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The cultural landscape of breast cancer

Starting with a discussion of the dominant international discourse around breast cancer linked to the ‘pink ribbon’ rhetoric, this chapter analyses how those discourses are adapted and transformed in the France, Italy and the UK and their impact on patients’ experiences. The US-based Komen Foundation was among the first associations to promote a rhetoric of prevention through early detection, merged with an injunction to optimism and a glamorous communication style. National charities and associations and charities in all three countries, as well as local healthcare authorities, have introduced campaigns in line with the pink ribbon rhetoric. However, some important changes are innovating the social and cultural understanding of breast cancer; for instance, metastatic breast cancer, usually invisibilised, has gained visibility in some more recent campaigns. Using interviews with different patient advocates and activists and fieldwork involving participant observation of several advocacy and activist initiatives and events, the chapter analyses the different opportunities for advocacy in the three countries. It also explores the various ways in which patients react to neoliberal injunctions to optimism. If, for some people, a diagnosis can be a catalyst of positive changes, the majority remain sceptical of rhetoric that fails to address their uncertainties about the development and possible recurrence of cancer. As breast cancer is the source of significant uncertainties, requiring patients to assemble their knowledge about the possible evolution of their cancer, a context of contradictory messages further complicates theit experiences of breast cancer.

At the beginning of my fieldwork, a colleague who knew of my work on breast cancer sent me a link to the website of David Jay, a fashion photographer and author of the SCAR – Surviving Cancer: Absolute Reality – Project (www.thescarproject.org/). This photographic project aims to provide an honest image of breast cancer by portraying women with reconstructed breasts or asymmetrical bodies following a mastectomy (Jay, 2012). The photos were intense and honest, and it is no wonder the project earned the artist a Pulitzer Prize nomination (Ryan, 2011). But, following the link I had just received, one detail caught my attention, the subtitle: ‘Breast cancer is not a pink ribbon’. It occurred to me at that moment that that phrase, so meaningful to me, would make no sense to my mother and the many older women in my family who, while being well aware of the harsh reality of breast cancer, did not know why a pink ribbon should have anything to do with it. In the space of a generation, a semantic and iconographic shift has taken place, completely altering the way the disease is perceived. The SCAR project is not the first example of photos showing the traces of breast cancer. In 1993, for example, the New York Times Magazine published ‘Beauty Out of Damage’, a picture in which the US artist Matuschka showed her asymmetrical body and that is now considered one the most powerful images of breast cancer (Petersen and Matuschka, 2004). However, in David Jay's project there is a direct reference to the pink ribbon, and the photos are intended to contrast with the glamorous image of the disease that this symbol evokes.

In 1992 a pink ribbon became the symbol of Breast Cancer Awareness Month, with the cosmetics company Estée Lauder producing over 1.5 million ribbons to be distributed as a visual reminder to accompany the simple message conveyed in awareness campaigns: that early diagnosis saves lives (Selleck, 2010). 1 Since then, the pink ribbon has become a metonymy for breast cancer. Even though these events are deeply embedded in North American biomedical and cultural history, the spillover has been global. The pink ribbon is also a powerful reminder of how neoliberal ideology infiltrates biomedicine and healthcare as it evokes a specific construction of breast cancer in which patients remain consumers, especially of products that enhance femininity and traditional roles within the family (King, 2006). The pink aesthetic invokes not only a particular way of presenting breast cancer but also a way of mobilising public opinion against the disease – by participating in races and buying products painted in pink (Sulik, 2011). Activism and participation in community activities centred on breast cancer are part of the resources that patients can mobilise. Some groups explicitly reject the pink rhetoric, but, as we will see, some can use it superficially and instrumentally. Moreover, the history of health activism unfolds in different ways in different countries, shaping the perception of the disease and opportunities for action (see, e.g., Klawiter, 2008 for the US; Knobé, 2009 for France; Porroche-Escudero, 2014 for Spain; Batt, 2017 for Canada; and Hamarat, 2020 for Belgium).

In the previous chapter, I explored how healthcare contexts shape breast cancer experiences. In this one, I discuss the cultural discourses on breast cancer, the different kinds of associative work around the disease and how individual women negotiate hegemonic cultural images of breast cancer. I explore such negotiations through the concept of cultural-political assemblage. The other kinds of assemblage explored in this book are all, to a certain degree, both cultural and political. However, with this term, I am focusing on the cultural politics of breast cancer (e.g., Nielsen, 2019), that is, on how public discourses on breast cancer, including those beyond the biomedical realm, are negotiated both collectively and individually. Previous analyses have dealt with political assemblages as a way to conceive collective action beyond both formal and identity politics (e.g., Amironsei and Bialecki, 2017). Breast cancer-related movements have been the object of several analyses, mostly focusing on North America (e.g., Klawiter, 2008; Ley, 2009). Here, I also analyse how associations with varying degrees of politicisation negotiate the discourses of breast cancers and how individual patients choose to what degree to participate in this kind of collective action. The associative context indeed can itself be considered a product of the cultural-political assemblage between the sick body and local cultural systems, and for patients the associations can represent a way of rearranging their own biographical assemblage in relation to the experiences of other patients.

