Testicular cancer: passage through the help-seeking process for a Cohort of U.K. Men (Part 1).

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.

METHOD

We aimed to recruit men aged over 18 who had experienced testicular changes as part of their initial symptoms. This included men with either Seminoma (made up of primarily young germ cells, growing slowly, staying relatively immobile, and accoungint for 40 percent of testicular cancers) or Teratoma (consisting of cysts that contain one or more of the three main types of cells present in embryos--ectoderm, mesoderm, and endoderm cells) type cancers and a range of time lags in seeking medical help. No prior decision was made concerning the number of participants since we could not estimate when categories would become saturated in advance. We aimed to recruit a wide range of men in terms of sociocultural factors such as class, lifestyle, and employment as well as family and sexual orientation. This was possible to an extent, though with some lacunae that are discussed later. Analysis of interviews during the continuing research process was helpful in determining the number of participants that was sufficient to achieve this. As a consequence, 10 men who had experienced testicular changes and subsequently received a diagnosis of testicular cancer were recruited from an oncology centre in the West Midlands, a large conurbation in the U.K. The Consultant Medical Oncologist and the Macmillan Testicular Clinical Nurse Specialist at the centre recruited participants via a weekly clinic and obtained fully informed ethical consent. The second author (KL) contacted participants and offered further information about the research, and men were also encouraged to ask any initial questions they had about the interview.

The 10 participants ranged in age from 28 to 44 (see Table 1 for summary). Seven of the men had Teratoma type cancer, and three had Seminoma type cancer. The staging of the disease for the men ranged from stage I to stage IV, with two men experiencing metastases. Six men had started or were waiting for chemotherapy at the time of the interview, two men had started or were waiting for radiotherapy at the time of the interview, and the remaining two men were on surveillance. Initial testicular symptoms included swelling, aching, lumps, and a reduction in the size of the testicle or a hardness of the testicle. At the time at which testicular changes were noticed, five of the men were married while the remaining half were involved in long-term partnerships. Nine men were in relationships with women while one was in a relationship with a man. At the time of the interview, all remained in these relationships except one. At the time of testicular changes, all men were employed in a range of working environments although at the time of the interview two men were unemployed. Half of the men had children. The range of time from men's first noticing symptoms to first seeking medical attention ranged from one day to one year. The initial point of contact for all men after noticing testicular changes was their general practitioner.

The interviews lasted for between one and two hours and were tape-recorded and transcribed verbatim using transcript conventions outlined by Silverman (1997). Prior to beginning the interview, the researcher also sought to develop rapport with the participants through discussion of their present situation and treatment in accordance with Mathieson's (1999) suggestions. Semi-structured interviews began with a broad overall question inviting men to talk about the history of their symptoms, which then led to in-depth questions about how they felt and dealt with their symptoms, personal experiences of cancer, and issues of masculinity. Toward the end of the interview, there was an attempt to reduce the intensity and emotional level of the interview by offering men the opportunity, given their experiences, to talk about what would be helpful to other men in this situation and of how they felt testicular cancer awareness could best be raised (Rubin & Rubin, 1995).

The process of grounded theory (Charmaz, 1995; Strauss & Corbin, 1998) was made more manageable through systematic procedures outlined by Smith (l 995). In particular, we tried to ensure a close relationship between the developing model and men's descriptions of their experiences by a process of "constant comparison" in line with the need for theoretical sensitivity (Chamberlain, 1999; Glaser, 1992). We asked ourselves, "What is the chief concern or problem ... and what property of what category does this ... indicate?" (Glaser, 1992, p. 4). This involved multiple readings of the transcripts, thereby better defining and refining the categories so as to allow conceptual properties to emerge. Notes about many of the analytic processes, interview experiences, and research supervision were made throughout. These were used initially to look at individual transcripts, to generate further ideas as to the development of the interview schedule, and later to explore categories and similarities and differences in the data in the development of the final model.

