Men's experiences of sexuality after cancer: a material discursive intra-psychic approach

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This article was downloaded by: [University of Western Sydney Ward], [Ms Jane M. Ussher] On: 07 October 2013, At: 19:46 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK Culture, Health & Sexuality: An International Journal for Research, Intervention and Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/tchs20 Men's experiences of sexuality after cancer: a material discursive intra- psychic approach Emilee Gilbert a , Jane M. Ussher a , Janette Perz a , W.K. Tim Wong a , Kim Hobbs b & Catherine Mason c a Centre for Health Research, University of Western Sydney, Sydney, Australia b Department of Gynaecological Cancer, Westmead Hospital, Westmead, Australia c Psychiatry, Westmead Clinical School, Westmead Hospital, Westmead, Australia Published online: 08 May 2013. To cite this article: Emilee Gilbert, Jane M. Ussher, Janette Perz, W.K. Tim Wong, Kim Hobbs & Catherine Mason (2013) Men's experiences of sexuality after cancer: a material discursive intra- psychic approach, Culture, Health & Sexuality: An International Journal for Research, Intervention and Care, 15:8, 881-895, DOI: 10.1080/13691058.2013.789129 To link to this article: http://dx.doi.org/10.1080/13691058.2013.789129 PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content.

Transcript of Men's experiences of sexuality after cancer: a material discursive intra-psychic approach

This article was downloaded by: [University of Western Sydney Ward], [Ms Jane M.Ussher]On: 07 October 2013, At: 19:46Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registeredoffice: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

Culture, Health & Sexuality: AnInternational Journal for Research,Intervention and CarePublication details, including instructions for authors andsubscription information:http://www.tandfonline.com/loi/tchs20

Men's experiences of sexuality aftercancer: a material discursive intra-psychic approachEmilee Gilberta, Jane M. Usshera, Janette Perza, W.K. Tim Wonga,Kim Hobbsb & Catherine Masonc

a Centre for Health Research, University of Western Sydney,Sydney, Australiab Department of Gynaecological Cancer, Westmead Hospital,Westmead, Australiac Psychiatry, Westmead Clinical School, Westmead Hospital,Westmead, AustraliaPublished online: 08 May 2013.

To cite this article: Emilee Gilbert, Jane M. Ussher, Janette Perz, W.K. Tim Wong, Kim Hobbs &Catherine Mason (2013) Men's experiences of sexuality after cancer: a material discursive intra-psychic approach, Culture, Health & Sexuality: An International Journal for Research, Interventionand Care, 15:8, 881-895, DOI: 10.1080/13691058.2013.789129

To link to this article: http://dx.doi.org/10.1080/13691058.2013.789129

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all the information (the“Content”) contained in the publications on our platform. However, Taylor & Francis,our agents, and our licensors make no representations or warranties whatsoever as tothe accuracy, completeness, or suitability for any purpose of the Content. Any opinionsand views expressed in this publication are the opinions and views of the authors,and are not the views of or endorsed by Taylor & Francis. The accuracy of the Contentshould not be relied upon and should be independently verified with primary sourcesof information. Taylor and Francis shall not be liable for any losses, actions, claims,proceedings, demands, costs, expenses, damages, and other liabilities whatsoeveror howsoever caused arising directly or indirectly in connection with, in relation to orarising out of the use of the Content.

This article may be used for research, teaching, and private study purposes. Anysubstantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions

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Men’s experiences of sexuality after cancer: a material discursiveintra-psychic approach

Emilee Gilberta, Jane M. Usshera*, Janette Perza, W.K. Tim Wonga, Kim Hobbsb and

Catherine Masonc

aCentre for Health Research, University of Western Sydney, Sydney, Australia; bDepartment ofGynaecological Cancer, Westmead Hospital, Westmead, Australia; cPsychiatry, Westmead ClinicalSchool, Westmead Hospital, Westmead, Australia

(Received 26 September 2012; final version received 20 March 2013)

Men can experience significant changes to their sexuality following the onset of cancer.However, research on men’s sexuality post-cancer has focused almost exclusively onthose with prostate and testicular cancer, despite evidence that the diagnosis andtreatment for most cancers can impact on men’s sexuality. This Australian qualitativestudy explores the experiences of changes to sexuality for 21 men across a range ofcancer types and stages, sexual orientations and relationship contexts. Semi-structuredinterviews were analysed with theoretical thematic analysis guided by a materialdiscursive intra-psychic approach, recognising the materiality of sexual changes, men’sintrapsychic experience of such changes within a relational context and the influence ofthe discursive construction of masculine sexuality. Material changes included erectiledifficulty, decreased desire, and difficulty with orgasm. The use of medical aids tominimise the impact of erectile difficulties was shaped by discursive constructions of‘normal’ masculine sexuality. The majority of men reported accepting the changes totheir sexuality post-cancer and normalised them as part of the natural ageing process.Men’s relationship status and context played a key role managing the changes to theirsexuality. We conclude by discussing the implications for clinical practice.

Keywords: men; cancer; sexuality; sexual function; masculinity

Cancer is the second most common cause of death in men globally (Jemal et al. 2011). In

Australia, it is estimated that in 2012, over 68,000 new cases of cancer in men will be

diagnosed, with prostate, bowel, skin and lung cancer comprising the majority of these

diagnoses (Australian Institute of Health and Welfare 2012). A man’s risk of being

diagnosed with cancer by the age of 75 is one-in-three – a risk that increases to one-in-two

by the age of eighty-five (Australian Institute of Health and Welfare 2012). However,

advances in preventive screening and cancer treatments have led to a decrease in cancer

mortality rates over the past two decades, with men’s relative five-year survival rate for all

cancer types at 65% between 2006 and 2010 (Australian Institute of Health and Welfare

2012). This has led to an increased interest in quality-of-life issues for men with cancer,

with recent research examining, in particular, the quality of men’s sexual wellbeing post-

cancer.