While, in the last decade, the pink rhetoric has received many criticisms, this does not mean that moralistic injunctions around cancer have disappeared. After all, as Sontag (1978) showed over forty years ago, our understanding of cancer has been filtered through metaphors of repression, but also of ‘idleness’ and opulence, and it is difficult not to read in this the reference to the contemporary debate around lifestyle and cancer. The contemporary injunction to self-improvement taps into this cultural imaginary and redefines the moral boundaries of cancer. Here I am interested in exploring how rhetorics around breast cancer are adapted and transformed in Europe and how they affect the experiences of patients living with breast cancer.

The pink ribbon comes to Europe

The fortunes of the pink ribbon are strongly linked to the US Susan G. Komen Foundation, one of the most prominent breast cancer associations. Founded in 1982 by Nancy Brinker, the Foundation is named after Brinker's sister, who died of breast cancer in 1980, at the age of thirty-six. The Susan G. Komen Foundation is praised for being one of the first organisations to have spoken explicitly about breast cancer at a time when women and their families were living the disease in silence. Komen's activities aim to reduce mortality by increasing early detection of the disease, and the Foundation has been a leading advocate for expanding breast cancer screening programmes in the US. The success and longevity of the Komen Foundation can be attributed to its ability to spread the simple and optimistic message that early detection can save lives and to promote prevention campaigns (see Braun, 2003). Since the beginning, the Foundation has organised fundraising activities, including the well-known Race for the Cure, the first edition of which took place in October 1983, before October became Breast Cancer Awareness Month in 1985. Another aspect that has played a pivotal role in its success is the partnership with various businesses – from cosmetics companies to car manufacturers to airline companies – which, over the years, have spread the simple message of ‘prevention’ (Braun, 2003; Selleck, 2010). By donating a portion of their proceeds to breast cancer research, these groups have presented a charitable and progressive image to customers through a process known as ‘pink-washing’ – a term coined by the grassroots association Breast Cancer Action. 2 This definition refers to a specific aesthetic of breast cancer, characterised by the omnipresence of the pink colour and the pink ribbon, which has gradually taken hold. Several analyses have criticised such an approach, defined as cause-related marketing, in which social problems, such as breast cancer, become a marketing strategy to sell products of all kinds, from cosmetics to cars to detergents. In particular, these forms of associationism have been linked to the general backlash against feminism that characterised the late 1980s and the 1990s (King, 2006). This interpretation of the phenomenon helps us to understand how cause-related marketing strategies contribute to extending the expectations that a patriarchal society imposes on women in their everyday life – to be excellent wives and mothers without forgetting to be attractive – to the oncological context so as to build a gendered image of breast cancer (Sulik, 2011). Moreover, the message of optimism and the emphasis on the benefits of early diagnosis excludes the experiences of women with metastatic breast cancer (Sulik, 2014; Davis, 2016). However, this latter point is changing, and, as we will see in Chapter 3, public messages about breast cancer are starting to address the metastatic stage of the disease.

Other breast cancer organisations have challenged the simplistic discourses that emphasise prevention through early detection, overshadowing the environmental causes of breast cancer and the discriminations based on race, class and gender that the disease highlights (Klawiter, 2008). Among the associations promoting a critical stance on breast cancer, one of the most prominent is Breast Cancer Action (BCA; see Klawiter, 2008; De Michele, 2016). Under the direction of the late Barbara Brenner, BCA has led initiatives exposing how cause-related marketing involves brands whose products – such as food containing hormones linked to breast cancer and cars fuelling environmental pollution – increase the risk of developing breast cancer. The activities of BCA have been instrumental in deconstructing the pink-washing phenomenon.

If the pink ribbon rhetoric and the imposition of an optimistic tone surrounding breast cancer originated in the US, they have spread quickly in other countries (see, for example, the analysis of Porroche-Escudero, 2014 for Spain). The Komen Foundation has established local chapters in a number of countries, and the Race for the Cure has involved millions of participants worldwide (Braun, 2003). October is now internationally recognised as Breast Cancer Awareness Month, and initiatives, often characterised by the colour pink and pink ribbons, are spread worldwide.

In Italy, where Komen has a national chapter, the Race for the Cure takes place in various Italian cities at different times of the year, with the involvement of local groups and the creation of prevention programmes. Always in Italy, several companies use breast cancer to boost their sales. In France and Italy, a number of public monuments are illuminated in pink in October, following the example of initiatives already widespread in the US. As in the US, these forms of activism have also generated criticism and negative reactions in Western Europe. 3 In France, for example, a part of public opinion is critical of exploiting a disease for commercial purposes and using simplistic messages that push women to have a mammogram by making them feel guilty (Omrane and Mignot, 2018). Similarly, research conducted in 2015 showed that Italian consumers tend to perceive cause-related marketing negatively (Schoier and de Luca, 2017).