THE PROCESS OF HELP-SEEKING

A key feature of the model was the emergence of a core category that could encapsulate the central phenomenon or main theme with the analytical power to "pull other categories together to form an explanatory whole" (Strauss & Corbin, 1998, p. 146). The core category of "Struggling with Fear of the Unknown" is highly linked to the three categories--"explaining testicular changes," "feeling justified in help-seeking," and "anticipation of exposure." In making this choice, we wanted to reflect how, while the main categories reflect discrete aspects of the process (though often nonlinear and recursive), the core category pervaded the emotional and narrative content of their stories. However, these categories capture the individualised, though consensual, accounts rather than broader sociocultural themes. Several such themes started to emerge rather later in the analysis and were also very relevant to the core category: "the meaning of cancer," "marginalisation," "perceptions of masculinity," and "taboos." Table 2 summarises these for clarity.

THE WHOLE STORY--"STRUGGLING WITH FEAR OF THE UNKNOWN"

Men struggled with powerful feelings of uncertainty and fear throughout the process of help-seeking. They felt uncertain with regard to the symptoms themselves, whether they could be sure that changes had occurred, what changes meant, and whether these changes were serious enough to warrant help-seeking or not. A degree of uncertainty frequently remained even once men had explained symptoms to themselves, whether those initial explanations included the possibility of cancer or not, and many veered back and forth from explanations of symptoms as cancer to definite assertions that they did not have cancer. Uncertainty also played a role in the decision to seek help. Most demonstrated a reluctance to seek help unless they felt certain that it was warranted. Men spoke of a need to identify one or more changes--a progression of symptoms, a crisis point, or the symptoms interfering with their normal functioning--as well as talking to partners and friends before help could finally be sought. Often men's uncertainty continued well past the point of both initial presentation to a general practitioner (the first point of contact in the U.K.) and subsequent medical consultation. Recognition by the physician that the symptoms required a specialist referral could reinforce men's feelings that the problem was serious and that help-seeking was correct. However, misdiagnosis threw two men back into uncertainty about whether to re-seek medical attention. Uncertainty manifested at a general level in men's stories, both in men adopting a "wait and see" approach and in a continuing hope that the symptoms "would just go away" and that seeking help and treatment would not be necessary.

Men's stories seemed to reflect their struggle to come to terms with the changes in their bodies, their uncertainty about these, and a search for explanation. The central theme of "dealing with uncertainty" seemed to pervade the entire experience of men seeking help for their testicular changes. The essence of this core category is perhaps best summed up by this reflection on the process:

   Finding the compromise is very, very hard. You can take so much
   for granted, like every sort of ache and pain or every time you bend
   over, you know, you feel something in your stomach or, urn, you
   know what do you do, do you keep going to the doctors [?] or do
   you just think it's something I've eaten [?] or [?...] I don't know.

CATEGORY: EXPLAINING TESTICULAR CHANGES

This category is related to the discovery of initial symptoms and the struggle to make sense of them. Men assessed their initial symptoms using their existing knowledge about potential testicular illness. At this point, most settled on more "benign" explanations of the symptoms and did not consider seeking help a priority. However, they continued to question their explanations, often "seesawing" between benign and malign--only a small minority seriously considering cancer. These two men sought help after one or two days (although one was subsequently thrown back into uncertainty following misdiagnosis). The majority described a period in which they had some intuition that a change had taken place but were considering whether they were mistaken and that the perceived changes were actually representative of how their testicles had always been. They were struggling with the question "What is normal?":

   I noticed that my right testicle is--er, was--er, larger than the
   other one and, um, you sort of go through this process. I think you
   sort of think, well, has it always been like that?