Research examining men’s sexuality post-cancer has focused almost exclusively on

cancers that directly affect sexual and reproductive organs, including most commonly

prostate and testicular cancer (Danile and Haddow 2011; Jankowska 2012). Much of this

research has examined the physical effects of cancer on men’s sexual wellbeing and has

q 2013 Taylor & Francis

*Corresponding author. Email: [email protected]

Culture, Health & Sexuality, 2013

Vol. 15, No. 8, 881–895, http://dx.doi.org/10.1080/13691058.2013.789129

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shown that changes to sexuality are largely the result of the effects of cancer treatments

rather than the cancer itself (Ascencio et al. 2009). For example, following surgery for

testicular cancer, men have reported concern about loss of sexual functioning and fertility

(Carpentier and Fortenberry 2010; Tuinman et al. 2010). Men with prostate cancer have

reported that hormone therapy is like ‘chemical castration’ (Sanders et al. 2006, 505),

resulting in erectile dysfunction (Arrington 2008), diminished genital size, loss of muscle

tone, hot flushes and bodily feminisation (Navon and Morag 2003). Other treatments

reportedly result in loss of sexual desire, erotic dreams and sexual fantasies (Navon and

Morag 2003), decreased orgasmic sensation and bowel and urinary incontinence (Danile

and Haddow 2011). These sexual changes are not limited to men with prostate or testicular

cancer, with research demonstrating that men with colon, bladder, lymphatic and head and

neck cancers also experience a reduction in sexual interest and sexual activity, changes to

body image and feelings of sexual competency (Jonker-Pool et al. 2004; Salem 2007; Traa

et al. 2011), as well as erectile dysfunction and alterations to sexual self-esteem (Galbraith

and Crighton 2008). Such studies are, however, in the minority.

With a few notable exceptions (e.g., Bokhour et al. 2001; Gurevich et al. 2004),

research examining the impact of cancer on men’s sexuality has focused on men’s sexual

response cycle and sexual performance, with a particular emphasis on the ability to

achieve and maintain an erection for penile-vaginal penetration, men’s satisfaction with

the frequency of sexual activity and the level of men’s sexual ‘dysfunction’ post-cancer

(Wittman et al. 2009). However, the primary focus on the material effects of cancer on

sexual behaviour assumes that a man’s experience of sexuality is limited to its physical

dimensions, negating the influence of the social construction of sexuality and gender. In

addition, research on the relational context of cancer and sexuality has tended to be

heteronormative, assuming that men are in long-term, monogamous heterosexual

relationships, thus excluding the experiences of single and gay men (Ascencio et al. 2009;

Filiault, Drummond, and Smith 2008).

Research from a social constructionist paradigm has pointed to the importance of

acknowledging the profound ways in which socio-cultural discourses shape men’s

construction and experience of ‘normal’ and ‘abnormal’ sexual and gendered behaviour in

the context of cancer (Wall and Kristjansen 2005). This research has shown that the onset

of sexual changes impacts upon and often threatens masculine identity (Burns and

Mahalik 2007; Walsh and Hegarty 2010), with a loss of sexual function leading many men

to feel a change in their self-worth and manhood (Bokhour et al. 2001). In particular, men

with prostate cancer have reported that changes to their sexuality are an ‘invisible stigma’

(Fergus, Gray, and Fitch 2002, 311), prompting them to feel that they no longer live up to

social expectations of masculine behaviour (Cushman, Phillips, and Wasserug 2010). Men

have also reported that their sexuality is ‘fractured’ post-cancer due to the onset of ‘failed’

sexual performance and diminished desire and pleasure (Gurevich et al. 2004, 1602).

Many of these men see their manhood as ‘mutilated’ by erectile dysfunction (Hedestig

et al. 2005, 312), or position their sexuality as ‘troublesome’ because their sexual

performance has changed from its pre-cancer state (Ervik and Asplund 2012). In addition,

men have reported feeling as though they are failing in their intimate relationship post-

cancer, with erectile dysfunction seen as limiting the means by which they can ‘meet the

needs of their partner’ (Fergus, Gray, and Fitch 2002; Maliski et al. 2008, 1614).

It is well documented that for men, gender and sexuality are difficult to separate (Loe

2001), with men’s sexuality positioned as a symbolic expression of manhood (Fergus,

Gray, and Fitch 2002) and sexual activities linked with discursive constructions of gender –

in particular hegemonic masculinity (Wall and Kristjansen 2005). According to Connell

882 E. Gilbert et al.

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(1987), hegemonic masculinity is a set of prescriptive and symbolically represented social

norms that subordinate women’s activities and alternative forms of masculinity. A

phallocentric notion of male sexuality is central to hegemonic masculinity, with core

characteristics including aggressiveness, heterosexism, homophobia, misogyny and

physical and emotional strength (Potts et al. 2006). The ability to maintain an erection and

perform coital sex has been described as the essence of the male role (Tiefer 1994), with

boys learning early in life that their ‘manhood is tied to their penis’ (Zilbergeld 1992, 32),

a phallocentric conceptualisation of masculinity that is also adopted by gay men (McInnes,

Bradley, and Prestage 2009). The core characteristics of hegemonic masculinity are often

seen as incompatible with the onset of cancer, with the social construction of illness implying

weakness and loss of control, including the loss of control over continence and erectile

functioning following some cancer treatments (Gray, Fitch, and Fergus 2002; Maliski et al.

