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PSYCHO-ONCOLOGY

Psycho-Oncology 15: 579594 (2006)


Published online 15 November 2005 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.991

BODY IMAGE AND SEXUAL PROBLEMS IN


YOUNG WOMEN WITH BREAST CANCER
PAT FOBAIRa,*, SUSAN L. STEWARTb, SUBO CHANGc, CAROL DONOFRIOc, PRISCILLA J. BANKSc
and JOAN R. BLOOMd
b

a
Stanford University, USA
University of California, San Francisco, USA
c
Northern California Cancer Center, USA
d
University of California, Berkeley, USA

SUMMARY
Purpose: The purpose of this study was to determine the frequency of body image and sexual problems in the rst
months after treatment among women diagnosed with breast cancer at age 50 or younger.
Background: Breast cancer treatment may have severe eects on the bodies of younger women. Surgical treatment
may be disguring, chemotherapy may cause abrupt menopause, and hormone replacement is not recommended.
Methods: A multi-ethnic population-based sample of 549 women aged 2250 who were married or in a stable
unmarried relationship were interviewed within seven months of diagnosis with in situ, local, or regional breast
cancer.
Results: Body image and sexual problems were experienced by a substantial proportion of women in the early
months after diagnosis. Half of the 546 women experienced two or more body image problems some of the time
(33%), or at least one problem much of the time (17%). Among sexually active women, greater body image
problems were associated with mastectomy and possible reconstruction, hair loss from chemotherapy, concern
with weight gain or loss, poorer mental health, lower self-esteem, and partners diculty understanding ones
feelings. Among the 360 sexually active women, half (52%) reported having a little problem in two or more areas of
sexual functioning (24%), or a denite or serious problem in at least one area (28%). Greater sexual problems were
associated with vaginal dryness, poorer mental health, being married, partners diculty understanding ones
feelings, and more body image problems, and there were signicant ethnic dierences in reported severity.
Conclusions: Diculties related to sexuality and sexual functioning were common and occurred soon after surgical
and adjuvant treatment. Addressing these problems is essential to improve the quality of life of young women with
breast cancer. Copyright # 2005 John Wiley & Sons, Ltd.
KEY WORDS: body image; sexual problems; cancer; mastectomy; chemotherapy; ethnic dierences;

oncology; sexual activity; partners diculty understanding

INTRODUCTION
While breast cancer is the leading cause of cancer
in American women and ranks second among
cancer deaths in women, mortality rates declined
signicantly between 1992 and 1998. The ve-year
survival rate for women of all stages now is 86%,
and 96% for women with local stage disease

*Correspondence to: 1943 Mount Vernon Court, Mountain


View, CA 94040, USA. E-mail: pfobair@stanford.edu

Copyright # 2005 John Wiley & Sons, Ltd.

(American Cancer Society, 2002). This medical


progress requires examining psychosocial quality
of life issues among breast cancer survivors.
Women who developed breast cancer were more
likely than women who remained free of breast
carcinoma to experience reduced physical function, role function, vitality, and social function
(Michael et al., 2000). The goal of this paper is to
understand the body image and sexual problems of
a group of younger, more ethnically diverse,
recently diagnosed breast cancer survivors than
has typically been surveyed. Early problems are of
importance as they may be distressing to this
Received 22 November 2004
Accepted 12 August 2005

580

P. FOBAIR ET AL.

group of young women and may also lead to later


problems.
BACKGROUND
Body image, sexuality and sexual problems
Body image and sexual functioning are aspects
of human behavior that depend upon ones
vitality, physical functioning, role and social
functioning (Mock, 1993). Body image is dened
as the mental picture of ones body, an attitude
about the physical self, appearance, and state of
health, wholeness, normal functioning, and sexuality. Body image is a component of a larger
concept of self that for women includes feeling
feminine and attractive (Mock, 1993; Carver et al.,
1998; Hopwood, 1993; Cohen et al., 1998; White,
2000), enjoying ones body as a symbol of social
expression, and as a way of being in the world
(Cohen et al., 1998). The way in which one
experiences her body is highly subjective, and is a
product of her perceptions, thoughts, and feelings
about body size, competence and function (Cohen
et al., 1998; White, 2000). The signicance of body
image as a concept in the life of women was
underscored in a study by Pikler and Winterowd
(2003) who found that the better ones body
image, the better women coped with cancer.
Women with better body image perceptions had
higher levels of self-condence in coping with
breast cancer (Pikler and Winterowd, 2003).
Negative perceptions of body image among breast
cancer survivors include dissatisfaction with appearance, perceived loss of femininity and body
integrity, reluctance to look at ones self naked,
feeling less sexually attractive, self consciousness
about appearance, and dissatisfaction with surgical scars (Hopwood, 1993; Cohen et al., 1998;
White, 2000; Beckmann et al., 1983; Bartelink
et al., 1985; de Haes et al., 1986; Steinberg et al.,
1985; Sanger and Rezniko, 1981; Lasry et al.,
1987; Kemeny et al., 1988; Wellisch et al., 1989;
Ganz et al., 1992; Pozo et al., 1992; Ganz et al.,
2003). The relationship of good body image with
the resumption of sexual relations and sexual
dysfunction is inconsistent. While the majority of
studies have found this relationship (Carver et al.,
1998; Beckmann et al., 1983; Steinberg et al., 1985;
Pozo et al., 1992; Ganz et al., 2004; Yurek et al.,
2000; Lee et al., 1992; Wolberg et al., 1989; Schain
et al., 1994) a few have not (Ashcroft et al., 1985;

Copyright # 2005 John Wiley & Sons, Ltd.

Penman et al., 1986; Ganz et al., 1987; Goldberg


et al., 1992).
Human sexuality includes sexual activity, an
ever-changing experience aecting how one views
herself, her body, and sexual relationships (Hordern, 2000). Having sexual problems (or dysfunction) includes experiencing disturbances in sexual
desire and physiological changes associated with
loss of sexual desire and arousal, reduction in
sexual pleasure, diculty in achieving orgasm,
anxiety about sexual performance, pain during
intercourse, and not nding sex pleasurable
(Laumann et al., 1994, 1999; American Psychiatric
Association, 1994; Greendale et al., 1996). Women
treated for breast cancer by mastectomy and/or
chemotherapy have also reported problems with
sexual functioning (Ganz et al., 2004; Carpenter
et al., 2002; Young-McCaughan, 1996; Ganz et al.,
1998a) that is, those associated with treatmentrelated menopause (Ganz et al., 2003). Sexual
problems and sexual functioning have been found
to persist years after diagnosis with breast cancer
(Ganz et al., 2002).
From 35 to 43% of healthy women also
complain of one or more sexual problems (Laumann et al., 1999; Rosen et al., 1993; Ganz, 1995).
The problems noted include lack of sexual interest,
diculty in becoming sexually aroused, inability to
relax and enjoy sex, diculty reaching orgasm and
lack of pleasure in sexual activity as well as issues
related to menopausal symptoms such as painful
intercourse due to vaginal dryness. In one of a few
studies that included non-cancer comparisons,
women with mastectomy plus adjuvant chemotherapy reported signicantly more body-image
dissatisfaction and feminine self-image concerns
compared with women treated for gall bladder
disease, negative breast biopsy, or healthy women,
but no dierences were found among groups in
sexual activity (Penman et al., 1986).
The research on body image and sexuality has
often used data elicited from white or EuroAmerican women. There are a few studies with
quantitative and qualitative results with ethnically
diverse groups. Results from these studies have
found both similarities among patients (Pikler and
Winterowd, 2003; Ashing-Giwa et al., 1999) as
well as ethnic dierences (Kagawa-Singer et al.,
1997; Spencer et al., 1999) in their responses to
breast cancer treatment. For example, Spencer and
colleagues found that Latina women were more
likely to report sexual problems than were
other racial/ethnic groups and African-American

Psycho-Oncology 15: 579594 (2006)

