longer presents signs of cancer. NED does not guarantee that cancer cells are completely absent – it simply signals that cancer cells have not been detected through diagnostic tools. Following the active phase of treatments, hormone therapy is one way to increase the chances that patients with breast cancer remain in this non-sick state for as long as possible. As seen in Chapter 3, hormone therapy represents one of the best options for tackling breast cancer. Accordingly, it is often prescribed as adjuvant therapy to reduce the risk of relapse, especially local relapses on the contralateral breast. It is common knowledge that chemotherapy often has debilitating side effects: hair loss, nausea, fatigue. Compared to chemotherapy, hormone therapies are presented as easy-to-manage drugs that require patients to take just one tablet per day and have limited side effects. In reality, the list of side effects can be very long, including night sweats, weight gain, mood swings, vaginal dryness, joint pain, increased risk of thrombotic disease, thickening of the uterus and increased risk of endometrial cancer. Some patients also experience cognitive problems, including brain fog. Pre-menopausal patients undergoing hormone therapy can be prescribed an ovarian suppressor drug to stop ovarian activity. This means that many younger patients find themselves experiencing pharmacological menopause, which in some cases can be very debilitating and limit their quality of life.

In the UK, following NICE guidelines, hormone therapies are usually prescribed for at least five years after diagnosis, with some younger patients continuing therapy for ten years. Similar approaches are followed in France and Italy. Patients are told that completing this long course of treatment is important for reducing the risk of relapse. Trying to quantify the overall risk reduction can be complicated, but recent studies show that there is a 66% reduction in the relative risk of contralateral breast cancer with tamoxifen taken for four years or more (Gierach et al., 2017). Relative risk describes the proportion of patients who have experienced a contralateral relapse while using tamoxifen, compared with the proportion of patients who had a contralateral relapse and never used tamoxifen. It is more complicated to calculate the absolute risk and its reduction, because this depends on the stage of the disease and other biological characteristics of the tumour (Löwy, 2012). As the activist Barbara Brenner pointed out, ‘[o]ne of the major problems with the way that scientific studies are reported is that in most cases the figures provided represent the relative benefits of the intervention being studied instead of the absolute benefits that an individual woman might experience’ (Brenner, 2016: 111). Understanding the extent of the benefits of hormone therapy is important because the completion of the five-year course is far from universal, with Hadji's (2010) review showing studies in which the completion rate was as low as 50%. The medical literature devotes ample space to what it defines as a non-adherence problem. While research concerning how to improve compliance affirms that it is crucial to make patients aware of the benefit of the treatment so as to reduce non-adherence, medical professionals tend to underestimate or even deny the impact of the side effects caused by hormone therapy (Sarradon-Eck and Pellegrini, 2012). In this context, what is defined as non-adherence to treatments is a more complex balancing and rearranging act by the patients. In his study of diabetes, Ferzacca (2000) suggests that compliance and non-compliance should be understood as ‘“idiosyncratic regimes” of both self-care and clinical practice’ (Ferzacca, 2000: 29) that are defined by not only medical knowledge but also social and individual values, practices and experiences. My interviews illuminate the complex web of individual difficulties and considerations upon which women construct their ‘idiosyncratic’ approach to the therapies they have been prescribed.

Marie was well disposed to the idea of hormone therapy but suspended it after undergoing an operation to remove uterine polyps. At the time of the interview, she was waiting for the doctors to tell her whether therapy could be continued with another combination of drugs. Meanwhile, Clothilde told me she had experienced very serious side effects from tamoxifen: ‘I had hot flashes. I was going crazy; I could have fifteen [episodes] during the day and every two hours at night. I woke up at night, everything was fine, and after three minutes, I was drowned up to my knees.’ After trying to cope with the side effects for a year and a half, she asked her doctor to change the therapy, and she was prescribed an aromatase inhibitor.