2008; Oliffe 2005). Thus, it has been argued that the onset of cancer problematises the

‘normally “silent” male body’ (Kelly 2008, 151), which becomes comprised of ‘troubled

masculinity’ (Loe 2001, 113) or ‘precarious masculinity’ (Gurevich et al. 2004, 1603) and is

often positioned in terms of its limitations and inability to function in its pre-cancer state

(Kelly 2008). As research has shown, men reportedly attempt to ‘manage’ the post-cancer

body by wearing loose clothing to camouflage bodily changes, concealing their sexual loss

by not discussing the issue with others and masking their loss of sexual desire by engaging in

flirtatious talk (Navon and Morag 2003).

Despite the potentially ‘problematic’ male body post-cancer, there is much evidence

that men with cancer attempt to adhere to hegemonic masculinity and phallocentric

sexuality. In their study of men with prostate cancer, Burns and Mahalik (2007) identified

three dominant masculine scripts that men adopted post-cancer, including: ‘self-reliance’,

characterised by the need to be independent, ‘emotional control’, in which men’s

expression of vulnerability is seen as weakness, and ‘male sexual potency’, in which the

penis, the initiation of sexual activity and the possession and exhibition of sexual desire are

considered the essence of manhood. Men’s adherence to these scripts often had negative

implications for their wellbeing. For example, these men positioned their post-cancer

sexual dysfunction and incontinence as sources of shame, attempted to manage them in

silence and ‘like a man’ without any support (see also Hedestig et al. 2005) and positioned

their failure to initiate sex because of low desire or erectile difficulty as ‘unmasculine’.

Other research has shown that for heterosexual men, losing the ability and desire to

perform spontaneous penile-vaginal intercourse meant that sex was no longer considered

‘real’ post-cancer (Arrington 2003). This ‘coital imperative’ as the central objective within

discourses surrounding masculine heterosexuality means that non-penetrative activities

tend to be positioned by men as secondary to ‘real sex’ (Potts 2002) – an imperative that

has an ‘uncritical endorsement’ from biomedical constructions of sexuality based on a

mainstream sexology focus on penetrative sex and the penetrative sexual response cycle

(Hyde 2007, 322). However, erectile problems also have the potential to significantly

impact on gay men’s relationships (Galbraith, Fink, and Wilkins 2011), suggesting the

coital imperative is not unique to the heterosexual context.

Research from a social constructionist paradigm has provided insight into men’s lived

experiences of sexuality after cancer and the ways in which socio-cultural discourses

shape the experience and interpretation of gendered sexuality. However, within this

paradigm, intrapsychic and intersubjective aspects of men’s experiences are often ignored

and the physical body is either positioned as the passive object of socio-cultural

constructions or it is absent from explorations of lived experiences of sexuality after

cancer (Gilbert, Ussher, and Perz 2011). In other words, the physical and emotional

Culture, Health & Sexuality 883

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dimensions of illness can get neglected in social constructionist accounts, where

constructions and meanings ascribed to symptoms are explored, rather than the materiality

of the illness, the functioning of the body and the impact on a person’s emotional

wellbeing and relationships.

In this paper, we adopt a material discursive intra-psychic perspective (MDI) (Ussher

2000), which acknowledges the materiality of sexual changes following cancer, men’s

intrapsychic experience of such changes within a relational context and the influence of the

discursive construction of masculine sexuality. Within this perspective, men’s sexuality is

not positioned as the product of biology, nor is it seen as static. Rather, the material body is

positioned as inseparable from men’s interpretations and experiences of cancer and

emphasis is given to how discourses stemming from medicine, psychology, religion, and

the media define and normalise men’s sexuality and the parameters of sexual experience

(Arrington 2000). We also acknowledge that there is a need for research into sexual

wellbeing after cancer to recognise the dynamic nature of masculinity and sexuality

(Maliski et al. 2008) and the variations in the ways in which men express their sexuality

across a range of cancer types (Gray, Fitch, and Fergus 2002; Wall and Kristjansen 2005).

A central part of recognising the dynamism and variability in masculine sexuality is the

acknowledgement that ‘our relationships and responses to bodies (our own and others) are

mediated by numerous culturally and historically shifting axes of social relations and

meanings, including gender, race/ethnicity, (dis)ability, age, class, etc.’ (Gurevich et al.

2004, 1598). Within this MDI framework, we address the following research question:

‘How do men with cancer, across a range of cancer types and stages, experience and

construct sexual changes after cancer?

Methods

The data presented in this paper are from the qualitative phase of a larger mixed-method

study examining changes to sexuality and intimacy for men and women with cancer, and

the intimate partners of people with cancer, across a range of cancer types and stages. In

this paper, we focus specifically on how men with cancer construct and experience

changes to their sexuality post-cancer, using in-depth semi-structured interviews.