PROBLEMS IN YOUNG WOMEN WITH BREAST CANCER

women were the less concerned than Euro-American and Latina women about sexuality issues and
partner concerns (Spencer et al., 1999).
Changes in body image and sexual functioning: the
rst twelve months
There is no consensus if the type of surgery
received (mastectomy or breast conserving surgery) is related to body image dissatisfaction
during the rst year post-treatment. Some studies
found that women with a mastectomy were more
likely to report body image dissatisfaction than
those with breast conserving treatment (Beckmann
et al., 1983; Steinberg et al., 1985; Ganz et al.,
1992; Yurek et al., 2000; Lee et al., 1992; Schain
et al., 1994; Taylor et al., 2002; Arora et al., 2001;
Polivy, 1977; Avis et al., 2004), while other studies
did not nd type of surgery to be a signicant
problem (Wolberg et al., 1989; Ashcroft et al.,
1985; Penman et al., 1986; Goldberg et al., 1992;
Holmberg et al., 1989). Length of time since
treatment can be a factor in how women feel about
their appearance. In an earlier analysis of Phase 1
data, Bloom et al. (1998) found that women
interviewed soon after diagnosis had a better body
image than those interviewed at 67 months postdiagnosis. This result is consistent for EuroAmerican women and Asian women (Ganz et al.,
1996; Ashing-Giwa et al., 2004).
Sexual functioning declined during the rst year
after breast cancer treatment with chemotherapy
in three studies (Ganz et al., 2004; Yurek et al.,
2000; Arora et al., 2001). During the rst six
months after treatment Ganz et al. (2004) found
that sexual functioning was worse for women who
received chemotherapy than for those who did not,
regardless of type of surgery. Yurek et al. (2000)
found sexual activity after treatment was predicted
by the extent of treatment and menopausal status,
as well as by prior frequency of intercourse and
sexual self-schema. Menopausal status was important to the womans subsequent sexual desire
and sexual arousal, while extent of treatment was
related to her ability to experience orgasm and
total sexual responsiveness (Yurek et al., 2000).
Arora et al. (2001) found that women who
received chemotherapy were signicantly less
satised with their sex lives.
In summary, the accumulated literature indicates that body image problems and sexuality are
aected by breast cancer treatment during the rst

Copyright # 2005 John Wiley & Sons, Ltd.

581

year of survivorship. While the literature is mixed,


the preponderance of research indicates that body
image is more likely to be aected by mastectomy
compared to breast conserving treatment. And
women who have adjuvant chemotherapy compared to hormone or radiation treatment report
more menopausal symptoms and sexual problems.
Two signicant groups (younger women and
women of color), underrepresented in this literature, are addressed in the current study. It is our
intention to look at these issues during or
immediately following treatment as these problems
may be at their peak. During a dicult time,
sexual problems are one more bad thing that is
happening. Problems at this time not only cause
immediate distress, but may also set the stage for
future quality of life concerns. These women are at
a time in their lives when sexual issues are
important to themselves and in relationships with
their partners. Based on the literature, this study
addresses four questions: (1) Are young women
sexually active in the early months after treatment?
(2) How common are body image and sexual
problems after treatment for breast cancer? (3)
What demographic dierences, illness and treatment dierences, and psychosocial dierences
explain body image and sexual problems? (4)
And nally, what is the relationship between body
image and sexual problems?

METHODS
This study is part of a larger project, Breast
Cancer in Young Women: A Population-Based
Approach, whose purpose was to develop and
evaluate psycho-educational support groups to
help women age 50 and under cope with their
diagnosis of breast cancer (Bloom et al., 1998,
1999a,b; Bloom and Kessler, 1994). The research
had two phases: In the rst phase, focus groups
and a cross-sectional survey of young women with
breast cancer were carried out to help specify the
approach and topics to be included in the
intervention. In order to determine the best time
for intervention, the sample contained an equal
number of women within two months of diagnosis
and 67 months post-diagnosis N 332. Since
time post-diagnosis was not found to be a issue for
the intervention, in the second phase, 391 women
completed an interview 27 months after diagnosis
and then were randomly assigned to the 10-week

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P. FOBAIR ET AL.

support group intervention or a control condition


(Bloom et al., 1999a). All women were reinterviewed twice post-intervention at three and
six months after the baseline survey. As a crosssectional survey of needs, this study focuses on the
women who participated in the Phase 1 survey or
in the Phase 2 baseline survey. While there is some
variability in time post-diagnosis, all women
received surgery and were surveyed prior to the
end of treatment.
Sample
The women participating in this study were
diagnosed between 1994 and 1997 and were
identied by the Greater Bay Area Cancer Registry,
which is part of the Surveillance, Epidemiology and
End Results (SEER) program and the California
Cancer Registry, through the Rapid Case Ascertainment procedure (RCA). The women were invited to
participate in the study following the usual SEER
procedures: (a) The womans physician was approached; (b) following physician assent, a letter
was sent to the woman; and (c) the interviewer
contacted the woman by telephone and if she
agreed, an appointment was made for the face-toface interview. To be eligible, a woman had to be
age 50 or younger at rst diagnosis of invasive or in
situ breast cancer, reside in the designated counties
within the Bay Area, and be able to complete the
interview in English. Women, who were 27 months
post-diagnosis, based on preliminary information
from the RCA, were targeted.
Of the 723 women interviewed in the Phase 1
survey or the baseline Phase 2 survey, the study
sample for this analysis included all 549 (251 from
Phase 1 and 298 from Phase 2) who were married
or in a stable unmarried relationship; diagnosed
with in situ, local, or regional breast cancer;
treated with surgery before the interview; and
self-identied as White, African-American, Latina,
or Asian. A total of 174 respondents were excluded
from the analysis due to remote or unknown stage
disease n 17, no surgery before interview
n 26, other or unknown race n 7, or no
partner n 124.
Measures
Date of diagnosis and stage of disease came
from the cancer registry database. All other
measures came from an in-person interview, which

Copyright # 2005 John Wiley & Sons, Ltd.

contained questions about surgical and adjuvant


treatment, general measures of health status,
quality-of-life measures specic to breast cancer,
and socio-demographic characteristics. The analyses reported in this paper are based on the
following data.
Outcomes. Measures included questions on
body image, sexual activity, and sexual problems.
The measure of Body Image Problems is the sum of
three items (range is from 3 to 9), Cronbachs
alpha=0.80 in our sample, from the 23-item
Breast Cancer Problems Checklist (Schain, 1979)
and are a subset of Hopwood 10 item scale
(Hopwood, 1993). Respondents were told, Here is
a list of problems that you may have experienced
since your diagnosis and treatment. Please indicate
how often you have experienced each of the
following. The items included in the Body Image
Problems scale were: feeling less feminine, feeling
self-conscious (embarrassed) about your body,
and worrying about your sexual attractiveness.
Response options were: hardly ever or never
(coded 1), some of the time (coded 2), and much
or most of the time (coded 3). Sexual activity is
based on a yes/no response to the question Have
you been sexually active during the past 4 weeks?
Women who answered no were asked a series of
yes/no questions regarding reasons for not being
sexually active. Sexual Problems is the sum of
four items (range from 0 to 12), Cronbachs
alpha=0.88 in our sample, from the MOS
used in the Breast Cancer Prevention Trial (Ganz
et al., 1995; Ware, 1993). Sexually active women
were asked, How much of a problem was each
of the following over the past 4 weeks: lack of
sexual interest, difculty in becoming sexually
aroused, unable to relax and enjoy sex, difculty
in having an orgasm or reaching a climax.
Response options for each of the 4 items were:
not a problem (coded 0), a little problem (coded
1), a denite problem (coded 2), and a serious
problem (coded 3).
Independent variables. Demographic variables
included: age (at baseline, dichotomized as less
than 40 or 40 or older), ethnicity (White, AfricanAmerican, Latina, or Asian), education (12 years
or less, greater than 12 years), partner status
(married or having an unmarried partner), and
number of children living at home (none, one, two
or more). Unmarried women were asked, Are you

Psycho-Oncology 15: 579594 (2006)