The side effects of hormone treatment vary and are often assessed against the backdrop of the patient's situation. For example, patients with metastatic breast cancer who use tamoxifen frequently perceive the treatment differently, because in that case the drug is used not to reduce risk but to keep at bay the progression of the disease. For example, Holly, a British woman who received a diagnosis of metastatic breast cancer in her late thirties and at the time of the interview was taking tamoxifen with good results, said: ‘I take a tablet at night, and I am pretty much fine. I feel so lucky. I live such a normal life.’ In this case, the therapy did not alter the patient's everyday life, despite the side effects. On the contrary, it made it possible for Holly to keep living a ‘normal life’. Many patients confronting more complex clinical situations often find themselves having to weigh the benefits and risks of hormone therapy, which often leaves room for doubts and uncertainties. This has been the case for Muriel, who had recently experienced thrombosis caused by chemotherapy, which required her to undergo six months of anticoagulant therapy. Muriel had also started hormone therapy for her hormone-dependent cancer, and her main concern was not the side effects – which she nonetheless described as unpleasant – but the fact that hormone therapy increases the risk of thrombosis. Accordingly, she pondered whether to stop hormone therapy:

Muriel searched for information in both French and English, a language she knows very well, and knew that hormone therapy could offer her a statistical benefit. However, she had to weigh this possible benefit against the problems that the therapy could cause.

Morgana, diagnosed shortly before turning forty, was taking tamoxifen at the time of the interview but told me that she planned to stop the therapy in a few months because she aimed to take the drug for a total of three years. The many side effects ranged from joint pain to weight gain and cellulite, making it difficult for her to be comfortable in her own body. Morgana told me that she had tried to talk about these problems with her oncologist, who, however, minimised the side effects of the drug and scolded her for her lack of compliance. Morgana was also finding it difficult to deal with hot flashes and menopausal symptoms, effects accentuated by the fact that she was also taking an ovarian suppressant. She described her physical and emotional response as follows:

Morgana was also experiencing cognitive problems, to the extent that the brain fog caused by the drug required her to interrupt her studies. This made her further determined in her decision to stop therapy after three years. The protection that tamoxifen offers is proportional to the number of years that it is taken, something Morgana was well aware of. As such, she refused to consider stopping the therapy a failure, instead presenting it as a success, and praising her own efforts, commenting, ‘I guaranteed myself three years, I held up for three years, I did well’. What in the eyes of her oncologist was inadequate and a sign of non-compliance took on a completely different meaning for Morgana. For her, the three years of therapy were years of physical pain and sacrifices and the result of a negotiation between the instructions established by the medical protocols and the need to continue to live an active life. Morgana is not the only patient who had difficulty in discussing the side effects of hormone therapy with her doctor. Medical professionals tend to consider hormonal therapy an effective and safe treatment (Sarradon-Eck and Pellegrini, 2012). This opposition between the pharmacological experience constructed by biomedicine and the embodied experience of patients is certainly due to the different perspectives through which side effects are evaluated. As mentioned in the previous chapter, tamoxifen is considered a tolerable drug with limited side effects, and this opinion is in part due to the comparison between hormonal therapy and chemotherapy. However, in the experience of Morgana and many other patients, there remains a trace of the distrust, attenuated but not eradicated, that the medical system shows towards women who express their physical pain. ¹ The reduction in the years of therapy decided by Morgana is a response, albeit implicit, to this mistrust. It represents a way to put at the centre not the construction of the experience of the medical system but her own embodied perception of side effects. In this sense, her self-congratulations (‘I did well’) are a way to resist the trivialisation of side effects by presenting enduring them for three years as an achievement.

