Illness Experiences,Collective Decisions,and the Therapeutic Encounter in Indian Oncology

Some Logics of Biomedicine and Potential Cultural Disjunctions

The relatively recent surge in biomedicine, and the biomedical model, in many (urbanized) areas of India, has brought new complexities to medical encounters (Broom et al., 2009; Nisula, 2006). While traditional healthcare practices (e.g., Alavi, 2005, 2008; Badami, 2010; Khan, 2006; Naraindas, 2006) offered differentiated approaches to disease, biomedicine brought with it a series of comparatively rigid assumptions about the role of the person/patient (Gordon, 1988; Hansen, 1997; Nisula, 2006), many of which implicitly or explicitly contain, perpetuate, or even enforce notions of Westernized individualism (e.g., “patient autonomy,” “individual patient choice”). One such idea—full therapeutic disclosure of diagnosis and prognosis to individual patients—espouses an expectation that individual patients make informed decisions about their care and treatment (Blackhall, Murphy, Frank, Michel, & Azen, 1995; Kazdaglis et al., 2010). This view is steeped in the notion of the therapeutic encounter as facilitating truth telling and of medical disclosure as morally right (Crow, Matheson, & Steed, 2000; Kuczewski & McCruden, 2001). Such ideas, regardless of their value in other contexts, as we shall see below, are often challenged by cultural sensibilities in the Indian context (Naraindas, 2006; Sujatha, 2007).

These sensibilities are highlighted in previous work that shows the majority of Indian cancer patients treated at biomedical cancer facilitates are unaware of the “true nature” of their cancer diagnosis from a clinical perspective (Chittem, Norman, & Harris, 2012). Such findings reflect the importance of considering the interplay of cultural dynamics and disclosure within the medical encounter (Gongal, Vaidya, Jha, Raijbhandary, & Watson, 2006; Muller & Desmond, 1992; Tse, Chong, & Fok, 2003). For instance, at the center of Western oncological care—in all its forms, variations, and manifestations—is the individual/person with cancer, who must consider their options under the guidance of their physician (De Raeve, 1997; Gordon, 1988; Proulx & Jacelon, 2004). Subsequent therapeutic encounters are thus largely based on an assumption of individual choice matched by the biomedical ethic of full disclosure and informed consent. As we show below, this presents considerable challenges to clinicians and patients in contexts where other logics underpin everyday practice (Chittem & Butow, 2015; see also Blackhall et al., 1995).

Interweaving with issues of disclosure is the collective management of illness (Broom & Doron, 2013). It is common in India for key decisions about treatment to be made by the whole family, sometimes without the presence of the person being treated (Broom & Doron, 2013). This raises important issues around medical power, consent for treatment, the validity of the family as a proxy decision maker, and a range of other complex interpersonal dynamics (Blackhall et al., 1995; Butow et al., 2013; Goss et al., 2014). This emphasis on collective engagement in illness and care, rather than managing a “diseased individual” (Bode, 2006), reflects a collectivist sensibility (Kapoor, Hughes, Baldwin, & Blue, 2003; see also Newton, 1982) that has received little or no attention in the context of cancer. Here, we are thus interested in exploring the implications of care as shared across individuals, family members, and even community members.

We emphasize that the centrality of the collective within therapeutic decision making is not restricted to India (cf. Beyene, 1992; Crow et al., 2000; Kaufert & Lavallee, 1999), and this dynamic has also been observed in other contexts where there is an active withholding of diagnostic information from the patient (Blackhall et al., 1995; Butow et al., 2012). Such a strategy may be perceived to shift some of the burden of concern from the individual patient to members of the family and/or community (Beyene, 1992; Blackhall et al., 1995). We also note that in Western contexts, decisions about treatment are rarely made solely by the individual patient but rather within the context of relationships and family (Broom & Doron, 2013). Thus, the idea that the “locus of control” exists solely with the individual is problematic, and is perhaps more adequately articulated as a spectrum of relationality whereby Indian sensibilities lean toward greater engagement with the family within illness journeys and in clinical encounters (Badami, 2010; Broom & Doron, 2013).