PROBLEMS IN YOUNG WOMEN WITH BREAST CANCER

part of a stable unmarried relationship? Those


answering, Yes were classied as having an
unmarried partner. Medical variables included
stage of disease (in situ, local, regional), type of
surgery (mastectomy, no reconstruction; mastectomy, having or may have reconstruction;
lumpectomy), adjuvant treatment to date (chemotherapy: yes or no; radiation: yes or no;
tamoxifen: yes or no), and months since diagnosis
(a linear term in regression analyses). Other
physical factors included whether the women were
still having menstrual periods (regularly, irregularly, or not at all) and general health, measured
by a subscale of the Medical Outcomes StudyShort Form (MOS SF-36) (Ware, 1993). Adjuvant
treatment effects included how much in the past
month one has been bothered by weight gain or
loss (hardly ever or never vs some of the time or
much or most of the time), as well as hair loss and
nausea due to chemotherapy (not at all vs some
or a great deal). Hormonal side effects bothering
one in the past month (hardly ever or never vs
some of the time or much or most of the time:
Phase 2) or experienced since beginning chemotherapy or tamoxifen treatment (yes or no:
Phase 1) included hot ashes, sweats, and vaginal
dryness. A summary scale of surgical symptoms
indicated how much in the past month one has
been bothered by swelling of the arm, weakness of
the arm, feeling of stiffness/tightness in the chest
or shoulders, problems in healing of the surgical
wound, numbness or tingling in the area of
surgery, and feeling a loss of balance; response
categories were hardly ever or never (coded 1),
some of the time (coded 2), and much or most of
the time (coded 3).
Psychosocial factors included two subscales of
the MOS SF-36, (vitality and mental health), selfesteem, partners diculty understanding ones
feelings, and body image problems (Michael et al.,
2000; Ware, 1993). Rosenbergs scale of selfesteem contains 10 Likert-formatted items, which
were added together following the procedure
suggested by Lewis (Rosenberg, 1965; Lewis,
1989). Individuals rate themselves as to whether
they have good qualities, have a positive attitude,
feel useless, and so on. This measure of selfconcept is not specic to ones health. A single
item, among nine that focused on the womans
recent experiences as a result of her breast cancer,
assessed the partner relationship in this context.
Women were told, The following is a list of events
and thoughts that describe experiences some

Copyright # 2005 John Wiley & Sons, Ltd.

583

individuals have when a family member or partner


faces a health problem. To what extent have you
had these experiences, as the result of your health
problem, during the last two weeks, including
today. As the result of my illness . . .my partner has
had diculty understanding my feelings. Response options were: not at all (coded 0), a little
bit (coded 1), moderately (coded 2), quite a bit
(coded 3), and extremely (coded 4). This item was
a linear term in regression analyses.
Analysis
The statistical analyses included descriptive
statistics of the socio-demographic and treatment
characteristics of the sample (Table 1) and body
image and sexual problems, and sexual activity
(Table 2); chi-square and t-tests comparing (a)
Phase 1 and Phase 2 participants and (b) the
sample of partnered women n 549 and otherwise eligible respondents without partners n
124 with respect to these characteristics; and
modeling using logistic (Table 3) and multiple
regression analysis (Table 4). Logistic regression
was used to model sexual activity, and multiple
regression analysis was used to model body image
and sexual problems among sexually active women. The independent variables in each model
included socio-demographic characteristics, disease stage, surgical and adjuvant treatment, and
physical and psychosocial factors found to be
associated with body image and sexuality in
previous research. In order to assess the independent eects of body image on sexual functioning in
the presence of possible confounders, body image
was included as an independent variable in the
models of sexual activity and sexual problems.
All regression analyses controlled for whether
women participated in Phase 1 N 251 or Phase
2 N 298 of the study.
RESULTS
Response rate
In Phase 1, of 700 cases identied through RCA,
137 were ineligible, 51 could not be located, and 88
were not reached by the study deadline. Of the 424
eligible women contacted, 61 (14%) refused, 31
(7%) had scheduling problems, and 332 (78%)
were interviewed. In Phase 2, of 1659 cases

Psycho-Oncology 15: 579594 (2006)

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P. FOBAIR ET AL.

Table 1. Socio-demographic and treatment characteristics of


young women with breast cancer (Women with spouses or
partners, n=549)

Table 1. (Continued)

Measure

Adjuvant treatment side eects


Weight gain/loss
Hair loss from chemo
Nausea from chemo

211
274
264

(38%)
(50%)
(48%)

Hormonal side eectsa


Hot ashes
Sweats
Vaginal dryness

122
121
100

(41%)
(41%)
(34%)

Partner has diculty understanding


Not at all
A little bit
Moderately
Quite a bit
Extremely

273
151
55
36
18

(51%)
(28%)
(10%)
(7%)
(3%)

Age at baseline
540
540

Total sample
n (%)
107
442

(20%)
(80%)

Ethnicity
White
Black
Latina
Asian

389
29
45
86

(71%)
(5%)
(8%)
(16%)

Education
12 yrs or less
More than 12

102
446

(19%)
(81%)

Measure

Partner status
Married
Partner

457
92

Total sample
n (%)

Based on Phase 2 only (n=298).

(83%)
(17%)

Children at home
0
1
2 or more

180
140
229

(33%)
(25%)
(42%)

Stage of disease
In situ
Local
Regional

88
248
213

(16%)
(45%)
(39%)

Months since diagnosis


24
57
8 or more

253
275
20

(46%)
(50%)
(4%)

Type of surgical treatment


Mastectomy
No reconstruction
Had/in process of reconstruction
Plans to have reconstruction
Hasnt decided on reconstruction
Lumpectomy

79
102
50
75
243

(14%)
(19%)
(9%)
(14%)
(44%)

identied through RCA , 192 were found to be


ineligible before screening, 133 could not be
located, and 255 were not reached by the study
deadline. Of the 1079 potentially eligible women
contacted, 91 (8%) refused, 43 (4%) had scheduling problems, and 945 (88%) completed the
screener interview. Among those screened, 238
were ineligible for the study and 4 could not be
reached. Of the 703 eligible women contacted, 288
(41%) refused, 24 (3%) had scheduling problems,
and 391 (56%) were interviewed. The recruiting
eorts during Phase 2 yielded a lower response
rate compared to the response rate from Phase 1.
This dierence may be attributed to the fact that
women recruited for Phase 2 were obligated to two
waves of data collection, a larger time commitment, vs one-time participation requested of those
participated in Phase 1. The same instrument was
used to survey women in Phase1 and those in
Phase 2 prior to the intervention.
Respondent characteristics

Adjuvant therapy
Chemotherapy
Radiation therapy
Tamoxifen

322
159
63

(59%)
(29%)
(12%)

Menstrual periods
Regular
Irregular
Stopped

202
123
213

(37%)
(23%)
(40%)

Copyright # 2005 John Wiley & Sons, Ltd.

