**1. Introduction**

36 Prostate Cancer – Diagnostic and Therapeutic Advances

Kaaks, R., Lukanova, A. & Sommersberg, B. (2000). Plasma androgens, IGF-1, body size, and

Baillargeon, J., Pollock, BH., Kristal, AR., Bradshaw, P., Hernandez, J., Basler, J., Higgins, B.,

Freedland, SJ., Platz, EA., Presti, JC Jr., Aronson, WJ., Amling, CL., Kane, CJ. & Terris, MK.

Xu, J., Meyers, DA., Sterling, DA., Zheng, SL., Catalona, WJ., Cramer, SD., Bleecker, ER. &

(November 2000), pp. 157-72, ISSN 1365-7852

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prostate cancer risk: a synthetic review. *Prostate Cancer Prostatic Dis.* Vol. 3, No. 3,

Lynch, S., Rozanski, T., Troyer, D. & Thompson, I. (2005). The association of body mass index and prostate-specific antigen in a population-based study. *Cancer.* Vol.

(2006). Obesity, serum prostate specific antigen and prostate size: implications for prostate cancer detection. *J Urol.* Vol. 175, No. 2, (February 2006), pp. 500-4, ISSN

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> In this chapter, we intend to familiarize readers with the complex scope of the experience of being a man with prostate cancer in current societies and dealing with scientific and popular health knowledge related to prostate cancer. We discuss issues of taking care of one's male body, being an older learner learning while facing a chronic degenerative disease, as well as the questions that social and health care professionals may encounter from men in providing meaningful health care. The provision of health care to men seems controversial, due to the lack of national policies on men's health in most countries as well as scarcity of men's health promotion programs in multicultural societies.

> This chapter presents a brief overview of the state of knowledge about masculinities and gender, health literacy, and age – all major social determinants of health for men. The authors of each section present scientific knowledge produced in their qualitative research to contextualize other scholars' ideas and arguments. At the end of each section are clinical vignettes and reflection questions related to the contents of each section.

### **2. Men, masculinities, health and prostate cancer: Complex technology, body control, and decision making**

In this section we address the issue of control that may coexist with other needs facing men, from prostate cancer detection through rehabilitation. Being in control relates to both the social enactments of masculinities and to how men understand current trends in health and technology. Control has been discussed as an important signifier of virility in different

Renewing Perspectives on Men's Prostate Cancer

and health, a research agenda in progress.

diseases (Mahalik et al., 2007).

Literacy and Engagement Along the Disease Continuum 39

viewed as a diverse group, with some men having better access to social prestige and power than other men and women, dynamics of gender and gender inequality become clearer and richer. Also, viewing men as diverse enables exploration of links between gender dynamics

Researchers pursuing this agenda has begun to explore the close relationships between masculinities and health (Courtenay, 2000), in the sense that gender perceptions and gender-related differences aid in explaining differences in health risks, and how health practices play a role in gender differences. Taking care of oneself, for example, might be considered effeminate in some contexts, leading to higher incidence of easily preventable diseases. When men embody masculinities that promote risky behavior as proof of virility, sexual conquests or failure to use condoms may put men (and their sexual partners) at higher risk for sexually transmitted diseases. In the case of prostate cancer, both the fear of bodily fragility (before and after treatment) and a masculinity that discourages care may be relevant to understanding how men experience their bodies and

Lohan (2007) suggests that, rather than focusing on men's studies and concepts such as hegemonic masculinities, researchers should embrace critical studies on men, a research area more attuned to feminist critiques of gender and power relations in society, in order to assess which factors explain how gender and health connect. Critical studies on men not only incorporate culture and behavior, but contextualize discussions of men's health in a wider explanatory framework including psychological, biological, and other factors. This context can be relevant to increasingly technological health interventions that regard differences (such as race and gender) in different terms than traditional health interventions. As biological difference becomes understood in genetic terms, for example, and as health research incorporates these advances in genetics, researchers of men's health will need to rethink how health, biology, and bodily differences are being lived in real life by men. Men's experiences with health and prostate cancer should not be understood in a merely cultural register, however. Although cultural factors, such as the idea of "men don't cry" [our emphasis], are very important in understanding how men experience prostate cancer and care (Chapple & Ziebland, 2002), embodied factors, such as side effects of surgical and other interventions, reduce men's sense of their own virility (Chapple & Ziebland, 2002). Understanding embodied factors demands an understanding of masculinities that goes beyond social construction and embraces the complex interaction of many factors. Masculinities contradict each other, vary locally and nationally, and comprise complex hierarchies, for example (Connell & Messerschmidt, 2005; Wall & Kristjanson, 2005). They

are also deeply infused with technology in varied contexts (Mellstrom, 2004).

