Sexuality in Adult Cancer Survivors: Challenges and Intervention

Abstract

Sexual dysfunction is one of the most common and distressing consequences of cancer treatment. Although some treatment-related sexual adverse effects are short-term, many survivors face long-term effects such as treatment-induced menopause, altered gonadal function, and significant surgical disfigurement. Profound sexual dysfunction has been shown to have a significant negative effect on quality of life. Although these problems have been well documented and there are a range of intervention strategies that can help patients cope with treatment-related sexual problems, many survivors do not feel prepared for potential sexual changes and often do not receive adequate support to manage sexual dysfunction. Numerous barriers contribute to this underprovided aspect of survivorship care, including lack of provider training and access to readily available resources. In addition, psychological, relational, and cultural factors significantly influence sexuality but are often not taken into consideration in research and clinical practice. By taking an integrative approach and providing survivors with appropriate screening, information, and support, sexual dysfunction and accompanying distress can be significantly alleviated. In this article, we aim to provide a concise review of the most common sexual problems experienced by survivors and highlight some of the most promising evidence-based practices for assessment and intervention. We also address limitations encountered in research and practice and explore future directions, including suggestions for adopting an integrative treatment model to address sexual dysfunction in a cancer survivorship treatment setting.

Full text

Sexuality in Adult Cancer Survivors: Challenges
and Intervention
Sharon L. Bober and Veronica Sanchez Varela
Sharon L. Bober, Sexual Health
Program, Dana-Farber Cancer Institute/
Harvard Medical School; and Veronica
Sanchez Varela, Dana-Farber Cancer
Institute, Perini Family Survivors’
Center, Boston, MA.
Submitted January 13, 2012; accepted
May 18, 2012; published online ahead
of print at www.jco.org on September
24, 2012.
Authors’ disclosures of potential con-
flicts of interest and author contribu-
tions are found at the end of this
article.
Corresponding author: Sharon L. Bober,
PhD, Sexual Health Program, Dana-
Farber Cancer Institute/Harvard Medical
School, 450 Brookline Ave, D321,
Boston, MA 02215; e-mail: sharon_
bober@dfci.harvard.edu.
© 2012 by American Society of Clinical
Oncology
0732-183X/12/3030-3712/$20.00
DOI: 10.1200/JCO.2012.41.7915
ABSTRACT
Sexual dysfunction is one of the most common and distressing consequences of cancer treatment.
Although some treatment-related sexual adverse effects are short-term, many survivors face long-term
effects such as treatment-induced menopause, altered gonadal function, and significant surgical disfigure-
ment. Profound sexual dysfunction has been shown to have a significant negative effect on quality of life.
Although these problems have been well documented and there are a range of intervention strategies that
can help patients cope with treatment-related sexual problems, many survivors do not feel prepared for
potential sexual changes and often do not receive adequate support to manage sexual dysfunction.
Numerous barriers contribute to this underprovided aspect of survivorship care, including lack of provider
training and access to readily available resources. In addition, psychological, relational, and cultural factors
significantly influence sexuality but are often not taken into consideration in research and clinical
practice. By taking an integrative approach and providing survivors with appropriate screening,
information, and support, sexual dysfunction and accompanying distress can be significantly alleviated.
In this article, we aim to provide a concise review of the most common sexual problems experienced
by survivors and highlight some of the most promising evidence-based practices for assessment and
intervention. We also address limitations encountered in research and practice and explore future
directions, including suggestions for adopting an integrative treatment model to address sexual
dysfunction in a cancer survivorship treatment setting.
J Clin Oncol 30:3712-3719. © 2012 by American Society of Clinical Oncology
INTRODUCTION
Now that the close to 12 million cancer survivors in
the United States
1
are “living beyond cancer,” it has
become clear that sexual function is often pro-
foundly disrupted by cancer treatment.
2
All of the
modalities used to effectively treat cancer, including
surgery, chemotherapy, radiation, and hormonal
therapies, have the potential to significantly impair
sexual function, an outcome that often remains a
distressing and unresolved reality for cancer survi-
vors. There is a need to not only understand how
various cancer treatments affect aspects of sexuality,
but to move toward effective assessment and tar-
geted interventions that address cancer-related sex-
ual dysfunction. Given that sexuality comprises
psychological, relational, and cultural elements in
addition to physiologic factors, it is critical to em-
brace an integrative bio-psycho-social approach to
understanding and addressing this fundamental as-
pect of survivors’experience (Fig 1).
In this article, we aim to provide a concise re-
view of the most common sexual problems (Table 1)
experienced by survivors and highlight some of the
most promising evidence-based practices for both
assessment and intervention. We will also address
limitations encountered in research and practice,
including the scarcity of empirically validated assess-
ment tools and evidence-based intervention re-
search, barriers to communication with cancer
survivors about sexuality, and the lack of socio-
cultural awareness surrounding this topic. Finally,
we will explore future directions, including sugges-
tions for adopting an integrative treatment model to
address sexual dysfunction in a cancer survivorship
treatment setting.
SEXUALITY AND WOMENⴕS CANCERS
Primary problems facing female cancer survivors are
low desire, arousal, lubrication problems, and
pain.
3,4
Women who undergo abrupt treatment-
induced menopause often find themselves in a vex-
ing feedback loop in which they lose interest in
sexual activity because it is painful and, conse-
quently, vaginal atrophy and loss of desire become
exacerbated with the passing of time. Hormonal
treatments (eg, aromatase inhibitors) typically cause
cancer survivors who are postmenopausal to face an
increase of menopausal symptoms that also nega-
tively affect sexual function.
51,52
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VOLUME 30 䡠NUMBER 30 䡠OCTOBER 20 2012
3712 © 2012 by American Society of Clinical Oncology