Eighty percent of the partnered women were age


40 or older. Approximately 30% of the sample was
Asian, Latina, or African-American; approximately one-third of the Asian women were
Chinese, about one-third were Filipina, and the
rest represented a variety of other origins, including Japanese, Asian-Indian, Vietnamese, and

Psycho-Oncology 15: 579594 (2006)

585

PROBLEMS IN YOUNG WOMEN WITH BREAST CANCER

Table 2. Young women with breast cancer: body image problems (women with spouses or partners, n=549) and sexual problems
(sexually active women, n=360)
Measure

Responses

Hardly ever/never
Some of the time
Much/most of the time

301
208
39

(55%)
(38%)
(7%)

Embarrassed about body

Hardly ever/never
Some of the time
Much/most of the time

244
248
55

(45%)
(45%)
(10%)

Worrying about your sexual attractiveness

Hardly ever/never
Some of the time
Much/most of the time

292
199
56

(53%)
(36%)
(10%)

Body Image Problems Scale (mean 4.7, S.D. 1.7)

3: problems hardly ever/never


4: 1 problem some of the time
5-9: 2+ problems some of the time or
1+ problems much/most of the time

177
95
274

(32%)
(17%)
(50%)

Past four weeks

360

(67%)

Not a problem
A little problem
A denite problem
A serious problem
Not a problem
A little problem
A denite problem
A serious problem
Not a problem
A little problem
A denite problem
A serious problem
Not a problem
A little problem
A denite problem
A serious problem
0: no problems
1: 1 little problem
2-12: 2 or more little problems or
1 or more denite/serious problems

157
128
65
10
189
110
49
11
215
101
34
9
230
75
41
10
117
54
185

(44%)
(36%)
(18%)
(3%)
(53%)
(31%)
(14%)
(3%)
(60%)
(28%)
(9%)
(3%)
(65%)
(21%)
(12%)
(3%)
(33%)
(15%)
(52%)

Body Image Problems


Feeling less feminine

Sexually Active
Sexual Problems
Lack of sexual interest

Diculty in becoming sexually aroused

Unable to relax and enjoy sex

Diculty in reaching a climax

Sexual Problems Scale (mean 2.5, S.D. 2.8)

Korean. Most had attended college (81%), 83%


were married with the remainder in a stable
relationship, and 67% had children at home. The
majority of the women was diagnosed with early
stage disease (16% situ and 45% local), were
treated by mastectomy (55%), and had chemotherapy (59%). Nearly two-thirds had irregular or
stopped menstrual periods (76% of those treated

Copyright # 2005 John Wiley & Sons, Ltd.

with chemotherapy vs 43% of those without),


about half experienced hair loss and nausea due to
chemotherapy, and more than one-third were
concerned about weight gain or loss. Hormonal
symptoms were common, with vaginal dryness
reported by one-third of the women (44% of those
treated with chemotherapy vs 18% of those
without). Approximately half reported that in the

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586

P. FOBAIR ET AL.

Table 3. Logistic regression analysis of sexual activity in young


women with breast cancer (women with spouses or partners,
n=523)
Variable

ORa

95% CI

Age at baseline
540
540

1
1.15

(0.64, 2.06)

Ethnicity
White
Black
Latina
Asian

1
1.88
0.53
0.17

(0.55, 6.43)
(0.24, 1.17)
(0.09, 0.32)

Education
More than 12
12 yrs or less

1
1.12

(0.62, 2.02)

Partner status
Married
Partner

1
4.97

(2.27, 10.9)

No. of children at home


None
One
Two or more

1
1.24
1.89

(0.71, 2.16)
(1.13, 3.16)

Type of surgical treatment


Lumpectomy
Mastectomy, had or may have
reconstruction
Mastectomy, no reconstruction

1
0.82

(0.46, 1.48)

0.79

(0.37, 1.67)

Stage of disease
In situ
Local
Regional

1
0.78
0.42

(0.37, 1.68)
(0.17, 0.99)

Adjuvant therapy
Chemotherapyb
Radiation therapyb
Tamoxifenb

0.77
0.96
0.67

(0.29, 2.06)
(0.52, 1.77)
(0.33, 1.35)

Months since diagnosis

1.01

(0.91, 1.13)

Menstrual periods
Regular
Irregular
Stopped

1
0.73
0.55

(0.41, 1.32)
(0.31, 0.98)

Surgical symptoms

0.93

(0.83, 1.05)

Adjuvant treatment side eects


Weight gain/lossb
Hair loss from chemob
Nausea from chemob

1.29
1.32
0.65

(0.82, 2.03)
(0.61, 2.88)
(0.32, 1.32)

Copyright # 2005 John Wiley & Sons, Ltd.

Table 3. (Continued)
Variable

ORa

95% CI

Hormonal side eects


Hot ashesb
Sweatsb
Vaginal drynessb
Vitality
Partner has diculty understanding
Body image problems
General health
Mental health
Self-esteem

0.73
1.03
3.20
1.02
0.89
0.91
0.99
1.01
0.99

(0.39,
(0.56,
(1.86,
(1.00,
(0.73,
(0.77,
(0.98,
(0.99,
(0.94,

1.36)
1.89)
5.51)
1.03)
1.09)
1.05)
1.01)
1.02)
1.05)

OR=odds ratio, CI=condence interval.


a
Adjusted for all covariates shown and study phase.
b
Reference category is NO.

past two weeks their partner had diculty understanding their feelings at least a little bit. Half of
the women experienced two or more body image
problems some of the time (33%), or at least one
problem much of the time (17%), and 67% were
sexually active. Among sexually active women
N 360, about half (52%) reported having a
little problem in two or more areas of sexual
functioning (24%), or a denite or serious problem
in at least one area (28%) of sexual interest,
arousal, enjoyment, or orgasm (Table 1). Phase 2
women were more likely than Phase 1 women to be
under age 40 p 0:02 and less likely to be
interviewed 8 or more months after diagnosis
p 0:03. Phase 1 and 2 women did not dier
signicantly with respect to ethnicity, education,
partner status, number of children at home, stage
of disease, type of surgical or adjuvant treatment,
menstrual status, adjuvant treatment side eects,
hormonal side eects (among women with chemotherapy and/or tamoxifen), partners diculty
understanding, sexual activity, body image problems, or sexual problems.
Women without partners were less likely to have
children at home p50:0001, more likely to be
bothered by weight gain or loss p 0:03, less
likely to report vaginal dryness p 0:01 and,
regarding surgical treatment choices, were more
likely to have had a lumpectomy and less likely to
be undecided about reconstruction p 0:02 than
their partnered counterparts. Partnered and single
women did not dier signicantly with respect to
age, ethnicity, education, study phase, stage of
disease, months since diagnosis, type of adjuvant
treatment, menstrual status, hair loss or nausea
from chemotherapy, hot ashes, or sweats.

Psycho-Oncology 15: 579594 (2006)

587

PROBLEMS IN YOUNG WOMEN WITH BREAST CANCER

Table 4. Multiple regression analysis of body image and sexual problems in young women with breast cancer (sexually active
women)
Body image problems
n=350
Adj. R2=0.21
Coea

Sexual problems
n=346
Adj. R2=0.30

95% CI

Coea

95% CI

0.10

(0.32, 0.50)

0.36

(1.05, 0.33)

0.17
0.06
0.44

(0.83, 0.48)
(0.59, 0.71)
(0.97, 0.09)

0.38
1.29
1.11

(1.44, 0.68)
(2.35, 0.23)
(2.00, 0.24)

0.11
0.06

(0.32, 0.54)
(0.35, 0.47)

0.27
0.88

(0.98, 0.44)
(1.57, 0.19)

One child at home


Two or more children at home

0.05
0.01

(0.48, 0.38)
(0.38, 0.40)

0.12
0.20

(0.85, 0.61)
(0.85, 0.47)

Local stage disease


Regional stage disease

0.07
0.13

(0.58, 0.44)
(0.72, 0.46)

0.04
0.73

(0.80, 0.88)
(0.25, 1.71)

(0.22, 1.10)
(0.41, 0.73)

0.48
0.12

(0.23, 1.19)
(0.82, 1.06)

Age 540
Black
Latina
Asian
Education 4 12 years
Unmarried partner

Mastectomy, had or may have reconstruction


Mastectomy, no reconstruction
Had chemotherapy
Had radiation therapy
Had tamoxifen

0.67
0.16
0.51
0.05
0.25

(1.25, 0.23)
(0.38, 0.48)
(0.80, 0.30)

0.98
0.21
0.49

(2.21, 0.25)
(0.50, 0.92)
(1.41, 0.43)

0.03

(0.05, 0.12)

0.03

(0.17, 0.11)

0.12
0.15

(0.29, 0.53)
(0.56, 0.26)

0.21
0.40

(0.90, 0.48)
(1.09, 0.29)

0.01

(0.09, 0.11)

0.04

(0.12, 0.20)
(0.49, 0.65)
(0.56, 1.48)
(0.96, 0.80)

Months since diagnosis


Menstrual periods irregular
Menstrual periods stopped
Surgical symptoms

(0.25, 0.91)
(0.03, 1.25)

Weight gain/loss
Hair loss from chemo
Nausea from chemo

0.58
0.64
0.04

(0.49, 0.57)

0.08
0.46
0.08

Hot ashes
Sweats
Vaginal dryness

0.03
0.05
0.22

(0.46, 0.52)
(0.42, 0.52)
(0.17, 0.61)

0.55
0.40
1.14

Vitality
General health
Mental health

0.004
0.004
0.016

(0.004, 0.01)
(0.01, 0.01)
(0.03, 0.004)

Self-esteem
Partner has diculty understanding
Body image problems

0.06
0.23

(0.10, 0.02)
(0.07, 0.39)

0.01
0.01
0.03
0.05
0.56
0.26

(0.23, 1.33)
(0.38, 1.18)
(0.49, 1.79)
(0.03, 0.01)
(0.03, 0.01)
(0.05, 0.01)
(0.03, 0.13)
(0.29, 0.83)
(0.08, 0.44)

coe=regression coecient, CI=condence interval.


 p5 0.05.
a
Controlling for all covariates shown and study phase.

