Prostate Cancer and Masculinity in Australian Society: A Case of Stolen Identity? ALEX BROOM School of Healthcare University of Leeds, United Kingdom
This article examines the relationship between cultural constructions of masculinity and men’s experiences of prostate cancer in Australian society. Drawing on the results of a qualitative study involving in-depth interviews with 33 men with prostate cancer, this article focuses on the difficulties posed by prostate cancer for these men’s gender identities. Findings illustrate how investigative, diagnostic, and treatment procedures pose significant difficulties for many men, especially in relation to their desires to perform idealised constructions of masculinity. Although a minority viewed the potential challenge posed to their masculinity as insignificant in the wider context of terminality and mortality, the majority considered these factors as fundamental in shaping their experience of disease and influential in making a treatment decision. It is argued that gaining a better understanding of the influence of cultural codes of masculinity on experiences of disease and treatment processes is essential for maximising the quality of care provided to men with prostate cancer. Keywords: masculinity, prostate cancer, Australian men, gender identities, qualitative study, treatment decisions
n writing about masculinity, social analyses have tended to focus on men’s communication and social relationships, with the impact of diagnostic, prognostic, and treatment procedures on experiences of masculinity often left underexamined (Kaplan & Marks, 1995; Kiss & Meryn, 2001; White, 2002). Despite a few recent studies (Gray, Fitch, Phillips, Labrecque & Fergus, 2000; Fergus, Gray & Fitch, 2000; Hines, 1999;
Correspondence concerning this article should be addressed to Alex Broom, Research Fellow, School of Healthcare Studies, University of Leeds, LS2 9UT United Kingdom. Electronic mail:[email protected]
ac.uk. International Journal of Men’s Health, Vol. 3, No. 2, Summer 2004, 73-91. © 2004 by the Men’s Studies Press, LLC. All rights reserved.
BROOM Oliffe, 2004), there are still significant gaps in our current knowledge regarding the intersections between medical technologies and procedures and cultural constructions of masculinity, particularly in the case of prostate cancer. Drawing on the data from 33 in-depth interviews with Australian men with prostate cancer, this paper begins to engage these issues by such questions as: • How do investigations, diagnostic techniques, treatment programs, and treatment side-effects intersect with gender identities and a desire to perform certain versions of masculinity? • What influence do such relationships have on men’s experiences of disease and decision-making processes? This paper provides insight into these questions, illustrating that, at least for the men in this study, masculinity prevails as a central concern within the treatment of prostate cancer, often superseding the threat of mortality and thus fundamentally shaping their treatment decisions. BACKGROUND: PROSTATE CANCER Approximately one in 10 Australian men are diagnosed with prostate cancer in their lifetime, and approximately one in 68 die of it (AIHW, 1999). Every year, around 10,000 Australian men are diagnosed, and more than 2,500 die of the disease (Frydenberg, 1998), making prostate cancer the second largest cause of male cancer deaths after lung cancer. Despite this, there is little agreement about effective treatment for localised prostate cancer (Garnick, 1993), and the causes of prostate cancer are unclear. Men are living longer, giving the cancer more time to spread beyond the prostate with potentially fatal consequences. Younger men are now developing prostate cancer, and many die of the disease and not with it (Frydenberg, 1998). Earlier onset combined with greater male life expectancy means those cancers have more than adequate time to spread and become life-threatening unless diagnosed and treated (PCFA, 2003a). Despite high rates of morbidity and mortality of prostate cancer in Australia, public awareness and support services lag behind those for comparable diseases such as breast cancer (PCFA, 2003b). Furthermore, there has been little qualitative research into men’s experiences of health and illness and, in particular, men’s experiences of prostatic disease and its implications for men’s gender identities. MEN’S HEALTH AND MASCULINITY The sociopolitical context of men’s health provides a useful platform for engaging in an analysis of men’s experiences of prostate cancer. Traditionally, research into “gender and health” has focused on women’s health (Arber, 1990), particularly in relation to disadvantage within healthcare (Cameron & Bernardes, 1998). Despite the now well-established trend toward seeking understanding of women’s experiences of health, this has not been matched by significant efforts to research men’s experiences of disadvantage in healthcare (Doyal, 2001; Riska, 2002; White, 2002). In saying this, the state of men’s health has received increasing attention from social commentators over the past decade and for good reason (Banks, 2001; Cameron & 74
PROSTATE CANCER AND MASCULINITY Bernardes, 1998; Courteney & Keeling, 2000; Griffiths, 1996; McLean, 1995; Riska, 2002; Tudiver & Talbot, 1999; Watson, 2000). We know that men have a significantly lower level of awareness of the specific risks to their health as compared with women (Court, 1995). As well as having a low awareness of health risks, men are resistant to seeking help for serious medical problems (Bradlow, Coulter, & Brooks, 1992; Cameron & Bernardes, 1998; Tudiver & Talbot, 1999; Walsh, 2000) and show considerably less interest than women in being informed about their health (Courtenay, 2000). Moreover, men seem less able to recognise physical and emotional distress, are less likely to seek help (Harrison, Maguire, & Pitceathly, 1995; Krizek, Roberts, Ragan, Ferrara, & Lord, 1999; Saunders, 2000; White, 2002), and are more likely than women to dismiss physical changes and/or problematic symptoms. Low levels of health awareness and resistance to seeking help are crucial for understanding concerning levels of morbidity and mortality for Australian men. Australian men have higher death rates than women for all major causes of death, and their use of health services is 40 percent lower than Australian women (MANNET, 2002; White, 2002). Furthermore, men are overrepresented relative to women with certain health problems (White, 2002, p. 269), such as higher rates of ischemic heart disease, suicide, lung cancer, and car accidents (Ots, 1993). Increasingly, social commentators are linking these patterns of behaviour, awareness and eventual health outcomes to understandings of masculinity (Courtenay, 2000; Moynihan, 1998; Reddin & Sonn, 2003; Saunders, 2000; White, 2002). But what exactly is masculinity? In this article, “gender,” as Butler (1990) argues, is viewed as a “repeated stylization of the body, a set of repeated acts within a highly rigid regulatory frame