Dispersed Authority and Biographical Complexity

The centrality of the individual within Western societies was given considerable emphasis in the late 20th- and now 21st-century sociological literature (Bauman, 2001; Beck & Beck-Gernsheim, 2002; Giddens, 1991), while the collectivist/individualist dynamic has also received considerable analysis in the psychological literature (e.g., Oyserman, Coon, & Kemmelmeier, 2002; Triandis, 1995). We wish to avoid overemphasizing the either/or status of a community or culture, as there is potential for overly reductive analyses of “traditional cultures” (i.e., the reification of an east/west collectivism/individualism binary). However, it is also clear, as will become evident in the results below, that important dynamics are playing out within therapeutic environments which complicate the notion of the patient as being wholly separate from the family unit/collective. The biomedical encounter is driven by a logic of the clinician as the objective, scientific authority for the individual patient, who is the “receptor” of expertise (Gordon, 1988; Jimenez, 2004). This individual is expected to make many scientifically informed choices about how to combat his or her illness. In contrast, as we illustrate below, cultural practices may encourage a more dispersed authority (Broom & Doron, 2013), with the locus of control—perhaps subtly or explicitly—moving away from the person who is ill. In such contexts, the agency of the informed patient becomes decentered, moving across actors and sources of knowledge and authority (Badami, 2010). This raises questions such as where the power lies within the therapeutic context, how is it retained, and how cultural practices might be complicit or important for such dynamics (Goss et al., 2014; Kishore et al., 2008). Where power lies in the therapeutic encounter has profound implications not only for people’s illness experiences but also for the enactment of medical authority and treatment trajectories (Ram, 2010). Dynamics of deference, resistance, shared decision making, consent, and so forth are all shaped by the meeting point of interpersonal, professional-lay, and cultural dynamics.

A final layer of complexity is that “culture” is embedded in biographical complexity, with the dynamics of caste, class, gender, religion, and so forth shaping illness and care experiences (Khan, 2006; Loblay, 2010; Ram, 2010). Illness experiences thus vary according to the particular locality of a person within this matrix. One consistent biographical consideration that shapes issues of power, choice, and the locus of control is the patriarchal structure (see Broom & Doron, 2013; Doron & Broom, 2011) that has the potential to deprioritize care for women in India (Khan, 2006; Loblay, 2010; Ram, 2010), or indeed, limit women’s involvement in decisions about their care. This offers a gendered inflection of the aforementioned dynamic of collectivism. In this way, decisions about healthcare become relational, driven by role allocation within a family, mediated by concerns for other members of the family, and especially around responsibilities to others. While there have been a number of studies on the need for further understanding of cultural practices of decision making in healthcare (Butow et al., 2013; Epner & Baile, 2012), those focused on India are rare, and often emphasize political and historical developments rather than experiences within the clinical system (Alavi, 2005, 2008; Khan, 2006). This is perhaps not surprising, given both the complexity of these arrangements and the rapid pace of social change within India. Here, we present an initial snapshot of how some of these dynamics are playing out within one oncological care setting.