Morgana was not the only patient who had not fully followed the doctors’ instructions. Brigitte told me that she had stopped chemotherapy when her doctor announced that she had to change the type of drugs:

Brigitte was firm in her decision. She inquired about the therapy and the side effects and decided that, in her case, they were not acceptable. The peripheral neuropathy that chemotherapy would have caused was unacceptable for her because it would have meant giving up an activity that had defined her since childhood – tricoter – and giving up a tactile way of experiencing the world that she considered fundamental. Gagnon and Holmes (2016) use the concept of assemblage to rethink the side effects of antiretroviral drugs and how these can be seen as the product of the relationship between bodies, technologies and social and medical systems. Their analysis represents an invitation to approach side effects in a more open-ended way, to make space for different experiences of the interactions between patients’ bodies, the technology represented by the drug and the social organisation of illness and healthcare. The stories of Morgana and Brigitte feature attempts to keep the relationship between their own body and the treatments fluid and open by valuing other aspects of life over survival times in order to make the therapies more acceptable. In these negotiations, patients consider not only the impact that therapies have on survival times, but also their impact on quality of life. While measures of survival time are oriented toward the future, patients want to preserve their present life as well. In this sense, the refusal to undergo chemotherapy with Taxotere and the disinclination to take tamoxifen for five years cannot be dismissed as non-compliance but should be understood as attempts to keep the relationship with therapies open and as ways of negotiating the repercussions of the disease on their life.

The radical uncertainty of metastatic breast cancer

As more and more efficient therapies become available for cancer patients, extending survival time, the fear that cancer may return increasingly characterises the lives of many recovering from cancer (Skowronski et al., 2019). For patients with metastatic breast cancer, this fear is not hypothetical: the rift of uncertainty that the diagnosis opens swallows a significant portion of the previous life and identity of patients who are no longer simply ill, but terminally ill. ² Several of the patients whom I met defined the diagnosis of metastatic breast cancer as a devastating experience that profoundly altered the present and forced them to redefine their plans and expectations for the future. Among the most difficult aspects was the impossibility of knowing how much time they had left to live. As mentioned, even though median survival times for patients with metastatic breast cancer are increasing, only one third survive five years after the diagnosis, with some patients living longer depending on the biological characteristics of the tumour and their response to treatments (see Sundquist et al., 2017). At the time of diagnosis, it is not possible to foresee, for an individual patient, how the disease will develop, how effective treatments will be and what their life expectancy will be. This uncertainty takes over the lives of these women, profoundly altering also their present. Medical professionals can help patients to navigate this difficult moment. Dr Mark, a British oncologist, described trying to alleviate patients’ fears by explaining that while metastatic breast cancer is a terminal condition and they will most probably die because of it, they are not currently dying from breast cancer but, rather, living with it: ‘I say to my patients “you are not going to wake up dead anytime soon”’. Some patients find this approach helpful. For example, Mary, a British woman in her fifties whose cancer had spread to her bones, was told by her consultant that there is ‘a range of stage four’. She found this explanation useful because it helped her to understand her situation and what she might expect in the future. However, the ambiguous nature of metastatic breast cancer and the changes that the condition undergoes – increasingly being defined as a chronic condition (cf. Greco, 2022a; and Chapter 3) – can increase the difficulties that women face. The uncertainty and difficulty associated with predicting the course of the disease characterise the experience of metastatic breast cancer. Kathy, a British woman diagnosed in her fifties with breast cancer with metastases already spread to several organs, described the information and advice she received from medical professionals as contradictory. She was told that the treatment could keep the disease at bay for a few years, and simultaneously that she should make contact with palliative services. Several patients with metastatic breast cancer, especially in the UK, had received this advice, and one of the oncologists I interviewed in the UK, Dr Yasmine, said that the advice can be confusing. Palliative care and hospice services can offer support with pain management, but they are also strongly linked to end-of-life care. It is difficult for patients to reconcile this idea with the information that their condition is manageable. The mere fact that these services are mentioned amplifies the uncertainty of the situation. The limited time that medical professionals often have to discuss matters with patients represents another challenge.

