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Changes to Sexual Well-Being and Intimacy After Breast Cancer

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Copyright B 2012 Wolters Kluwer Health | Lippincott Williams & Wilkins

Jane M. Ussher, PhD

Janette Perz, PhD
Emilee Gilbert, PhD

Changes to Sexual Well-Being and

Intimacy After Breast Cancer
K E Y W O R D S Background: Changes to sexual well-being can be one of the most problematic
Breast cancer aspects of life after breast cancer, with the impact lasting for many years after
Coital imperative treatment, associated with serious physical and emotional adverse effects. However,
Distress the primary focus on corporeal changes negates the influence of social and
Intimacy relational constructions of sexuality and illness and the ways in which the meaning of
Mixed methods sex is negotiated by individuals and within relationships. Objective: The aim of this
Qualitative study was to examine changes to sexuality and intimate relationships in individuals
Relationships who have experienced breast cancer, from a material-discursive-intrapsychic
Sexual well-being perspective, using mixed-method analysis. Methods: An online survey containing
Survey 47 quantitative and qualitative items was completed by 1965 Australian individuals
with breast cancer. Participants were 98% women, with a mean age of 54 years.
Results: Decreases in sexual frequency, response, and satisfaction were attributed
to a range of factors, including tiredness and pain, psychological distress and body
image, and medically induced menopausal changes such as vaginal dryness, hot
flushes, and weight gain. Predominant concerns identified in the qualitative analysis
were emotional consequences, physical changes, feeling unattractive or lacking
femininity, reconciliation of self to changes, and impact on partner or relationship.
Conclusions: These findings support and extend previous research that reports
significant changes in sexual well-being after diagnosis and treatment for breast
cancer. Implications for Practice: The findings are of significance to clinicians
because sexual well-being is central to psychological well-being and quality of
life, and sexual intimacy has been found to make the experience of cancer more
manageable and to assist in the recovery process.

Author Affiliations: Health Services and Outcomes Research Group, School
of Medicine, University of Western Sydney, Penrith, Australia.
This study was commissioned and funded by Breast Cancer Network
Australia, in the form of a research contract with the University of Western
Sydney.
The authors have no conflicts of interest to disclose.
Correspondence: Jane M. Ussher, PhD, Health Services and Outcomes
Research Group, School of Medicine, University of Western Sydney, Locked
Bag 1797, Penrith, NSW 2751, Australia (j.ussher@uws.edu.au).
Accepted for publication September 22, 2011.
DOI: 10.1097/NCC.0b013e3182395401

456 n Cancer NursingTM, Vol. 35, No. 6, 2012 Ussher et al

Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
B
reast cancer is the most common cancer in women and
the second leading cause of cancer deaths in women
globally.1 Fortunately, advances in breast cancer screen-
ing and treatments have led to increasing rates of survival, with
significant proportions of women surviving for 5 years after
diagnosisVa rate of 88% in Australia, for example.2,3 This
has led to a focus on quality of life issues in breast cancer re-
search, with particular attention being paid to sexuality. It is
now recognized that changes to sexual well-being can be one
of the most problematic aspects of life after breast cancer, with
the impact lasting for many years after successful treatment,3Y5
often associated with serious physical and emotional adverse
effects.6 Research has shown that when compared with healthy
same-aged women, women with breast cancer experience
lower levels of sexual satisfaction and have more difficulty
maintaining their sexual life.7 More specific disturbances to
sexual well-being include pain; fatigue8; decreased vaginal lu-
brication; nausea; hot flashes; night sweats9; vomiting, vaginal
irritation, dyspareunia10; decreased sexual interest or desire11;
vaginal atrophy; decreased sexual arousal12; numbness in pre-
viously sensitive breasts13; and difficulty achieving orgasm.8
Although some women experience the changes to their sex-
uality after breast cancer positively,9,14 most evidence shows that
women with breast cancer experience a range of serious neg-
ative emotions, including depression and anxiety,15 as well as
alterations to their sexual self.13
Research has shown that the strongest consistent predictor
of sexual problems after breast cancer is lower perceived sex-
ual attractiveness.4 Women who have a poor body image after
breast cancer have lower rates of sexual satisfaction and are
more dissatisfied with their sexual relationship than are those
with a positive body image.7 At the same time, it has been
argued that although the physical pain of breast cancer and
treatment diminishes with time, the experience of emotional
pain may persist, as women grieve the loss of their breast or
feel as though a part of them has died.6 Breasts are often
positioned as such a significant part of women’s sense of self
that mastectomy is associated with being ‘‘half a woman.’’16
This is because the breast is positioned as a signifier of a
woman’s sexuality and femininity within patriarchal culture,
meaning that women with breast cancer are at risk of being
positioned outside ‘‘normal’’ femininity, with implications for
women’s sense of self, body image, and psychological well-
being.17Y19
Until recently, research examining the impact of breast
cancer on sexual well-being and intimacy has focused nar-
rowly on women’s ability to engage in satisfying sexual ac-
tivity, their satisfaction with the frequency of that activity,13,20
and the level of their sexual ‘‘dysfunction’’ after breast cancer,
where functional sexuality is conceptualized as penile/vaginal