Analysis

The methodology for this project draws on the interpretive traditions within qualitative research. This involved taking an in-depth exploratory approach to data collection, aimed at documenting the subjective and complex experiences of the respondents. The aim was to achieve a detailed understanding of the varying positions adhered to and to locate these within a spectrum of broader underlying beliefs and/or agendas. Data analysis was based on four questions adapted from Charmaz’s (1990) approach: What is the basis of a particular experience, action, belief, relationship, or structure? What do these assume implicitly or explicitly about particular subjects and relationships? Of what larger process is this action/belief and so forth a part? What are the implications of such actions/beliefs for particular actors/institutional forms? The approach used was developmental, in that knowledge generated in the early interviews was challenged, compared with, and built on by later ones. Early analysis of interviews was carried out by all members of the team by reviewing, writing notes on, and discussing the content of interviews as they were transcribed. This approach provided an opportunity to establish initial themes and then search for deviant or negative cases, complicating our observations and retaining the complexity of the data. We approached the analysis by conducting an initial thematic analysis of every interview transcript. Once we had identified a theme, we would search through the interviews for other related comments, employing constant comparison to develop or complicate these themes further. This process helped ensure that events initially viewed as unrelated could be grouped together as their interconnectedness became apparent. Following team discussions in person and over email, a range of themes were identified as being more prevalent than others; the research presented here includes those themes. Within this process, we continually sought to retain the richness of the respondents’ experiences and ensure the rigor of the analysis through interrater checks, documenting atypical cases, conflicts, and contradictions within the data (Ezzy, 2002). The final step, involving all members of the research team, was to revisit the literature and seek out conceptual tools—in this case, research on the intersection of culture and biomedicine, disclosure, decision making and gender—that could be employed to make sense of the patterns that had emerged from the data (Ezzy, 2002).

The Cultural and Biographical Dynamics of Disclosure

In the interviews, a common point of discussion was how much was known on the part of the participants about their cancer and the awareness they had of their illness, disease status, and prognosis. Methodologically, this was a subtle discussion and indeed challenging as we needed to strike a careful balance between exploring the dynamics of disease awareness, without creating distress or the sense that the participants should “know more.” It was clear in the majority of participants’ accounts that levels of disclosure were limited or even absent. The dialogue within the interviews revealed the prominence of proxy decision making, often shaped by patriarchal and intergenerational influences. These accounts reflected male-dominated households and were demonstrative of a broader sense of intergenerational (male) responsibility for securing healthcare in kinship contexts. In the following excerpts, female participants note that although they are present during consultations with doctors, they are not the ones to speak to them:

Participant (P): Everything my son knows . . . He will ask the doctor and find out . . .

Interviewer (I): Don’t you ask the doctor for the information?

P: I will also be there but my son is the one who talks to the doctor . . . (female [F], 40–49, Rectal)

I: How have your health professionals approached issues of your survival chances, and prognosis . . .?

P: The doctor did not talk to me . . . he talks to my husband or son . . . the men will take care of these issues . . . he just examines me and gives me medicine or treatment . . . the doctor asks me about my condition . . .

I: Ok . . . do you ask your husband or son about their interaction with the doctor?

P: I didn’t ask . . . I don’t know . . . (F, 40–49, Lung)

They didn’t tell me anything they just said that my sugar levels are high . . . they told my son that I got cancer. Next day my husband saw the report and told me about the diagnosis. (F, 40–49, Breast)

That the women are present but do not speak suggests a gendered hierarchy within the family, which is reinforced with comments about women being fearful of the potential outcomes full disclosure would reveal:

He [doctor] was like, “When we say surgery generally woman are worried and tensed" . . . They didn’t tell me initially . . . Jan . . . Feb . . . April my son told me . . . anyways what we can do? . . . just go ahead with courage . . . taking treatment . . . (F, 50–59, Breast)

He [doctor] told not to worry. And then he later told my husband it seems . . . I mean he didn’t tell me . . . (F, 40–49, Lung)

We note the risk of an oversimplified analysis of the above data by reading these accounts as largely if not exclusively about gendered dynamics, particularly with comments such as, “The men will take care of these issues.” Yet there are additional layers of biographical inflection here. It was clear, for example, that the men with cancer who were interviewed also experience proxy decision making, talking about themselves as “almost being infants” in terms of what they were “allowed to do.” Furthermore, one male participant revealed that information about his treatment was also mediated by his son, and for similar reasons (such as the potential for fear) as the women:

I get all the information through my son . . . and even they don’t tell me anything because they think I will be scared or worried . . . they talk among themselves . . . if it is necessary they will tell me . . . (male [M], 60–69, Lung)

Thus, we suggest that what is revealed here is more an intersection of gender, generational responsibility, and collective burden. Disclosure within the therapeutic encounter (i.e., doctor-to-patient) was low for the majority of those interviewed, with very few provided with detailed information from their doctor about their disease, specific diagnosis, or survival chances. Virtually, all eventually received some information through their family, although some received very little. In fact, a barrier to recruitment of a broader sample for this study was that a significant minority did not realize they had cancer, despite the diagnosis being clear in the medical record and from the doctors’ perspective.