Another man similarly discussed his testicular changes with others and was temporarily reassured in his initial explanation that this was "normal," saying, "I did speak to a lot, a lot of people about it, and they said, 'Oh yeah, mine's bigger than the other.'" Following this two of these men went on to feel certain that there had definitely been a change, but again this was explained as part of a normal process of ageing, rather than anything indicative of a serious problem--just middle age ... old age. Most initially explained their symptoms in terms of other medical problems including strains, bruises, pinched tubes, varoceles, cysts, hernias, or infections. For two men there was a sense of having been led into a false sense of security as a result of previous medical problems. One described having had previous cysts in his testicle and how this influenced his interpretation of his symptoms as noncancerous and as not serious.

Knowledge. An essential element of the process of explaining symptoms was the nature of the initial symptoms themselves and the existing knowledge that men brought to the situation. Five men reported testicular swelling, three men mild aching around their testicles, one man a lump, and one man a reduction in the size and hardness of the testicle. Although one man was highly informed about testicular cancer, the remainder had either limited or no knowledge with regard to testicular cancer, in particular of its symptoms--"I didn't really think about cancer because I wasn't that much aware of it in the testicles." The limited knowledge that men had was not always useful and could often be misleading. Commonly, men had assumed that lumps and pain would indicate a cancerous growth and developed alternative explanations as a result of an absence of these initial symptoms:

   You must check for lumps, which is, it's about as much knowledge
   as I had.... If you've got a lump on your testicle, then you
   know, urn, you must go and see your doctor.... It's not a lump; it's
   like a swelling, you know; it's not what I exactly expected. It
   wasn't what I was led to believe I should be looking for.

Self-Protection. Men employed several self-protective strategies to deal with their testicular changes and what these might mean. They acknowledged a tendency actively to push away thoughts of cancer, preferring rather to "deny" or find other less threatening explanations or reasons why cancer couldn't happen to them. This need stemmed from a fear of cancer and perceptions of what this diagnosis would mean:

   Yeah, I had a funny feeling but then I was just sort of in denial....
   I didn't want to know.... I suppose I don't like to know the truth
   [from the doctor] I like to try and hide things if there's something
   wrong. I don't want to know about it. I just want it to go away.

As a result of their acknowledgment of deliberately avoiding information and suppressing thoughts about the potential seriousness of their symptoms, we returned to the data and reexamined codes such as "personal experience of cancer," "relevance of cancer," and "cancer as an older person's disease." These could also be seen as understandable ways of detaching oneself from the fear of a possible cancer diagnosis:

   My dad died of lung cancer ... and, um, I didn't really pay
   attention, to be honest, I mean, I obviously, it was my dad and all
   that, but I didn't know nothing about it.... I put it down to
   smoking cigarettes and a bit unfortunate to catch lung cancer.

Most men viewed it as an older person's disease, as irrelevant to them, and as something that "other people get."

CATEGORY: JUSTIFYING HELP-SEEKING

It was important for men to feel that their symptoms warranted seeking help and that they were not "blowing it out of proportion." One pivotal experience was sharing these dilemmas, usually with a partner but also with friends, and for some, their concern for their children. As symptoms progressed, concern and worry grew--sometimes to a crisis point, or to the point that the symptoms interfered with normal functioning.

The Role of Others. The process of telling partners, or having partners notice that something was wrong, served to "bring home" the problem, making it seem more serious or "real" and so worthy of attention. Partners were also helpful in that they always took men's symptoms seriously and viewed help-seeking as important. For men who did not tell partners, but rather waited until partners noticed, men noted wanting to protect their partner, wanting to remain "in denial," and also wanting to avoid the emotional impact that this would have on themselves. One of our participants talked of needing his male partner to move him out of his denial and desire to not know the truth, explaining that his partner "would have made [me] go to the doctors earlier."

Many partners were forceful and persistent where need be; in the reported words of one, "Go and see a bloody doctor tomorrow!" Another sums up the issue of having the decision made for him:

   I think it's just the case of the decision is made for them, the
   male, "You will go!" Not, "Do you think you should go?" It's, "You
   will [emphasised] go; listen, you have a problem."