that congeal over time to produce the appearance of substance, of a natural sort of being” (p. 33). Moreover, masculinity and femininity, as Connell (1995) argues, are things that are “done” or “accomplished” in everyday life (p. 6). Of course the performative nature of masculinity and femininity does not prevent the dominance of particular versions. Despite their constructed and socially negotiated nature, there is, of course, general agreement about what are considered to be typically feminine or typically masculine characteristics (Connell, 1995; Courtenay, 2000; Gray et al., 2002; White, 2002). Good and Sherrod (2001) provide a good example, characterising masculine as the strong, silent type; toughness and violence; self-sufficiency; being a stud; no sissy stuff; being powerful and successful. Such hegemonic representations of masculinity become “harder” than others and act on people in very real and often problematic ways (Connell, 1995, 2000; Courtenay, 2000; Messner, 1997; White, 2002). In fact, much social commentary in the area of men’s health has centred on the role of dominant (or “hegemonic”) masculinities in men’s higher mortality, resistance to seeking help, and general health status (Cameron & Bernardes, 1998; Connell, 1995; Courtenay, 2000; Kaplan & Marks, 1995; Kiss & Meryn, 2001; White, 1997; 2002). Emerging literature on masculinity emphasises the negative consequences for males trying to live according to idealised gender roles that demand they exhibit characteristics like being tough, unemotional, aggressive, and independent (see Biddulph, 1995; Connell, 1995; Law, Campbell, & Dolan, 1999; White, 1997). 75
BROOM Research on men’s health and masculinity has largely focused on men’s reluctance to talk about their health, to becoming informed about health risks, and to seeking help if they experience health problems. As such, other than a few recent studies (Arrington, 2003; Bokhour, Clark, Inui, Silliman, & Talcott, 2001; Fergus et al., 2000), little has been written about how cultural codes of masculinity affect men’s experiences of biomedical technologies, procedures, and treatment sideeffects. Furthermore, research has focused on the impact of cultural constructs of masculinity pre-diagnosis, with men’s experiences peri and post treatment (or diagnosis) receiving little attention. If indeed masculinity restricts men from seeking help, what are the implications of such cultural codes once help has been sought? Other than a couple of recent studies (see Chapple & Ziebland, 2002; Gray et al., 2002), there is still little awareness of or research into the effects of prostate cancer treatments on masculinity. By contrast, the effect of surgical techniques (mastectomy versus lumpectomy) on femininity has been thoroughly investigated (e.g., Broom, 2001; Kiss & Meryn, 2001; Langellier & Sullivan, 1998). Furthermore, the dominant trend in the study of men’s health has been reliance on epidemiological data with a paucity of studies exploring men’s actual experiences of disease (Gray et al., 2002; Watson, 2000). This study begins to fill this void, qualitatively exploring a group of men’s experiences of being tested, investigated, and treated for prostate cancer. METHOD RECRUITMENT After reviewing the literature and obtaining ethics approval, meetings were arranged with local support group organisers to explain the study, and with their support, the author sent information letters to group members, asking them to participate in the study. Eventually, 25 men were recruited from three face-to-face support groups operating in Victoria, Australia. Overall, 37 percent (25/68) of those approached through the support groups agreed to take part after follow-up and reminder letters. The remaining eight responded to an article written about the current study in a local magazine, which requested that readers with prostate cancer interested in participating in the study contact the author. The relatively low response rate is perhaps indicative of wider issues addressed in the following discussion regarding masculine ideals and their relationship to the tendency of men not to want to discuss their health. In total, 33 men were recruited. Interviews continued until the sample included men with a range of prognoses, who had been through a range of treatments. THE INTERVIEWS All the men were interviewed in their own homes for between one and two hours. Although generally following the principles of in-depth interviewing outlined by such authors as Rice and Ezzy (1999) and Minichiello (1995), a flexible approach was taken, adapting, as seemed appropriate in each interview, to the particular respondent. Resistance to seeking help and advice, negative experiences of biomed76
PROSTATE CANCER AND MASCULINITY Table 1 Characteristics of the 33 Men Interviewed Age (years) Number of Respondents 40-50 4 51-60 11 61-70 14 71-85 4 Total 33 Ethnicity Anglo-Australian 25 Irish 2 British 2 Italian 2 Polish 1 New Zealander 1 Type of treatment (some more than one) No treatment 2 Watchful waiting 2 Radical prostatectomy 15 External beam radiation 10 Brachytherapy (seeds or HDR) 2 Hormone treatment 8 Cryosurgery 1
ical procedures, and the difficulties posed by treatment side-effects emerged as important themes in the interviews and are central to the following discussion. THE ANALYSIS The methodology for this project draws on the interpretive traditions within qualitative research (see Rubin & Rubin, 1995), seeking an in-depth understanding of the experiences of the respondents and, in particular, how they made sense of their disease experiences within the context of cultural understandings of masculinity. The project involved an in-depth exploratory approach to data collection, aimed at documenting the subjective and complex experiences of the respondents. It maintained a focus on unpacking the complex ways in which masculine ideals have affected the respondents’ lives, building theory from their narratives rather than imposing it on them (Charmaz, 1990; Strauss & Corbin, 1990). The process of analysis began during data collection. This provided an opportunity to establish initial themes (often referred to as “open coding”) and, importantly, then to look for deviant or negative cases, complicating initial observations and retaining the complexity of the data. The analysis began with systematically reading each transcript several times, writing notes, discussing ideas with colleagues and noting emerging patterns within the data collected. This process focused on retaining 77