Men's need and search for control, and attempts to be in control, suggest avenues to understanding the context for possible associations of cultural, embodied, and technological factors in men's experiences with prostate cancer. Such complex associations, because they help to constitute men's emotional and embodied experiences with disease and gender, may be crucial to understanding how men experience disease and recovery differently and thus how successful prevention and treatment can be. Control is multifaceted for men: Control over one's body and its diseases; control over other men, over women, over one's feelings, and over the public sphere, are some examples. As part of performing masculinities successfully, men generally avoid situations where they may lose control. Such situations

**2.3 Control in men's health-related experiences** 

cultural contexts (Almeida, 1996; Bourdieu, 2001) and as a factor in men's perception of their bodies and assessment of the emotional and physiological care they receive. For men, losing control is seen as a negative experience, which may lead to negative experiences of preventative methods or care (Courtenay, 2000). Control is also a powerful metaphor for how current medicine, through increasingly technological interventions in the body, is being shaped by technoscience (Clarke et al., 2003; Steinberg, 1997). This "virile" [our emphasis] biomedical agenda should be tempered by attention to what some call "subjective variables," which we call "social or cultural factors". These factors include how men experience different types of masculinities and how these experiences and values inform men's attitudes toward health (Zanchetta et al., 2010). Social/cultural factors are relevant to every aspect of health and disease, and taking them into account will open professionals' perception to the complexity and richness of gender–related experiences of health practices.

#### **2.1 Control in men's studies**

The issue of control in the context of men's health is rooted in the upsurge of so-called men's studies in international academic literature, an upsurge that followed debates about gender in what is now known as the second wave of feminism (Butler, 1990; Scott, 1989). Men's studies tried to consider seriously the feminist claim that gender was not only about women, but should involve a close analysis of the relationships between genders. In addition, power relations emerged as a concomitant issue in debates about control. Such relations were not only analyzed in terms of how men relate to women, but also how men relate among themselves, and any claims that biology determined gender practices and power relations were to be vigorously denied. Gender was to be seen as socially constructed, not necessarily derivative of one's biological make-up. Men's studies scholars believed gender relationships are pervasive in our understanding of the world and that, therefore, our practices are deeply influenced by gendered understandings (Courtenay, 2000; Monteiro, 2000, 2001).

Studies of masculinities or men's studies became an important, separate subfield in the early 1980s and 1990s, especially in North America, Western Europe, and Australia (Carrigan et al., 1985; Cornwall & Lindisfarne, 1994; Gilmore, 1990; Kimmel, 1987). Masculinity was then increasingly incorporated into critical discourse on gender and power, instead of being an unquestioned universal category within discourse, culture, and politics (Monteiro, 2000). Authors began to discuss the unequal distribution of power between men and women, and among men themselves. The idea of hegemonic masculinities (Connell, 1995) became central to studies of masculinities, for example, because it enabled both deconstruction of masculinity as a uniform category that could be applied to all men and a discussion of power inequalities that affected men. Without construing men as merely victims of social expectations, these discussions opened up talk about plural masculinitie*s* in the study of men.

#### **2.2 Masculinity, health, and prostate cancer**

When discussing diversity among men, it then became important to address the challenges involved in becoming a man. Different masculinities are not purely biological or selfevident; they emerge in a process that is at the same time social, cultural, historical, etc. With the process of becoming a man seen as a process of men incorporating certain expectations, social roles, and practices (Bourdieu, 1997, 2001), masculinities can then be seen as also problematic, complex, and sometimes burdensome to men and their health. When men are

cultural contexts (Almeida, 1996; Bourdieu, 2001) and as a factor in men's perception of their bodies and assessment of the emotional and physiological care they receive. For men, losing control is seen as a negative experience, which may lead to negative experiences of preventative methods or care (Courtenay, 2000). Control is also a powerful metaphor for how current medicine, through increasingly technological interventions in the body, is being shaped by technoscience (Clarke et al., 2003; Steinberg, 1997). This "virile" [our emphasis] biomedical agenda should be tempered by attention to what some call "subjective variables," which we call "social or cultural factors". These factors include how men experience different types of masculinities and how these experiences and values inform men's attitudes toward health (Zanchetta et al., 2010). Social/cultural factors are relevant to every aspect of health and disease, and taking them into account will open professionals' perception to the complexity and richness of gender–related experiences of health practices.