However, in Europe there are several types of associations against breast cancer and cancer in general (see, e.g., Knobé, 2009 for an analysis of the situation in France), and in several instances the pink ribbon rhetoric and aesthetics were not simply imported, but have been adapted to the local contexts. Several patients whom I met in France mentioned the work of the association Vivre comme avant, a branch of the Reach to Recovery Association, founded in the US in 1953. The women volunteering in this group have all experienced the disease at first hand, and they share their experiences to support women who have just received the diagnosis. The main activities of Vivre comme avant are hospital visits to support patients facing treatments and out-of-hospital support to patients who turn to the association, responding to their doubts and questions about treatments or other aspects of the disease. Another association that plays an important role in France and Italy (and elsewhere in Europe) is Europa Donna, created in Milan in 1994 following an idea of the Italian oncologist Umberto Veronesi (see Chapters 4 and 5). The priority of this association includes the ‘harmonization of standards of treatment throughout Europe, emphasis on education and training for health professionals, increases in research funding, and increased diffusion of screening programs’ (Buchanan et al., 2004: 148). Europa Donna also offers phone support and organises information meetings for patients. During the interviews with metastatic patients, it emerged that Europa Donna was among the first to bring attention to metastatic breast cancer.

Alongside these larger associations, in both countries several small groups have been established with a specific rooting in local areas (see Mosconi and Kodraliu, 1999 for the Italian case). As I will discuss in the next section, these groups support patient needs on a local level. Further, some of these smaller groups are organised around specific aspects of the treatment pathway. Smaller groups can, for example, focus on disseminating information around specific reconstruction techniques, and their efforts are directed toward making a specific technique available in the national area and supporting patients pursuing that reconstructive approach. There are also groups focused on changing some aspects of the social perception of breast cancer, such as raising public awareness regarding the choice not to carry out a reconstruction (Greco, 2016c; Fortier, 2020).

The British context is more strongly characterised by large national cancer organisations, usually registered as charities (cf. Allsop et al., 2004). Along with the more common role of funding research (particularly Cancer Research UK), cancer charities in the UK are notable for more direct intervention in providing services. Macmillan Cancer Support and the Marie Curie charity fund nurse posts directly, while Maggie's funds support centres. Several patients and medical professionals have highlighted the role of such centres – usually located close to hospitals specialised in cancer care, and characterised by warm and welcoming architectures (Martin et al., 2019). They offer a place for patients to relax and meet others going through the same experience, but they can also offer advice on practical matters such as how to claim benefits.

In the field of breast cancer, the main national charities in the UK (Breakthrough Breast Cancer, Breast Cancer Campaign and Breast Cancer Care) have undergone a series of mergers, forming the current Breast Cancer Now. Charities in the UK have historically been central in funding and shaping cancer research (see Gibbon, 2007, who also noted how most of the fundraising advocates she met were relatives of patients) and in bringing attention to the disease in the social and political arena. Although these charities have used the pink ribbon imagery in some of their campaigns, the UK's associative landscape seems to have retained its identity and has never fully adopted the message from the US. 4 Outside the national charities, patient activism and advocacy are represented mainly by specific advocacy groups (such as MET UP UK, for metastatic breast cancer), with a further space created by requirements for patient involvement, which has led to individual NHS Trusts creating their own patient advisory groups.

In the three countries, it can be difficult to map the rich associative panorama, since many small groups are linked to the efforts of a few patients, and these groups can sometimes be active for only a short time. Nonetheless, smaller, local initiatives are pivotal in supporting women living with breast cancer. They can offer tailored information and support and help women find a network that includes other breast cancer patients. Some of these groups may tap into a pink aesthetic without necessarily sharing its values or messages, simply exploiting the metonymic value of a colour or a symbol that, in the public imagination, is immediately associated with breast cancer. Given the variety of associations and groups, patients can often contact several for different purposes and at different moments of their experience, as we will see in the following sections.

Changes and adaptation: how women navigate the associative landscape

Associations and support groups act at multiple levels and are organised differently in the three countries, albeit with similarities, as seen in the previous section. Here, I focus on how patients use, combine and innovate the different forms of advocacy and support available to them. As we have seen, in addition to the more prominent associations organising national initiatives, numerous local groups pursue different aims through different activities. The participation of patients in association activities can take several forms. A first and essential distinction is between activities in which patients have an active advocacy role (which can range from promoting a specific treatment to more general political positions about the disease) and activities in which patients benefit from services aimed at improving their experience of illness. 5 The profiles of these two activities can overlap, and the social and political organisation of the healthcare system can also influence their distribution. In France, 6 I have encountered both types of involvement, while in Italy and the UK, I have mostly encountered patients focused on sharing and receiving information about the functioning of the healthcare system and on how to manage some aspects of their disease.