Procedure

After receiving ethics approval from the University Human Research Ethics Committee and

from three Area Health Services, we recruited participants nationally through cancer support

groups, media stories in local press, advertisements in cancer-specific newsletters, hospital

clinics, local cancer organisation websites and in gay and lesbian community magazines and

newspapers. Participants completed an online or postal questionnaire examining their

experiences of sexuality and intimacy post-cancer. At the end of the survey, participants

indicated whether they would like to take part in an interview to discuss changes to sexuality

in more depth. Of the 582 survey respondents, 274 responded positively to the invitation.We

selected 79 for interview: 44 people with cancer (23 women, 21 men) and 35 partners in an

intimate relationship with a person with cancer (18 women, 17 men), representing a cross

section of cancer types and stages, gender and sexual orientation, reflecting the larger study

population. Participant demographics are illustrated in Table 1.

Semi-structured in-depth interviews were conducted on a face-to-face or telephone

basis, by a man or woman interviewer. A third researcher read all of the resulting

transcripts, finding no discernable difference between interviews conducted by the man or

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woman interviewer. The interviews were audio-recorded, lasted approximately one hour

and conducted at a venue convenient for the participant, with a small financial

reimbursement for interview-incurred expenses offered. Prior to the interview, participants

were sent an information sheet and consent form to read and sign, as well as a list of the

interview topics. The topics included: changes to sexuality and intimacy; emotional

reactions to such changes; partner responses; support received from family, friends or

health professionals; and renegotiation of sex and intimacy. Sampling was discontinued

when information redundancy was reached and no additional information was forthcoming

in three consecutive interviews. All of the interviews were transcribed verbatim.

Analysis

The analysis was conducted using theoretical thematic analysis (Braun and Clarke 2006),

with the data coded inductively and the development of themes being driven by a

theoretical interest in the material discursive intra-psychic aspects of men’s sexuality

post-cancer. To begin the analysis, a subset of the interviews was independently read by

members of the research team in an ‘active way’ (Braun and Clarke 2006, 87) to search for

Table 1. Participant demographics.

Variable Number / mean (range)

Age 59.8 yrs (20–77)EthnicityAnglo-Australian 20Aboriginal-Australian 1

Relationship statusSingle 4Partnered 17 (average duration

25 yrs, range 1–51 years)Sexual orientationHeterosexual 16Gay 5

Cancer typeProstate 11Leukaemia 1Bowel 2Multiple myeloma 1Bladder 2Brain 4

Years post-diagnosis, 2 32–5 135–10 420 1

Treatment receivedSurgery 18Chemotherapy 8Hormone therapy 5Radiotherapy 5

Current cancer statusCured 13Stable/monitoring 4Receiving treatment 4

Culture, Health & Sexuality 885

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meanings and patterns in and across the data. We then re-read all the interviews to generate

initial codes including: ‘the effects of medication and treatment’, ‘sexual and bodily pain’,

‘difficulty with orgasm’, ‘lack of spontaneity’, ‘erectile difficulty’, ‘decreased desire’, ‘the

natural ageing process’, ‘depression’, ‘anxiety and stress’ and ‘acceptance and adapting to

change’. The entire data set was then coded using NVivo, a computer package that

facilitates organisation of coded qualitative data. All of the coded data was then read

through independently by four members of the team. Codes were grouped into higher-

order themes, a process that involved checking for emerging patterns, variability and

consistency and making judgements about which codes were similar and dissimilar. The

higher-order themes relevant for this paper are: ‘physical changes’, ‘sexual

response/performance changes’, ‘sexual self’, ‘emotional changes’ and ‘relational issues’.

The thematically coded data was then collated and reorganised through reading and re-

reading, allowing for a further refinement and review of themes. A number of themes were

collapsed into each other and a thematic map of the data was developed. In this final stage,

four central themes were developed: (1) ‘Material changes to sexuality: the effect of

cancer treatments’, (2) ‘Discursive constructions of sexuality: erectile difficulty prevents

“normal” sex’, (3) ‘Intra-psychic changes to men’s sexuality’ and (4) ‘Relational context

of changes to sexuality’.

To illustrate the construction and experience of sexuality post-cancer in men, we

provide participant pseudonyms, as well as information on age, cancer type and stage and

identification as gay or heterosexual. Where there are differences across the men’s

experiences, these are reported. Demographic information is provided for longer quotes

but is omitted from shorter quotes to enhance readability.

Findings

Material changes to sexuality: the effect of cancer treatments

Erectile difficulty was the most common sexual change reported by participants, with

those aged 65–69 years and in the early stages of their cancer journey most likely to

provide accounts of such changes. Some of the men reported experiencing a complete loss

of erection following diagnosis and treatment, as Frank said, ‘we were making attempts to

do it but I couldn’t get an erection, couldn’t do anything there’ (72, heterosexual, bladder

cancer). Gerald has not ‘had an erection for nearly 12 weeks, and it’s impossible for me to

get one’. He went on to say that it is ‘not that I don’t want it, it’s just that I can’t get a raise.

I can’t even form an erection, I try but there’s nothing that comes’ (65, gay, brain cancer).

Other men, such as George, talked about still being able to achieve an erection following

treatment, but that the ‘hardness of the erection’ was compromised and ‘the ability to have

a proper erection or an effective erection just sort of went away very quickly’ (68,

heterosexual, multiple myeloma and prostate cancer).

A lack of sexual desire was also commonly reported by the men, with accounts

including: ‘within two, three, four weeks the libido was virtually disappeared’, ‘from the

outset, I lost the desire to be intimate, I couldn’t do it’, and ‘I don’t have any inclination’.