intercourse.8,13,20 Recent research has shown, however, that en-
gaging in sexual intercourse may not be women’s primary fo-
cus of sexual concern after a breast cancer diagnosis and that
engagement in sexual intercourse does not necessary equate
to sexual satisfaction.13,18 Moreover, the primary focus on
the physical effects of breast cancer or breast cancer treatment
on sexual behavior assumes that a woman’s experience of sex-
Sexual Well-Being and Intimacy After Breast Cancer
Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
uality is limited to its corporeal dimensions, negating the in-
fluence of the social and relational construction of sexuality
and illness,21 and the ways in which the meaning of sex is
negotiated by individuals and within relationships.22 In this
vein, research consistently shows that one of the most impor-
tant and consistent predictors of sexual health in women with
breast cancer is the quality of their partnered relationship.23 A
good couple relationship and a supportive intimate partner
have been shown to assist women cope with cancer and its
outcome.14,15 In fact, it has been shown that the quality of a
woman’s relationship is a stronger predictor of sexual sat-
isfaction, sexual functioning, and sexual desire after breast
cancer than the physical or chemical damage to the body after
treatment.24,25
Previous research on sexuality and breast cancer has pri-
marily used quantitative survey methods of data collection.18
Although quantitative methods can provide information on
changes in large samples of individuals, they negate the com-
plexity of women’s lived experience and negotiation of sexual
well-being after breast cancer.18 There has been some qual-
itative research that has examined women’s lived experiences of
changes to sexuality after breast cancer (see Archibald et al14)
and the ways in which sociocultural discourses shape the ex-
perience and interpretation of sexuality.17 However, within
this research, the psychological and relational aspects of women’s
experiences are often ignored, physical changes are often mini-
mized, and small sample size limits generalizations that can be
made to a broader population of individuals with breast cancer.
The purpose of the present research study was to examine
the lived experience of sexual well-being and couple intimacy
in a large sample of individuals with breast cancer living in
Australia, using a combination of quantitative and qualitative
methods. We are adopting a material-discursive-intrapsychic
perspective,18,26 which acknowledges the materiality of phys-
ical changes in sexual well-being, as well as the tangible impact
of cancer and cancer treatment, women’s psychological and emo-
tional experience, and the negotiation of such changes within a
relational context, where meaning is constructed in the context
of cultural constructions of femininity, sexuality, and illness.
The research questions were as follows: What are the changes
to sexual well-being and intimacy experienced after breast can-
cer? What factors are perceived to have caused these changes?
How are these changes subjectively experienced by people with
breast cancer?
n Method
Design
The participants were drawn from the membership of the
peak national organization for Australians affected by breast
cancer. Participants responded to an e-mail invitation to com-
plete an online survey. A mixed-method approach was adopted
where qualitative and quantitative data are integrated and pre-
sented. The research protocol was reviewed and approved by
the university human ethics research committee.
Cancer NursingTM, Vol. 35, No. 6, 2012 n 457
Procedure
SURVEY
The survey was available for online completion for a 14-day
period in December 2010. The survey contained27 quantita-
tive and qualitative items based on insights from an extensive
literature review, discussions with stakeholders, and previous
research conducted by the project team. The survey examined
the experience of sexual well-being and pathways around help
seeking for people with breast cancer in Australia.
ANALYSIS
Descriptive statistics with measures of central tendency were
calculated for ordinal data derived from quantitative survey re-
sponses. For frequency data, percentages are calculated based
on the number of participants who completed each item and
rounded up for readability. For items with multiple options,
percentages do not total 100 because participants could choose
more than 1 response. Thematic analysis28 was used to analyze
the open-ended responses. This involved independent reading
of responses to each question by 2 members of the research
team, to ascertain the major themes emerging and to develop
a coding frame, based on notions of consistency, commonality,
and the function and effects of specific themes. The entire data
set was then coded using NVivo, a software package that as-
sists with the organization and analysis of textual data. De-
mographic information is provided for longer quotes, which
are omitted to enhance readability from shorter quotes. This
article will focus on accounts of changes to sexual well-being
and relationships after breast cancer.
Participants
A total of 2210 participants attempted to answer the survey,
with 1965 responding to all questions, representing an 88.9%
completion rate. Although a minimum sample of 381 was
required to reach a 95% confidence level, accepting a 5-point
confidence interval, a larger sample increases the statistical
power of the study; therefore, all of the data that were col-
lected were analyzed. The average age for participants was
54.1 years; the sample was predominately female, self-identified
as Anglo-Australian, and had further tertiary education and/or
training. Most participants were partnered and heterosexual,
with children. Table 1 presents the complete sociodemographic
descriptive statistics for the sample.
The breast cancer and treatment status profile for this sam-
ple is presented in Table 2. On average, it had been 3.9 years
since participants received their diagnosis of breast cancer.