Local groups often aim to create a place where patients can meet to reduce the isolation that can be part of the breast cancer experience. During my fieldwork, I met several women volunteering in smaller groups, like Marguerite, a woman in her late fifties and member of a group located in a suburban area on the outskirts of Paris. Marguerite told me that the bénévoles (volunteers) carry out various support activities, including visiting patients in hospital. During the interview, the woman told me that at the moment the group was preparing to stage a theatrical piece for Octobre rose (Pink October, the name given in France to Breast Cancer Awareness Month), the aim of which was to ‘dedramatiser le cancer’, that is, to defuse the dramatic tones around breast cancer, but also to offer information on prevention and treatments. The members of the association highly appreciated the initiative, and what mattered most, according to Marguerite, was that they were creating a welcoming and engaging space ‘so that people have a reason to get out’. Marguerite underlined the convivial and relaxed atmosphere that the association offered. Although the event that the group was preparing was part of the Octobre rose activities, the Breast Cancer Awareness Month seemed just an excuse to engage the women in the association and allow them to work towards a common goal.

For many, participation in advocacy activities was motivated by a willingness to ‘use’ their illness experience to offer support and improve the medical services for breast cancer. This came out clearly in my French fieldwork, as I observed the meetings of a project established by a Parisian medical institution that aimed to improve communication on mastectomy and reconstruction options by producing new informative tools for patients. The participation of the patients who, meeting after meeting, presented their experiences, proved to be central in shaping the new communication strategies and materials. Among the changes introduced were the choice to no longer define mastectomy as mutilation and new communication strategies that include understanding why women do not undergo reconstruction, including cases in which they come to terms with an asymmetrical body (Greco, 2016c).

To fully understand the advantages and limitations of patients’ advocacy, it is important to analyse the imbalance that the collaboration between patients and medical professionals can produce. As mentioned, some smaller advocacy groups can revolve around specific aspects of the medical pathway, such as the associations promoting specific reconstruction techniques. Women in such associations wanted to support others in obtaining the best reconstructive option. However, volunteers often worked closely with surgeons and other medical professionals. The alliances between doctors and patients were organised according to an unbalanced and gendered division of roles. For example, it was made explicit that the information volunteers gave could not replace a medical consultation. Medical professionals were those with expert, ‘objective’ knowledge, while volunteers shared their ‘experience’, which was presented as a partial, limited expertise from which no general inference could be derived.

For some patients, participation in such activities can be a way to rediscover some forms of sociality altered by the disease. Several cancer groups and charities met these needs by offering a range of patient-focused activities such as Pilates, gentle gymnastics, Nordic walking or forms of psychological support. Many women whom I interviewed in France participated in and often benefited from these workshops. For many, these dedicated activities represented a way to confront aspects of the disease, obtain information and meet people with similar experiences. However, these initiatives also offered the opportunity to try out new activities, such as theatre and other forms of artistic production, that could bring some solace in a difficult moment. Brigitte, a French woman in her late fifties (whose story I discuss more in detail in Chapter 5), had a great passion for sewing and knitting. Through an association, she participated in a project that involved the creation of dresses for asymmetrical bodies. The engagement in this project, the woman told me, was an essential step in addressing the physical changes caused by the surgery.

Sally, a British woman diagnosed in her thirties, told me that she decided to participate in a conference organised by a breast cancer charity dedicated to young patients with breast cancer because most patients in the clinic where she was being treated were significantly older than her. She felt the need to exchange with women who, like her, were dealing with cancer while supporting a young family. Sally described the conference as a positive experience because it allowed her to connect with women in a similar situation who could help and support each other. After the diagnosis, Sally decided to launch a website with medical information and to use social media to create spaces for discussion between women. During the interview, Sally repeatedly emphasised how her online activism aimed to create new spaces where people could talk and offer peer-to-peer support. Several interviewees have underlined the importance of being able to share their experience with women in the same situation. For example, Franca, an Italian woman in her mid-forties, said that she felt welcomed in the association in Northern Italy where I met her:

[the association] is a point of reference, you feel welcomed, the women there give you advice, they understand, you don't need to give a detailed story. The association is a place where you can go if you need something because maybe they can give you advice, they can tell you: ‘see that person, do this or do [it] there, that's what happened to me’.