The issue of control in the context of men's health is rooted in the upsurge of so-called men's studies in international academic literature, an upsurge that followed debates about gender in what is now known as the second wave of feminism (Butler, 1990; Scott, 1989). Men's studies tried to consider seriously the feminist claim that gender was not only about women, but should involve a close analysis of the relationships between genders. In addition, power relations emerged as a concomitant issue in debates about control. Such relations were not only analyzed in terms of how men relate to women, but also how men relate among themselves, and any claims that biology determined gender practices and power relations were to be vigorously denied. Gender was to be seen as socially constructed, not necessarily derivative of one's biological make-up. Men's studies scholars believed gender relationships are pervasive in our understanding of the world and that, therefore, our practices are deeply

influenced by gendered understandings (Courtenay, 2000; Monteiro, 2000, 2001).

Studies of masculinities or men's studies became an important, separate subfield in the early 1980s and 1990s, especially in North America, Western Europe, and Australia (Carrigan et al., 1985; Cornwall & Lindisfarne, 1994; Gilmore, 1990; Kimmel, 1987). Masculinity was then increasingly incorporated into critical discourse on gender and power, instead of being an unquestioned universal category within discourse, culture, and politics (Monteiro, 2000). Authors began to discuss the unequal distribution of power between men and women, and among men themselves. The idea of hegemonic masculinities (Connell, 1995) became central to studies of masculinities, for example, because it enabled both deconstruction of masculinity as a uniform category that could be applied to all men and a discussion of power inequalities that affected men. Without construing men as merely victims of social expectations, these discussions opened up talk

When discussing diversity among men, it then became important to address the challenges involved in becoming a man. Different masculinities are not purely biological or selfevident; they emerge in a process that is at the same time social, cultural, historical, etc. With the process of becoming a man seen as a process of men incorporating certain expectations, social roles, and practices (Bourdieu, 1997, 2001), masculinities can then be seen as also problematic, complex, and sometimes burdensome to men and their health. When men are

**2.1 Control in men's studies** 

about plural masculinitie*s* in the study of men.

**2.2 Masculinity, health, and prostate cancer** 

viewed as a diverse group, with some men having better access to social prestige and power than other men and women, dynamics of gender and gender inequality become clearer and richer. Also, viewing men as diverse enables exploration of links between gender dynamics and health, a research agenda in progress.

Researchers pursuing this agenda has begun to explore the close relationships between masculinities and health (Courtenay, 2000), in the sense that gender perceptions and gender-related differences aid in explaining differences in health risks, and how health practices play a role in gender differences. Taking care of oneself, for example, might be considered effeminate in some contexts, leading to higher incidence of easily preventable diseases. When men embody masculinities that promote risky behavior as proof of virility, sexual conquests or failure to use condoms may put men (and their sexual partners) at higher risk for sexually transmitted diseases. In the case of prostate cancer, both the fear of bodily fragility (before and after treatment) and a masculinity that discourages care may be relevant to understanding how men experience their bodies and diseases (Mahalik et al., 2007).

Lohan (2007) suggests that, rather than focusing on men's studies and concepts such as hegemonic masculinities, researchers should embrace critical studies on men, a research area more attuned to feminist critiques of gender and power relations in society, in order to assess which factors explain how gender and health connect. Critical studies on men not only incorporate culture and behavior, but contextualize discussions of men's health in a wider explanatory framework including psychological, biological, and other factors. This context can be relevant to increasingly technological health interventions that regard differences (such as race and gender) in different terms than traditional health interventions. As biological difference becomes understood in genetic terms, for example, and as health research incorporates these advances in genetics, researchers of men's health will need to rethink how health, biology, and bodily differences are being lived in real life by men.