BROOM the complexity of the respondents’ experiences, documenting atypical cases, and finding conflicts and contradictions within the data. Following this initial analysis, the notes were examined for themes that were emerging across the interviews. Within this process, once a theme was identified, the other interviews were searched for other related comments, employing “constant comparison” (Ezzy, 2002; p. 90) to further develop or complicate these themes. This process meant that events initially viewed as unrelated could be grouped together as their interconnectedness became apparent. The final step involved revisiting the literature, and seeking out conceptual tools that could be used to make sense of the patterns that had emerged from the data. RESULTS: MEN’S HEALTH AND MASCULINITY To unravel these men’s experiences of, for example, vulnerability in the clinic or resistance to a transrectal procedure, we must first consider wider sociocultural beliefs and processes about “men” that provide a platform for these experiences. The interviews provided considerable insight into men’s views of and approaches to health and illness and their relationship to idealised forms of masculinity. In particular, cultural stereotypes and educational processes (both formal and informal) were viewed as crucial in shaping men’s views of their health, their bodies, and especially their help-seeking. In the following excerpts, two respondents talk about “being men,” masculinity, and their relationship to health behaviour: Men don’t want to get their health checked. AB: Why do you think that is? I think it’s part of the male image thing, part of the cultural thing … that the male role was to be the strong healthy person who was the breadwinner, all of that sort of stuff. That’s gradually changing whereas the women were meant to be the ones who got ill and had all these problems. So there’s that cultural thing. I think it’s changing, but there’s also … well, men aren’t supposed to get ill. It’s a macho thing. Women have been educated to go and get checked up routinely, men haven’t been. Every girl is now educated that you go and get a pap smear. That means every two years a female goes to see a doctor, and as soon as they walk in the door, if they are a good doctor, they are observing other things apart from the fact that you’re wanting a pap smear. We have no similar system with males that sort of says, “Well, every couple of years you go and see a doctor.” (Six months post-treatment, organ-confined disease, 40-50 years) This sort of macho thing.… “I’m not going to let anyone else know I’ve got the problem, and I’m going to figure it out 78
PROSTATE CANCER AND MASCULINITY myself.…” [pause] I guess it depends what sort of a wife you’ve got [laughs]. If you’ve got a wife who takes some interest in your health, you get pushed into it. But, for a single guy who has to make these decisions on his own, unless there is something drastically wrong, he’s probably not going to do anything. Then you are left with the result of your negligence. You’ve got to overcome this masculinity thing. (Three years post-treatment, organ-confined disease, 61-70 years) Each of the men interviewed expressed, in a variety of ways, the pressure put on men within the Australian context to “be well” and “be strong” and the effect this had on their ability to seek help or support for health problems: I had, for years, suffered a slight dribble problem, which I was embarrassed about. I didn’t realise [sad laugh] prostate cancer was something I should have discussed, because, certainly, I’m not a great socialiser, but even so, the guys I went with, most of them would … the main topic of conversation would be sport, occasionally politics, mainly sport, and how about another drink, and that was it. (Approximately one year post-treatment, organ-confined disease, 61-70 years) It’s one of those things that you just don’t talk about. You know— men don’t talk about prostate—we don’t have any problems down there. (One year post-treatment, organ-confined disease, 61-70 years) Seen in the above excerpts, the construction that “men aren’t supposed to get ill,” which is so evident in the narratives of the men, is reinforced by the lack of routine structures to assess men’s health. Women are expected to get regular checks for a range of potential health risks. This is not to say that this is necessarily a positive expectation since one could argue that these cultural expectations contribute to the medicalisation and monitoring of women’s bodies. Furthermore, there are considerable problems with the actual effects of monitoring both breast cancer and prostate cancer in terms of the degree to which early diagnosis actually lowers mortality. It is not argued here that women are in a better position through a cultural expectation that they should be “healthy” and “aware of risks,” but rather that the set of expectations facing men have particular consequences that hitherto have been given little attention. One of the respondents talked about how he felt when he first found out he had prostate cancer in relation to cultural expectations and male behaviour: I had the operation in June, and I joined the prostate group in about September. I found it of assistance just to get off my chest the fact that I … I felt such a goose. Here was a critically important part of my body that I had never come across. I had never ever seen before a diagram showing what the prostate was, what it did, 79
BROOM and how critical it was to a very important part of my life. And it’s not as if we had any decent sexual education. All they taught us about apart from the amoeba was the frog, and the sex act was never even discussed. It was purely coincidental—you didn’t know why it dropped its sperm around the eggs—there was never any explanation. But it was infuriating that really … at school you learnt the basic digestive system, the cardiovascular system, even the rudiments of the nervous system, but the reproduction system was not even mentioned. It would have helped me if the subject matter had been discussed as it has been over the last few years. I would have known that I had a problem. I mean I never had any pains … I was having difficulty going to the toilet. It’s not the sort of thing I would have discussed with another man. And I would have been extremely surprised if another guy had said anything to me about it. Because we tend to be peculiar creatures, whereas the ladies have got it all sorted out because of childbirth; at a very early age they start talking to each other. They have these sorts of situations. Men don’t have problems. Quite a lot of my friends … some I have lost because of this … don’t go to the doctor—“I haven’t been to the doctor for 25 years,” they say. (Approximately one year post-treatment, organ-confined disease, 61-70 years) This quote captures a common frustration cited by almost all of the men interviewed here—they did not know they had a prostate, what it was, or what it did prior to its becoming a problem. This is significant on a number of different levels. First, the educational context from which many of these men emerged was particularly limited in terms of sexual education or education about men’s reproductive systems. As a result, the above respondent’s knowledge was nonexistent in terms of the role of the prostate in reproduction. The result is a sense of infuriation of “not being told” and subsequently feeling “incredibly foolish.” He had had progressive urination problems for 20 years before he was diagnosed with prostate cancer and never told anyone. In his