As Alf explained, ‘the initial wish is not there you see. You don’t really want to it’s just,

it’s just like you have no desire to be sexual’ (57, heterosexual, prostate cancer) and for

Frank, ‘now there’s nothing, nothing there. Really I don’t have any great desires for it’.

Gerald talked about being ‘turned off totally from all sexual habits’. Although he reported

having ‘twinges of sexual desire’, these ‘don’t last long’, and he ‘couldn’t be bothered . . .

couldn’t be interested at all’ in being sexually intimate because ‘from the outset, I lost the

desire to be intimate, I couldn’t do it’.

886 E. Gilbert et al.

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For the majority of men, the loss of desire was positioned as the result of radiation,

chemotherapy and hormone therapy, which meant that ‘a lot of the excitement and

pleasure of sexual intercourse has gone’ and ‘I went from a very healthy man to almost an

invalid sort of thing’. For Stuart, radiotherapy resulted in ‘the end of an active physical,

sexual life . . . I’ve lost the urge to have sex, I’ve lost the ability to have decent orgasms’

(60, gay, prostate cancer). According to Nick, ‘I noticed that I really didn’t have any libido

or any interest in sex, which was really unusual for me . . . it’s not normal . . . so you know

whether it’s a side-effect of the chemo I’m not sure’ (44, heterosexual, brain cancer).

A minority of men also reported pain during orgasm: ‘it was actually quite painful for

me to have an orgasm, and sometimes it still is . . . when you find an orgasm painful, and

you don’t really want to have sex, you lose interest’ (Stuart) and ‘when I actually climaxed

I got a headache . . . it certainly wasn’t a pleasant sensation’ (Mike, 69, heterosexual,

prostate cancer). Participants also reported genital shrinkage, an inability to orgasm and a

loss of ejaculate.

Discursive constructions of sexuality: erectile difficulty prevents ‘normal’ sex

Despite the onset of erectile difficulty, many men reported still being able to achieve an

erection, predominantly with the assistance of erectile dysfunction medication or other

aids such as penile pumps and injections. For example, Alf said he ‘can still get an erection

but I have to take Viagra’ and Kevin said, ‘thankfully to modern science nowadays it was

just a mechanical ability to overcome it with the use of pills and things’ (63, heterosexual,

prostate cancer). Whilst the use of medications and devices for erectile difficulty meant

that these men could continue to engage in coital sex, they did not always lead to

‘sufficient rigidity’ or a ‘proper erection’, as Kevin explained below:

There has to be tablets taken so forth, to be able to get the erection. . . . It hasn’t totallydisappeared, it’s just, inability to be able to use it because you just can’t get the full rigidity orget sufficient rigidity to be able to make it functional.

Lacking ‘sufficient rigidity’ was also considered a problem by other men, including Mike,

for whom sex had become ‘sort of half baked’ where ‘even if I got an erection it was hardly

big enough to use’ and George, whose experience of ‘a partial erection’ rendered it ‘not

hard enough to have normal intercourse’.

Medications and other devices also meant that post-cancer sexual activity lacked

spontaneity and has ‘gotta be a plan in motion now’ with ‘the ability to be able to respond

to one another’ compromised. Brian, who uses penile injections, discussed this lack of

spontaneity and described the potential for awkwardness with this device:

That’s one of the awkward things about this, if you’re in that situation, if you’re sleeping withsomeone and making love to them, say, every night, then the routine is, if you’ve got to useinjection, you’ve really got to leave the room. So there’s this little interruption. There’s no,there’s no secret about what’s going on. (71, heterosexual, single, prostate cancer)

George, who also used penile injections, mentioned that it that ‘was a bit of a challenge’ in

a relational context. As he said, ‘injecting myself didn’t really worry me that much. It was

just the thought of it sort of put my wife off. She said, “I wouldn’t like you sticking a

needle in your penis”’.

Intra-psychic changes to men’s sexuality

Very few men reported that sexual changes negatively impacted upon their sense of

manhood. Equally, only a minority of the men reported that changes to their sexuality

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prompted feelings of depression, anxiety and stress. For some of these men, including

Brian, after trying ‘all sorts of techniques’ and ‘realising’ that ‘you’re not going to be able

to have natural erections’ it felt as if ‘the door’s been slammed shut, it’s a fairly critical

time’. The experience of this depression, anxiety and stress was positioned, in turn, as

‘interfering’ with the ability to be sexually active, as Nick said, ‘there are times when you

just definitely don’t feel like sex, because, you know, you’re stressed or worried’. He went

on to say that, ‘I think I had certainly a lot more anxiety, which sometimes interfered with,

you know, getting and maintaining an erection’ (44, heterosexual, brain cancer).

The majority of the men, however, reported that they had accepted the changes to their

sexuality and had reconciled them as part of the natural ageing process. Whilst the inability

to ‘to perform in the same way’ was considered by some of the men as ‘a bit of a challenge’,

‘all-in-all’ the changes were described as ‘not too bad’ because, ‘you accept them andmove

on’. As Stuart told us, sexual intimacy is ‘barely a part of our relationship anymore. I mean,

that may have something to do with getting older, I am 60’. Similarly, George explained

that for him, the changes to sexuality are not ‘a major problem’ due to his age:

No, I can pretty much honestly say that, yeah. You’re naturally disappointed that you can’tsort of perform as you used to [chuckles], but you know it’s not a major problem with me sortof, as I say, getting on towards the, into my 70s anyway.

