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Author Affiliations: Health Services and Outcomes Research Group, School Correspondence: Jane M. Ussher, PhD, Health Services and Outcomes
of Medicine, University of Western Sydney, Penrith, Australia. Research Group, School of Medicine, University of Western Sydney, Locked
This study was commissioned and funded by Breast Cancer Network Bag 1797, Penrith, NSW 2751, Australia ([email protected]).
Australia, in the form of a research contract with the University of Western Accepted for publication September 22, 2011.
Sydney. DOI: 10.1097/NCC.0b013e3182395401
The authors have no conflicts of interest to disclose.
Sexual Well-Being and Intimacy After Breast Cancer Cancer NursingTM, Vol. 35, No. 6, 2012 n 457
Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Procedure n Results
SURVEY
The survey was available for online completion for a 14-day The Impact of Breast Cancer on Sexual
period in December 2010. The survey contained27 quantita- Well-Being and Relationships
tive and qualitative items based on insights from an extensive In answer to a question on the impact of breast cancer or breast
literature review, discussions with stakeholders, and previous cancer treatment on sexual well-being, most of the 1956 par-
research conducted by the project team. The survey examined ticipants reported a decrease in frequency of sex (78%), energy
the experience of sexual well-being and pathways around help for sex (76%), sexual arousal (74%), feeling desirable (73%),
seeking for people with breast cancer in Australia. interest in sex (71%), sexual pleasure (64%), satisfaction with
sex (62%), and intimacy (60%) (Table 3). No change was
reported by most participants in the areas of ‘‘partner in-
ANALYSIS terested in sex’’ (64.3%) and ‘‘communication with partner
Descriptive statistics with measures of central tendency were about sexual needs’’ (50.5%); however, a considerable pro-
calculated for ordinal data derived from quantitative survey re- portion of the sample also reported decreases in these areas.
sponses. For frequency data, percentages are calculated based Only 7.2% of the sample noted an increase in the area of
on the number of participants who completed each item and ‘‘communication with partner about sexual needs,’’ with this
rounded up for readability. For items with multiple options, being the largest recorded increase.
percentages do not total 100 because participants could choose Of 1954 participants who described which aspects of breast
cancer or breast cancer treatment were perceived to have affected
more than 1 response. Thematic analysis28 was used to analyze
sexual well-being (Table 4), the most frequent responses were
the open-ended responses. This involved independent reading
tiredness (71%), vaginal dryness (63%), hot flushes (51%), and
of responses to each question by 2 members of the research
feeling unattractive (51%). When asked what had been tried to
team, to ascertain the major themes emerging and to develop
deal with changes to his/her sexual well-being after the onset of
a coding frame, based on notions of consistency, commonality,
breast cancer, the most common response, reported by 61% of
and the function and effects of specific themes. The entire data
1598 respondents, was talking to partner/husband, followed by
set was then coded using NVivo, a software package that as-
lubricant (57%), exercise (45%), reading information booklets/
sists with the organization and analysis of textual data. De-
leaflets (31%), talking to a health professional (26%), anti-
mographic information is provided for longer quotes, which
depressants (20%), psychotherapy/counselling (16%), sex aids
are omitted to enhance readability from shorter quotes. This (14%), medications (11%), and books (11%).
article will focus on accounts of changes to sexual well-being
Of 1999 respondents who described the impact of breast
and relationships after breast cancer.