words, “I just thought it was a normal part of aging because no one ever told me any different.” Furthermore, he stated that he would have never told his friends about his problem and would not have expected them to tell him about their health problems. What emerges is a view of the formal and informal systems that actualise societal constructions of masculinity in terms of their impact on men’s approach to healthcare. The educational system (bearing in mind that for these men this is the Australian educational system of the early to mid-20th century) institutionalises distinctions between men and women in terms of their need for information about their bodies, and cultural norms reflect these institutional practices, whereby men become resistant to talking about their bodies and their health. Each actively contributes to the development of the other; “maleness” is both institutionally socialised and informally socialised in the process of the ongoing production of the “male” approach to health. Statements like “I haven’t been to the doctor in 25 years” reinforce the “appropriateness” of denial or complacency, constructing avoidance as a quality to be 80
PROSTATE CANCER AND MASCULINITY admired and the unexamined body as the strong body. This is not to suggest that there is one “male approach” to health, or that when men talk about “the male approach” that they are necessarily talking about the same thing. Rather, there are a variety of experiences and representations of “the male approach,” and these have a significant impact on some of men’s experiences of disease. A testament to the complex and often contradictory views of the impact of masculinity is seen in the narratives of the men who stated that masculinity, as they viewed it, had no particular impact on their disease experience, and they thought that “men who take the macho approach are stupid”: AB: How do you see the treatments for prostate cancer as affecting men’s sense of masculinity? Boys are brought up not to cry and be very macho and all that sort of thing. It’s very hard for me to see where other guys are coming from in that regard. I guess for some men their masculinity is threatened by surgery or something or treatment for prostate cancer. AB: Do you think it is a big issue? I think it’s an important issue for the guys that it concerns—it’s very within that group, but defining that group, I wouldn’t have a clue who is thinking along those lines. Certainly my sexual activity has been put on hold. Maybe I’ll get that back again; maybe I never will. But I guess as you get older your sexual activity is going to decline to a certain extent anyway. My brother said he is not going to let anyone stick anything up his backside. That’s an issue as well for a lot of people. (Six months post initial treatment, organ-confined disease, 61-70 years) As was the case with several of the respondents, this respondent considered masculinity an important issue and his sexual activity a significant part of his life, but his sense of “being a man” was not going to get in the way of seeking information or his treatment decision. His discussion about his brother is significant for the fact that attitudes may, in fact, change post-diagnosis as men become less focused on particular constructions of masculinity and the stigma of particular tests, focusing more on cure and other facets of their lives that become more important. Although this study does not extend to examining this issue, it would be interesting to examine the importance or implications of masculinity pre-diagnosis and post-diagnosis. Having cancer almost certainly has implications for these men’s gender identities in terms of the degree to which they will uphold particular values as important when faced with potentially terminal disease. However, as will be shown in the following sections, the desire to maintain their sense of masculinity may in fact prevail. Like the previous respondent, and as seen in the following excerpt, several of the other men disputed the importance of masculinity, both in their disease experience and men’s health beliefs and behaviours: 81
BROOM I never felt [masculinity] was a problem for me, but I could certainly imagine that it could be for other men. I used to explain this by the fact that I was a [scientist] and was used to taking a [scientific] approach to things. The much less secure area is … I think that’s an idea which is encouraged by society’s propaganda. I’ve never felt that men were that reluctant to talk about things—this is the idea that this promulgates … I think it is a factor, but it’s a much more subtle one than the discussion seems to make it. I think you could make up all sorts of reasons if men aren’t talking about their health, and one of them is that there are less well documented, well thought out recommendations for men. This is part of the bigger question of making this information more available. (Mid-treatment, extra-capsular disease, 71-80 years) This statement outlines a very important point in relation to the issue of masculinity and men’s health. To what degree is the so-called “male approach” a result of a lack of institutional support networks rather than men’s desire not to address their health problems? It is argued here that, in fact, it is a complex combination of these and other factors that are self-perpetuating. For the above respondent, societal or media constructions of the “male approach” were misrepresentations, constructing males as noncommunicative and “reluctant to talk about things,” whereas in his experience this is, in fact, inaccurate, undermining the “reality” that many men are very open to talking about their health and sensitive issues such as sexual function and continence. He viewed this as propaganda that “made men think that they should be like this.” Here he is pointing to the very process by which the representation produces that of which it speaks—the process of producing categories and of generating qualities and attributes in which the media play a pivotal role. This is the activity of sorting what is “masculine” from “feminine,” constituting the subject, cementing particular translations of gender: translations that have powerful and important effects on some men and their disease experiences. The discussion thus far has focused on general perceptions and experiences of being men, with reflection on the implications of cultural understandings of masculinity for health knowledge and help-seeking behaviour. But how do these understandings shape men’s experience once they enter the healthcare system? How does the need to “be a man”—to perform certain forms of masculinity—influence men’s experiences of treatment for prostate cancer? What role, if any, do men’s gender identities play in decision-making processes? INVESTIGATION, DIAGNOSTIC PROCEDURES, AND MASCULINITY There has been little research on the consequences of prostate cancer treatments and tests for experiences of masculinity (Gray et al., 2002), or indeed, on how gender identities shape decision-making within this context. Within the interviews the men were asked to talk about their experiences with biomedical investigation, diagnosis, and treatment. Not surprisingly, all the men talked about the difficulties posed by these processes, but for the majority prostate cancer was particularly difficult for 82