Men's experiences with health and prostate cancer should not be understood in a merely cultural register, however. Although cultural factors, such as the idea of "men don't cry" [our emphasis], are very important in understanding how men experience prostate cancer and care (Chapple & Ziebland, 2002), embodied factors, such as side effects of surgical and other interventions, reduce men's sense of their own virility (Chapple & Ziebland, 2002). Understanding embodied factors demands an understanding of masculinities that goes beyond social construction and embraces the complex interaction of many factors. Masculinities contradict each other, vary locally and nationally, and comprise complex hierarchies, for example (Connell & Messerschmidt, 2005; Wall & Kristjanson, 2005). They are also deeply infused with technology in varied contexts (Mellstrom, 2004).

#### **2.3 Control in men's health-related experiences**

Men's need and search for control, and attempts to be in control, suggest avenues to understanding the context for possible associations of cultural, embodied, and technological factors in men's experiences with prostate cancer. Such complex associations, because they help to constitute men's emotional and embodied experiences with disease and gender, may be crucial to understanding how men experience disease and recovery differently and thus how successful prevention and treatment can be. Control is multifaceted for men: Control over one's body and its diseases; control over other men, over women, over one's feelings, and over the public sphere, are some examples. As part of performing masculinities successfully, men generally avoid situations where they may lose control. Such situations

Renewing Perspectives on Men's Prostate Cancer

therefore their sexual and emotional health.

**2.5 Informing professional practice** 

(Chapple & Ziebland, 2002).

Literacy and Engagement Along the Disease Continuum 41

knowledge that one carries genes that make one susceptible to cancer does not necessarily lead men to adopt preventive behavior. Indeed, it is clear that men avoid such behavior due to social expectations (Mahalik et al., 2007). Also, risks inherent in currently available prostate-cancer treatments are problematic for many men, in spite of any other considerations relating to their knowledge about preventing and monitoring cancer

When powerful trends to reinterpret health and disease in terms of new technologies (genetic or otherwise) dominate, researchers run the risk of ignoring the rich debate over socio-cultural factors that affect gender and health/disease. Although new technologies offer wonderful prospects for diagnosis and treatment, social factors such as gender, behavior, and culture should not be underestimated in terms of their contributions to understanding health and risk behaviors. Control, an attribute of hegemonic masculinity, is often associated with science and technology (two very male-dominated fields in some respects). This traditionally Western logic should be enriched with an understanding of how

This debate about control, genetics, and technology is meaningful to social and health professionals who care for and advise men and their significant others throughout the prostate-cancer trajectory. Professionals should reflect on their beliefs about masculinity and prostate cancer, and their professional practice. Knowing that control is central to many men's experiences of masculinity, professionals should take a cautionary approach when presenting decision aids and discussing options about which they ask men to make immediate decisions. Caution is recommended mainly when men make decisions without professional guidance, because men may postpone reflection in favor of taking immediate action, thereby trying to demonstrate autonomy and willingness to decide. Men have been highly influenced by medicalization of erectile dysfunction in advertising for sexualperformance-enhancing drugs, advertising that focuses on the social importance of erections to virility. Therefore, professionals need to expand their understanding of the values and meaning that men attribute to diseases that threaten their sense of masculinity, and

Knowledge of multiple aspects of culture, society, and history is important to help social and health professionals decode behavior expected of men as engaged partners in their own treatment and rehabilitation. Societies are becoming more and more multicultural, giving men opportunities to learn new meanings of being a man, and new attitudes to men's health, men's self-care, men's sexuality, and facts and myths related to prostate cancer (Zanchetta et al., 2010). For professionals, it is difficult to gather scientific evidence on men's behaviors, due to men's resistance to participating in clinical and behavioral studies (Deslauriers & Deslauriers, 2010). Again, gender-related discourse and perceived lack of control over data-collection encounters may affect men's participation in studies. To counteract resistance, researchers recommend allowing men to feel in control of their disclosure of personal information, such as feelings, fears, disagreeable symptoms, threatening thoughts, and awareness of uncertainties (Deslauriers & Deslauriers, 2010). Such research fieldwork strategies may also be helpful for assessment and follow-up interviews in clinical contexts, where professionals can use a conversational style with men, instead of a professional authoritative style of asking direct and probing questions. Despite a culturally and socially constructed trend of men being attracted to technology (Lerman et al., 2003;

culture, society, and history explain health, disease, and treatment.

may include preventive care and other actions that may improve health or prospects for survival (Kimmel, 1995; Lohan, 2007). Control is also at stake in current medical interventions, where advances in genetics, nanotechnology and other fields potentially enable control over every bodily process (Channel, 1991; Hogle, 2005). Proponents of this "virile" [our emphasis] approach to health and disease, we argue, need to pay attention to the complexity of men's lived experiences and gender differences in order to enhance the approach's effectiveness.