At the time of diagnosis, for 74.6% of the sample, the type
of cancer diagnosed was early-stage breast cancer. Currently,
45.6% of the sample had finished their treatment, with a
similar proportion (45.5%) indicating that they were receiv-
ing treatment. Menstruation had ceased for 77.8% of the
sample who described themselves as postmenopausal.
458 n Cancer NursingTM, Vol. 35, No. 6, 2012
Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n Results
The Impact of Breast Cancer on Sexual
Well-Being and Relationships
In answer to a question on the impact of breast cancer or breast
cancer treatment on sexual well-being, most of the 1956 par-
ticipants reported a decrease in frequency of sex (78%), energy
for sex (76%), sexual arousal (74%), feeling desirable (73%),
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-
terested in sex’’ (64.3%) and ‘‘communication with partner
about sexual needs’’ (50.5%); however, a considerable pro-
portion of the sample also reported decreases in these areas.
Only 7.2% of the sample noted an increase in the area of
‘‘communication with partner about sexual needs,’’ with this
being the largest recorded increase.
Of 1954 participants who described which aspects of breast
cancer or breast cancer treatment were perceived to have affected
sexual well-being (Table 4), the most frequent responses were
tiredness (71%), vaginal dryness (63%), hot flushes (51%), and
feeling unattractive (51%). When asked what had been tried to
deal with changes to his/her sexual well-being after the onset of
breast cancer, the most common response, reported by 61% of
1598 respondents, was talking to partner/husband, followed by
lubricant (57%), exercise (45%), reading information booklets/
leaflets (31%), talking to a health professional (26%), anti-
depressants (20%), psychotherapy/counselling (16%), sex aids
(14%), medications (11%), and books (11%).
Of 1999 respondents who described the impact of breast
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-
enced any negative consequences because of their breast cancer,
the most common reports were fear of hurting me during sex
(52%), lack of interest in sex (37%), difficulties in commu-
nication (34%), tiredness (28%), and change in role (seeing
me as a patient) (20%). Table 5 illustrates these reports, as well
as the other reported effects. The pattern of these proportions
in all of the above items did not differ according to age, rela-
tionship status, sexual orientation, or current stage of cancer
treatment. More than 400 participants (n = 413) responded
to an item inquiring into the influence of cancer upon their
ability to enter into a new relationship, with 57% indicating
that it had had an impact. The most frequently identified
issues were related to feelings around appearance and the
perceptions of others with ‘‘body image/attractiveness con-
cerns,’’ noted by 77% of the subsample, followed by ‘‘lack
of confidence’’ (66.5%), ‘‘not feeling desirable’’ (65%), and
‘‘fear of rejection’’ (46.5%). Of these concerns, ‘‘not feel-
ing desirable’’ and ‘‘fear of rejection’’ were more commonly
reported by women seeking new heterosexual relationships
(63.8% and 45.4%, respectively) compared with women seek-
ing a new same-sex relationship (14.3% and 0%, respectively).
The most common physical effects reported were fatigue
Ussher et al
(46.5%), vaginal dryness (42.9%) and upper body or other
pain (22.8%).
The Subjective Experience of Changes to
Sexual Well-Being After Breast Cancer
A total of 1259 participants, all women, provided answers to
an open-ended question asking about subjective experience of
changes to sexual well-being after breast cancer. The most
common responses related to emotional consequences, physical
changes, feeling unattractive or lacking femininity, reconcilia-
tion of self to changes, concerns about impact on partner or
relationship, and partner support and relationship improve-
ment, outlined below.
DEVASTATION, DEPRESSION, AND SADNESS:
EMOTIONAL CONSEQUENCES
More than a third of the 1259 open-ended question respon-
dents (n = 439) described negative emotional consequences of
changes to sexual well-being after breast cancer. The most
commonly reported feelings were ‘‘devastating’’ and ‘‘depressing,’’
with other descriptors including ‘‘confusing,’’ ‘‘disturbing,’’ ‘‘soul
destroying,’’ ‘‘shocking and unexpected,’’ ‘‘frustrating,’’ ‘‘trau-
matic,’’ and ‘‘demoralizing.’’ For most women, these feelings
were associated with a loss of interest in sex or not experienc-
ing pleasure during sex, as illustrated by the following ac-
counts: ‘‘I find that I have no desire for sex. When I have sex
I find that it was not enjoyable which then made me feel
guilty’’ (47-year-old woman, locally advanced breast cancer,
2 years postdiagnosis); ‘‘Very upsetting. I love my husband
very much and our relationship is very good. My physical
body does not arouse or respond like it used to’’ (51-year-old
woman, early breast cancer, 3 years postdiagnosis).
A significant proportion of women reported sadness and
loss because of sexual changes, with one saying ‘‘I feel a sense
of loss, as if part of me has died,’’ and another saying, ‘‘I felt
like my heart had been ripped out. Very empty.’’ Many
women also told us that they ‘‘miss the sexual aspect of my
life,’’ as illustrated in the following account.