Franca underlined how it might be easier to talk to people who share the same experience and understand the difficulties without her necessarily having to provide too many details about her condition. But the women whom she met at the association could also advise on specialists to consult and facilities to contact (knowing the ‘right’ specialist is particularly emphasised in the Italian context – Greco, 2019). During these meetings, patients exchange their experiences on the type of therapy they are undergoing, their relationship with the medical staff and the quality of their care. This knowledge from other patients’ first-hand experiences with the disease and the healthcare system is important for many. Several patients whom I met, in all three countries, underlined that visits with surgeons and oncologists are often short, and it is difficult to have a detailed discussion and obtain all the information patients need. The horizontal sharing of knowledge that patient groups can offer represents a way to overcome the limits of healthcare systems in the three contexts explored. However, several patients also highlighted the limitations of patient groups. Poppy, a British interviewee in her late forties, told me she attended only a few meetings of a nearby support group because she did not want to ‘hear everyone else's horror story’. Other women expressed the same doubt, stating the importance of balancing involvement in associations with the need not to be absorbed by the disease.

Additionally, many patients with metastatic breast cancer expressed greater distress. We have already seen how many of the messages around breast cancer revolve around early detection and treatments aimed at curing the disease. Women with metastatic breast cancer, who are therefore in a terminal stage and aware that they cannot recover, are excluded from these messages, and this limits their participation in the activities of some of the main associative groups. Alfieri and colleagues (2022), in particular, highlight the need for a greater engagement with the needs of patients with metastatic breast cancer among Italian charities. Florence, a French woman in her late forties, said that since her diagnosis, she had participated in several events. Still, they did not focus on metastatic breast cancer, except for a few more recent conferences finally starting to address the experiences of patients living with metastatic breast cancer. Describing one of those events, she said:

It was the first time that we spoke freely about metastases in front of an audience of all kinds because I, for example, in [other support group meetings], I always had trouble talking about it because I had other women in front of me who didn't have metastatic breast cancer and I was afraid to let them know that there was the possibility of having a relapse.

Florence appreciated the opportunity to participate in an event focused on her situation and to be able to speak freely about her experience, because for her was difficult to talk about metastatic breast cancer in the presence of women with early-stage breast cancer and in contexts where breast cancer is presented as curable. The experience of Camilla was in many respects similar to that of Florence. The young British woman said it was easier to find support after being diagnosed with early-stage breast cancer than when she was diagnosed with metastatic breast cancer. Camilla was able to find support through online activism, which often enables connection with patients with similar but less visible experiences, and creates communication spaces that can bypass traditional initiatives focused on extremely simple messages that do not find a place in the lives of many patients.

Bell and Ristovski-Slijepcevic (2015) have analysed the communication strategies used in cancer prevention conferences aimed at the general public. The goals of the initiatives observed by these researchers were to present the connections between diet, physical activity and cancer and to offer strategies for implementing lifestyles to reduce the risk. The researchers underline how communication strategies aim to simplify the messages they provide, even in the face of much less clear scientific evidence. One result of this type of communication is the emphasis on the link between cancer and lifestyle and the possibility of reducing cancer risk by adopting appropriate lifestyles (Greco, 2016a). Encapsulating the complexity of the disease in simple messages seems to be a common element in the communication between patients and medical institutions. In my fieldwork, it emerged that several patients participated in workshops and initiatives organised by medical facilities and hospitals which aimed to provide information for patients who are about to finish or have just finished their treatments. Sandra, a British nurse involved in these initiatives, said their goal is to ‘make sure that they're able to self-care rather than being so reliant on hospitals’. These initiatives usually include information about nutrition, sports activities that can be undertaken and techniques to manage anxiety. Similar initiatives are also present in Italy and France, and many patients have attended them and said they have received helpful information and guidance on improving some aspects of their lives after their diagnosis. However, these initiatives, while certainly beneficial for some patients, encourage a vision of the disease as a finite episode in life, after which patients will have a decreasing need to maintain a relationship with medical facilities and should instead focus on improving their lifestyle.

While helpful for some, these forms of support foster a vision of the disease as a catalyst for self-improvement, which, as we will see in the next section, has an ambiguous role. This approach is an example of how the emphasis on individualisation aims at constructing an ideal patient capable of managing their health problem independently, thus limiting the burden on healthcare services. Cuts to health expenditures drive the individualisation of care. As we will see in Chapter 3, cancer care is made more complex by the introduction of new drugs, and the demands that new treatments introduce are not sufficiently balanced by additional new resources for healthcare institutions. The risk is an overall reduction in the quality of patient care. Moreover, as Florence and Camilla pointed out, patients with metastatic breast cancer may not recognise themselves in these messages because metastatic breast cancer is a terminal disease, cannot be managed outside of the hospital (Greco, 2022a) and does not fit into the optimistic rhetoric of cure (see Chapter 3). Daisy, a British woman in her sixties, described in this way her experiences with events of this kind organised by the NHS Trust in which she was treated:

I was never told that I was cured, I am not saying that, but I was given the impression that … the hospital offered a ‘survive after cancer’ course that kinda of gave the impression that you had cancer, you have done the treatments, and off you trot. I don't know if this would have made it any easier, but I would have liked to have known that there was more of a chance that it would come back.