These dynamics sit in stark contrast to expectations in biomedical clinics in most OECD countries, where full disclosure of the cancer diagnosis is expected to be given to patients for them to make informed decisions about treatment (Lupton, 2003). This expectation, of course, is premised on the culturally located assumption that the individual patient and the treating doctor should be at the center of therapeutic decisions, which are often seen to be primarily about the individual’s health, preferences, and survival chances. A lack of full disclosure would raise concerns about the ability of the patient to make important decisions and the doctor’s professional values in terms of ensuring that they inform the patients about the options available. Yet, in this context, non- or limited disclosure was normalized, with treatment not focused on the doctor/patient dyad; rather, decisions about treatment and responses to illness were dispersed, with implications for the patient, families, and clinicians.

Cancer as a Collective Project: The Value of Shared Responsibility

The notion of collective versus individualized societies has been regularly discussed within the social sciences (e.g., Bauman, 2001; Beck & Beck-Gernsheim, 2002; Beck, Giddens, & Lash, 1994; Panda & Gupta, 2004; see also Ortner, 1995), and while a useful point of departure, as mentioned above, it can risk a binary representation (i.e., collectivist/individualistic) or a culturally reductive stance—something we seek to avoid here. Given the differentiation between families and communities, it may be more meaningful to speak of a spectrum of positions—from a focus on the needs of the individual versus an emphasis on the collective. In that regard, we seek to provide an analysis of particular sensibilities and their implications—positive, negative, and otherwise. Here, we asked the participants to describe their support from family and friends, as well as their experience of this:

I: What forms of support have you received from family, friends’ colleagues etc.?

P: I am alive because of them . . . I owe my survival to them because they took good care . . . without their care and support I would not have survived . . . all my daughters took good care . . . they get everything to my bed . . . they don’t allow me to work and take strain . . . that is a plus point to me . . . their care is a plus point to me . . . that’s it . . . (F, 60–69, Carcinoid)

My family support? Greatest support . . . they are treating me like I’m made out of glass . . . my wife and especially my daughter . . . my daughter stays here in Hyderabad and she is giving me a lot of support . . . She is treating me like a baby . . . she is not giving me any strain . . . whenever I feel low or emotionally down she is there and she listens to whatever I say . . . everyone is patient with me . . . (M, 70–79, Non-Small Cell Lung Cancer)

For almost all of our participants, their family shared the pressures of coping with illness. Participants spoke with a deep appreciation of the support they received from family members; from food to medical information, sharing household duties and decisions about care. There is a notable level of solidarity, and perhaps even protectiveness of family members, apparent in comments such as, “I don’t have any problem with my family” and “I owe my survival to them.” Such excerpts suggest that the care given by others is reciprocated, and understandings of health and well-being are not seen from an individualized perspective. They also provide a sense of managing illness as a collective project, where each member of the family takes on particular roles and contributes to the overall well-being of the person who is ill. Yet it is important not to assume that this is vastly different from other spheres of everyday life; indeed, we suggest that these responses to illness are likely to be embedded in people’s daily practices in the Indian and Hyderabadi context. What is interesting here is the extent to which these cultural values persist through the process of engagement with biomedical cancer care and the implications therein. For those who are unwell, this collective project was talked about in several interviews as allowing them to concentrate on more “positive thoughts” and the practical side of day-to-day living—as one person said “taking treatment”—rather than having to manage emotions.