Table 1 & Sociodemographic Characteristics of the Study Sample (N = 1956)

Characteristic % (n) or Mean Range (SD)
Age 54.1 years 18Y84 years (9.4 years)
Gender
Female 98.8 (2185)
Male 0.2 (5)
Cultural background
Anglo-Australian 89.1 (1910)
European 8.8 (188)
Aboriginal/Torres Strait Islander 0.3 (8)
Asian 1.5 (32)
Middle Eastern 0.1 (4)
African 0.1 (2)
Highest level of education
Completed secondary school 34.1 (701)
Trade/apprenticeship qualification 5.2 (107)
Certificate/diploma 24.4 (501)
Tertiary education or higher 36.3 (745)
Relationship status
Partnered, living together 80.1 (1747)
Partnered, not living together 5.2 (113)
Not in a relationship 14.7 (321)
Period of time
Partnered, length of relationship 24.8 years 2 monthsY59 years (12.9 years)
Not partnered, time since last relationship 7.2 years 2 monthsY49 years (7.2 years)
Gender of partner
Male 98.0 (1994)
Female 2.0 (41)
Children
Yes 84.2 (1830)
No 15.8 (343)
Relationship end since onset of breast cancer
Yes 7.4 (158)
No 92.6 (1970)
Current sexual relationship
Yes 77.2 (1662)
No 22.8 (491)

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
within my reach. Although I am getting older and
therefore might be expected to lose interest in sex to a
certain degree, sex has been an important component
of my life until I started receiving treatment for breast
cancer. I worry about my loss of interest in sex and
I miss the sexual aspect of my life (65-year-old woman,
early breast cancer, 3 years postdiagnosis).
A substantial number of women told us that they experi-
enced feelings of loss because of the changes in their rela-
tionship with their partner, feeling that a ‘‘door was being
closed’’ and they could not always discuss it. The ‘‘totally
unexpected’’ nature of changes to sexual well-being was also
a source of distress for many participants, who told us that
they had been given no information about what to expect:
‘‘Terrible! I am young and had not expected the side effects
sexually that come from menopause and treatmentsIvery
sad’’ (26-year-old woman, early breast cancer, 3 years post-
diagnosis); ‘‘Devastating. A complete shock, no one tells you
that it ruins your sex life’’ (61-year-old, secondary breast can-
cer, 3 years postdiagnosis).
PAINFUL SEX AND ABSENCE OF DESIRE: PHYSICAL
CHANGES TO SEXUAL WELL-BEING
Approximately one quarter of the 1259 open-ended question
respondents (n = 249) described the changes to sexual well-
being after breast cancer in terms of physical changes, in-
cluding vaginal dryness or prolapse; absence of sexual desire,
arousal, or orgasm; erectile dysfunction; and absence of breast
sensitivity or breast tenderness: ‘‘Enjoy the sexual experience
but very conscious of my breast and the fact they have no
feeling. Weight put on the breast can be painful’’ (48-year-old
woman, early breast cancer, 2 years postdiagnosis); ‘‘Main prob-
lem is lack of interest and vaginal dryness. Husband VERY
supportive but doesn’t initiate sex as often because he doesn’t
want to be pushy as he knows I just can’t be bothered a lot
of the time’’ (50-year-old woman, early breast cancer, 3 years
postdiagnosis).
Vaginal dryness or prolapse can lead to painful coital sex.
This was an experience commonly reported by women, which
can sometimes lead to avoidance of sex: ‘‘Sexual intercourse is
very painful. We can get pleasure from mutual masturbation,
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).

460 n Cancer NursingTM, Vol. 35, No. 6, 2012 Ussher et al

Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
 women reporting that they had ceased sexual activity or
Table 4 & Aspects of Breast Cancer or Breast
endured uncomfortable or painful sex to please their partner.
Cancer Treatment That Have Affected
As one woman commented, ‘‘There is physical and emotional
Sexual Well-Being (N = 1956)
pain involved in having sexVI worry that I only doing it to
Item % (n) keep him happy, not at all for myself.’’ Women also reported
Tiredness 71.0 (1387) that the physical consequences of cancer or cancer treatment,
Vaginal dryness 63.3 (1237) including tiredness, nausea, feeling ‘‘sore’’ or ‘‘uncomfortable,’’
Hot flushes 51.2 (1000) and weight gain, affected their sexual well-being: ‘‘Sex is the
Feeling unattractive 50.8 (993) last thing on your mind when your chest hurts, you lose all
Weight gain 48.8 (953) your hair, you are tired and feel very unattractiveVyou just
Difficulty being aroused 45.8 (894) want to survive and get through’’ (35-year-old woman, sec-
Feeling uncomfortable exposing my body 44.0 (860) ondary breast cancer, 1 year postdiagnosis).