Sexual activity
As mentioned above, two-thirds of the partnered women were sexually active. The most

Copyright # 2005 John Wiley & Sons, Ltd.

common reasons (not mutually exclusive) cited


for being sexually inactive were that the woman
was not interested (50%), had a physical problem
that made sexual relations dicult or uncomfor-

Psycho-Oncology 15: 579594 (2006)

588

P. FOBAIR ET AL.

table (43%), or was too tired (42%). Less common


reasons were that the womans partner was too
tired (20%), not interested (16%), or had a
physical problem (9%) (Table 2). The results of
multiple logistic regression analysis, summarized
in Table 3 below, revealed that women were more
likely to be sexually active if they were in an
unmarried relationship, had two or more children
at home, experienced more vitality, and reported
vaginal dryness. Women who were not sexually
active were more likely to have regional stage
disease, to have stopped menstruating, and to be
Asian. Thus, responding to the rst question, these
data indicate that two-thirds of partnered young
women are sexually active during treatment and
also provide some of the factors that are associated
with their being sexually active.

more areas of sexual functioning, or a denite or


serious problem in at least one area. In this group
of women, lack of sexual interest was a denite or
serious problem for 21%; diculty in becoming
sexually aroused for 17%; inability to relax and
enjoy sex, 12%; and diculty in having an orgasm
or in reaching a climax, 14% (Table 2). In response
to the second question posed, serious sexual
problems were relatively rare albeit more common
than body image problems.
Results of multiple regression analysis, also
reported in Table 4 and following from question
three, show that greater sexual problems among
sexually active women were associated with being
married, reporting vaginal dryness, poorer mental
health, partners greater diculty understanding
ones feelings, and more problems with body
image. Latina and Asian women reported fewer
sexual problems than did Euro-Americans.

Body image problems


Half of the partnered women experienced two or
more body image problems some of the time, or at
least one problem much of the time. Serious
problems were relatively uncommon: feeling selfconscious or embarrassed about their body much
of the time was reported by 10%, worries about
sexual attractiveness by 10%, and feeling less
feminine by 7% (Table 2). As Table 4 shows, in
multiple regression analysis, greater body image
problems among sexually active women were
associated with type of surgery, concern about
weight gain or loss, hair loss due to chemotherapy,
partners greater diculty understanding ones
feelings, and lower scores in mental health and
self-esteem. Women without partners were more
likely to feel embarrassed much of the time p
0:03 and to worry more about their sexual
attractiveness p 0:03 but did not signicantly
dier from partnered women with respect to
feeling less feminine or mean body image score.
In response to the second question posed, serious
body image problems were rare. And, with regard
to question three, predictors include treatment
related issues as well as personal issues such as the
womens self-esteem, mental health and relations
with their partners.
Sexual problems
Among the 360 sexually active women, about
half reported having a little problem in two or

Copyright # 2005 John Wiley & Sons, Ltd.

Relation of body image and sexual problems


Finally, in accord with question four, body
image and sexual problems remained correlated
after accounting for socio-demographic characteristics, disease stage, surgical and adjuvant treatment, and physical and psychosocial factors.

DISCUSSION
This study examined sexual activity and problems
related to body image and sexual functioning in a
large, population-based, ethnically diverse sample
of women who were age 50 or younger at time of
breast cancer diagnosis and who were assessed
soon after they completed surgical treatment and
while they may have been undergoing adjuvant
therapy. The sample that includes 29% women of
color (Asian women being the largest subgroup)
reects the ethnic distribution of the Cancer
Registry in which, 73% of invasive and in situ
breast cancer cases in 19941997 were among
white non-Hispanic women. The epidemiological
literature indicates that Euro-Americans and
women of higher socio-economic status are at
increased risk of breast cancer and, therefore,
comprise a higher proportion of the cases than in
the general population (American Cancer Society,
2002).

Psycho-Oncology 15: 579594 (2006)

PROBLEMS IN YOUNG WOMEN WITH BREAST CANCER

Results indicate that almost two-thirds of the


women were sexually active during this time.
Results also show that substantial proportions of
these young women with breast cancer experienced
diculties with body image and sexual functioning
albeit few women reported serious problems in
these areas. Although the number of non-EuroAmerican women in specic ethnic groups was
relatively small, some dierences regarding sexual
activity and sexual problems were found. The
proportion of sexually active women was smaller
among Asians than Euro-Americans, and Asian
women and Latinas reported the fewest number of
sexual problems. The current nding of no
dierences in body image by ethnicity is consistent
with other recent reports (Pikler and Winterowd,
2003; Ashing-Giwa et al., 2004).
The lower prevalence of sexual activity reported
by Asian women may be due to cultural dierences
between Asian and Euro-Americans values regarding the womens relationship with her partner
and her role within the family. Kagawa-Singer and
Wellisch (Kagawa-Singer and Wellisch, 2002)
report that Asian women are more concerned
about family harmony while Euro-American
women are more concerned about sexual intimacy
with their partner. Thus, it would be inconsiderate
for a partner to request intimate relationships with
his wife following a breast cancer diagnosis. In
addition, Mo (1992) suggests that for a man too
frequent intercourse results in a loss of vital yang
essence, making a man vulnerable to disease. In
traditional Chinese culture, female sexuality is
viewed as dangerous and expressing curiosity or
being knowledgeable about the body is considered
sexually inappropriate. Thus, among sexually
active Chinese women (and maybe for Asian
women in general), it would not only be immodest
to discuss sexual problems, but also it would be
considered inappropriate (Mo, 1992).
The nding that Latinas had fewer sexual
problems after breast cancer treatment than
Euro-American women contrasts with the report
by Spencer and colleagues, who found that Latina
women with early stage breast cancer were more
likely than other racial/ethnic groups to report
sexual problems (Spencer et al., 1999). Results of
the current study are also inconsistent with prior
research showing that Latina women were more
vulnerable than Euro-American women to concerns about sexuality issues, rejection, partner
concerns and sexual disruption, while AfricanAmerican women were the least concerned (Spen-

Copyright # 2005 John Wiley & Sons, Ltd.