cancer on their sexual relationship, 24% said it was affected
‘‘dramatically’’; 26%, ‘‘considerably’’; 32%, ‘‘somewhat’’; and
only 15%, ‘‘not at all.’’ Of the 1348 participants who an-
swered a question asking whether their partner had experi-
Participants enced any negative consequences because of their breast cancer,
A total of 2210 participants attempted to answer the survey, the most common reports were fear of hurting me during sex
with 1965 responding to all questions, representing an 88.9% (52%), lack of interest in sex (37%), difficulties in commu-
completion rate. Although a minimum sample of 381 was nication (34%), tiredness (28%), and change in role (seeing
required to reach a 95% confidence level, accepting a 5-point me as a patient) (20%). Table 5 illustrates these reports, as well
confidence interval, a larger sample increases the statistical as the other reported effects. The pattern of these proportions
power of the study; therefore, all of the data that were col- in all of the above items did not differ according to age, rela-
lected were analyzed. The average age for participants was tionship status, sexual orientation, or current stage of cancer
54.1 years; the sample was predominately female, self-identified treatment. More than 400 participants (n = 413) responded
as Anglo-Australian, and had further tertiary education and/or to an item inquiring into the influence of cancer upon their
training. Most participants were partnered and heterosexual, ability to enter into a new relationship, with 57% indicating
with children. Table 1 presents the complete sociodemographic that it had had an impact. The most frequently identified
descriptive statistics for the sample. issues were related to feelings around appearance and the
The breast cancer and treatment status profile for this sam- perceptions of others with ‘‘body image/attractiveness con-
ple is presented in Table 2. On average, it had been 3.9 years cerns,’’ noted by 77% of the subsample, followed by ‘‘lack
since participants received their diagnosis of breast cancer. of confidence’’ (66.5%), ‘‘not feeling desirable’’ (65%), and
At the time of diagnosis, for 74.6% of the sample, the type ‘‘fear of rejection’’ (46.5%). Of these concerns, ‘‘not feel-
of cancer diagnosed was early-stage breast cancer. Currently, ing desirable’’ and ‘‘fear of rejection’’ were more commonly
45.6% of the sample had finished their treatment, with a reported by women seeking new heterosexual relationships
similar proportion (45.5%) indicating that they were receiv- (63.8% and 45.4%, respectively) compared with women seek-
ing treatment. Menstruation had ceased for 77.8% of the ing a new same-sex relationship (14.3% and 0%, respectively).
sample who described themselves as postmenopausal. The most common physical effects reported were fatigue
Sexual Well-Being and Intimacy After Breast Cancer Cancer NursingTM, Vol. 35, No. 6, 2012 n 459
Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Table 2 & Breast Cancer and Treatment Status Profile (N =1956)
Characteristic % (n) or Mean Range (SD)
Diagnosis
Years since first diagnosis 3.9 years G1Y32 years (4.6 years)
Stage at diagnosis
Early breast cancer 74.6 (1602)
Locally advanced breast cancer 19.9 (428)
Secondary breast cancer (spread to other parts) 4.2 (91)
Don’t know/unsure 1.3 (27)
Current treatment status
Completed treatment 45.6 (974)
Currently receiving treatment 45.5 (971)
Between rounds of treatment 1.2 (26)
Subsequent diagnosis of breast cancer 6.8 (145)
Subsequent diagnosis of a different cancer 0.8 (18)
Menopausal status
Postmenopausal 77.8 (1697)
Perimenopausal 13.4 (292)
Premenopausal 8.8 (192)
I feel as if an integral part of my life is no longer well PAINFUL SEX AND ABSENCE OF DESIRE: PHYSICAL
within my reach. Although I am getting older and CHANGES TO SEXUAL WELL-BEING
therefore might be expected to lose interest in sex to a
certain degree, sex has been an important component Approximately one quarter of the 1259 open-ended question
of my life until I started receiving treatment for breast respondents (n = 249) described the changes to sexual well-
cancer. I worry about my loss of interest in sex and being after breast cancer in terms of physical changes, in-
I miss the sexual aspect of my life (65-year-old woman, cluding vaginal dryness or prolapse; absence of sexual desire,
early breast cancer, 3 years postdiagnosis). arousal, or orgasm; erectile dysfunction; and absence of breast
sensitivity or breast tenderness: ‘‘Enjoy the sexual experience
A substantial number of women told us that they experi- but very conscious of my breast and the fact they have no
enced feelings of loss because of the changes in their rela- feeling. Weight put on the breast can be painful’’ (48-year-old
tionship with their partner, feeling that a ‘‘door was being woman, early breast cancer, 2 years postdiagnosis); ‘‘Main prob-
closed’’ and they could not always discuss it. The ‘‘totally lem is lack of interest and vaginal dryness. Husband VERY
unexpected’’ nature of changes to sexual well-being was also supportive but doesn’t initiate sex as often because he doesn’t
a source of distress for many participants, who told us that want to be pushy as he knows I just can’t be bothered a lot
they had been given no information about what to expect: of the time’’ (50-year-old woman, early breast cancer, 3 years
‘‘Terrible! I am young and had not expected the side effects postdiagnosis).