Collective Troubles and Responsibilities

It was interesting to note that the emphasis on collective responsibility was also subtly inflected in the survivorship objectives of those interviewed, illustrating a complicated relationship between care and burden; that is, several of those interviewed considered themselves a significant burden on their family, preventing family from working or from participation in everyday life. Furthermore, the often unexpected shift in the role as a primary bread winner to a patient in need of care is accentuated by one’s perceived social responsibility, thus creating a sense of urgency to fulfill their “duties” vis-à-vis survive the disease. Thus, there are affirming and strengthening aspects of collectivity, but this also meant, in the context of the individual’s view of cancer survivorship, that the focus needed to be placed on meeting family responsibilities: ¹

I feel that I am troubling my family . . . because they don’t get holidays or leave at work easily . . . they have to apply for two days leave to take me to the hospital . . . one is for the blood test the day before chemo and other is the chemo day . . . so in one month he is spending eight days for my treatment . . . he is spending his time for me . . . it is difficult for him because he’s a very busy officer . . . but he is attending me since three years . . . that is my main problem because I am giving them all the trouble . . . but I am giving them unnecessary trouble to my family members as a patient . . . so if I die they will be free. (F, 70–79, Ovarian)

. . . if I didn’t have any responsibilities, then I wouldn’t be this afraid . . . but I had to take care of three kids . . . I only worry about my kids now . . . both my daughters are now studying degree and my son is studying polytechnic and I have to take care of them . . . they call me every half an hour to find out my about my health . . . and they are worried about my health . . . they cry . . . I am worried only about my kids . . . (F, 40–49, Breast)

We have the fear at the back of our mind that our life is going to end soon and there is not much time left. I don’t know when life stops so immediately we rush up to fulfil all the social responsibilities . . . Like children’s marriage . . . my only goal left is my children marriage. They are settled and the only thing left is their marriage. Next I have to take care of my wife’s social security, which means if I am gone then what is her financial status? So I have to care of those aspects as well. (M, 50–59, Lung)

It was also interesting to note in the interviews that the character of an individual’s relationships affected the role and input of family, although this was observed in a minority of cases:

Ours is love marriage and we don’t have any relatives. So I have to manage everything myself. I have to take care of household chores and should take care of myself when I am under treatment . . . my relatives are not talking to me . . . (F, 40–49, Breast)

While it is clear that the desire to meet kinship responsibilities moves across cultures and socioeconomic contexts, there are also specificities to this dynamic here. The character of the relationship (e.g., the love vs. arranged marriage) was in some cases discussed as affecting obligations within the context of care and collective burden, with varied individual biographies and circumstances illustrating the importance of retaining recognition of the diversity of illness experiences within this cultural context.

The Locus of Control and Deindividualization in the Biomedical Clinic

As a collective project, then, managing illness becomes a lot more complicated than an individual simply following a set communicated medical plan. In addition to the fact that it was common for participants to be unaware of the specificities of their cancer and treatment, care plans were subject to considerable family-driven negotiation, decentering the locus of control away from the patient and toward members of the individual’s family. In particular, some participants spoke of a lack of control over their movements, being treated “like a baby,” and gave descriptions of decisions they had made about treatment, which were then changed after discussions with family members:

I: . . . tell me more about their [family] support?

P: They treat me like a child . . . they take good care and sometimes I feel that they are restricting my activities and they are taking away my freedom . . . but they are concerned about my health . . . (M, 60–69, Stomach)

P: I am just a baby . . . I will follow them [family members] everywhere without asking questions . . . I am a regular visitor of this hospital but I don’t know anything about it . . . I don’t know where the doctor’s rooms are, where the wards are and don’t know where the stairs are . . . I try to explore and they won’t allow me . . . they just make me sit and I will follow them like a goat wherever they take me . . . that is my life . . . worse than a baby’s life . . . (Laughs) . . .

[Caregiver (CG) comes into the room and interrupts the interview]

CG: My father doesn’t know that he had cancer . . . we did not tell him . . . he came to know it very recently . . . that is why he is not able to explain . . .

P: Yes . . . I took the treatments and I didn’t know what the condition was . . . I did not know it was cancer . . .

I: That is ok . . . this research is [about] the experiences of patients . . .