589

cer et al., 1999). However, these results are


consistent with a new report by Ashing-Giwa
et al. (2004) who, based on open-ended interviews,
report that both Euro-Americans and Latinas
report that their damaged womanhood resulted
in decreases in sexual desire and activity after
breast cancer. The dierences between the current
studys ndings and those of Spencer may be due
in part to dierences in demographics (this=
sample was younger, mean age of 45 vs 54; all were
interviewed in English vs 73%), outcome measures
(similar measures of body image, but dierent
measures of sexual functioning), and the inclusion
of psychosocial independent variables (mental
health and self-esteem vs neither). Additional
research is needed to explore the relationship of
race/ethnicity to sexual activity, body image, and
sexual problems soon after breast cancer treatment
(Wyatt et al., 1988; Wilmoth and Ross, 1997).
Cultural factors appear to be involved in the
problems experienced (Kagawa-Singer et al., 1997;
Spencer et al., 1999; Kagawa-Singer and Wellisch,
2002; Wyatt et al., 1998; Wilmoth and Sanders,
2001), and culture also may inuence the extent to
which body image and sexual problems are
reported (Pasick et al., 2001; DOnofrio, 1989).
In particular Asian and Latina women may not
want to discuss these issues, especially in a face-toface interview (Pasick et al., 2001; DOnofrio,
1989).
Comparing the ndings of the current study
with other studies of breast cancer survivors
reveals similar patterns of sexual activity. In the
current research, 67% of partnered young women
with breast cancer were sexually active in the early
months after treatment, a proportion comparable
to the 65% observed by Ganz and colleagues in
their study of breast cancer survivors of all ages
(Ganz et al., 1998b, 2002). The nding that sexual
activity was more common among women with an
unmarried partner than among married women
also is consistent with the Ganz et al. (1999)
nding that women with new partners since their
breast cancer diagnosis were more likely to be
sexually active. Finding that women with children
at home are more likely to be sexually active
reinforces the fact that this is a young group of
women who are at a period in their lives where
sexuality is a central issue in their lives. In
addition, in the current study, it was found that
married women were more likely to report sexual
problems than women with unmarried partners
(Ganz et al., 1999).

Psycho-Oncology 15: 579594 (2006)

590

P. FOBAIR ET AL.

The 50% of young women with breast


cancer who reported two or more body image
problems some of the time, or at least one problem
much of the time in our study is somewhat
lower than the 75% of breast cancer survivors
that Ganz and colleagues found were unhappy
with their appearance (Ganz et al., 1998a,b).
The current study found that women who were
having or contemplating breast reconstruction
were the least satised with their body image,
indicating a possible reason for seeking reconstruction. These results are consistent with those of
Rowland et al. (2000) who found that women who
had mastectomy with reconstruction were most
likely to report that breast cancer had a negative
impact on their sex lives but suggests that the
pathway may be through changes in their body
image.
Comparing the ndings about young women
with breast cancer to research on similarly aged
healthy women suggests that breast cancer treatment substantially reduces sexual activity and
increases problems with body image and sexuality.
Only 67% of the young women with breast cancer
were sexually active compared to from 74 to 81%
of healthy young women in other studies (Laumann et al., 1994, 1999; Rosen et al., 1993; Bloom
et al., 1999b). Body image problems (to the extent
specied above) were reported by 50% of the
breast cancer sample, comparable to (e.g. 47%)
healthy young women in other studies (Ganz et al.,
1998a,b). However, lack of sexual interest by 57%
of breast cancer sample compared to 38% of
healthy women; diculty in becoming sexually
aroused by 48% of the breast cancer sample
compared to 31% of healthy women; and inability
to relax and enjoy sex by 40% of women in the
current study compared to 28% of healthy women
(Laumann et al., 1994, 1999). With regard to
menopausal symptoms reported by healthy women albeit generally women who were perimenopausal (by the selection criteria of 50 or
younger most of the women in the current study
were not menopausal prior to treatment), vaginal
dryness was reported by 34% of the women with
breast cancer compared to 19% of healthy younger women and hot ashes and sweats were
reported by 41% of the women with breast cancer
and by 26% of healthy women. Keeping in mind
that many of the women in our study were still in
active treatment, these dierences nonetheless
point to the need for additional comparative
studies (Rosen et al., 1993; Ganz, 1995).

Copyright # 2005 John Wiley & Sons, Ltd.

With regard to the third question that this


exploratory study sought to answer, further
research also is needed on factors associated with
body image and sexual problems after breast
cancer treatment. Corroborating the results of
other studies, (Lasry et al., 1987; Ganz et al., 1995,
1996, 1998b; Lindley et al., 1998; Meyerowitz
et al., 1999), both marital status and partners
diculty understanding were associated with
sexual problems in this study. In addition, sexual
problems were associated with vaginal dryness, a
side eect of breast cancer treatment (the positive
association between vaginal dryness and being
sexually active is very likely because women tended
to become aware of vaginal dryness by engaging in
sexual activity). Mental health and the quality of
the partnership relationship were independently
associated with both body image and sexual
problems, but self-esteem was associated only with
problems in body image. Adjuvant treatment was
not independently associated with body image
problems, but weight change and hair loss were.
Body image and sexual problems remained correlated after accounting for various physical and
psychosocial factors. These ndings demonstrate
the importance of the side eects of breast cancer
treatment on body image and sexual problems.
From a clinical perspective, the ndings underscore the importance of counseling women and
their partners about the expected consequences of
treatment-related side eects on their intimate
relationships. While from a research perspective
these results demonstrate the need for additional
studies that illuminate how body image and sexual
problems are related to each other and aected by
interactions between the side eects of breast
cancer treatment and pre-existing problems with
mental health, self-esteem, and partner relationships (Spencer et al., 1999; Schover, 1991; Holmberg et al., 2001). However, to understand the
implications of how the symptoms from the
womens initial treatment predict longer-term
outcomes is left to longitudinal studies. It is
assumed that some symptoms such as hair loss
are only temporary and will only have a short-term
eect. Others, such as vaginal dryness caused by
early and abrupt menopause may have longerterm eects. The relationship with ones partner
has an eect independent of these treatment
related symptoms.
This study has several limitations. First, the
analytic sample combines data from two sources
with somewhat dierent response rates. The two

Psycho-Oncology 15: 579594 (2006)

PROBLEMS IN YOUNG WOMEN WITH BREAST CANCER

sources of data (Phase 1 and 2) did not dier


substantially with regard to socio-demographic
factors, disease and treatment characteristics or
outcome variables. However, it is always possible
that they might have diered on some unmeasured
factor. With this limitation in mind, we controlled
for study phase in the analyses. Second, the
women were interviewed between two and seven
months post-diagnosis. Although some responses
could be attributed to where they were in
treatment, time post-diagnosis was taken into
consideration statistically in the analytic models.
Third, there was a dierence in the time frames of
the body image and sexual problems questions.
The body image questions were imbedded in a
longer list of questions regarding problems experienced since diagnosis. The sexual problems questions were designed to obtain a snapshot of the
status quo. Therefore, the analysis measures the
association between body image problems experienced since diagnosis and current sexual problems.
This may be viewed as a limitation, however, since
the period of time between diagnosis and interview
was relatively short (27 months), it is not
unreasonable to regard the body image variable
as a measure of current concerns. Fourth, even
though Laumann et al. (1999) used face-to-face
interviews in their seminal study of sexual issues in
women, face-to-face interviews may not be the best
way to collect information on sensitive issues such
as sexual activity, for example Asian and Latina
women may have been less likely to admit sexual
problems even to an ethnically similar interviewer
(Pasick et al., 2001; DOnofrio, 1989). Fifth, this
study did not include comparison samples of older
women with breast cancer or young cancer-free
women. While results were compared with ndings
from other research on both groups, such comparisons are compromised by dierences in study
purpose, design, and timing. Despite this limitation, the consistency of the current results with
those of other studies of more age-diverse samples
of breast cancer survivors, some of whom were
further from treatment, indicates the strength of
our ndings [see for example, Bloom and Kessler
(1994) where dierences were found between
younger women (in their 30s and 40s) and older
women (in their 60s)].
It is acknowledged that the measurement of
body image is problematic as noted by Anderson
and LeGrand (1991) and Yurek et al. (2000).
These authors indicate that generally the measurement of body image is diuse and associated with

Copyright # 2005 John Wiley & Sons, Ltd.

591

many other variables; therefore, it is dicult both


conceptually and empirically to truly understand
what is meant. Nevertheless, there is a larger and
accumulating literature indicating that body image, regardless of how it is measured, dierentiates
between mastectomy and breast conserving surgery. In the current study, dierences in body
image between women who have had a mastectomy and have not ruled out reconstruction and
those who had a lumpectomy were found, the
former reporting poorer body image than the
latter. These ndings provide evidence of
discriminant validity. In addition, consistent with
others including those using dierent, albeit
short measures of body image, the measure used
in this study had high internal consistency
(Penman et al., 1986; Avis et al., 2004). The use
of a single item to measure the relationship
between the survivor and her partner is another
limitation of the measurement; however, it was
associated with body image and sexual problems.
And nally, while the analytical techniques used
such as multiple and logistic regression suggests
causality, these data are cross-sectional so that
relationships between variables are discussed as
associations between variables rather than causal
relationships.