Men’s acceptance of cancer-induced changes to sexuality was made easier through a

positioning of their pre-cancer self as ‘very’ sexually active – comprised of virility and

a strong libido. This positioning arguably renders the loss of sexual performance less of a

threat to masculinity because the pre-cancer self is seen as having once adhered to

hegemonic masculinity and phallocentric sexuality. For example, men described that: ‘I

have been fairly sexually active all through my life’ and ‘my libido has always been very

strong through all my life’. Other men, including Alf, reported that:

It has not made me unhappy because I mean, with the history of my sex life, I really had mysex and in that sense the libido was already slowing down obviously. I’m 58 so it’s on the waydown. I was very pragmatic about this.

Relational context of changes to sexuality

Relationship status and context played an important role in men’s adaptation to the

material and intra-psychic changes experienced post-cancer, as well as the negotiation of

discursive constructions of masculine sexuality. A few men talked about a lack of partner

support where ‘the relationship has gone downhill to the point where we’re like flatmates

in the same house’ (Eric, 62, heterosexual, bowel cancer). Some of these men reported that

their partner ‘sort of blamed me for getting it as if it was my fault’ (Ewan, 64, heterosexual,

prostate cancer) or felt that their partner ‘didn’t fully understand the situation from my

point’ (Roger, 53, heterosexual, prostate cancer). In addition, some partnered men

expressed concern and fear about their partner leaving them or becoming dissatisfied with

their lack of ability to sexually perform. As Alf described, he and his partner ‘had several

discussions’ about the changes to his sexuality, during which he reported saying to his

partner, ‘I would understand if you were to perhaps have sex with somebody else.’

Similarly, a few men single men expressed concern about the ‘hurdle’ of telling a new

partner about their sexual difficulties. For example, ‘having to use injection therapy’,

Brian said that:

I find it hard. . . . How do you tell a lady that you’ve got this problem? . . . How to tell themthat first conversation saying, ‘Look, if we’re going to become lovers, there’s this littleproblem to get over,’ that holds me back. I’m sort of nervous about approach – it’s hard

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enough to hit it off with a new lady anyway for me, I’m a relatively shy person, this is yetanother obstacle.

However, most of the partnered men talked about having a high level of partner

support, with accounts including: ‘he’s very understanding’, ‘my wife’s understanding has

been a big thing in it’ and ‘she was very supportive during that period’. According to these

men, their partners often said that changes to their sexuality ‘didn’t matter’ because all

they ‘wanted was for you to get well’. For example, Nick’s partner ‘understood that I

wasn’t going to feel particularly sexual’ and that when he ‘told her how he felt’ ‘there was

never any pressure to perform or anything’. George explained that whilst ‘there probably

would be people in other relationship situations where you could be made to feel quite,

quite inadequate and quite lousy about yourself you know’, he still feels ‘quite, ah, you

know sort of manly’, which he attributes to the ‘confidence, love, whatever else that my

wife has been able to sort of support me with you know’. Harry also reported being ‘lucky’

because he has a ‘very good understanding partner’ who ‘didn’t get upset if it didn’t work’,

‘made me feel that I was okay’ and never ‘made me feel inadequate’ (68, gay, prostate

cancer).

Many of these men also reported experiencing a lack of sexual pressure from their

partner. For example, Dennis reported that ‘my wife doesn’t pressure or anything like that

and we roll along as what comes along, comes along more or less’ (68, heterosexual,

bowel cancer). Similarly, Gerald’s partner ‘waits for me to approach him rather than him

put his desires on me’ and ‘he doesn’t pressure me anymore and I’m grateful for that’.

Discussion

The findings of the present study support and extend existing research on men’s sexuality

following cancer. In particular, we demonstrate that changes to sexuality are not limited to

men whose cancer is located in a ‘sexual site’ of the body, but are also significant for men

across a range of cancer types, including multiple myeloma, leukaemia and brain, bladder

and bowel cancers. These changes occur both at the material and intra-psychic level and

are shaped by the discursive construction of masculine sexuality and men’s relationship

context. Confirming previous research in this area, we found that the primary

material/physical changes to men’s sexuality were erectile difficulty (Danile and Haddow

2011) and a loss of sexual desire (Wittman et al. 2009) – where the loss of desire was

particularly attributed to cancer medication and treatment (Ascencio et al. 2009). A

minority of men also reported difficulty with orgasm, including painful orgasm, an

inability to orgasm and a loss of ejaculatory capacity, confirming previous research

(Danile and Haddow 2011).

As other research has shown, many men feel strongly about preserving their sexual

functioning post-cancer (Kelly 2004) and often go to great lengths to maintain their ability

to achieve an erection (Arrington 2003), including choosing treatment procedures that

have the least impact on their sexual functioning, as well as medical interventions to

maintain erectile performance (Arrington 2000; Hedestig et al. 2005). However, as the

men in the present study indicated, the use of oral medications and other devices does not

always result in ‘sufficient’ penile ‘rigidity’, leading to a lack of sexual spontaneity, with

resultant sexual activity positioned as either ‘half-baked’ or diverging from ‘normal’ sex.

These reports of dissatisfaction with medical interventions support previous reports of sex

aids not being effective in the context of prostate cancer (Arrington 2003; Bokhour et al.

2001; Oliffe 2005), with some men responding negatively to their ‘artificiality’ (Rosen

1996, 502) and others positioning them as more trouble than not (Loe 2001).

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That the men in the present study position an erection as central to sexuality and draw

upon a range of medicalised resources to achieve this erection is perhaps not surprising.