Daisy's experience shows how the desire to produce patients able to manage their post-cancer care independently is not always in line with the risks of breast cancer, and, as many patients have underlined, it would be essential to include more balanced and honest communication on metastatic cancer.

Negotiating the optimist rhetoric

Several scholarly and activist analyses have criticised the dangerous implications of the cheerful and glamorous pink rhetoric surrounding breast cancer (Ehrenreich, 2001; Sulik, 2011). These concerns have finally gained traction among the general public. An article published in 2017 in the British newspaper the Guardian criticised fundraising strategies using pinkwashing practices and encouraged us to ‘sink the pink’ (Boyd, 2017). However, the same year, the same newspaper published an article in which a well-known British presenter diagnosed with breast cancer stated: ‘After cancer, I'm squeezing life out of every second’ (Kellaway, 2017). British journalist George Monbiot wrote the following year about his prostate cancer: ‘Through my cancer, I have found the key to a good life’ (Monbiot, 2018). 7 Articles and books presenting cancer as a rebirth experience abound. Accepting cancer as an opportunity is increasingly becoming part of the social script of the disease, and while it might not include a glamorous presentation of breast cancer, the new script is still limiting for many women. If patients can today express temporary anger and fear, this possibility seems conditional on the need to transform the disease into an occasion to improve oneself and one's life.

One of the possible reasons for this paradigm shift is that, despite the undeniable improvements brought by therapeutic innovations, for most patients, surviving cancer does not mean having a cancer-free life. The consequences of the disease and the risk of relapse mark patients’ lives permanently. For many, finding a way to come to terms with these changes is an important step. The modification brought by the disease has been described as a ‘new normal’ (Trusson et al., 2016). For many patients, accepting a new, altered life is essential to regaining the quality of life after cancer, to the extent possible. However, discourses of renewal are an invitation not just to accept life's changes but to use them to create a new and enhanced version of the self. Bell (2012) has shown how psycho-oncology presents a traumatic experience, such as cancer, as an opportunity to adopt healthy lifestyles and reach psychological growth using the traumatic experience.

The construction of this enhanced and wiser self involves learning, thanks to the disease, how to appreciate life more. In my fieldwork, some patients have described how cancer has given them a more critical and radical outlook on life (see Chapter 6); however, this political growth is rarely discussed, either in psycho-oncology or in general cultural venues. Another aspect of this post-cancer enhancement rhetoric is that patients, as seen in the previous section, are encouraged to change their lifestyles. While adopting a new diet or taking up sports can benefit individuals, there is no guarantee that these changes will prevent a relapse. Moreover, not only is the possibility of adopting a certain lifestyle strongly linked to people's income and type of job, but discourses emphasising the role of individual behaviour obscure the environmental and social causes of cancer (Brown, 2007; Greco, 2016a).

In Chapters 5 and 6, I will discuss how women respond differently to life-altering experiences like serious illness. In some cases, they may gain courage and a new, brighter outlook on life. However, the univocal portrayal of cancer in the media as a source of moral strength or inner peace significantly influences patients’ experiences and expectations.

I met Mélanie, a French woman in her fifties, in a café on the outskirts of Paris. She was nearing the end of her treatments, and she told me that the diagnosis had been a shock and the disease had caused professional and personal disruptions. She also added that she was still looking for the sense of her illness:

One always finds a sense in the disease […]. But I should tell you that the sense of my disease, I am still looking for it. I look for the sense of my disease: what will I get from this disease? Because I also worked [with cancer patients] and I remember a woman, who had a son, who was her adoptive son, and [she] had a lot of relational difficulties with her adoptive son, and one day she told me ‘the disease gave me something, it allowed me to settle all the accounts and now it's great’. I cannot get to see what I have got from the disease […] I think that it's also this, that I am looking for a sense in my disease and I cannot find it. […] I would like to find a sense in this disease and see in what way it makes me go forward.