PROSTATE CANCER AND MASCULINITY their gender identities. Some of the most striking reflections came in the form of their stories about undergoing particular procedures. The digital rectal examination (DRE), the transrectal ultrasound, and the prostate biopsy were a particular focus—a clear similarity being that they are all transrectal procedures. In particular, the prostate biopsy was regularly cited as an experience that intersected with these men’s perceptions of “being men” (see also Oliffe, 2004). The experience of the prostate biopsy was articulated by several of the men with words like “shame,” “embarrassment,” and “humiliation.” Here, two respondents reflect on their experiences of the biopsy: I thought I was going to get a happy needle,1 at least, when I had the biopsy done. I’m very sensitive about my genitalia and I think most men are. I’m not blasé about it because it’s not the biggest in the world but to go in there … to have the biopsy done, I went in and had an enema, which was embarrassing enough as it was, and then wheeled down to radiology on this trolley, and here I am with my bum sticking out the side of the trolley with this stupid little bloody hospital gown on, which you might as well not have on…. Then, I’ve got a nurse standing in front of me, and I’ve got two blokes behind me, one obviously manipulating the probe and so forth and the other guy taking the biopsies; he was probably from pathology. I don’t think I’ve been so bloody embarrassed or full of shame…. (One to five years post-treatment, organ-confined disease, 51-60 years) I’ve decided that I’m never having another biopsy if it’s not done with a sedative. It’s a terrible procedure. It’s humiliating, painful, and just terrible. Not something anyone should have to go through. It’s worse than something being stuck up your old fellow…. (Posttreatment, organ-confined disease, 51-60 years) These excerpts illustrate the effects procedures like the prostate biopsy can have on men’s sense of masculinity and pride (with which some explicitly link it). Feeling exposed, humiliated, and, in the first respondent’s case, dressed in childlike or feminine attire (i.e., the “gown” or “nightie”), several of these men experienced these procedures as problematic for their sense of masculinity and self-respect. A man of well over six feet and probably weighing in excess of 100kg, the first respondent above was not provided with attire substantial enough to cover his body, undermining his sense of control and strength, and exposing the stereotypical “measure of masculinity”—the penis. These seemingly mundane procedures such as being wheeled through the hospital or dressed in a “stupid little hospital gown”—pacification and exposure—all complicated the performance of masculinity for these men. The impact of transrectal procedures on some of these men’s senses of masculinity was significant. As stated by the above respondents, a number of the men reported feeling humiliated when undergoing transrectal procedures, suggesting that, in some way, these procedures compromised their sense of masculinity. It is particu83
BROOM larly interesting that this stigma was not mediated by age, with the following two men demonstrating the overall pattern in the interviews and showing that this stigma spans the generations: No one likes that idea of it [a rectal examination], and you certainly don’t go around talking about it. I didn’t tell anyone that I had prostate cancer, I haven’t told any of my friends, because they don’t understand; you tell people you’ve got any type of cancer, and they think you’re dead and buried—it could affect your relationships with people. So my friends and close friends don’t know that I have prostate cancer. I was also reluctant to tell any of my family; I’ve got five children. (One to five years post-treatment, hormone treatment, extracapsular disease, 71-80 years) It’s not something that you feel comfortable talking about with other men. There’s a bit of stigma associated with rectal [examinations]. (Six months post-treatment, organ-confined disease, 40-50 years) It was not that these men would not undergo the procedures because of this, but rather, that the procedures had a significant impact on their sense of pride. Although each of the men differed in their level of negativity towards transrectal examinations, they were unanimously negative and pointed to the “nature of them” as important. More than the pain, the preeminent issue was that the procedures were rectal rather than through another entry point. Within the interviews it seemed that it was the very nature of these procedures and the connotations associated with rectal penetration that produced the degree of negativity expressed by the men. Clearly, the classic “source” of heterosexual masculinity is the penis and male-female intercourse, and the majority of the interviewees were married, heterosexual males. This is distinct from penetration of the rectum that is generally associated with homoerotic behaviour and very much sits in opposition to dominant forms of heterosexual masculinity. Clearly, transrectal procedures are extremely uncomfortable procedures to undergo and are in no way linked to sexual pleasure. However, there is a clear relationship between these men’s senses of how their masculinity may be compromised and the nature of the procedures used in the diagnosis and treatment of prostate cancer (e.g., digital rectal examination, transrectal ultrasound, and biopsy). For several of these men, their performances of masculinity (see Butler, 1990) were very much tied to heterosexuality (see also Gray et al., 2002); thus these interventions problematised this by signifying that which runs counter to normative and regulatory (see Foucault, 1977) constructs of masculinity—homoeroticism. Despite a number of negative experiences in regard to transrectal procedures, two of the men felt that these were not that difficult to endure and, second, had little impact on their sense of masculinity. We’ve got two friends who refused to be screened. They are terrified with what we have found, and one of their fathers did have it. 84