Where the role of the partner was not a pivotal factor, men had already made up their minds, and sharing symptoms was purely an emotional support.

Four men also talked to friends and colleagues about their symptoms. Men described friends and colleagues as trying to "sort the problem" by guessing diagnoses or reassuring them that changes were normal. Unlike the experience with partners, men described having not always had their concerns taken seriously by friends and colleagues. This did little to enable men to begin to accept the potential seriousness of the symptoms. One said of talking to colleagues:

   It would be like a joke amongst us at first. "Oh, you've got a
   hernia; you've got a hernia." One guy [who] had already had a hernia
   ... said that what I was telling him was wrong with me ... was
   exactly the same as ... when he had a hernia.

Progression of Symptoms. Nine men experienced a progression of symptoms, but what was more important was their knowledge and perception of these changes. The symptoms causing serious concern were both lumps and significant pain. The progression of these symptoms was characterised by rising concern and worry so that men were less able to ignore the changes in their body:

   Then I noticed it was what ! would call a bit nobbly or craggy so
   there were lumps ... and at that stage that's when I started getting
   more concerned.

Four men specifically talked about waiting for or experiencing a crisis point such as physical collapse or unbearable pain. For almost all the men, a significant impact on health and lifestyle had occurred before presenting to a doctor: symptoms had affected work, sexual activity, sleeping, and family activities such as playing with children.

CATEGORY: ANTICIPATING EXPOSURE

This category related to the process of considering medical consultation. Many men confronted issues in preparing themselves for the process of medical consultation and overcoming the exposure and the vulnerabilities and uncertainty they felt. The focus at this stage was on the embarrassment of physical examination and what they felt about their physician. Most men felt embarrassed at having a private part of the body exposed to the touch of a stranger: "There's a stigma attached to it, basically getting your tackle out in front of a doctor." Another talked about preparing himself for the examination and for potential pain:

   I'd examined myself, and I'd squeezed it, and there wasn't any
   pain there at all, so I thought, well, I'm not going to let him do
   something I'm not prepared to do myself.

For other men there was embarrassment about being in the doctor's waiting room and feeling exposed to others' judgements.

One gay man initially considered that he might have a sexually transmitted disease, so felt that he might be judged by the doctor for this and for his sexuality:

   Because I'm gay ... because some people don't actually agree with
   it even though they have to professionally, they can't say anything
   about it, it's what's going on in their head and what they're
   actually thinking, and I know sometimes.... I'll probably think what
   are they saying, what are they thinking about me.

Doctors. Anticipating the consultation brought thoughts about their physician's characteristics and their relationship to them. Perceptions were very varied: most men suggested a male physician would be preferable, although this was not universal, and men also felt that their lack of a consistent relationship with a physician was an issue. As with the embarrassment of physical examination, these concerns were alleviated by their belief in doctors as "professionals" who are used to dealing with these kinds of problems. For most men their initial consultation resulted in a referral to a specialist for further investigations, and diagnosis and treatment was swift, although misdiagnosis occurred for a minority.

SOCIOCULTURAL FACTORS

The Social Meaning of Cancer. Men's stories suggested that the meaning of cancer for them was couched within wider societal attitudes and beliefs about cancer. Cancer remains a diagnosis that is characterised by fear, a belief that it is an automatic death sentence and stigma: "I burst into tears, saying, 'I don't want to die.'" Eight of the 10 men had relatives who had cancer: one of six to lose a relative to cancer reflected, "You get it, you die." Following their diagnosis, men came face to face with societal attitudes toward cancer: "I had people coming up to me saying, you know, basically saying, 'Shit, how long have you got to live?'" The stigma of diagnosis and treatment led to men being "typecast" by others as a result of having cancer. One perceived a stigma when meeting his doctor: "He was reluctant to mention the word" [emphasised].