sexually that come from menopause and treatmentsIvery Vaginal dryness or prolapse can lead to painful coital sex.
sad’’ (26-year-old woman, early breast cancer, 3 years post- This was an experience commonly reported by women, which
diagnosis); ‘‘Devastating. A complete shock, no one tells you can sometimes lead to avoidance of sex: ‘‘Sexual intercourse is
that it ruins your sex life’’ (61-year-old, secondary breast can- very painful. We can get pleasure from mutual masturbation,
cer, 3 years postdiagnosis). but penetration for me is very, very painful. It is almost like
Table 3 & The Impact of Breast Cancer or Breast Cancer Treatment on Sexual Well-Being (N =1956)
Area Decreased No Change Increased
Frequency of sex 77.9 (1427) 20.3 (372) 1.8 (33)
Energy for sex 76.0 (1379) 22.4 (407) 1.5 (28)
Sexual arousal 73.6 (1344) 24.2 (442) 2.2 (40)
Feeling desirable 73.4 (1385) 25.1 (473) 1.6 (30)
Interest in sex 71.4 (1308) 26.1 (479) 2.5 (45)
Sexual pleasure 64.2 (1151) 33.8 (607) 2.0 (36)
Satisfaction with sex 61.9 (1096) 35.6 (630) 2.5 (44)
Intimacy 60.4 (1090) 34.5 (623) 5.1 (93)
Communication with partner about sexual needs 42.4 (746) 50.5 (889) 7.2 (126)
Partner interest in sex 32.4 (565) 64.3 (1120) 3.3 (58)
Data are presented as % (n).
Sexual Well-Being and Intimacy After Breast Cancer Cancer NursingTM, Vol. 35, No. 6, 2012 n 461
Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
now sometimes makes me feel less feminine considering sexual well-being or having reconciled themselves to such
my fiancé was always a ‘‘boob’’ man (41-year-old woman, changes since the diagnosis of breast cancer: ‘‘It really hasn’t
early breast cancer, 6 years postdiagnosis). worried me all that much’’; ‘‘This is something we have both
Other women provided more pejorative comments about come to terms with and manage accordingly’’; ‘‘I was too
themselves, feeling ‘‘old and ugly,’’ ‘‘maimed,’’ ‘‘grotesque,’’ tired to care.’’ Others positioned changes in sexual well-
‘‘mutilated,’’ a ‘‘freak,’’ ‘‘damaged goods,’’ ‘‘like an old has being as temporary and looked forward to improvements in
been,’’ ‘‘undesirable,’’ and ‘‘deformed,’’ feelings that were as- the future: ‘‘I hope I will ‘get back to normal’ after I finish
sociated with breast scars, reconstruction, hair loss, and weight treatment. I feel I need to conserve my energy for healing
gain: ‘‘I hate to look at myself. I can’t look in the mirror. I at this time.’’
can’t even touch myself to see if the lump is still there. I At the same time, for a small number of participants, the
can’t stand to be looked at or touched. A hug is all I can cessation of sexual activity was welcomed: ‘‘now I have a
bear’’ (48-year-old woman, locally advanced breast cancer, reason to say no’’; ‘‘In some ways a relief’’; ‘‘Being over 70
1 year postdiagnosis). These feelings led many women to and never very partial to sex it was fine.’’ For other women,
hide their bodies from their partner, saying ‘‘I don’t want sex was positioned as unimportant or as less important than
my husband to see or touch my breast’’ or ‘‘I don’t feel like other aspects of health since the diagnosis of breast cancer,
exposing my breast and have partner touching it and seeing which meant that changes to sexual well-being were accepted:
it.’’ Many women also reported feeling ‘‘like I was a different ‘‘Other things seem more important and my partner has been
person,’’ ‘‘my femininity was ripped off overnight,’’ ‘‘not so caring that sex seems quite unimportant’’; ‘‘Find I am fo-
really a woman,’’ ‘‘less womanly,’’ ‘‘less of a person,’’ or ‘‘an cused on how my health rather than sex.’’ A few women com-
inadequate partner’’: mented that sex had never been important: ‘‘after so many
years of marriage we have become very good friends, so sex is
Horrible!! I’m 28 and have been married for 9 months not that important’’; ‘‘did not have sex before and not having
and have had sex probably 4 times in that time. I used to it now’’; ‘‘the need for sex was no longer part of my life.’’