PROSTATE CANCER AND MASCULINITY His father has just died—they’re terrified about the finger up the bum bit, too. OK, it’s not nice, but gee, if that’s the worst thing that’s ever going to happen to you in your life, then you’re not doing too badly. (Six years post-diagnosis, hormone treatment for secondary disease, 61-70 years) The [digital rectal examination] might worry some guys, but it didn’t worry me at all. It’s all over quickly, and that’s that. (Six months post initial treatment, organ-confined disease, 61-70 years) This was the approach that a distinct minority of the men took in regard to the transrectal procedure—that if it was needed, and it might help, then “so be it.” It was considered an uncomfortable procedure that had no particular relevance to their identities or senses of masculinity. Despite the experiences of this small minority, investigative and diagnostic procedures were a source of considerable humiliation and degradation for these men—experiences that were closely tied to cultural codes of masculinity and the “masculine ideal.” The location (within the range of the rectum) and function (delivery of semen) of the prostate makes an already difficult process (i.e., vulnerability, illness, and thus weakness) even more problematic for these men’s gendered identities. TREATMENTS, POTENCY, AND MASCULINITY The implications of prostate cancer for masculinity are not confined to investigative or diagnostic procedures. Some of the most significant implications become prominent during and post-treatment (Gray et al., 2002; Kunkel, Bakker, Myers, Oyesanmi, & Gomella, 2000). The most common treatments for prostate cancer—the radical prostatectomy and radiation treatment—each carry considerable risks of impotency and incontinence (NCI, 2003; Stanford et al., 2000). As suggested in the previous section, cultural ideals of masculinity are closely tied to heterosexuality (see Butler, 1990; Foucault, 1979), and particularly heterosexual penetration (potency) and desire, both of which may be difficult, if not impossible, post-treatment. The issue of potency represents an important, but often underdiscussed, factor for a significant number of men in decision-making processes (see also Gray et al., 2000, 2002; Kunkel et al., 2000). Emerging research in this area shows that, in the case of prostate cancer, potency is often not fully addressed in the decision-making process, becoming a major issue for men post-treatment (Gray et al., 2000; Kunkel et al., 2000). This is in part a result of the fact that medical specialists (and not just those in prostate cancer) have traditionally focused on cure or survival rates as central to treatment decisions. This is despite the fact that it is becoming increasingly apparent that some men are prepared to trade long-term survival for potency (see Kunkel et al., 2000). However, there is no data available on this issue, and thus little is known about the influence of masculine ideas on men’s treatment decisions. Thus, the current study explored these men’s experiences of balancing “cure” versus “potency” and the role masculinity played in treatment decisions and experiences of treatment side-effects. 85
BROOM Loss of potency, and its close links to dominant constructions of masculinity, arose as a significant issue for a majority of the men in this study: Masculinity is an incredibly important thing. You know, my wife and I had reached a stage in our lives where sex had become really important. When we had the kids, we were busy and sexual attraction waned, but when I was 55, my boys were off at uni and we had some time to ourselves, and we had matured sexually, and it had become an important part of our lives. Now, we’ve never got that back [after the radical prostatectomy]. It [masculinity] varies from person to person. People’s masculinity and their lovemaking is [sic] very different person to person. Masculinity is profoundly important. I’ve seen marriages break up from guys who have had a radical and never got back on deck with their potency, and, simply, it was the end of the marriage. The women said they couldn’t cope—they needed to have that kind of lovemaking—only on one occasion did it break up a marriage, but I’ve seen it create difficulties in quite a few marriages…. (One to five years post-treatment, organ-confined disease, 51-60 years) Loss of potency was talked about by several of the men as the most difficult aspect of their post-treatment stage. It was viewed as both impacting negatively on their well-being and also that of their wives. The possibility of losing potency also dominated the majority of these men’s pre-treatment experiences. In particular, their desire to retain their sense of masculinity was omnipresent during the decision-making process and was an important factor in their final treatment decision. The prominence of masculinity as a factor was so influential for some of the men that the decision-making process was not about finding the best chance of “cure” but rather finding the treatment that would allow them to “be a man” and retain the ability to perform sexually. As is captured in the excerpt below, several of the men specifically chose not to undergo a radical prostatectomy because they did not want to lose their sex life and sense of masculinity: My sexual performance is very important, even to an older bloke like me, but so many people miss the point, that it’s so much part of the male psyche; you take his manhood away from him, and if it’s been a thing that’s important to him, and I have a whole long, long record of it being very important to me, if you take that away from the male, you change that male, and that’s not always understood—you change him entirely. So, I opted for [treatment omitted to retain anonymity]. (One to five years post-treatment, organ-confined disease, 61-70 years) This respondent continues later in the interview:
PROSTATE CANCER AND MASCULINITY Since I had the [treatment], when I met the first lady that wanted to partake, and this was the first time after having the [treatment], and this is probably a couple of years after having the [treatment], and suddenly I was confronted with this lady who was quite keen to indulge, so having found a warm one ready to go one had to do something about it, so I got hold of my GP, and he briefed me on the injecting. It’s a bit artificial, but it works. The lady was ready to roll and I had to do something quick. The first time you do it, it’s a bit daunting, because it’s not something you really want to stick a needle into. However, if you handle it in all good humour you suddenly find that the result is worth the initial trial, and actually it became quite a reasonable thing. (One-5 years post-treatment, organ-confined disease, 61-70 years) This respondent provides a good example of the influence potency, and indeed understandings of masculinity, may have on treatment decisions. Although retaining potency is clearly related to being able to partake in a pleasurable activity (regardless of its connection to “being a man”), it is also closely linked to several of these men’s gender identities. As suggested by one respondent, “once the prostate has been removed … some men feel like they are no longer a complete man.” For several of the men interviewed here, the risk of not being “a complete man” superseded the risk of death. In two cases, clearly “inferior” treatments (in terms of its chance of cure) were chosen due to the potential to retain potency. The implication is that, in the case of prostate cancer, an already complicated process of selecting “best” treatment (in terms of cure) is further complicated by the desire to retain the ability to “be a man” or perform idealised forms of masculinity. CONCLUSION