Illness has already been analysed as biographical disruption (Bury, 1982), as an event separating the present from the past and introducing uncertainty about the future. However, Mélanie was not just trying to recompose the fracture between her pre- and post-diagnosis life: she hoped to obtain positive changes. The contemporary construction of cancer fostered her expectations that her illness might be a catalyst for improvement. However, in her case, these changes were slow to manifest, and the fact that she could not see the positive outcome that would have given a new meaning to her cancer made the overall experience – the diagnosis, the difficulties and the pain linked to the therapies – harder to accept. This story is a way to explore how messages of post-traumatic growth and transformation can permeate the lives of patients. Mélanie's expectations echo what Berlant has defined as cruel optimism, i.e., ‘when something you desire is actually an obstacle to your flourishing’ (Berlant, 2011: 1). The injunction to optimism introduced around breast cancer takes something intuitively negative – illness – and builds expectations that it will improve one's life. Berlant analyses the aspirations for the good life and how the elements that can characterise a life as good are determined by what she defines as the ‘neoliberal restructuring within the ordinary’ (Berlant, 2011: 16). A disease like cancer goes beyond the ordinary and enters the realm of the tragic, but its tragic nature does not prevent neoliberal ideologies from shaping our ideas of the disease. In this situation, a cancer diagnosis is rearranged as an event from which one can gain something, 8 on which one can capitalise. And the gain of this capitalisation is a new, brighter outlook on life and a healthier lifestyle. However, many women whom I met did not fit into this vision. The construction of cancer as a transformative event is grounded in the image of a patient who not only adheres perfectly to treatments but also has an early-stage diagnosis and no relapse. Further, it is grounded in the image of a white, middle-class woman living in the Global North. For this ideal patient, cancer is a tragedy that strikes in an otherwise happy life. And while many women might recognise themselves in this description, it finds limited application in other social, cultural and economic contexts. New theoretical frameworks have emerged to provide more accurate interpretations of these experiences. For example, Banerjee (2020), in his research, analyses the experiences of cancer in India as forms of endurance, situations in which the diagnosis of cancer takes place in a context of precariousness and difficulty and ‘put[s] further pressure on already frayed social relations’ and in which ‘living with cancer entailed living with a pervasive doubt about the viability of such relations’ (Banerjee, 2020: 4). The women whom I interviewed in southern Italy had greater financial and social stability than the patients Banerjee interviewed. However, they too found themselves in the situation of having to include the disease in an already difficult life characterised by challenging work and personal situations that reduce the space they can give to their illness. Elsewhere I have analysed these struggles, and the strategies women employed to deal with cancer, as forms of ‘biographical containment’ (Greco, 2023). The concept starts from previous literature (Manderson, 2011) on how people react to traumatic events by attempting to build identities beyond their illness. Containment (see also Alonzo, 1979) indicates cases in which patients limit the space given to the illness in their life. By biographical containment, I refer in particular to cases in which they either can rely on resources to limit the impact of the illness or have to limit the space given to the illness because of other co-occurring problems. Many women whom I met stressed that they had been dealing with other serious health problems before the diagnosis, in some cases as patients, in others as caregivers for family and friends. For many women, the need to contain the impact of breast cancer in their lives was linked to the need to protect the stability of their family, which was simultaneously a source of support but also a structure whose stability relied heavily on women. Many interviewees were extremely grateful for the support they received from their adult children, husband, sisters or, for younger women, parents. However, they also insisted that they needed to be strong precisely so as to preserve the well-being of other family members and the stability of the family itself. Catholicism, permeating the life of many people in southern Italy, also played an important part in the practices of containment. Religion indeed emphasises the redeeming role of suffering and offers a positive vision of the moral strength which characterises the approach to suffering in southern Italy. This shows the fragile balances on which containment practices are based and their crucial role in limiting the impact of the disease when it occurs in a situation of fragility and difficulty (Greco, 2023).

If containment strategies were more marked in southern Italy, ways of redefining breast cancer diagnosis that challenge the idea that an enhanced self should emerge from cancer were also present in northern Italy, France and the UK. Many women in these contexts have expressed a pragmatic attitude towards the disease. Clothilde told me that, despite the initial shock of the diagnosis, she had always considered breast cancer an event that can occur in a woman's life: ‘I never thought “why me?” It's a question I've never asked myself. It's one woman out of nine, it can be you, it can be me or your sister. Or it's me today and you tomorrow. We don't know anything, I never asked myself the question in these terms.’ This way of thinking about cancer was common among the women whom I interviewed, and it was not a way of trivialising the disease and the difficulties it causes but an attempt to reject the singularity of the diagnosis by emphasising how widespread breast cancer is.

As we have seen, some patients expressed their disappointment at the lack of information on the possibility of relapse. Daisy, who, as we saw in the previous section, was given the impression that she was cured, said that she would have liked to know ‘that there was more a chance that it was gonna come back’ and that after the diagnosis of metastatic breast cancer she had to adjust to a new mindset:

the first time I was looking at a cure, it's different how you approach [metastatic breast cancer], I still try to look at it [the fact that the disease is manageable] as being a positive thing, but sometimes is more difficult because I know this [the treatment] is not gonna cure it.

Like Daisy, many women with metastatic cancer tried to have a pragmatic and realistic approach to their situation. As I will discuss in Chapter 5, they were aware of the diagnosis, they knew that the effects of the disease were irreversible and that they needed to take into account the terminal nature of metastatic breast cancer when planning the next steps for them and the people close to them. But this important work was often conducted outside of the main cultural and social script available for women with breast cancer, which is still largely based on the idea of survivorship.