enjoy it very much and now have no physical pleasure
from it and barely ever do it. This has impacted on my
LETTING MY PARTNER DOWN: CONCERNS ABOUT
identity as a woman and as a wife, has made me consider
IMPACT ON PARTNER OR RELATIONSHIP
my partner having an affair because I am not able to
satisfy him sexually (29-year-old woman, early breast For a number of women, approximately one-fifth of the
cancer, 1 year postdiagnosis). open-ended question respondents (n = 190), the impact of
In some instances, this feeling was associated with partner changes in sexual well-being for their partner was their major
rejection, which confirmed the woman’s fears, as is illustrated in concern: ‘‘It made me feel as though I was neglecting my
the following accounts: ‘‘Husband avoided my reconstructed husband but I just don’t feel the same about sex as I use to.’’
breast, which made me feel it wasn’t a ‘normal’ thing’’; ‘‘he says I I’d say I’ve had less than 5 orgasms in 12 months
have ‘mutilated my body.’ It isn’t a pretty sight, and I don’t like and I am not even bothered which is not how I use to be.
it either, but I’m stuck with it.’’ In contrast, other women de- I worry about how my partner must feel as I struggle
scribed partner support as alleviating their fears about being to appear interested when we have sex. We are close
‘‘unattractive’’ or ‘‘deformed’’ or of their partner helping to but I know he would like more from me (34-year-old
address their lack of ‘‘confidence in body image’’: woman, early breast cancer, 1 year postdiagnosis).
Initially, I felt that I was unattractive, even deformed. Approximately 10% of the open-ended question respon-
I worried that my husband wouldn’t love my body as dents (n = 126) told us that their relationship had experienced
before. He tells me over and over that he loves me difficulty, or broken down, because of changes to their sexual
even more now so... I have to get over it and just believe well-being after breast cancer. Comments included the
him (60-year-old woman, early breast cancer, 1 year following: ‘‘It was all very difficult, and placed a big strain
postdiagnosis). on my relationship’’; ‘‘my husband had affairs behind my
Partner support or acceptance did not always alleviate backIour marriage is all but finished although we are still
women’s negative feelings about their body or femininity, together’’; ‘‘my husband did not react well and subsequently
however, as illustrated in the following account: ‘‘although left.’’ A number of women also told us that existing rela-
my husband says he has no problem with my body as it tionship difficulties had been exacerbated by the occurrence of
nowII have a problem with it!II just can’t get passed [sic] breast cancer: ‘‘he does not seem interested anymore in sex at
this feeling. This affects our intimacy greatly!’’ (47-year-old all. It had been a bit of a problem previous to my diagnosis
woman, early breast cancer, 2 years postdiagnosis). and has got much worse since’’; ‘‘my diagnosis just exac-
erbated problems that already existed in my marriage. A non
communicative relationship just got worse.’’
IT REALLY HASN’T WORRIED ME: NO CHANGE OR
Most respondents attributed these relationship changes or
RECONCILING SELF TO CHANGES IN SEXUAL WELL-BEING
breakdown to their own disinterest in sex: ‘‘I went from a
Approximately one-tenth of the open-ended question respon- high libido to no libido or interest at all, my husband re-
dents (n = 123) described having experienced no change in placed me in less than 2 months’’; ‘‘pre diagnosis sex was fun
Sexual Well-Being and Intimacy After Breast Cancer Cancer NursingTM, Vol. 35, No. 6, 2012 n 463
Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
before their time, concern about weight gain or loss, and sexuality. At the same time, the accounts of individuals who
partner difficulty in understanding feelings can exacerbate are not in a relationship highlight the importance of sexual
these negative emotional changes, as was found in the present well-being for those with breast cancer who are currently single
study. Although some have argued that such changes are and the need for support, if requested, to alleviate fears or
more prevalent in individuals with preexisting anxiety, de- concerns about entering a new relationship. Sexuality is not
pression, or sexual dysfunction,8,31 it has also been reported only a relational issue; changes in sexual well-being, and in
that most women who experience negative changes to their sexual desire and arousal, can also affect those who are not in
sexual well-being also experience negative emotional changes.14 a relationship.