Several patients whom I met had consulted more than one oncologist. Some did so because they wanted to change medical professionals. Others just needed more or different information so they could decide how to proceed with their life. Nicole, a French woman who was fifty years old when she was told that her cancer had returned and that she had lesions in her bones, told me that ‘It's impossible to have statistics’. Nicole would have liked more information regarding the life expectancy for her subtype of cancer, the likelihood of being able to return to work and whether she should remain in her apartment on the third floor of a building without an elevator. Receiving unsatisfying responses to her precise questions, Nicole, frustrated by the evasiveness of the medical staff, booked an appointment with another oncologist in another hospital in Île-de-France. This second oncologist was able to give her the information she needed. As we saw in Chapter 1, the organisation of the French and Italian healthcare systems allows patients to approach doctors more flexibly than in the UK. Many of the patients who consulted several doctors, including Nicole, were satisfied with their decision and said that this was a good strategy not only for obtaining new information but also for checking the quality and reliability of the information already obtained. However, even patients with the most resources face the inherent difficulty of predicting the evolution of the situation. The impossibility of anticipating the development of the disease means that moments of stability, in which the patient might live with a limiting but stable condition, become elusive. A study conducted in Italy (Alfieri et al., 2022) shows how even patients with oligometastatic situations feel that a rapid deterioration is always possible, and mentions the wide range of health-preserving practices that patients need to take. This unstable situation makes it impossible for patients to plan for the future, significantly impacting on the present and making it difficult for many women to make decisions on how to orient their lives. Furthermore, recent years have seen growing attention on the financial impact cancer can have on patients, even those residing in countries with universal healthcare (see, among others, Flaum et al., 2020). Out-of-pocket payments are often costly, and a debilitating disease like cancer negatively affects the professional lives of many patients. The story of Robyn, a British woman in her forties, illustrates the financial stress caused by uncertainty. At the time of the interview, Robyn was about to start a new treatment, but it was impossible to know whether it would work. She said that if the treatment did not work she could be ‘on [a] very short-time lifespan’, but also expressed hope that she could be one of the patients who, as her consultant told her, have good results with capecitabine. This uncertainty about the future affected her present because she did not know whether to continue working – because the new treatment could significantly extend her survival time – or whether it might be better to retire early and enjoy her last years living on her savings. These experiences suggest that a deep uncertainty about the future characterises even the best moments, influencing patients’ psychological well-being and their views on their future and their personal relationships.

Considering the impact of scarce and ambiguous information on patient lives, some expressed a negative opinion about having too much information. Olivia, a British woman in her fifties, told me that a few years after the end of treatments for an HER2-positive tumour, the cancer returned, this time with brain metastases. After the diagnosis of the recurrence, doctors told her that her tumour subtype can return even after five years, with patients diagnosed with HER2-positive breast cancer exposed to an increased risk of developing brain metastases. After the treatment for early-stage breast cancer ended she was happy to be able to put the disease aside; she remembered the doctors mentioning the word remission and thinking: ‘they treated me, I am done’. Now that she was receiving treatment for metastatic cancer, she added: ‘I am glad I didn't know that [as] I enjoyed the five years.’ Olivia told me that even if she had known about the risk of relapse, she could not have done anything about it, and that not knowing allowed her to live the period between the end of treatments and the diagnosis of metastases more peacefully. Even at the time of the interview, aware of the incurability of metastatic breast cancer and that the treatment would eventually stop working, she felt that she did not need to know everything:

The uncertainty about the disease's trajectory and the efficacy of available therapies significantly impacts on patient lives, even when the condition is momentarily under control. In a context that sees patients struggle to control the repercussions of the disease for their present and future life, knowledge might not always be useful, because, as Olivia noted, they cannot do anything. As we have seen in Chapter 3, many patients might not agree with Olivia's position, and, in this oscillation, we can see reflected the changes that metastatic breast cancer is undergoing in its slow redefinition from a terminal condition to a chronic one (see also Chapter 3; and Greco, 2022a). However, while the definition of ‘chronic’ can capture some of the changes in the treatment approach, it remains unsatisfying (Greco, 2022a).