The women whom I met recognised that breast cancer is a life-altering experience, but they rejected its optimistic image and refused to consider it an opportunity for improvement. They were trying to insert their diagnosis into their lives, and they were aware that its presence was indelible and were honest about the fact that their post-diagnosis life did not improve. Although varied, and influenced by cultural and social contexts, the strategies that the women displayed show the limit of the optimistic cancer rhetoric, which is strongly individualistic and rooted in the neoliberal ideology of turning adversities into opportunities. Patients often felt that viewing illness as a transformative event with profound meanings did not align with their personal experiences. The rhetoric of moral growth discussed here may not provide a helpful framework for interpreting their illness. As a result, many patients are moving away from the optimistic perspective and instead seeking practical strategies to manage and cope with their illness. In doing so, they are disarticulating the social script of the disease and producing biographical assemblages around ideas and experiences that include breast cancer as a negative event from which it is not always possible to gain anything.

Conclusion

When David Jay started shooting the SCAR project in 2005 – also to criticise the pink ribbon discourse – images of the mastectomised body were hardly part of the public discourse. Mastectomised bodies are still far from being normalised (as I discuss in Chapter 4), but photographic representations have risen in number. Similarly, when I started working on breast cancer in 2011, the pink ribbon discourse was stronger than it is now. Activist and academic criticism of the discourse have had an impact on some aspects of the pink ribbon, redefining the cultural-political assemblage of breast cancer. In the associative contexts I have studied, the colour pink was often used because that colour is now strongly associated with breast cancer, but it did not necessarily indicate adherence to a glamorous and highly feminine vision of the disease. However, other social scripts are gradually spreading: cancer is increasingly presented as an opportunity for growth and a ‘teaching moment’ (Bell, 2012). The idea that cancer should produce positive changes has tangible effects on patients’ lives, with some expecting changes and improvements that might not occur. This vision of the disease as a moment of growth and progress can be linked to a presentation of breast cancer as an individual problem that can be solved with personalised therapies (as we will see in Chapter 3) or with lifestyle changes to prevent the return of the disease.

Patients’ groups and associations can have different aims. I mostly met smaller groups for whom fundraising and campaigns, if part of their activity, were not professionalised or on a large scale, and therefore some aspects of the pink ribbon discourse were not particularly relevant. Some groups were openly critical of the pink ribbon and of other aspects of the public discourse. Such groups often aimed to help patients to confront the experience of breast cancer and to offer informal support, activities that often feed into the assemblage processes that women put together.

Initiatives organised by medical institutions and charities are also considered sources of help. Still, they often refer to models of patienthood that can continue to emphasise optimism and self-reliance, if not self-improvement. Crucially, while screening programmes are based on regular contact with the institutions, some post-diagnosis approaches can encourage relying less on medical institutions’ support. Patients with early-stage breast cancer are often encouraged to self-manage their disease, and some patients whom I met reported that the emphasis on being able to leave cancer behind decreased the amount of information received about the risk of relapse and metastasis. As we will see in the next chapter, the introduction of new treatments is changing the organisation of individual institutions and increasingly contributing to the presentation of breast cancer as an individual problem with individual medical solutions.

Notes

1 The well-known history of the pink ribbon is that it was initially created as a peach-coloured ribbon by Charlotte Haley in the early 1990s for a more grassroots campaign aimed at the National Cancer Institute. When Haley refused Self Magazine's proposal to make the ribbon part of a national-scale campaign, the magazine changed the colour to pink and partnered with Estée Lauder (Selleck, 2010).
2 The association gives the following definition of ‘pinkwasher’ on its website: ‘A company or organization that claims to care about breast cancer by promoting a pink ribbon product, but at the same time produces, manufactures and/or sells products that are linked to the disease’ (www.bcaction.org/about-think-before-you-pink/ [accessed 8 August 2024]).
4 It is also worth noting that the history of cancer campaigns in the UK shows a delayed start when compared to the US, as in the 1950s there were doubts about the impact of ‘educating’ the general population about cancer, and the orientation was towards local, rather than national, campaigns (Toon, 2007).
5 Hamarat (2020), focusing on two associations in Belgium, also shows the tension between the experiences of individual patients that do not match hegemonic discourses about breast cancer and associations that tend to produce a collective discourse reconciled with the dominant one – see Nielsen (2019) for some similar insights on North America.
6 It is important to note that in France I conducted my fieldwork in the area of Paris, which, as a capital city, was more likely to have a wider range of associations.
7 There are many examples of articles in other British, Italian and French newspapers presenting cancer as an opportunity to appreciate life more. However, some exceptions stand out, such as the interview with the Irish writer Colm Tóibín published in the Italian newspaper La Repubblica, the title of which states that, according to the writer, ‘cancer is not a life teacher’ (Guerrera, 2019).
8 In Chapter 4, we will see how this also applies to the body and how breast reconstruction is presented as an opportunity to have a ‘better’ breast.
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Assemblages of cancer

Experiences and contexts of breast cancer in the UK, France and Italy

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