This study provides insight into the impact of cultural codes of masculinity peri and post treatment for men with prostate cancer. Although some heterogeneity was evident in these men’s accounts of biomedical investigations and disease and treatment side-effects, the majority found such processes highly problematic in terms of their gender identities. For the men in this study, difficulties faced within investigation and diagnosis centred on the nature of the procedures (i.e., transrectal), and in treatment decision-making, the potential reduction in their ability to perform idealised forms of masculinity. These difficulties seemed closely linked to the dominance of heterosexuality in idealised versions of masculinity, and in turn were enhanced by the “code of silence” surrounding illness and weakness within men’s health cultures. It seems that men do vary in the degree to which disease and treatment processes affect their experiences of masculinity, and the influence of this on their decision-making regarding treatments. On the one hand, for some of these men, the risk of death greatly outweighed the risks posed by impotence or incontinence. However, others prioritised potency and lifestyle implications over cure, resulting in decision making that was deeply rooted in their desire to retain the ability to perform idealised versions of masculinity. 87
BROOM In light of the evidence presented here, it is crucial that all actors involved in the decision-making process (particularly the clinicians) are aware of the difficulties faced by men within decision-making processes. Although negotiating dominant constructions of masculinity may not be difficult for some men in the face of a potentially life-threatening disease, the data presented here suggest that for others it will influence their choice of treatment and represents a major source of anxiety pre, peri, and post-treatment. Allowing a nonpressurised, safe process in which men are able to communicate their values and priorities, rather than a process based on the simple assumption of “cure” as isolated or uncomplicated, is essential for assisting men in the decision-making process. Furthermore, increasing the awareness of all parties regarding the impact that basic testing procedures may have on men’s sense of masculinity is vital. The “clinic” is a space in which gender is performed, and limiting the degree to which investigations disrupt men’s performances of masculinity (i.e., avoiding “shaming,” ensuring privacy, maximising knowledge about procedure and the roles of particular health professionals) would likely limit the distress experienced by some men. Gaining an understanding of exactly how men experience such processes is essential for ensuring men are provided with adequate support and care pre, peri, and post treatment, and for facilitating community, carer, and clinician awareness of the role masculinity plays in shaping men’s experiences of disease. NOTE 1. The “happy needle” refers to local anaesthetic. In Australia, although it is officially subsidised by Medicare (the state health fund available to all Australians), urologists often do not use anaesthetic during a prostate biopsy. REFERENCES AIHW (1999). Cancer in Australia 1996: Incidence and mortality data for 1996 and selected data for 1997 and 1998. Canberra: Australian Institute of Health and Welfare and Australasian Association of Cancer Registries. Arber, S. (1990). Opening the black box: Inequalities in women’s health. In P. Abbott & G. Payne (Eds.), New Directions in the Sociology of Health (pp. 3756). Basingstoke: Falmer Press. Arrington, M. (2003) “I don’t want to be an artificial man”: Narrative reconstruction of sexuality among prostate cancer survivors. Sexuality & Culture, 7(2), 30-58. Banks, I. (2001). No man’s land: Men, illness and the NHS. British Medical Journal, 323, 1058-1060. Biddulph, S. (1995). Manhood: An action plan for changing men’s lives (2nd ed.). Sydney: Finch Publishing. Bokhour, B., Clark, J., Inui, T., Silliman, R., & Talcott, J. (2001). Sexuality after treatment for early prostate cancer: Exploring the meanings of “erectile dysfunction.” Journal of General Internal Medicine, 16(10), 649-655. Bradlow, A., Coulter, A., & Brooks, P. (1992). Patterns of referral. Oxford: Health Services Research Unit. 88
PROSTATE CANCER AND MASCULINITY Broom, D. (2001). Reading breast cancer: Reflections on a dangerous intersection. Health, 5(2), 249-268. Butler, J. (1990). Gender trouble: Feminism and the subversion of identity. New York: Routledge. Cameron, E., & Bernardes, J. (1998). Gender and disadvantage in health: Men’s health for a change. Sociology of Health and Illness, 20(5), 673-693. Chapple, A., & Ziebland, S. (2002). Prostate cancer: Embodied experience and perceptions of masculinity. Sociology of Health and Illness, 24(6), 820-841. Connell, R.W. (1995). Masculinities. St. Leonards, N.S.W.: Allen & Unwin. Connell, R.W. (2000). The men and the boys. St. Leonards, N.S.W.: Allen & Unwin. Court, C. (1995). Survey reveals men’s ignorance about health. British Medical Journal, 310, 759. Courtenay, W. (2000). Constructions of masculinity and their influence on men’s well-being: A theory of gender and health. Social Science and Medicine, 50, 1385-1401. Courteney, W., & Keeling, R. (2000). Men, gender and health: Toward an interdisciplinary approach. Journal of American College Health, 48(6), 243-247. Charmaz, K. (1990). “Discovering” chronic illness: Using grounded theory. Social Science and Medicine. 30(11), 1161-1172. Doyal, L. (2001). Sex, gender, and health: The need for a new approach. British Medical Journal, 323(7320), 1061-1063. Ezzy, D. (2002). Qualitative analysis: Practice and innovation. N.S.W., Australia: Allen & Unwin. Fergus, K., Gray, R., & Fitch, M. (2000). Sexual dysfunction and the preservation of manhood: Experiences of men with prostate cancer. Journal of Health Psychology, 7(3), 303-316. Foucault, M. (1977). Discipline and punish: The birth of the prison (A. Sheridan, Trans.). London: Allen Lane. Foucault, M. (1979). The history of sexuality. London: Allen Lane. Frydenberg, M. (1998). Management of localised prostate cancer: State of the art. Medical Journal of Australia, 169, 11-12. Garnick, M. (1993). Prostate cancer: Screening, diagnosis and management. Annals of Internal Medicine, 118, 804-818. Good, G., & Sherrod, N. (2001). The psychology of men and masculinity: Research status and future directions. In R. Unger (Ed.), Handbook of the psychology of women and gender (pp. 201-214). New York: Wiley. Gray, R., Fitch, M., Fergus, K., Mykhalovskiy, E., & Church, K. (2002). Hegemonic masculinity and the experience of prostate cancer: A narrative approach. Journal of Aging and Identity, 7(1), 43-62. Gray, R., Fitch, M., Phillips, C., Labrecque, M., & Fergus, K. (2000). To tell or not to tell: Patterns of disclosure among men with prostate cancer. Psychooncology, 9, 273-282. Griffiths, S. (1996). Men’s health: Unhealthy lifestyles and an unwillingness to seek medical help. British Medical Journal, 312(7023), 69-71.
