Testicular cancer fact

Although there have been many studies in "patient delay" and help-seeking for cancer symptoms, these have tended to be focused on women and breast cancer. Few papers have investigated specifically male cancers and the help-seeking process. We interviewed 10 men who had experienced testicular changes and a diagnosis of testicular cancer. We analysed, using grounded theory methodology, the stories men told about their experience of testicular changes and the process of seeking help. The central unifying theme concerned how men faced and handled uncertainty. The theory suggested several steps whereby they sought to gain an explanation for testicular changes, justify seeking help, and anticipate exposing their fears to professionals. In so doing, men described several barriers founded in their own knowledge, perceptions, and assumptions about testicular cancer. We discuss several taboos surrounding testicular concerns, a range of issues related to masculinity and sexuality, and the role of physicians in the help-seeking process.

Keywords: testicular cancer, help-seeking process, "patient delay," grounded theory methodology, barriers to knowledge, taboo, masculinity, sexuality, physicians

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We believe that a greater research focus on the very early stages of testicular cancer is imperative and that, in particular, research is essential to understand how men seek help for testicular changes. The fact that some tumours can be aggressive and fast-growing requires these men to seek medical help as swiftly as possible. The largest studies of delay behaviour, disease-staging, and survival to date suggest that greater delay may compromise survival (Hernes, Harstad, & Fossa, 1996; Tavolini, Zuliani, Norcen, Dal Moro, Abatangelo, & Oliva, 1999). Men with slower-growing tumours are frequently at risk of delaying, and so compromising their survival. Early presentation to services is important across the spectrum, and it is important to understand the reasons why men delay presenting. Though hitherto a rather medicalised concept, "delay" is increasingly being understood in the light of psychological and social influences such as personality, attitudes to health and the body, gender, and race.

MALE GENDER AND HEALTH CARE UTILISATION

Until recently, studies of factors affecting patient delay and of the experiences of individuals with cancer symptoms in seeking medical help have been focussed on women and breast cancer. However, there have been a few notable exceptions looking at other types of cancer including the specifically male cancers (Chapple, Ziebland, & McPherson, 2004; Gascoigne, Mason, & Roberts, 1999; Sanden & Eriksson, 2000).

The concentration in the literature on healthcare with respect to breast cancer and the lack of research in specifically male cancers seems reflective of a general trend in the past within health research of a neglect of an understanding of men's health. Sabo and Gordon (1995) state that "professional scholars and researchers have been slow to study connections between gender and men's health and illness" (p. 4). One argument put forward by several authors has been that men's health status has been taken as the norm (Courtenay, 2000; Emslie, Hunt, & MacIntyre, 1999; Lyons & Willott, 1999; Watson, 2000). It has been assumed that men's behaviour is natural and inherent and that the focus therefore becomes the overutilisation of services by women rather than the underutilisation of services by men (Courtenay, 2000). Relative underutilisation is unlikely to be a uniform phenomenon for men or to have a singular or simplistic cause. The tendency to view men as "the norm" (and often a white, middle-class one at that) prevents them from being seen as "gendered beings" in their own right (Lyons & Willott, 1999) with all the variety and diversity that this implies.

Just how men come to have a pattern, however varied, of healthcare underutilization has increasingly been the subject of enquiry. One recent study of three U.S. national datasets (Marcell, Klein, Fischer, Allan, & Kokotailo, 2002), found men's health behaviour not to differ from females before the age of 16. However, after this age, a significant gulf opened up across all types of clinic, suggesting that young men do not make as successful a transition from school/parent-based healthcare provision to an adult model. This appears to persist across the lifespan since even in the presence of physical symptoms and poor physical health many men fail to seek medical attention. One German study of men aged over 50 identified that around 40% with moderate lower urinary tract symptoms did not seek help (Berges, Pientka, Hofner, Senge, & Jonas, 2001). Interestingly, only those who perceived the symptoms bothersome had sought out a physician. Even once diagnosed with serious illness, the pathway to treatment for males may differ as one study of digestive tract cancer illustrates: Mariscal, Llorca, Prieto-Salceda, Palma, and Delgado-Rodriguez (2002) found that, following diagnosis, male patients took longer to receive treatment, similar to those of a lower social class and those without access to a car.

STUDYING TESTICULAR CANCER

Several recent studies of those presenting with testicular cancer have highlighted important themes for at least some men (Chapple et al., 2004; Gascoigne et al., 1999; Sanden & Eriksson, 2000). From interviews with six men, Gascoigne et al. (1999) highlighted "symptom appraisal," "care seeking," and "living up to images of masculinity" as relevant. The latter included issues of not feeling whole and of feeling judged by other men. Sanden and Eriksson (2000) found that men tended to adopt a "wait and see" approach and felt embarrassed and confused about symptoms. Last, Chapple et al. (2004) found that those who sought help relatively quickly had heard about testicular cancer in the media, had seen leaflets in clinics, or knew others with this disease. Men who delayed feared appearing weak or lacking in masculinity or recalled past illness or painful examinations.

Surviving testicular cancer also has biomedical and psychological implications. Reviewing the literature, Fossa, Dahl, and Haaland (1999) have suggested that while quality of life is satisfactory for the majority, around a third suffer sexual dysfunction and infertility. More recent studies have suggested that psychological symptoms are often associated with issues about physical attractiveness and infertility (Rudberg, Carlsson, Nilsson, & Wikblad, 2002). The psychosocial consequences of a successful treatment outcome are quite a mixed picture. While one study found no overall poorer quality of life than case-matched controls, men did report a number of sexual life problems (Joly et al., 2002). These may have a greater impact than is apparent on standardised measures. In one Japanese study of successfully treated men (Arai et al., 2002), significant numbers reported greater anxiety about their health and future than before treatment, but few reported changes to relationships with their family, friends, and spouse. Again, whether questionnaire methods engender sensitive and accurate reporting of painful and embarrassing issues touching on sexuality and health is open to question. Fossa et al.'s (1999) call for prospective studies on the long-term consequences for those at increased risk of psychosocial problems remains a timely one.

MASCULINITIES AND HEALTH

The strong association of gender to health behaviour can lead to the unquestioned assumption that there are qualities, or indeed deficiencies, intrinsic to maleness or gender role somehow inherent in men. Consistent with this view are studies suggesting that gender-typed "masculine" men seek help less readily than "androgenous" men (e.g., Good, Dell, & Mintz, 1989; Nadler, Maler, & Freedman, 1984). However, as Courtenay has pointed out (2000), "the male sex role" is neither entirely socially prescribed nor singular--individuals "participate actively in sustaining and reproducing a variety of male 'roles' and the social structures that foster them" (p. 5). Understanding how these roles affect and are affected by symptoms and disease that threaten the very embodiment of maleness (to some) is crucial if we are to understand health behaviour better. As powerful social structures, medicine and the media exert a powerful reciprocal influence on the construction of masculinity. Both sets are likely to be relevant to how men represent their accounts of illness and helpseeking, however diversely they represent their multiple roles as engendered beings.

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