#### **2.4 Control and the delivery of health care**

Control is a general trend in how health and disease are being tackled by modern, technoscientific medicine. The trend, called "bio-medicalization" (Clarke et al., 2003) describes how techno-science is becoming the dominant framework through which the concepts of health and the body are understood, as well as how health interventions are researched and used (Hogle, 2005; Lenoir, 2002a; Lenoir, 2002b). Bio-medicalization frames many health-related actions, from how we perceive the body visually, to the increasing use of technologies that make body interiors available for display and intervention (Taylor, 2005; Van Dijck, 2005), to ways of designing bodily interventions that are increasingly mediated by technology (Lenoir, 2004). This trend toward the incorporation of technology in health is increasingly evident as genetics becomes a dominant language to describe and understand diseases, including diabetes (Hedgecoe, 2002), cancer (Chung et al., 2002; Fujimura, 1996; Monteiro, 2009), and many others (Fullwiley, 2007). Not only has prostate cancer begun to be reinterpreted as a genetic disease, along with cancer in general, but the search is ongoing for genes to classify prostate cancer, diagnose it early, and refine surgical interventions (Shen & Abate-Shen, 2010). As prostate cancer becomes "molecularized" (Monteiro, 2009), its amenability to intervention is also transforming (Monteiro, 2011).

With a new, biomedical and techno-scientific approach to health and disease, control over bodily processes has been sought in ways unimaginable in the past. From increasingly precise interventions in the body, to the search for genes that would enable early diagnosis and even modeling of future behavior (Monteiro & Keating, 2009), control is at the center of how health is understood and practiced today. This effort to control bodily processes through increasingly sophisticated technology may, however, ignore the particularities of gender and masculinities, as discussed above. Nonetheless, an approach to prostate cancer that relies increasingly on techno-science to classify, diagnose, and surgically intervene can offer exciting new ways to approach the disease. Improving outcomes and enabling new methods for treatment and diagnosis will hopefully help circumvent some of the barriers towards self-care present in traditional masculinities, which usually see self-care as contrary to an ideal of the male body as impenetrable. New genetic tests could replace existing methods for examining the prostate, which many men find invasive. Establishing molecular bio-markers for prostate cancer that could reliably establish risk for the disease, for example, may enable early diagnosis, early treatment, and higher survival rates. Bio-markers would avoid, for example, uncomfortable examinations and unreliable prostate-specific-antigen (PSA) tests. However, an assumption of technological progress overlooks the many pitfalls such technology-based treatments could face. For instance, given discussion on the centrality of socio-cultural factors in explaining how men relate to their bodies and to health, it is not certain whether men will accept the idea of knowing in advance their risks for cancer. They may fear of loss of control over their health or fear becoming cancer "patients in waiting" at an early age before any cancer symptoms appear (Rajan, 2006). Mere

may include preventive care and other actions that may improve health or prospects for survival (Kimmel, 1995; Lohan, 2007). Control is also at stake in current medical interventions, where advances in genetics, nanotechnology and other fields potentially enable control over every bodily process (Channel, 1991; Hogle, 2005). Proponents of this "virile" [our emphasis] approach to health and disease, we argue, need to pay attention to the complexity of men's lived experiences and gender differences in order to enhance the

