An Elephant in the Pink Room:

The Extraordinary Challenges of Living with Metastatic Breast Cancer

Every October, those living or otherwise concerned with Metastatic Breast Cancer (MBC) find themselves in need of pointing out an elephant in the metaphoric pink room, as they deal with challenges well above and beyond the disease.  MBC patients have to live with an ongoing struggle not only to beat cancer and its extraordinary burdens, but also to combat a significant social challenge that tends to rob them of their voice and at times even of their basic entitlement to choosing how to react to their suffering.

Approximately 155,000 Americans are currently living with MBC.  MBC accounts for about 40,000 deaths annually in the U.S, the absolute majority of them women.   Between 20% to 30% of people initially diagnosed with early stage breast cancer will develop MBC.  The 5-year survival rate, which is 88% for early breast cancer, shrinks to about 15% for metastasized breast cancer.  In stark contrast to this fact; however, only 2% to 5% of research dollars for all cancers goes to metastatic cancer research (European CanCer Organization, 2010), reflecting both a lack of great interest and motivation among researchers to engage in metastatic cancer, and a lower priority for  funders. There is, in other words, a gap – a big, yet hidden gap – within the world of breast cancer, and many MBC patients find themselves closed-in and isolated by that gap.

In a regular literature search for MBC and its impact on women’s lives, the top results typically concern woman’s familial relations and communal obligations.  Phrases like “couples’ adjustment to metastatic breast cancer”, or “women with metastasized breast cancer and their family” are bread and butter of the field.  In doing so, the woman is subtly –but surely- replaced by her role as a placeholder for certain social, familial, sexual and reproductive functions, and her actions are examined and evaluated in terms of her responsibility towards others who can be affected by her cancer, such as her children, husband, family members, her immediate community, or even the society at large.  Strewn across broader scientific research literature, quotes such as “breast cancer remains a significant scientific, clinical and societal challenge” (Eccles et al 2013) help constitute a cumulative language that unconsciously (and often unintentionally) erases the individual woman and replaces the living person by the abstract disease as a subject of scientific exploration, or a source of societal concern.

Bringing the focus on the actual individual and her lived experience and needs may sound like a basic, commonsensical idea, but in fact, it is rare and badly needed.  Women’s bodies have traditionally been treated as society-owned properties, but in the context of crises such as breast cancer, that old tendency becomes more exaggerated.  A woman’s decision on cancer treatment is almost explicitly expected to be taken in line with the interests of her family and the broader society, rather than her own body and her individual wishes (Hagedoom, 2008; Hoellen et al., 2019; Northouse et al., 1995, 2002).

Aside from, and in addition to, the invisible gaps and implicit biases in scientific research and perception and the social expectations of women with MBC, the general sense of fear associated with MBC is quite high within the broader society, and it tends to create an inevitable space of stigmatization and marginalization.  As both large quantitative surveys and in-depth qualitative studies have found, over a third (38%) of women with MBC are fearful of talking openly about their illness, and nearly half (48% to 52%) feel that their friends and family are uneasy talking about it (e.g. Bergqvist, 2019; Mayer, 2010; Mosher et al., 2016).  To compare, an earlier comparative study of openness to talk among patients with cancer and serious illnesses shows that while about 58% of patients with breast cancer agreed or strongly agreed with the statement: “I talk as little as possible about my illness because I don’t want to make my family uneasy,” the figure was only 32% for patients with Hodgkin’s disease, and as low as 45% for patients with head and neck cancer (Mesters et al., 1997)

As a result of the array of facts surrounding life with MBC — such as the severity of the disease, its burden and its prognosis, and the deeply socially bounded ways in which the illness is constructed, narrated and approached — the experience of women living with MBC becomes fundamentally marked by a tension between hyper-awareness of the poor prognosis and MBC’s heavy existential threat on the one hand, and an imposing social discourse of hope, heroism and survivorship in Oncology on the other.

Placed in the challenging position between the two poles, MBC patients can experience the social pressure for survival as an implicit (and occasionally quite explicit) burden, leading to an increasing sense of resentment against the socially prevalent pressure for identifying with hope and survivorship.  This sense of resentment can be easily detected in many MBC movements and slogans urging to move beyond, if not against, those aspects of the ‘pink’ trend that tend to downplay or ignore the tough human realities of living with MBC.