CG: I just told him that there is small lump and it will be cured with the treatment . . . (M, 60–69, Lung)

He does not allow me to work now. I sit silent. He does all the work. Even my diet . . . the food I take and which I am not supposed to eat he will take care of all that details. He cooks only what I am supposed to eat. [. . .] Before this cancer I used to eat whatever food was there . . . the food left over the previous night or anything . . . now he doesn’t allow me to eat that way . . . he cooks fresh food in the afternoon and then goes back to work and then cooks again at night. (F, 50–59, Breast)

I went to the doctor for check-up and they found that it was cancer . . . they told my son that surgery has to be done and that bag should be attached to my abdomen . . . they [family] didn’t tell me anything . . . on the fourth day after my operation I saw this bag . . . I was worried that I am not excreting [defecating] for four days and then I saw the [colostomy] bag . . . I felt very sad and I didn’t know why it happened to me . . . I asked my son why they attached the bag . . . he explained me about the operation and why the bag was connected . . . he told me not to worry . . . Yes . . . my son didn’t tell me [about cancer] . . . he didn’t tell me because he thought I would be scared . . . he should have informed me but he felt guilty for not telling me . . . (M, 50–59, Colorectal)

While noting the importance of not imposing “western” ideas of autonomy on our interlocutors, these experiences and many others recounted by the participants suggest that in devolving roles and decisions within families, there is a risk that those who are unwell may give up some (or in some cases all) of their own agency in return. Occasionally, this may result in resistance from, or even a tussle between, the individual and family members for control over the therapeutic process. For some participants, the way they were treated by their family made them feel deeply cared for (e.g., “made out of glass,” “won’t allow me to work,” “owe them my survival”) but others had mixed responses, including experiencing a lack of agency in their everyday affairs (e.g., “taking away my freedom”). As well, illustrated in the last excerpt above, family members were at times talked about as coming to regret not informing the participant and clearly occupied a challenging role in terms of taking responsibility when making such choices. While it is not uncommon for decisions about treatment to be negotiated with family across any context (OECD or non-OECD; for example, Broom & Doron, 2013), these excerpts suggest a much stronger level of involvement from family members, who are often in a position to actually make choices about treatment, given the fact that patients are commonly unaware of the specifics of their illness. We see here, then, that while such a process is more common in India, it is rarely taken on without question; as one participant says, “He should have informed me.”

Medical Power and Authority

A related dynamic evident in the interviews was the perceived authority and omnipotence of the treating doctor and trust in biomedicine. This dynamic of unquestionable authority within care was inseparable from, and likely perpetuated by, the aforementioned processes around disclosure and the locus of control within therapeutic encounters. Doctors were regularly described as “like gods,” and interviewees spoke of the need to follow what they are told to do by doctors “without question.” This cannot be separated from the aforementioned dynamics around collectivism, given the assemblages of power and authority in the context of treatment and care (Fochsen, Deshpande, & Thorson, 2006; Rathor et al., 2007). The excerpts below illustrate a complex combination of the vulnerability felt by these participants—which would not be unusual in any other oncological setting (Hansen, 1997; Surbone, 2006)—as well as a paternalistic embrace of the authority of both doctors and the biomedical institution (Fochsen et al., 2006). This provides an interesting additional layer to the process of negotiation, care, and the illness experience:

I: Ok . . . Could you tell me about the different forms of professional care you have received? Tell me about doctor’s care first . . .

P: This doctor is God . . . he is giving courage to the patients . . . his words are enough . . . they give me courage to deal with this disease . . . the sisters [nurses] are also very good . . . they are well trained and good. (F, 40–49, Cervical)

Right from the beginning, I am following every instruction and every recommendation of the doctor . . . this is good treatment and I believe that my cancer will be completely cured with this treatment . . . because I am following every instruction of the doctor and my cancer will be cured and will not recur again. (M, 50–59, Colorectal)

The information they [clinicians] give us gives us strength and hope . . . They tell everything for our own good . . . Many believe that doctors are equal to God . . . I too believe the same . . . I trust them and that is the reason I am coming all the way from my place to take this treatment . . . (F, 40–49, Breast)