In Chapter 2, I discussed how the rhetorical shifts in discourses around breast cancer influence the social script underpinning the disease. More than early-stage breast cancer, metastatic breast cancer disrupts the dominant expectations: redefining a terminal disease as an opportunity for moral growth is indeed difficult. With no or little support, women with metastatic breast cancer find themselves having to do emotional and practical work to adapt to the new condition so as to maintain an acceptable quality of life. The volatile condition of metastatic breast cancer is often exacerbated by the social context in which women live. Difficulty in obtaining satisfactory answers from medical personnel and financial and professional difficulties represent barriers that intensify the uncertainty and isolation of patients. In this situation, the assemblage processes that patients use to navigate the difficulties (e.g., consulting different doctors to triangulate information and planning for the future) are kept open so as to include both the inevitable and unpredictable changes related to the disease.

Conclusion

For patients with breast cancer, the diagnosis represents an alteration of their lives that introduces uncertainties and ambiguities. Even in The Cancer Journals, a book about strength and empowerment, fear is a term that occurs often: ‘I was also afraid that I was not really in control, that it might already be too late to halt the spread of cancer, that there was simply too much to do that I might not get done, that the pain would be just too great’ (Lorde, 1980: 27), writes Lorde a few pages after the passage quoted at the beginning of this chapter. One of the main causes of uncertainty and loss of control is the risk of a recurrence, especially if the cancer spreads to other organs, and most therapies aim to reduce this risk of the disease returning in its metastatic form. This objective is central to oncology, and the focus on it often means minimising the side effects of therapies – as in the case of hormone therapy, which is prescribed for five years and, in some cases, even ten. Side effects are a consequence of the encounter between not only the drug and the patient's body but also the drug and the other aspects of their life (their aspirations, their plans for the future, the type of life they live and the aspects of it that they want to preserve) and the changes produced (neuropathy, early menopause, fatigue and brain fog) that are located in these contexts and that can be intensified by the entanglement with the treatment. Post-diagnosis bodies are the results of imperfect medical-bodily assemblages between the materiality of the disease and the limits of biomedicine. Patients respond to this with other forms of provisional and imperfect bricolage-assemblage. This can involve the decision to not undertake certain therapies or to interrupt therapies earlier than prescribed. Although choices of this type are viewed negatively and defined in the medical literature as examples of non-compliance, they are the result of reflections that consider the different needs that patients have and attempt to preserve important elements of their present while trying to extend their future life through therapy. By searching for information and deciding to only partially follow medical indications, patients recombine the medical indications using forms of biographical and bricolage-assemblages. Women try to maintain some control over their lives by limiting the uncertainty of the disease and deciding to value not only the need to extend survival time but also their quality of life. These assemblages are equally imperfect, but also temporary and elastic. A major change that alters the precarious balance built by women is the diagnosis of metastatic breast cancer. As we have seen, this phase – which oscillates between a terminal and a chronic condition – introduces greater uncertainty into the life of patients. The near certainty that breast cancer will be a patient's cause of death overlaps and conflicts with the impossibility of knowing when this will happen. In addition, frequent changes in therapies to keep the disease at bay often force patients to readjust to new side effects. The uncertainty that marks women's experience forces them to implement forms of recombination and assembly that are open, provisional and in need of readjustment and redefinition.

The illness experiences of women faced with death, an invasive presence for many and especially for those with metastatic cancer, becomes difficult to grasp and describe. The individuality of the illness experience emerges forcefully, as does its ineffability. The illness narratives collected here represent an effort against this ineffability of illness and death. Moreover, although partial, these stories show how the uncertainty caused by breast cancer is also defined by elements such as gender or class. The processes of biographical assemblage, which also include silence about one's pain, both moral and physical, are forms of effort and work that are frequently neither recognised nor supported. Additionally, women must also undertake the invisible work of relational (re)assemblage, of their personal and professional lives post-diagnosis, which I will discuss further in the next chapter.