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
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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.
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