There are important discursively constructed cultural meanings that have been attached

to male impotence. As Zilbergeld (1992) has pointed out, men are encouraged to adhere

to a ‘fantasy model of sex’ in which a firm erection is seen as fundamental to satisfying

sex, with ‘performance’ difficulties signifying either a loss of masculinity or a loss of

sexual interest in the partner. In addition, the dominant approach to treating erectile

dysfunction is a biomedical one, with the ‘rise of the pharmacology of sex’ (Loe 2001,

98). Indeed, it has been argued that ‘as male bodies digress from “normal” (erect

and penetrating) sexuality, techno-scientific advances promise to “fix” the problem’

(Loe 2001, 97) and repair and reproduce hegemonic masculinity and phallocentric

sexuality. Thus, discourses stemming from medicine and popular culture promise men

that their erectile dysfunction is preventable and reversible (Cushman, Phillips, and

Wasserug 2010).

Whilst a minority of the men positioned the changes as negatively impacting upon

their emotional wellbeing, as reported by previous research (Carpentier and Fortenberry

2010; Tuinman et al. 2010), the majority reported having accepted the changes to their

sexuality and reconciled them as part of the natural ageing process. It is noteworthy that

although some younger men participated in the study, the average age of the men was

almost 60. A younger group of men may not have been reconciled to accepting the post-

cancer changes as part of the ageing process, as has been reported in previous research

(Carpentier and Fortenberry 2010). Nonetheless our finding resonates with Sheehy’s work

on understanding men’s passages in which she describes men as progressing from ‘racing

car sex’ in their 20s to ‘snuggling sex’ in their 70s, where ‘instant gratification’ is replaced

by ‘touch and tenderness’ (Sheehy 1999, 184).

A small number of other studies also identify this issue. For example, some men with

cancer reportedly consider the link between sexual activity and their masculine sexual self

less important as they age (Ascencio et al. 2009; Betero 2001). Others downplay the value

of sex as they age (Arrington 2003), with the positioning of changes to sexuality as part of

ageing a strategy to explain and normalise such changes (Maliski et al. 2008). The

normalisation of such changes as part of ageing and the life-cycle means that a loss to

sexuality can be seen as less significant and threatening to masculine identity (Maliski et al.

2008). However, conversely, implicit in some men’s accounts of sexuality post-cancer is

the idea that older people are not, or should not be, sexual beings (Arrington 2003). Whilst

it is well documented that many people experience some diminishment in their sexual

activity and desire as they age (Gott and Hinchliff 2003), this is not the case for all people,

with evidence that many continue to enjoy sexual activity in their older years (Rheaume

and Mitty 2008).

These accounts of men’s acceptance of sexual changes after cancer point to the

dynamic nature of masculine sexuality and the need to recognise that men do not passively

conform with hegemonic masculinity and phallocentric sexuality (Gray, Fitch, and Fergus

2002). Rather, these men actively construct masculine sexuality, with their accounts

highlighting the ways in which gendered sexuality can change over time and context

(Kimmel 1996), with life-stage/age and relationship context especially important for the

(re)negotiation of sexuality. Like Gray, Fitch and Fergus (2002, 59), we are not suggesting

that these men have ‘transformed’ hegemonic masculinity, but the men’s accounts point

towards a contestation of hegemonic masculinity and phallocentric sexuality, with the

post-cancer experience of the male body not necessarily considered problematic or

characterised by ‘troubled’ or ‘precarious’ masculinity.

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Finally, relationship status and context was central to men’s negotiation of the material

discursive intra-psychic issues to sexuality post-cancer. A minority of partnered men

experienced a lack of partner support and some men reported concern about their partner

leaving them. In addition, some of the single men reported concern about telling a future

partner about their sexual difficulties – an issue that to date has largely only been reported

in studies of single gay men (Ascencio et al. 2009). However, the majority of partnered

men in the present study, in both gay and heterosexual relationships, reported very high

levels of partner support and understanding. As other research has shown, partner support

is key to the cancer recovery process (Galbraith, Fink, and Wilkins 2011; Sanders et al.

2006; Tuinman et al. 2010) and, as the results of the present study show, such support is

also key to men’s ability to manage changes to their masculine sexuality post-cancer. Such

a finding points to the need to move away from focusing simply on the individual with

cancer and include partners in studies on men’s sexuality post-cancer – a population that

many studies neglect, thus negating the intersubjectivity of changes to sexuality post-

cancer.

The limitations of the present study include the self-selected nature of the sample,

which may preclude those experiencing more difficulties with sexual changes post-cancer

or those for whom sexual changes are not an issue, and the cross-sectional nature of the

data collection. Further research is needed to examine sexual changes in diverse

populations of men with cancer, examining changes across time. The strengths of the study

are the inclusion of a range of cancer types and stages, the inclusion of non-heterosexual

men and the adoption of a qualitative methodology, which allows for the examination of

subjective experience. Further research is needed to systematically examine common-

alities and differences across cancer types, as well as sexual changes and associated needs

for support and care, for gay and bisexual men with cancer (Cartwright, Hughes, and

Lienerta 2012; Filiault, Drummond, and Smith 2008),

The findings of the present study have implications for the conceptualisation of

masculine sexuality across a range of cancer types, stages and sexualities and for

clinicians and health professionals working in oncology. In particular, many men with

erectile difficulty following treatment for cancer try to achieve and maintain an erection

via medication and other devices and often hold the expectation that these strategies

will ‘work’. However, it is important that health professionals inform men that such

strategies are not always successful, nor is their outcome necessarily the fantasy model

of sex they are promoted as promising. As research has shown, many men with cancer

quickly abandon the use of aids to assist with erectile difficulty (Congalen and

Congalen 2012). However, there is little research about why this is the case and the

strategies that men may adopt in order to maintain sexual intimacy within their

relationship (Beck, Robinson, and Carlson 2009). Such research is needed. Given our

finding that many men are engaged in constructing a variety of masculine positions in

relation to their sexuality post-cancer – shaped by life-stage and relational contexts –

health professionals should not assume that all men want and need phallocentric sex.