CONCLUSIONS AND IMPLICATIONS


Sexual activity, body image, and sexual problems
are common among young women shortly after
breast cancer treatment. Although some dierences were observed by race/ethnicity, sexual
functioning and related problems among the
young women with breast cancer in the current
appear similar to those of breast cancer survivors
more diverse in age and time since treatment.
However, these young breast cancer survivors
were less sexually active and had more body image
and sexual problems than healthy women in their
same age range. The problems reported were
related both to side eects of breast cancer
treatment and to diculties with mental health
and partner relationships that may have been
present prior to breast cancer diagnosis.
Additional research is needed on the relationship of race, ethnicity, and culture to sexual
activity and problems of body image, and sexual
functioning after breast cancer treatment; communications about these matters with partners and

Psycho-Oncology 15: 579594 (2006)

592

P. FOBAIR ET AL.

health care providers; and accuracy of related


reporting in research studies. This study also
highlights the need for research comparing sexuality and body image among young breast cancer
survivors and healthy, cancer free women. Identifying and understanding the relationship of factors
aecting sexual activity, body image, and sexual
problems is another important research need.
Examining interactions between the side eects
of breast cancer treatment and diculties with
relationships, mental health, and self-esteem
stands out as a priority. Longitudinal studies are
required to sort out the causal relationships
between body image and sexual concerns, especially those that are related to abrupt menopause
resulting from adjuvant therapy.
Pending the results of such investigations, this
study brought to mind a number of practical
implications for improving quality of life for
young women with breast cancer. The women
participating in this study could have beneted
from the following:
*

When breast cancer treatment is being planned,


women should be informed about the possible
eects of treatment on sexual activity, body
image, sexual functioning and their interrelationships.
Since married women reported more sexual
problems they may benet from opportunities
to talk with each other and with health
professionals about the complicating issues in
their lives.
Programs and interventions should be developed to help women adjust to the altered
sexual self that emerges after breast cancer
treatment. Such programs may be particularly
important for women who report low selfesteem, mental health problems, and diculties
with partner communication.
Special programs aimed at restoring, improving, or maintaining eective communications
and positive sexual relations also should be
developed for partners of young women treated
for breast cancer.

ACKNOWLEDGEMENTS
An earlier version of this paper was presented at the 6th
World Congress of Psycho-Oncology, Ban, Alberta,

Copyright # 2005 John Wiley & Sons, Ltd.

Canada, 2327 April, 2003. This research was funded by


the National Cancer Institute, RO1 CA 64730.

REFERENCES
American Cancer Society: Cancer Facts & Figures 2002.
2002. American Cancer Society: Atlanta, GA; 917
American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders (4th edn). 1994.
American Psychiatric Association: Washington, DC.
Andersen BL, LeGrand J. 1991. Body image for women:
Conceptualization, assessment, and a test of its
importance to sexual dysfunction and medical illness.
J Sex Res 28: 457477.
Arora NK, Gustafson DH, Hawkins RP et al. 2001.
Impact of surgery and chemotherapy on the quality of
life of younger women with breast carcinoma: A
prospective study. Cancer 92: 12881298.
Ashcroft JJ, Leinster SJ, Slade PD. 1985. Breast
cancer}patient choice of treatment: Preliminary
communication. J R Soc Med 78: 4346.
Ashing-Giwa K, Ganz PA, Petersen L. 1999. Quality of
life of African-American and white long term breast
carcinoma survivors. Cancer 85: 418426.
Ashing-Giwa KT, Padilla G, Tejero J et al. 2004.
Understanding the breast cancer experience of
women: A qualitative study of African American,
Asian American, Latina and Caucasian cancer
survivors. Psycho-Oncology 13: 408428.
Avis NE, Crawford S, Manuel J. 2004. Psychosocial
problems among younger women with breast cancer.
Psycho-Oncology 13: 295308.
Bartelink H, van Dam F, van Dongen J. 1985.
Psychological eects of breast conserving therapy in
comparison with radical mastectomy. Int J Radiat
Oncol Biol Phys 11: 381385.
Beckmann J, Johansen L, Richardt C et al. 1983.
Psychological reactions in younger women operated
on for breast cancer. Amputation versus resection of
the breast with special reference to body-image, sexual
identity and sexual function. Dan Med Bull 30(Suppl
2): 1013.
Bloom JR, DOnofrio C, Banks P, Stewart SL, Morrow
M, Fobair P. 1999a. A psycho-educational group
intervention for young women with breast cancer:
Design and process evaluation. Cancer Res Ther
Control 8: 93102.
Bloom JR, Kessler L. 1994. Risk and timing of
counseling and support interventions for younger
women with breast cancer. J Natl Cancer Inst Monogr
16: 199206.
Bloom JR, Stewart SL, Banks PJ, Johnston M, Peterson
I. 1999b. Design and Impact of a Psycho-Educational
Group Intervention on the Quality of Life of Young
Women with Breast Cancer. American Psychological
Association: Boston, MA.

Psycho-Oncology 15: 579594 (2006)

PROBLEMS IN YOUNG WOMEN WITH BREAST CANCER

Bloom JR, Stewart SL, Johnston M et al. 1998.


Intrusiveness of illness and quality of life in
young women with breast cancer. Psycho-Oncology
7: 89100.
Carpenter JS, Johnson D, Wagner L et al. 2002. Hot
ashes and related outcomes in breast cancer survivors and matched comparison women. Oncol Nurs
Forum 29: E16E25.
Carver CS, Pozo-Kaderman C, Price AA et al. 1998.
Concern about aspects of body image and adjustment
to early stage breast cancer. Psychosom Med 60:
168174.
Cohen MZ, Kahn DL, Steeves RH. 1998. Beyond body
image: The experience of breast cancer. Oncol Nurs
Forum 25: 835841.
DOnofrio CN. 1989. The use of self-reports on sensitive
behaviors in health program evaluation. In Evaluating
Health Promotion Programs. New Directions in
Program Evaluation, Braverman MT (ed). 43: 5974.
Ganz PA. 1995. Impact of quality of life outcomes on
clinical practice. Oncology (Huntingt) 9: 6165.
Ganz PA, Coscarelli A, Fred C et al. 1996. Breast cancer
survivors: Psychosocial concerns and quality of life.
Breast Cancer Res Treat 38: 183199.
Ganz PA, Day R, Ware Jr JE et al. 1995. Base-line
quality-of-life
assessment
in
the
National
Surgical Adjuvant Breast and Bowel Project
Breast Cancer Prevention Trial. J Natl Cancer Inst
87: 13721382.
Ganz PA, Desmond KA, Belin TR et al. 1999.
Predictors of sexual health in women after a breast
cancer diagnosis. J Clin Oncol 17: 23712380.
Ganz PA, Desmond KA, Leedham B et al. 2002. Quality
of life in long-term, disease-free survivors of breast
cancer: A follow-up study. J Natl Cancer Inst 94:
3949.
Ganz PA, Greendale GA, Petersen L et al. 2003. Breast
cancer in younger women: Reproductive and
late health eects of treatment. J Clin Oncol 21:
41844193.
Ganz PA, Kwan L, Stanton AL et al. 2004. Quality of
life at the end of primary treatment of breast cancer:
First results from the moving beyond cancer randomized trial. J Natl Cancer Inst 96: 376387.
Ganz PA, Lee JJ, Sim MS et al. 1992. Exploring the
inuence of multiple variables on the relationship of
age to quality of life in women with breast cancer.
J Clin Epidemiol 45: 473485.
Ganz PA, Rowland JH, Desmond K et al. 1998. Life
after breast cancer: Understanding womens healthrelated quality of life and sexual functioning. J Clin
Oncol 16: 501514.
Ganz PA, Rowland JH, Meyerowitz BE et al. 1998a.
Impact of dierent adjuvant therapy strategies on
quality of life in breast cancer survivors. Recent
Results Cancer Res 152: 396411.
Ganz PA, Schag CC, Polinsky ML et al. 1987.
Rehabilitation needs and breast cancer: The rst

Copyright # 2005 John Wiley & Sons, Ltd.