Medication adverse effects 39.0 (762) In contrast, a very small number of women reported in-
Loss of confidence in myself 38.4 (751)
creased sexual pleasure or desire, ‘‘increased libido,’’ or that
Depression/anxiety 37.8 (738)
sex was a way of feeling ‘‘real and alive’’ during treatment: ‘‘I
Change in size or shape of breast 37.6 (734)
Difficulty reaching orgasm 35.9 (701) went from not feeling a desirable woman to feeling the more
Loss of sensation 35.8 (700) sexually interested and excited I have ever been’’ (50-year-old
Reduced nipple sensation 35.4 (692) woman, early breast cancer, 2 years postdiagnosis); ‘‘I am
Pain during intercourse 33.4 (653) shocked that my libido has increased’’ (35-year-old woman,
Anxiety about sex 28.6 (558) early breast cancer, 2 years postdiagnosis). These cases may be
Early menopause 28.1 (550) in the minority, but they suggest that detrimental effects of
Appearance changes (eg, hair loss) 27.0 (527) breast cancer on sexual well-being cannot be assumed to be
Pain in upper body 26.9 (525) the case for all women.
Relationship changes 22.8 (446)
Fear 21.4 (418)
Loss of identity 17.0 (332) I’M NOT REALLY A WOMAN ANYMORE: FEELING
Anger 16.3 (319) UNATTRACTIVE AND LACKING IN FEMININITY
Lymphedema 16.3 (318)
Approximately one-fifth of the open-ended question respon-
Guilt 12.6 (246)
Feelings of shame 10.2 (200) dents (n = 212) reported feeling unattractive or lacking in
Othera 36.9 (722) femininity after breast cancer and told us that, as a con-
Erectile difficulties (for men with breast cancer) 100.0 (5) sequence, they felt that this affected their sexual well-being.
a
Thus, women described themselves as being distressed because
Each less than 10%: increased sensitivity (9.9%, n = 193), thrush (8.4%, of ‘‘negative feelings about my body’’ or because ‘‘I don’t feel
n = 164), vaginal discharge (8.0%, n = 157), irregular menstruation (6.1%,
n = 120), weight loss (3.9%, n = 76), and more energy (0.6%, n = 12). attractive at all anymore.’’
When first diagnosed, I was alone, so sex not important,
now it is naturally more important, and having no breasts
my husband is wearing a condom with cut glass attached to
it’’ (65-year-old woman, early breast cancer, 6 years post-
diagnosis). A number of women gave accounts of dealing with Table 5 & Perceived Consequences of Breast
these physical changes by renegotiating coital sexual activity after Cancer or Treatment Upon the Partner
breast cancer, primarily through the use of lubricants. In some (N = 1348)
instances, this was positioned positively, as an effective solution: Item % (n)
‘‘Breast cancer diagnosed Oct 2008. Met new partner (widower)
Jan 09 and commenced sexual relationship Feb 09. No probs Fear of hurting me during sex 52.5 (708)
except dryness due to Arimidex (use lubricant)’’ (67-year-old Lack of interest in sex 36.9 (498)
Difficulties in communication 34.1 (459)
woman, early breast cancer, 3 years postdiagnosis). In other
Tiredness 27.8 (375)
instances, lubrication was described as ‘‘messy’’ and as interrupt- Change in role (eg, seeing me as a patient) 20.0 (269)
ing the spontaneity of sex: ‘‘The only way to have sex is with Erectile difficulties 19.0 (256)
lubrication which is messy and I find it extremely frustrating Fear 17.7 (238)
and annoying for not only me but for my husband as the first Depression/anxiety 17.0 (229)
thing I reach for is my bottle of lubricant’’ (38-year-old woman, Anger 15.6 (210)
early breast cancer, 9 years postdiagnosis). Masturbation was Anxiety about sex 13.8 (186)
also described as a solution, with one 75-year-old woman Difficulty being aroused 12.4 (167)
with locally advanced breast cancer, 1 year postdiagnosis, Difficulty in reaching orgasm 10.5 (141)
telling us: ‘‘As a still attractive older woman no sexual partner Othera 11.4 (153)
means masturbation an option on occasion.’’ These accounts a
Each less than 10%: guilt (6.8%, n = 91), taken a different sexual partner(s)
of renegotiation were in the minority, however, with most (2.3%, n = 31), loss of identity (1.6%, n = 22), and more energy (0.7%, n = 9).

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
my fiancé was always a ‘‘boob’’ man (41-year-old woman,
early breast cancer, 6 years postdiagnosis).
Other women provided more pejorative comments about
themselves, feeling ‘‘old and ugly,’’ ‘‘maimed,’’ ‘‘grotesque,’’
‘‘mutilated,’’ a ‘‘freak,’’ ‘‘damaged goods,’’ ‘‘like an old has
been,’’ ‘‘undesirable,’’ and ‘‘deformed,’’ feelings that were as-
sociated with breast scars, reconstruction, hair loss, and weight
gain: ‘‘I hate to look at myself. I can’t look in the mirror. I
can’t even touch myself to see if the lump is still there. I
can’t stand to be looked at or touched. A hug is all I can
bear’’ (48-year-old woman, locally advanced breast cancer,
1 year postdiagnosis). These feelings led many women to
hide their bodies from their partner, saying ‘‘I don’t want
my husband to see or touch my breast’’ or ‘‘I don’t feel like
exposing my breast and have partner touching it and seeing
it.’’ Many women also reported feeling ‘‘like I was a different
person,’’ ‘‘my femininity was ripped off overnight,’’ ‘‘not
really a woman,’’ ‘‘less womanly,’’ ‘‘less of a person,’’ or ‘‘an
inadequate partner’’:
Horrible!! I’m 28 and have been married for 9 months
and have had sex probably 4 times in that time. I used to
enjoy it very much and now have no physical pleasure
from it and barely ever do it. This has impacted on my
identity as a woman and as a wife, has made me consider
my partner having an affair because I am not able to
satisfy him sexually (29-year-old woman, early breast
cancer, 1 year postdiagnosis).