The findings of the present study confirm these reports in a Future research in this area could address some of the
large sample of individuals with breast cancer and provide issues not addressed in the present study. It would be useful
further insight into the nature of these effects. to include partners in the sample to examine the interactional
The accounts in the present study also illustrate not only dynamics of sexual well-being after breast cancer. It would
the intersubjective nature of changes to sexual well-being in also be useful to conduct interviews to examine changes to
the context of breast cancerVthe importance of relationship sexuality in more depth and use standardized questionnaires
context and partner reactionVbut also the complexity of the to assess the impact on psychological well-being and the as-
woman with breast cancer’s own response. Although partner sociation of changes to sexual well-being with relationship
rejection was consistently associated with women’s feelings of dynamics and satisfaction. The sample in the present study
negativity about the body or femininity, partner support did was composed largely of Anglo-Australian women. Future
not always alleviate these negative feelings. The way the woman research could usefully include individuals from a diverse
felt about herself and her ability to accept the changes to her range of cultural backgrounds, as expectations and experi-
body also impacted upon the way she positioned her body after ences of sexuality may be shaped by cultural identity, as well
breast cancer, allowing her to still feel like a sexual woman as a greater proportion of men, who are often omitted from
or, conversely, to feel ‘‘neutered,’’ as one participant described breast cancer research.18
herself.
At the same time, accounts of relationship change after
breast cancer confirm previous research reports that the di-
agnosis of cancer can change the relational dynamics between n Conclusion
people with cancer and their life partners, which can affect
the sexual relationship.32,33 Couples living with cancer have The findings outlined in this study are of significance to cli-
reported communication problems or increased conflict and, nicians, as sexual well-being is central to psychological well-
in some instances, have attributed relationship breakdown to being and quality of life and sexual intimacy has been found to
cancer,34Y36 as was found in the present study. Conversely, it make the experience of cancer more manageable and to assist
has been argued that couples living with cancer are no more in the recovery process.27,45 Health professionals can play an
likely to separate than couples in the general community37 important role in ameliorating concerns surrounding sexual
and that cancer can have had a positive effect on couple rela- well-being after breast cancer, offering specific suggestions re-
tionships,35 bringing people with cancer and their partners lated to sexual enhancement products, emotional adjustment
closer together,38 through creating greater intimacy.39 These to sexual changes, and information for partners.31,46 How-
conflicting findings have led Hagedoorn et al40(p24) to con- ever, the finding that only 25% of participants in the present
clude, in their meta-analysis of distress in couples coping with study had discussed sexual well-being with a health profes-
cancer, that further research is needed on ‘‘just how much sional, despite the high levels of distress reported, is a matter
cancer intrudes upon and organizes the daily lives of couples of concern. This seems to confirm previous findings that few
confronted with the disease.’’ The findings of the present health professionals engage discussions of sexual well-being
study make a substantial contribution to addressing this plea, with people with cancer, even in areas where it might be ex-
through exploring both negative and positive accounts of the pected, such as breast cancer.47,48 Further research is needed to
impact of cancer on sexual relationships. examine barriers that prevent discussion of sexual well-being
Although the experiences of partners are often neglected after breast cancer with a health professional. Further edu-
in research on sexuality and intimacy after cancer, there is cation and training of health professionals are also required, in
growing acknowledgement of their unmet needs in this order that they will be able to advise couples affected by breast
area.41,42 Reported disruptions include decreases in their own cancer on issues of sexual well-being and address unmet needs
sex drive, fear of initiating sex with their partner, difficulty in this arena.
regaining a level of ‘‘normality’’ within the sexual relationship,
and feeling unwanted and unattractive because of cessation of
ACKNOWLEDGMENTS
sex.43,44 Many of these findings have been confirmed and
extended by the findings of the present study, which reported Thanks are offered to Michelle Marven and Astrid Keir from
on partner experiences from the perspective of the person with Breast Cancer Network Australia for their advice on the
breast cancer. This reinforces the need to include partners, as survey and the interpretation of the data and to Caroline Joyce,
well as people with cancer, in future research in cancer and Emma Hurst, and Lauren Kadwell for research assistance and
Sexual Well-Being and Intimacy After Breast Cancer Cancer NursingTM, Vol. 35, No. 6, 2012 n 465