593

month after primary therapy. Breast Cancer Res Treat


10: 243253.
Goldberg JA, Scott RN, Davidson PM et al. 1992.
Psychological morbidity in the rst year after breast
surgery. Eur J Surg Oncol 18: 327331.
Greendale G, Hogan P, Shumaker S. 1996. Sexual
functioning in postmenopausal women: The Postmenopausal Estrogen/Progestin Interventions (PEPI)
Trial. J Womens Health 5: 445448.
de Haes JC, van Oostrom MA, Welvaart K. 1986. The
eect of radical and conserving surgery on the quality
of life of early breast cancer patients. Eur J Surg
Oncol 12: 337342.
Holmberg L, Omne-Ponten M, Burns T et al. 1989.
Psychosocial adjustment after mastectomy and breastconserving treatment. Cancer 64: 969974.
Holmberg SK, Scott LL, Alexy W et al. 2001. Relationship issues of women with breast cancer. Cancer Nurs
24: 5360.
Hopwood P. 1993. The assessment of body image in
cancer patients. Eur J Cancer 29A: 276281.
Hordern A. 2000. Intimacy and sexuality for the woman
with breast cancer. Cancer Nurs 23: 230236.
Kagawa-Singer M, Wellisch DK. 2002. Breast
cancer patients perceptions of their husbands
support in a cross-cultural context. Psycho-Oncology
11: 114.
Kagawa-Singer M, Wellisch DK, Durvasula R. 1997.
Impact of breast cancer on Asian American and
Anglo American women. Cult Med Psychiatry 21:
449480.
Kemeny MM, Wellisch DK, Schain WS. 1988. Psychosocial outcome in a randomized surgical trial
for treatment of primary breast cancer. Cancer 62:
12311237.
Lasry JC, Margolese RG, Poisson R et al. 1987.
Depression and body image following mastectomy
and lumpectomy. J Chronic Dis 40: 529534.
Laumann EE, Gagnon JH, Michael RT et al. 1994. The
social organization of sexuality. Sexual Practices in
the United States. The University of Chicago Press:
Chicago.
Laumann EO, Paik A, Rosen RC. 1999. Sexual
dysfunction in the United States: Prevalence and
predictors. J Am Med Assoc 281: 537544.
Lee MS, Love SB, Mitchell JB et al. 1992. Mastectomy
or conservation for early breast cancer: Psychological
morbidity. Eur J Cancer 28A: 13401344.
Lewis FM. 1989. Attributions of control, experienced
learning and psychosocial well being in patients with
advanced cancer. J Psychosoc Oncol 7: 105119.
Lindley C, Vasa S, Sawyer WT et al. 1998. Quality of life
and preferences for treatment following systemic
adjuvant therapy for early-stage breast cancer. J Clin
Oncol 16: 13801387.
Meyerowitz BE, Desmond KA, Rowland JH et al. 1999.
Sexuality following breast cancer. J Sex Marital Ther
25: 237250.

Psycho-Oncology 15: 579594 (2006)

594

P. FOBAIR ET AL.

Michael YL, Kawachi I, Berkman LF et al. 2000. The


persistent impact of breast carcinoma on functional
health status: Prospective evidence from the Nurses
Health Study. Cancer 89: 21762186.
Mo B. 1992. Modesty, sexuality, and breast health in
Chinese-American women. West J Med 157: 260264.
Mock V. 1993. Body image in women treated for breast
cancer. Nurs Res 42: 153157.
Pasick RJ, Stewart SL, Bird JA et al. 2001. Quality of
data in multiethnic health surveys. Public Health
Reports 116(Supp): 223243.
Penman DT, Bloom JR, Fotopoulos S et al. 1986. The
impact of mastectomy on self-concept and social
function: A combined cross-sectional and longitudinal
study with comparison groups. Women Health 11:
101130.
Pikler V, Winterowd C. 2003. Racial and body image
dierences in coping for women diagnosed with breast
cancer. Health Psychol 22: 632637.
Polivy J. 1977. Psychological eects of mastectomy on a
womans feminine self-concept. J Nerv Ment Dis 164:
7787.
Pozo C, Carver CS, Noriega V et al. 1992. Eects of
mastectomy versus lumpectomy on emotional adjustment to breast cancer: A prospective study of the rst
year postsurgery. J Clin Oncol 10: 12921298.
Rosen RC, Taylor JF, Leiblum SR et al. 1993.
Prevalence of sexual dysfunction in women: Results
of a survey study of 329 women in an outpatient
gynecological clinic. J Sex Marital Ther 19: 171188.
Rosenberg M. 1965. Society and Adolescent Self Image.
Princeton University Press: Princeton, NJ.
Rowland JH, Desmond KA, Meyerowitz BE et al. 2000.
Role of breast reconstructive surgery in physical and
emotional outcomes among breast cancer survivors.
J Natl Cancer Inst 92: 14221429.
Sanger CK, Rezniko M. 1981. A comparison of the
psychological eects of breast-saving procedures
with the modied radical mastectomy. Cancer 48:
23412346.
Schain W. 1979. Breast Cancer Problems Checklist,
Unpublished.
Schain WS, dAngelo TM, Dunn ME et al. 1994.
Mastectomy versus conservative surgery and radiation therapy. Psychosocial consequences. Cancer 73:
12211228.

Copyright # 2005 John Wiley & Sons, Ltd.

Schover LR. 1991. The impact of breast cancer on


sexuality, body image, and intimate relationships. CA
Cancer J Clin 41: 112120.
Spencer SM, Lehman JM, Wynings C et al. 1999.
Concerns about breast cancer and relations to
psychosocial well-being in a multiethnic sample of
early-stage patients. Health Psychol 18: 159168.
Steinberg MD, Juliano MA, Wise L. 1985. Psychological
outcome of lumpectomy versus mastectomy in the
treatment of breast cancer. Am J Psychiatry 142: 3439.
Taylor KL, Lamdan RM, Siegel JE et al. 2002.
Treatment regimen, sexual attractiveness concerns
and psychological adjustment among African
American breast cancer patients. Psycho-Oncology
11: 505517.
Ware JE. 1993. SF-36 Health Survey: Manual and
Interpretation Guide. The Health Institute, New
England Medical Center: Boston, USA.
Wellisch DK, DiMatteo R, Silverstein M et al. 1989.
Psychosocial outcomes of breast cancer therapies:
Lumpectomy versus mastectomy. Psychosomatics 30:
365373.
White CA. 2000. Body image dimensions and cancer: A
heuristic cognitive behavioral model. Psycho-Oncology 9: 183192.
Wilmoth MC, Ross JA. 1997. Womens perception.
Breast cancer treatment and sexuality. Cancer Pract 5:
353359.
Wilmoth MC, Sanders LD. 2001. Accept me for myself:
African American womens issues after breast cancer.
Oncol Nurs Forum 28: 875879.
Wolberg WH, Romsaas EP, Tanner MA et al. 1989.
Psychosexual adaptation to breast cancer surgery.
Cancer 63: 16451655.
Wyatt GE, Desmond KA, Ganz PA et al. 1998. Sexual
functioning and intimacy in African American and
white breast cancer survivors: A descriptive study.
Womens Health 4: 385405.
Young-McCaughan S. 1996. Sexual functioning in
women with breast cancer after treatment with
adjuvant therapy. Cancer Nurs 19: 308319.
Yurek D, Farrar W, Andersen BL. 2000. Breast cancer
surgery: Comparing surgical groups and determining
individual dierences in postoperative sexuality
and body change stress. J Consult Clin Psychol 68:
697709.

Psycho-Oncology 15: 579594 (2006)