Control is a general trend in how health and disease are being tackled by modern, technoscientific medicine. The trend, called "bio-medicalization" (Clarke et al., 2003) describes how techno-science is becoming the dominant framework through which the concepts of health and the body are understood, as well as how health interventions are researched and used (Hogle, 2005; Lenoir, 2002a; Lenoir, 2002b). Bio-medicalization frames many health-related actions, from how we perceive the body visually, to the increasing use of technologies that make body interiors available for display and intervention (Taylor, 2005; Van Dijck, 2005), to ways of designing bodily interventions that are increasingly mediated by technology (Lenoir, 2004). This trend toward the incorporation of technology in health is increasingly evident as genetics becomes a dominant language to describe and understand diseases, including diabetes (Hedgecoe, 2002), cancer (Chung et al., 2002; Fujimura, 1996; Monteiro, 2009), and many others (Fullwiley, 2007). Not only has prostate cancer begun to be reinterpreted as a genetic disease, along with cancer in general, but the search is ongoing for genes to classify prostate cancer, diagnose it early, and refine surgical interventions (Shen & Abate-Shen, 2010). As prostate cancer becomes "molecularized" (Monteiro, 2009), its

With a new, biomedical and techno-scientific approach to health and disease, control over bodily processes has been sought in ways unimaginable in the past. From increasingly precise interventions in the body, to the search for genes that would enable early diagnosis and even modeling of future behavior (Monteiro & Keating, 2009), control is at the center of how health is understood and practiced today. This effort to control bodily processes through increasingly sophisticated technology may, however, ignore the particularities of gender and masculinities, as discussed above. Nonetheless, an approach to prostate cancer that relies increasingly on techno-science to classify, diagnose, and surgically intervene can offer exciting new ways to approach the disease. Improving outcomes and enabling new methods for treatment and diagnosis will hopefully help circumvent some of the barriers towards self-care present in traditional masculinities, which usually see self-care as contrary to an ideal of the male body as impenetrable. New genetic tests could replace existing methods for examining the prostate, which many men find invasive. Establishing molecular bio-markers for prostate cancer that could reliably establish risk for the disease, for example, may enable early diagnosis, early treatment, and higher survival rates. Bio-markers would avoid, for example, uncomfortable examinations and unreliable prostate-specific-antigen (PSA) tests. However, an assumption of technological progress overlooks the many pitfalls such technology-based treatments could face. For instance, given discussion on the centrality of socio-cultural factors in explaining how men relate to their bodies and to health, it is not certain whether men will accept the idea of knowing in advance their risks for cancer. They may fear of loss of control over their health or fear becoming cancer "patients in waiting" at an early age before any cancer symptoms appear (Rajan, 2006). Mere

approach's effectiveness.

**2.4 Control and the delivery of health care** 

amenability to intervention is also transforming (Monteiro, 2011).

knowledge that one carries genes that make one susceptible to cancer does not necessarily lead men to adopt preventive behavior. Indeed, it is clear that men avoid such behavior due to social expectations (Mahalik et al., 2007). Also, risks inherent in currently available prostate-cancer treatments are problematic for many men, in spite of any other considerations relating to their knowledge about preventing and monitoring cancer (Chapple & Ziebland, 2002).

When powerful trends to reinterpret health and disease in terms of new technologies (genetic or otherwise) dominate, researchers run the risk of ignoring the rich debate over socio-cultural factors that affect gender and health/disease. Although new technologies offer wonderful prospects for diagnosis and treatment, social factors such as gender, behavior, and culture should not be underestimated in terms of their contributions to understanding health and risk behaviors. Control, an attribute of hegemonic masculinity, is often associated with science and technology (two very male-dominated fields in some respects). This traditionally Western logic should be enriched with an understanding of how culture, society, and history explain health, disease, and treatment.

This debate about control, genetics, and technology is meaningful to social and health professionals who care for and advise men and their significant others throughout the prostate-cancer trajectory. Professionals should reflect on their beliefs about masculinity and prostate cancer, and their professional practice. Knowing that control is central to many men's experiences of masculinity, professionals should take a cautionary approach when presenting decision aids and discussing options about which they ask men to make immediate decisions. Caution is recommended mainly when men make decisions without professional guidance, because men may postpone reflection in favor of taking immediate action, thereby trying to demonstrate autonomy and willingness to decide. Men have been highly influenced by medicalization of erectile dysfunction in advertising for sexualperformance-enhancing drugs, advertising that focuses on the social importance of erections to virility. Therefore, professionals need to expand their understanding of the values and meaning that men attribute to diseases that threaten their sense of masculinity, and therefore their sexual and emotional health.