In some instances, this feeling was associated with partner
rejection, which confirmed the woman’s fears, as is illustrated in
the following accounts: ‘‘Husband avoided my reconstructed
breast, which made me feel it wasn’t a ‘normal’ thing’’; ‘‘he says I
have ‘mutilated my body.’ It isn’t a pretty sight, and I don’t like
it either, but I’m stuck with it.’’ In contrast, other women de-
scribed partner support as alleviating their fears about being
‘‘unattractive’’ or ‘‘deformed’’ or of their partner helping to
address their lack of ‘‘confidence in body image’’:
Initially, I felt that I was unattractive, even deformed.
I worried that my husband wouldn’t love my body as
before. He tells me over and over that he loves me
even more now so... I have to get over it and just believe
him (60-year-old woman, early breast cancer, 1 year
postdiagnosis).
Partner support or acceptance did not always alleviate
women’s negative feelings about their body or femininity,
however, as illustrated in the following account: ‘‘although
my husband says he has no problem with my body as it
nowII have a problem with it!II just can’t get passed [sic]
this feeling. This affects our intimacy greatly!’’ (47-year-old
woman, early breast cancer, 2 years postdiagnosis).
IT REALLY HASN’T WORRIED ME: NO CHANGE OR
RECONCILING SELF TO CHANGES IN SEXUAL WELL-BEING
Approximately one-tenth of the open-ended question respon-
dents (n = 123) described having experienced no change in
462 n Cancer NursingTM, Vol. 35, No. 6, 2012
Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
sexual well-being or having reconciled themselves to such
changes since the diagnosis of breast cancer: ‘‘It really hasn’t
worried me all that much’’; ‘‘This is something we have both
come to terms with and manage accordingly’’; ‘‘I was too
tired to care.’’ Others positioned changes in sexual well-
being as temporary and looked forward to improvements in
the future: ‘‘I hope I will ‘get back to normal’ after I finish
treatment. I feel I need to conserve my energy for healing
at this time.’’
At the same time, for a small number of participants, the
cessation of sexual activity was welcomed: ‘‘now I have a
reason to say no’’; ‘‘In some ways a relief’’; ‘‘Being over 70
and never very partial to sex it was fine.’’ For other women,
sex was positioned as unimportant or as less important than
other aspects of health since the diagnosis of breast cancer,
which meant that changes to sexual well-being were accepted:
‘‘Other things seem more important and my partner has been
so caring that sex seems quite unimportant’’; ‘‘Find I am fo-
cused on how my health rather than sex.’’ A few women com-
mented that sex had never been important: ‘‘after so many
years of marriage we have become very good friends, so sex is
not that important’’; ‘‘did not have sex before and not having
it now’’; ‘‘the need for sex was no longer part of my life.’’
LETTING MY PARTNER DOWN: CONCERNS ABOUT
IMPACT ON PARTNER OR RELATIONSHIP
For a number of women, approximately one-fifth of the
open-ended question respondents (n = 190), the impact of
changes in sexual well-being for their partner was their major
concern: ‘‘It made me feel as though I was neglecting my
husband but I just don’t feel the same about sex as I use to.’’
I’d say I’ve had less than 5 orgasms in 12 months
and I am not even bothered which is not how I use to be.
I worry about how my partner must feel as I struggle
to appear interested when we have sex. We are close
but I know he would like more from me (34-year-old
woman, early breast cancer, 1 year postdiagnosis).
Approximately 10% of the open-ended question respon-
dents (n = 126) told us that their relationship had experienced
difficulty, or broken down, because of changes to their sexual
well-being after breast cancer. Comments included the
following: ‘‘It was all very difficult, and placed a big strain
on my relationship’’; ‘‘my husband had affairs behind my
backIour marriage is all but finished although we are still
together’’; ‘‘my husband did not react well and subsequently
left.’’ A number of women also told us that existing rela-
tionship difficulties had been exacerbated by the occurrence of
breast cancer: ‘‘he does not seem interested anymore in sex at
all. It had been a bit of a problem previous to my diagnosis
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.’’
Most respondents attributed these relationship changes or
breakdown to their own disinterest in sex: ‘‘I went from a
high libido to no libido or interest at all, my husband re-
placed me in less than 2 months’’; ‘‘pre diagnosis sex was fun
Ussher et al
but now I have no desire. My relationship with husband
is strained and stressed. He still wants sex but I am not
aroused.’’ For other women, these relationship changes were
attributed to their partner becoming their ‘‘carer,’’ ‘‘brother,’’
or’’ housemate’’ and thus no longer their lover. As one woman
told us, ‘‘I feel the relationship with my husband has become
like housemates rather than husband and wife.’’ Difficulties in
communication were also described as causing relationship
tension: ‘‘Very hard to come to terms with since my partner
isn’t good at communicating and in denial about my health
issues’’; ‘‘Devastating, communication became very strained
for the first time in our relationship.’’