“The pink ribbon is a ribbon of hope,” one patient explains, “I think what is troubling is that we feel forgotten and like we represent the lack of hope. When we are remembered, we are recognized as ‘losing the battle’. We are what the pink crowd wants to forget because we are the painful reminders of what can happen.”  (Quoted in Mayer, 2010, p. 196).

As noted by many researchers, in both popular and medical discourse, the experience of breast cancer is presented as one of triumphant survival.  American oncology is infused with a particular discourse on hope, which, as demonstrated by Harvard medical anthropologist Mary-Jo DelVecchio Good, incorporates both the popular and the professional dimensions of our contemporary culture and understanding of biomedicine. The core emphasis of this discourse lies squarely on optimism and individual will power, a logic based on the implicit premise that “if one has enough hope, one may will a change in the course of disease in the body” (DelVecchio Good, 1990, p. 61).

This silent yet amazingly powerful and encompassing discourse of hope and struggle as an ethical and social responsibility for women has effectively silenced women with MBC as their experience is both much harsher and psychologically different from experiences of women with early breast cancer.  As researchers Bell and Ristovski-Slijepcevic (2011) found out in their work with MBC patients, these implicit social expectations tend to create “an irresolvable gap between discourse and experience” that not only increases the suffering of women raising children, but also generates “an internal hierarchy of suffering among women with cancer metastases,” so that some become more “eligible” to claim suffering, depending on the degree to which they occupy traditional positions such as “motherhood” or not: the more they conform to those traditional roles, the more eligible to claim suffering (Bell and Ristovski-Slijepcevic, 2011, p. 629).

If you are thinking something seems deeply wrong with this picture, you are in good company.  And if you and I as mere observers can think of this “gap” as problematic and harsh, then let us think of actually living it and experiencing the internal cognitive and emotional dissonance it can cause, while trying to deal with an illness as grave as MBC.  The striking fact is that until 2009 MBC was rarely even mentioned during October, the month of Breast Cancer Awareness.  In our research, we have been told by MBC patients in so many words, that this absence is because they are associated with death and with ‘failure’ to fulfil the roles of heroic survivors as demanded of them by the society, and therefore feared and avoided.  As a result of all this, many MBC patients end up feeling left out, and therefore at times resentful of mainstream discourses on health and hope which, they feel, silences them and denies their actual lived experience.  Let there be no mistake; they, too, need hope in order to survive, but theirs has to be a new kind of hope, given the overwhelming cultural push for a very specific and narrowly defined notion of “hope” which has traditionally been magnified through mainstream events and discourses associated with Pink October.  It is hardly surprising then to learn that research has found a quest for raising public awareness of their predicament has been, and continues to be, on top of MBC patients’ collective agenda.

Above and beyond being victims of a fatal disease, MBC patients find themselves burdened by social expectations of how they should treat/protect their bodies in service of the family and the society.  This is a typically silent but also silently infuriating burden that leads to an abundance of resentment (often unrecognized even by patients themselves), a deep need for a voice, and a desire for individual liberation from the tyranny of discourses of health, hope and heroism.  Voice, visibility, knowledge and power constitute basic unmet needs for many MBC patients.

The elephant represents many of the resentments mentioned here, ranging from invisibility against a larger, more visible and more “voiceful” breast cancer community, to being oppressed by explicit and implicit social and moral codes, to being ostracized as bearers of the face of death.

The perceived need for finding “a community of one’s own”, a place where one could feel free to voice their suffering and feel understood rather than avoided, considered morally weak or looked down upon, is strong among MBC patients.  This stems from the disturbing experiences of liminality, fear, stigmatization and marginalization directed at them, all in the context of dissonance between social narratives and their lived experience.  This is why three quarters of women (75%) suffering from MBC said they liked to “hear stories from other patients”; and 67% of them said they need “advice on how to talk to others about their MBC” (Mayer, 2010).  This October, let us not forget the challenges faced by MBC patients and the extraordinary burden that MBC exacts on their lives; and more importantly, let us try to become a voice for the MBC community by learning about the extraordinary challenges of living with metastatic breast cancer, and by making sure no elephants go unnoticed in the lives of our fellow human beings.

 


 

Sadeq Rahimi, MSc, PhD, Senior Social Scientist and Strategy Consultant at Insync. 

Sadeq Rahimi is senior social scientist and strategy consultant at Insync, and professor of medical anthropology affiliated with Social Medicine and Global Health at Harvard Medical School and Culture and Psychoanalysis Program at Boston Graduate School of Psychoanalysis.

 


References and Additional Reading

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