Marginalisation. Men reported seeing little information relevant to them in physicians' surgeries, and they linked this to their own perception their health concerns were unjustified. For some men this contributed to viewing men's health as secondary or of little importance within society and that they, as men, should not be concerned with such issues. Several commented on a lack of available role models, noting that they did not feel the subject was taken seriously. Some men made explicit comparisons with breast cancer to emphasise these feelings of marginalisation and as a lesson to the future promotion of men's health.

   But testicular cancer isn't [the norm], so maybe it might be worth
   people looking at how breast cancer came to be socially acceptable.
   Let's look at how that happened and do the same with testicular
   cancer. Let's maybe hurry it up a bit so it's on the same sort
   of level.

Perceptions of Masculinity. Finding out information and seeking help was not seen as masculine. Instead, the "male" approach was to be independent and deal with problems on one's own, not to "make a mountain out of a molehill" and not to be concerned about health issues. A number of men felt that it was embarrassing to be seen to be accessing information: "But I can't imagine men reading them really [laughs] or wanting to be seen reading them." Another added: "That's like showing everybody else that you've got something wrong." Several men also made comments about traditional perceptions of male sex roles such as the "stiff upper lip" and seeing attention to one's health as "a weakness, admitting defeat." Another echoed this:

   Well, as far as I can understand, [a] man feels as if he's the
   provider, he's the strong one.... He's the one that looks after the
   female, so it's all right for a female to feel weak and vulnerable
   ... but for a man to do that, then ... he's admitting defeat.

Taboos. The taboos surrounding genital health and talking about testicles permeated the whole process of help-seeking: taboos affected knowledge, accessing information, feeling able to access support, and help-seeking itself. There may be many barriers to help-seeking for many different illnesses, but men felt that it was particularly difficult to talk about having something wrong with their testicles and to be taken seriously by others. Men sometimes felt that they would be mocked, and even the language that they used in interviews with the researcher and the laughter when talking specifically about their testicles indicated a difficulty in naming the problem specifically (although men were open and comprehensive in explaining their experiences). After diagnosis some men appreciated the humour that people used, feeling that it was supportive and enabled them to cope. However, prior to diagnosis this could be a difficulty clearly related to embarrassment:

   It's a comical word, isn't it [testicle]? For the first instance men
   find it comical, and they laugh like and the last thing they want to
   talk about.... I think men feel a lot more embarrassed about it than
   women do.

DISCUSSION

The core finding of the study was that feelings of uncertainty permeated the process of seeking help: as men attempted to explain symptoms to themselves, in their passage through the help-seeking process, and in being exposed to the scrutiny of the consultation. The issue of uncertainty has been noted in work on coping with illness once diagnosed and would also be relevant to the period prior to diagnosis. Charmaz (1997) talks of the way men deal with uncertainty and the need men have to "bracket" events that elicit uncertainty and so detach these from their lives in general. The men interviewed may have been attempting this in preferring "benign" explanations at first. Although this served to distance them from perceived risk, in reality this actually maintained their uncertainty as they continued to struggle with what their symptoms might mean. The role of partners and the progression of symptoms can be seen as the point at which "bracketing" was no longer possible.

Most men alternated between considering the possibility of cancer and ruling it out. This originated from a need to protect themselves from their disease and was also wrapped up in the meaning of cancer to individuals. Burton and Watson (1998) note that no one is wholly immune from the fear of cancer, often described as a disease that ravages silently from within, that is both part of the body but not part of the body. It is a state in which an individual's very existence is endangered (Nezu, Nezu, Friedman, Faddis, & Houts, 1998). Denial and detachment are basic mechanisms in dealing with stressful situations; and Kreitler (1999) specifically relates this to the experience of cancer, including the process of seeking medical attention. This was a mechanism used by all men at some level, whether by outright denial of the disease or emotional distancing from it.