WE’RE CLOSER NOW: PARTNER SUPPORT AND
RELATIONSHIP IMPROVEMENT
A small proportion of women, approximately one-tenth of
the open-ended question respondents, described feeling closer
or experiencing greater intimacy with their partner since the
diagnosis of breast cancer: ‘‘Whilst the act of sex has de-
creased the intimacy between us has increased in other ways’’;
‘‘Our relationship has moved to another level of loving
without sex’’; ‘‘I actually feel more secure in my relationship
postdiagnosis.’’ Breast cancer was also described as offering
an opportunity to renegotiate intimacy to meet a woman’s
needs, often addressing needs that had been there before
breast cancer. One woman described this as ‘‘freedom’’ from
sex, whereas another described increased ‘‘flirtiness and
warmth,’’ which resulted in a richer relationship with her
husband, with whom she had developed ‘‘a deep unspoken
bond that is much richer than the earlier sexual moments.’’
Better communication since diagnosis was also reported by a
number of female participants: ‘‘we communicate our needs
much better than before my diagnosis’’; ‘‘I found that we
communicated better regarding issues during treatment and
since.’’ Having a supportive partner who accepted the
changes the woman was experiencing and who exerted ‘‘no
pressure’’ for sex or was ‘‘willing to wait until I’m willing’’
was also described as a ‘‘the most important thing’’ by a
number of women:
At diagnosis we were both so devastated and I felt
that I would never be able to have sex again but as
time goes on and acceptance happens our sex life has
improved thanks mainly to my partner’s attitude that
he loves me and does not find anything different about
me (65-year-old woman, early breast cancer, 1 year
postdiagnosis).
Having a secure relationship before breast cancer was
described as important for a number of women, allowing the
couple to cope with changes in sexual desire or activity: ‘‘we
are very secure in our relationship and agreed that intercourse
was not high on the list of needs. Support, sharing conver-
sations and just being together was more important.’’ Equally,
a number of women described new relationships developing
since diagnosis and treatment for breast cancer, sometimes
after a previous relationship had ended after cancer: ‘‘I have
Sexual Well-Being and Intimacy After Breast Cancer
Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
found a very considerate amazing beautiful partner. I also still
feel sexy and whole and goddess like.’’
When I was first diagnosed, I went through a terrible
time of feeling undesirable, fearing disfigurement
and seeking affirmation. I felt very needy. I sought
reassurance and was firmly rejected. Although upsetting
at the time, this was paradoxically helpful in forcing
me to face up to my future independently and take
ownership of what was happening to me. The effect
of the surgery was much less disfiguring than I’d feared,
and my confidence has returned. I’ve since had an
affirming sexual relationship (62-year-old woman,
early breast cancer, 1 year postdiagnosis).
These accounts suggest that relationship difficulty or break-
down does not mean the end of sexual relationships for women
with breast cancer, as new relationships can develop and can be
rewarding both emotionally and sexually.
n Discussion
These findings support and extend previous research that re-
ports significant changes in sexual well-being after diagnosis
and treatment for breast cancer. In a previous survey of 863
women that examined self-reported changes to sexual func-
tioning after breast cancer, it was found that one-third reported
that cancer had a negative impact on their sexuality.21 In the
present study, the largest study of sexual well-being in the
context of breast cancer published to date,18 the proportion
was far greater, suggesting that one-third may be a significant
underestimate. Decreases in frequency of sex, sexual arousal,
interest, and desire, as well as in sexual pleasure, satisfaction,
and intimacy, were attributed to a range of factors, including
tiredness and pain, psychological distress and body image, and
medically induced menopausal changes, such as vaginal dryness,
hot flushes, and weight gain. However, accounts of material
changes to the body and relationships, as well as intrapsychic
consequences, cannot be separated from discursive construc-
tions of illness, femininity, and (hetero)sexuality, which give
meaning to the experience of sexuality after breast cancer: a
material-discursive-intrapsychic interaction.18,29 For exam-
ple, the focus on vaginal dryness experienced by women with
breast cancer as a major cause of sexual difficulty, as well as
the paucity of accounts of renegotiating sexual activity when
coital sex was painful or difficult, illustrates the dominance
of the coital imperative in the construction and experience
of heterosexuality.30 Challenging the coital imperative through
the exploration of noncoital sexual practices should thus be
central to professional advice and support for individuals with
breast cancer.