Indeed, it has been found that men with cancer can resist the coital imperative and

actively renegotiate their sexual activities to include practices typically considered

secondary to coital sex – with such practices positioned as ‘better’, ‘enjoyable’ and

‘satisfying’ (Ussher et al. 2013). In this way, it has been suggested that health

professionals could begin by identifying which ‘masculine scripts’ are important for

their patients (Burns and Mahalik 2007), and from there either normalise men’s fears

about changes to their sexuality, encourage men to explore and adopt a range of flexible

sexual and intimate practices or normalise men’s acceptance of sexual changes.

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Including partners in such discussions about sexuality may be key to facilitating the

kind of relational support and understanding that many of the men in the current study

experience.

Acknowledgements

This research was funded by an Australian Research Council Linkage Grant, LP0883344, inconjunction with the Cancer Council New South Wales and the National Breast Cancer Foundation.We received in-kind support from Westmead Hospital and Nepean Hospital. The chief investigatorson the project were Jane Ussher, Janette Perz and Emilee Gilbert and the partner investigators wereGerard Wain, Gill Batt, Kendra Sundquist, Kim Hobbs, Catherine Mason, Laura Kirsten and SueCarrick. TimWong was a research officer employed on the project. We thank Caroline Joyce, EmmaHurst, Anneke Wray and Jennifer Read for research support and assistance.

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Resume

Les hommes peuvent connaıtre des changements significatifs de leur vie sexuelle apres l’apparitiond’un cancer. Pourtant, bien qu’il soit prouve que le diagnostic et le traitement de la plupart descancers peuvent avoir un impact sur la vie sexuelle des hommes, les recherches dans ce domaine seconcentrent presque exclusivement sur les hommes atteints du cancer de la prostate ou de celui destesticules. Cette etude qualitative australienne explore l’experience des changements de vie sexuelleparmi vingt et un hommes atteints de cancers de types et de stades differents, leurs orientationssexuelles et les contextes de leurs relations. Les entretiens semi-structures ont ete analyses dans uneapproche theorique et thematique, basee sur un modele intrapsychique-discursif-materiel –reconnaissant la materialite des changements de vie sexuelle, l’experience extra-psychique deshommes concernant ces changements dans un cadre relationnel, et l’influence de la constructiondiscursive de la sexualite masculine. Les changements materiels comprenaient les dysfonctionserectiles, la baisse de l’appetit sexuel et les troubles de l’orgasme. L’usage des moyens medicauxpour minimiser l’impact des dysfonctions erectiles a ete determine par les constructions discursivesde la sexualite masculine « normale ». La plupart des participants a l’etude ont declare avoir accepteles changements de leur vie sexuelle suite a leur cancer et les avoir normalises en les assimilant auprocessus de vieillissement naturel. Le statut des relations de ces hommes et le contexte jouaient unrole cle dans la gestion des changements de la vie sexuelle. La conclusion de notre article est unediscussion sur les implications de nos resultats pour la pratique clinique.

Resumen

Tras la aparicion de cancer, los hombres pueden experimentar cambios significativos en susexualidad. Sin embargo, las investigaciones realizadas hasta el momento en torno a lasmodificaciones de la sexualidad de los hombres en la fase postcancer se han centrado casiexclusivamente en aquellos que han padecido cancer de prostata o cancer testicular, aun cuando la

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evidencia existente indica que tanto el diagnostico como el tratamiento de la mayorıa de los tipos decancer pueden tener impactos en la sexualidad. El presente estudio cualitativo examina las vivenciasrelativas a los cambios en la sexualidad experimentados por 21 hombres australianos que reportaronsufrir varios tipos de cancer, diferentes etapas del mismo, ası como tener distintas orientacionessexuales y diferentes contextos en sus relaciones. Las entrevistas semiestructuradas se estudiaronempleando el analisis tematico teorico, guiado por un enfoque material-discursivo-intrasıquico (mdi)—que implica el reconocimiento de la materialidad de los cambios sexuales, de las experienciasintrasıquicas de tales modificaciones en los hombres dentro de su contexto relacional, ademas de lainfluencia de la construccion discursiva de la sexualidad masculina. Se constato que los cambiosmateriales incluıan dificultades erectiles, disminucion de deseo y dificultad para alcanzar el orgasmoy que el uso de ayudas medicinales para minimizar el impacto de las dificultades erectiles fuemoldeado por las construcciones discursivas de la sexualidad masculina “normal”. La mayorıa de loshombres manifesto haber aceptado los cambios de su sexualidad postcancer, normalizandolos comoparte del proceso natural de envejecimiento. El estatus de las relaciones de los hombres y su contextodesempenan un rol crucial para el manejo de los cambios en su sexualidad. El estudio concluyerealizando un analisis de las implicaciones de lo anterior en la practica clınica.

Culture, Health & Sexuality 895

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