OVERCOMING THE BARRIER OF SEEKING HELP

A common finding in studies of help-seeking suggests the importance of how symptoms are appraised. Our findings suggest that several features are important here, including men's knowledge (or lack of it) and their self-protective strategies. Both are grounded in their experience of themselves as men and their perceptions of illness as weakness. The role of partners went beyond encouragement and, together with other influences, actually enabled men to both feel justified in seeking help and keep important perceptions of masculinity intact. Others have similarly highlighted how "living up to images of masculinity" (Gascoigne et al., 1999, p. 152) influenced men's feelings about having a testicle removed. They also noted that it was difficult to know whether this represented feelings following orchidectomy, or feelings of anticipation about orchidectomy, which would then influence the help-seeking process. In this study men did not worry about future treatment during the decision-making process. Perceptions of masculinity in this model are still important but not in terms of feelings about losing a testicle--an obstacle later in the illness trajectory. At the point before diagnosis, men were immersed in concerns about what to do about their testicular changes, not potential treatment.

Norcross, Ramirez, and Palinkas (1996) note in their study the importance of women in men's healthcare-seeking behaviour, stating that men were 2.7 times more likely to be influenced to seek care by someone of the opposite sex than women. We found that both male and female partners had a pivotal role. Tudiver and Talbot (1999) used focus groups to explore doctors' opinions about why men do not seek help. Some of their findings coincide with issues raised in this study such as the importance of female partners (male partners were not considered); men's feelings of fear, denial, and perceived vulnerability; and social role characteristics such as viewing help-seeking as unacceptable for men.

MASCULINITY

Issues of masculinity were found to be highly important in this study. The normative male role and "male characteristics," although not fixed--though arguably somewhat rooted in biology--are constructed by cultures and so highly malleable. Harrison, Chin, and Ficarotto (1992) attempt to define various components of the male sex role that include the need to be superior to others, the need to be self-reliant and independent, and the need to be more powerful than others. Such sex role stereotyping can have negative connotations for some men (Forrester, 1986). More current thinking in this area has looked at the social construction of gender whereby "gender identity is actively worked out, revamped and maintained by individuals who are immersed in socially and historically constructed webs of power relations" (Sabo & Gordon, 1995, p. 7). Courtenay (2000) therefore notes the importance of acknowledging the many different types of masculinity and the need for awareness that different men find different ways of enacting masculinity. Health-related behaviours and beliefs may then be ways of actually constructing or demonstrating gender.

The two men that had the least difficulty with seeking help and with issues of masculinity were also employed in very traditional male-oriented environments--the army and the police force. It may be that these men felt secure in their perceptions of their own masculinity as a consequence, in turn meaning that they felt less vulnerable in dealing with the process of help-seeking. It is interesting that these men would have felt more vulnerable not asking for help, perhaps as a result of their employment relying, as it does, on teamwork and being able to access and listen to advice from seniors. For the two men who commented on difficulties with masculinity the most, one gay man felt that he needed to maintain outward stereotypes of masculinity in order to survive prejudice: he had been targeted before as a result of his sexuality. In retrospect, if greater diversity of sexual preference/orientation would have been sampled, we might have shed greater light on issues that may have been overshadowed by the predominantly heterosexual sample. White and Johnson (1998) note that in the gay community there is a struggle to be part of two cultures; the homosexual culture and the dominant hegemonic heterosexual culture--something seen in this man's story. The other man was the oldest in the group (age 44) and noted that stereotypical notions of masculinity had been part of his early experience although he felt that this was changing for younger men. As Oakley (1985) notes, if gender is socially constructed, it can also be deconstructed according to new cultural, political, or social ideals. Such deconstruction would be helpful in terms of removing the negative connotations associated with men being concerned about their health and help-seeking and at a broader level in dealing with the marginalisation of men's health issues.

It is important to note finally that in general men's stories did not incorporate explanations of emotions associated with their help-seeking process. Stories tended to be action-oriented rather than emotionally oriented, and this may have involved a denial of not only the potential seriousness of the problem but also the feelings associated with this. This could be seen as a general indication of the way men interact with others and the pressures of enforced sex roles, which may make it difficult for men to talk of emotional aspects of life events.