Although some individuals experience the changes to their
sexuality after breast cancer positively, most evidence shows
that people with breast cancer experience a range of serious
negative emotional changes because of disturbances to their
sexuality.14 Having to adjust to the removal or alteration in
appearance of the breast, loss of bodily hair, feeling ‘‘old’’
Cancer NursingTM, Vol. 35, No. 6, 2012 n 463
before their time, concern about weight gain or loss, and
partner difficulty in understanding feelings can exacerbate
these negative emotional changes, as was found in the present
study. Although some have argued that such changes are
more prevalent in individuals with preexisting anxiety, de-
pression, or sexual dysfunction,8,31 it has also been reported
that most women who experience negative changes to their
sexual well-being also experience negative emotional changes.14
The findings of the present study confirm these reports in a
large sample of individuals with breast cancer and provide
further insight into the nature of these effects.
The accounts in the present study also illustrate not only
the intersubjective nature of changes to sexual well-being in
the context of breast cancerVthe importance of relationship
context and partner reactionVbut also the complexity of the
woman with breast cancer’s own response. Although partner
rejection was consistently associated with women’s feelings of
negativity about the body or femininity, partner support did
not always alleviate these negative feelings. The way the woman
felt about herself and her ability to accept the changes to her
body also impacted upon the way she positioned her body after
breast cancer, allowing her to still feel like a sexual woman
or, conversely, to feel ‘‘neutered,’’ as one participant described
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
people with cancer and their life partners, which can affect
the sexual relationship.32,33 Couples living with cancer have
reported communication problems or increased conflict and,
in some instances, have attributed relationship breakdown to
cancer,34Y36 as was found in the present study. Conversely, it
has been argued that couples living with cancer are no more
likely to separate than couples in the general community37
and that cancer can have had a positive effect on couple rela-
tionships,35 bringing people with cancer and their partners
closer together,38 through creating greater intimacy.39 These
conflicting findings have led Hagedoorn et al40(p24) to con-
clude, in their meta-analysis of distress in couples coping with
cancer, that further research is needed on ‘‘just how much
cancer intrudes upon and organizes the daily lives of couples
confronted with the disease.’’ The findings of the present
study make a substantial contribution to addressing this plea,
through exploring both negative and positive accounts of the
impact of cancer on sexual relationships.
Although the experiences of partners are often neglected
in research on sexuality and intimacy after cancer, there is
growing acknowledgement of their unmet needs in this
area.41,42 Reported disruptions include decreases in their own
sex drive, fear of initiating sex with their partner, difficulty
regaining a level of ‘‘normality’’ within the sexual relationship,
and feeling unwanted and unattractive because of cessation of
sex.43,44 Many of these findings have been confirmed and
extended by the findings of the present study, which reported
on partner experiences from the perspective of the person with
breast cancer. This reinforces the need to include partners, as
well as people with cancer, in future research in cancer and
464 n Cancer NursingTM, Vol. 35, No. 6, 2012
Copyright @ 2012 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
sexuality. At the same time, the accounts of individuals who
are not in a relationship highlight the importance of sexual
well-being for those with breast cancer who are currently single
and the need for support, if requested, to alleviate fears or
concerns about entering a new relationship. Sexuality is not
only a relational issue; changes in sexual well-being, and in
sexual desire and arousal, can also affect those who are not in
a relationship.
Future research in this area could address some of the
issues not addressed in the present study. It would be useful
to include partners in the sample to examine the interactional
dynamics of sexual well-being after breast cancer. It would
also be useful to conduct interviews to examine changes to
sexuality in more depth and use standardized questionnaires
to assess the impact on psychological well-being and the as-
sociation of changes to sexual well-being with relationship
dynamics and satisfaction. The sample in the present study
was composed largely of Anglo-Australian women. Future
research could usefully include individuals from a diverse
range of cultural backgrounds, as expectations and experi-
ences of sexuality may be shaped by cultural identity, as well
as a greater proportion of men, who are often omitted from
breast cancer research.18
n Conclusion
The findings outlined in this study are of significance to cli-
nicians, as sexual well-being is central to psychological well-
being and quality of life and sexual intimacy has been found to
make the experience of cancer more manageable and to assist
in the recovery process.27,45 Health professionals can play an
important role in ameliorating concerns surrounding sexual
well-being after breast cancer, offering specific suggestions re-
lated to sexual enhancement products, emotional adjustment
to sexual changes, and information for partners.31,46 How-
ever, the finding that only 25% of participants in the present
study had discussed sexual well-being with a health profes-
sional, despite the high levels of distress reported, is a matter
of concern. This seems to confirm previous findings that few
health professionals engage discussions of sexual well-being
with people with cancer, even in areas where it might be ex-
pected, such as breast cancer.47,48 Further research is needed to
examine barriers that prevent discussion of sexual well-being
after breast cancer with a health professional. Further edu-
cation and training of health professionals are also required, in
order that they will be able to advise couples affected by breast
cancer on issues of sexual well-being and address unmet needs
in this arena.
ACKNOWLEDGMENTS
Thanks are offered to Michelle Marven and Astrid Keir from
Breast Cancer Network Australia for their advice on the
survey and the interpretation of the data and to Caroline Joyce,
Emma Hurst, and Lauren Kadwell for research assistance and
Ussher et al
 support. Finally, we thank all of the individuals with breast
cancer who completed the survey and shared their personal
stories of sexual well-being after breast cancer with us.
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