BROOM Harris, R., & Lohr, K. (2002). Screening for prostate cancer: An update of the evidence for the U.S. Preventive Services Task Force. Annals of Internal Medicine. 137(11), 917-29. Harrison, J., Maguire, P., & Pitceathly, C. (1995). Confiding in crisis: Gender differences in patterns of confiding among cancer patients. Social Science and Medicine, 41, 1255-1260. Hines, S. (1999). Treating early prostate cancer: Difficult decisions abound. Patient Care, 33(16), 82-91. Kaplan, M., & Marks, G. (1995). Appraisal of health risks: The roles of masculinity, femininity, and sex. Sociology of Health & Illness, 17(2), 206-219. Kiss, A., & Meryn, S. (2001). Effect of sex and gender on psychosocial aspects of prostate and breast cancer. British Medical Journal, 323(7320), 1055-1059. Krizek, C., Roberts, C., Ragan, R., Ferrara, J., & Lord, B. (1999). Gender and cancer support group participation. Cancer Practice, 7(2), 86-92. Kunkel, E., Bakker, J., Myers, R., Oyesanmi, O., & Gomella, L. (2000). Biopsychosocial aspects of prostate cancer. Psychosomatics, 41, 85–94. Langellier, K.M., & Sullivan, C.F. (1998). Breast talk in breast cancer narratives. Qualitative Health Research, 8(1), 76-94. Latour, B. (1988). The pasteurization of France. Cambridge: Harvard University Press. Law, R., Campbell, H., & Dolan, D. (Eds.). (1999). Masculinities in Aotearoa/New Zealand. Palmerston North: Dunmore Press Ltd. MANNET (2002). Aussie Health. Men’s Awareness Network. Access online at: http://www.mannet.com.au/camh/index.htm. Date accessed: 10/10/2003. McLean, C. (1995). The costs of masculinity: Placing men’s pain in the context of male power. Promoting Gender Equity Conference, February 22-24. Canberra, Australia. Messner, M.A. (1997). Politics of masculinities: Men in movements. Thousand Oaks, CA: Sage. Moynihan, C. (1998). Theories of masculinity. British Medical Journal, 317, 107275. NCI (2003). Prostate cancer. National Cancer Institute. Access online at: http://www.cancer.gov/cancerinfo/pdq/treatment/prostate/healthprofessional. Date accessed: 12/12/2003. Oliffe, J. (2004). Anglo-Australian masculinities and trans rectal ultrasound prostate biopsy (TRUS-Bx): Connections and collisions. International Journal of Men’s Health, 3(1), 43-60 Ots, J. (1993). From Adam to A.D.A.M.—The social construction of men’s health, Men’s health: The forgotten issue (pp. 9-16). Melbourne: Ausmed. PCFA (2003a). Prostate cancer: What is it? Prostate Cancer Foundation of Australia Access online at: http://www.prostate.org.au/disease.htm. Date accessed: 22/10/03 PCFA (2003b). Public awareness. Prostate Cancer Foundation of Australia. Access online at: http://www.prostate.org.au/disease.htm. Date accessed: 20/10/03.
PROSTATE CANCER AND MASCULINITY Reddin, J., & Sonn, C. (2003). Masculinity, social support, and sense of community: The men’s group experience in Western Australia. The Journal of Men’s Studies, 11(2), 207-224. Riska, E. (2002). From type A man to the hardy man: Masculinity and health. Sociology of Health and Illness, 24(3), 347-358. Rubin, H., & Rubin, I. (1995). Qualitative interviewing: The art of hearing data. London: Sage. Saunders, C. (2000). Where are all the men? Patient Care, 34(11), 10. Stanford, J., Feng, Z., Hamilton, A., Gilliland, F., Stephenson, R., Eley, W., et al. (2000). Urinary and sexual function after radical prostatectomy for clinically localized prostate cancer. Journal of the American Medical Association, 283, 354-360. Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage. Tudiver, F., & Talbot, Y. (1999). Why men don’t seek help? Family physicians’ perspectives on health-seeking behaviour in men. Journal of Family Practice, 43, 475-480. Walsh, N. (2000). Men are out of touch with health care system. Family Practice News, 30(20), 42. Watson, J. (2000). Male bodies: Health, culture and identity. Buckingham: Open University Press. White, R. (1997). Young men, violence and social health. Youth Studies Australia, 16(1), 31-37. White, R. (2002). Social and political aspects of men’s health. Health, 6(3), 267285.