MEDICAL PERCEPTIONS AND SUGGESTIONS

Perceptions of medicine and medical practitioners played a major role in determining the anticipated consequences of help-seeking. Against a background of poor levels of knowledge about cancer in general and testicular cancer in particular, men found little information available and felt embarrassed both at visiting the surgery and at examination. Some felt doctors were embarrassed themselves about examination. The lack of an ongoing relationship with their doctor stood in the way of help-seeking, and most felt their health a marginalised issue receiving little attention from society or the medical establishment. Their comments bear out findings in the healthcare literature concerning gender and healthcare utilisation (Lahelma et al., 1999). The interview included asking men to talk about how they thought other men in similar situations could be helped and what would have been helpful for them at the time. They highlighted making information simple, accessible, and accurate (e.g., including information on curability rates, self-examination, and symptoms); using publicity campaigns that included relevant role models; and education programs in schools. They felt that there were many lessons to be learned from breast cancer and its higher profile in recent years.

POLICY IMPLICATIONS

The results suggest several implications for healthcare policies with respect to testicular cancer, and perhaps also other male cancers. Health education around the risks, debunking the myths, and demystifying illnesses such as testicular cancer are essential to improve early presentation rates: men clearly felt that had they known more at almost every stage this would have helped contain anxiety through what is an uncertain and stressful period. Nevertheless, however much information is disseminated, better cancer identification and treatment must be situated in a context of ongoing and sustained doctor-patient relationships that foster trust and consultation. It was not at all clear ahead of presentation to many men that physicians would not stigmatise or find the topic of testicular health taboo, though most were then relieved by their reception and specialist referral. An ongoing relationship with one's physician would presumably obviate this. Avoidance and embarrassment not only characterised "patients," but according to the men, also their physicians. While the wider culture of a perceived lack of masculinity in relation to medical consultation is difficult to change, it is imperative that this does not extend to the medical profession and indeed that the medical culture offers an alternative stance encouraging nonstigmatising access to all. Dissemination of research and review is, of course, part and parcel of influencing this culture.

Table 1
Summary of Participant Attributes

Age       Occupation        Disease   Relationship
                             stage       status

37    Local Govt. officer      I        Married
34         Bar owner          IV      Partner (F)
33        Electrician         II        Married
37    Pharmacy consultant      I        Married
29           Chef              I      Partner (M)
29          Florist           IV      Partner (F)
33      Police Officer         I      Partner (F)
44         Engineer           II        Married
40    Local Govt. officer      I        Married
28        Electrician          I      Partner (F)

Age       Occupation        Children     Time to
                                       help-seeking

37    Local Govt. officer     Yes         1 Day
34         Bar owner           No         2 Days
33        Electrician         Yes        1 Month
37    Pharmacy consultant     Yes        4 Months
29           Chef              No        6 Weeks
29          Florist           Yes        9 Months
33      Police Officer         No        5 Weeks
44         Engineer           Yes        3 Weeks
40    Local Govt. officer      No         1 Year
28        Electrician          No        1 Month

Table 2
Core Category: "Struggling with Fear of the Unknown"

                                                        Sociocultural
Main category             Subcategories                 themes

Explaining testicular     Knowledge                     Social meaning
                          Changes                       of cancer

Justifying help-seeking   Progression of symptoms       Taboos
                          Role of partners/dependents
                          Role of friends/colleagues    Marginalisation

Anticipating exposure     Embarrassment
                          Doctors                       Perceptions of
                                                        masculinity

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OLIVER J. MASON

University College, London

KATE STRAUSS

Kidderminster Hospital

Worcestershire, United Kingdom

Correspondence concerning this article should be sent to Oliver Mason, Sub-department of Clinical Health Psychology, University College London, London, England WCIN 3BG. Electronic mail: [e-mail].