Regular comments during the interviews captured the view of doctors as having the power of being able to deliver either health or death. Concurrently, it was also common for participants to suggest that their own position was one of inferiority—“Only doctors have that power”—and argue that deference was an important component of therapeutic success (cf. Fochsen et al., 2006). It is worth considering that family members often took on the role of proactively negotiating with the doctors, and that such forms of patient–doctor deference may actually shape a common theme suggesting the medical authority of doctors. As one noted, “We should take the treatment compulsory because we will not face any problem with cancer if we take treatment.” So while notions of care and talk and understandings of cancer are closely tied to cultural norms of collectivism and kinship responsibility, for many participants this intersected with an almost mystical understanding of biomedicine and the authority of medical professionals.

Collective Burden, Social Silences

A final theme evident in the interviews was that fear of cancer, and low levels of community awareness of the disease meant that many of the silences of the therapeutic encounter (i.e., not being told of the diagnosis or prognosis) were matched by social silences. Participants spoke regularly of the stigma associated with cancer and hiding their illness as a result. Forms of non-disclosure across families or between doctors and patients were thus carried through into community life. The interviews reflected a sense of a broader cultural aversion to cancer, borne of a lack of understanding about the disease and how it develops. Much of this centered on cancer as a “death sentence,” ² conjuring up fear and silence in the community:

. . . the doctor here, and my brother-in-law . . . and my family and my family doctor . . . only these people know that I have cancer . . . I don’t want anyone else to know about my disease and I told my family not to reveal it to other family members or relatives . . . No one outside my family knows that I have cancer . . . my neighbors or relatives and friends don’t know that I have cancer . . . I don’t want people to know that I died with cancer . . . (M, 70–79, Non-Small Cell Lung)

I didn’t disclose this [cancer] to anyone . . . very few people know about my disease . . . there is a saying, “You hide your money but you don’t hide your disease” . . . and in my opinion cancer is not an infectious or contagious disease . . . and people don’t know about this disease . . . even if they know it is not infectious they treat me differently . . . there will be gossips regarding my disease . . . so I didn’t reveal my diagnosis to anyone except very few people who are very close to me . . . (M, 40–49, Rectal)

I am not a coward . . . I am not scared . . . I didn’t reveal it to any of my family or relatives . . . only very few of them know about this disease . . . (M, 50–59, Rectal)

I: Do you have any idea about social support or support groups? Did you meet anyone . . .?

P: I don’t like to share anything about my “C” with others . . . I have many books regarding that but I don’t even like to read them . . . I took books from here but I never read them and I don’t want to know anything about it. (F, 40–49, Lung)

Participants here revealed a dynamic of stigma and even shame in relation to having a cancer diagnosis, resulting in another layer of silence around it. Cancer was described as something to be faced without “being a coward,” but to “not talk about with people.” For many, keeping the specifics of the illness unknown was viewed as allowing greater freedom and dignity—with concerns that it might be infectious common, as well as the worry that people will “gossip” and “treat me differently.” Interestingly, while families frequently decided whether and how many patients were told about their cancer, when it came to disclosure to the wider community or social networks, patients were primary decision makers. It also seems likely that low survival rates as compared with OECD countries (Mallath et al., 2014) produce and enhance stigma and enforce silences about the disease. This in turn makes sense of the prevalence of non-disclosure, as one participant put it, “They didn’t tell me because they thought I will be tensed or worried about it . . . I didn’t ask him and he didn’t tell me . . . my children have the information but not me . . . .” In addition, it is notable that the silences around cancer are not only supported by family and clinicians but also by the participants themselves, and our data suggest that this is especially so for men, who continue the silence by not informing others. The fact that these comments come predominantly from men also suggests some of the ways in which they take control against the collective burden, actively avoiding communications with family that may be difficult, especially those that may invoke fear, or which might potentially affect their masculine identity if they have to negotiate their situation with others.