Worry about the surgical impact on the body and concern about
body image are quite common.
8,9
For the majority of breast cancer
survivors, although most report being satisfied with the appearance of
their breasts after reconstruction,
10
there is little preparation for an
abundance of other less obvious but distressing changes, such as loss of
breast and nipple sensation and alterations in proprioceptive feed-
back.
53
Surgery for gynecologic cancer often results in significant
barriers such as pain and loss of sensation.
54
The majority of gyneco-
logic cancer survivors face debilitating sexual problems persisting over
time.
55
Female patients who undergo pelvic radiation also have signif-
icant sexual problems related to vaginal agglutination, pronounced
vaginal fibrosis, stenosis, and loss of lubrication.
56
SEXUALITY AND MENⴕS CANCERS
Prostate cancer is the second most common type of cancer diagno-
sis,
57
and treatments frequently lead to erectile dysfunction (ED)
27
as well as loss of penile length, loss of desire, and loss of orgasmic
satisfaction.
23,58-62
Despite modifications in surgical techniques to
reduce morbidity, sexual problems remain a pervasive and dis-
tressing adverse effect of radical prostatectomy surgery, with a
majority of men never regaining preoperative levels of function. In
addition, radiation therapy for prostate cancer, both external beam
radiation therapy and brachytherapy, can also lead to ED,
28
with
the highest rates of ED resulting from external beam radiation
therapy and brachytherapy used in combination. Hormonal ther-
apy for men also has a profound impact on sexual function. An-
drogen deprivation therapy for men with advanced or high-risk
disease may be life preserving, but it has significant effects on sexual
function.
63-66
In addition to complete loss of libido and ED, andro-
gen deprivation therapy is associated with a range of adverse effects
such as hot flashes, fatigue, gynecomastia, and emotional lability,
all of which can affect self-image, perceived identity, and the expe-
rience of masculinity.
Cancer-
related
sexual
problems
Social/Cultural
Religious beliefs
Cultural values
Social norms
Intervention: Culturally
sensitive educational materials,
values clarification as part of
assessment, integration of
linguistic/cultural interpreters
into multidisciplinary care team
Biologic
Hormonal alterations
Change in body integrity, including
scarring
Loss of body part
Lack of sensation
Pain
Fatigue
Intervention: Medical
consultation including gynecology,
urology, sexual medicine,
endocrinology, pelvic floor
rehabilitation
Interpersonal
Relationship discord
Fear of intimacy
Lack of communication
Intervention: Couples
therapy, supportive group
counseling
Psychological
Emotions (eg, depression,
anxiety)
Cognition (body image,
negative thinking)
Motivation (self-efficacy)
Intervention: Psychiatry
consult, individual counseling,
cognitive-behavioral therapy,
sex therapy techniques
Fig 1. Integrative bio-psycho-social
model for intervention.
Sexuality in Adult Cancer Survivors
www.jco.org © 2012 by American Society of Clinical Oncology 3713

SEXUALITY AND CANCERS AFFECTING WOMEN AND MEN
Colorectal cancer is the third most commonly diagnosed cancer in the
United States,
1
and its treatments, including surgery, radiation, and
chemotherapy, potentially affect sexual function.
67
Pelvic surgery for
colorectal cancer can damage nerves and result in erectile and ejacu-
latory disorders for men and lead to dyspareunia, decreased libido,
and changes in orgasm for women.
68
Pelvic radiation for colorectal
disease is also associated with sexual dysfunction.
68
Challenges follow-
ing these treatments are not only physical. Regaining sexual function
with an ostomy is complex, in which shame, damaged body image,
and fear of embarrassment are common experiences.
39
Bladder cancer
also has a significant impact on male and female sexual function.
Standard radical cystectomy results in high rates of ED for men,
37,69
and pervasive sexual problems for women.
38,40
Male and female bone marrow transplantation survivors have
been shown to have severe sexual dysfunction for years following
transplantation.
48
For women, vaginal graft-versus-host disease can
cause pain, inflammation, scarring, and stenosis; for men, genital
graft-versus-host disease can cause scarring, pain, and curvature of the
penis.
2
Given the reality of treatment-related immunosuppression,
transplantation survivors are often fearful about resuming intimate
contact.
70
The resulting understandable hypervigilance about germs
and infection can then become a real barrier for survivors and partners
in the context of resuming sexual activity.
Survivors of malignancies other than those affecting sexual or-
gans also face treatment-related sexual problems. For example, head
and neck cancer survivors struggle with disfigurement, poor body
image, and increased isolation.
43,44
Adverse effects of treatment, such
as loss of natural saliva, can make acts of intimacy difficult. More
recently, the sharp rise of oncogenic human papillomavirus in head
and neck cancer has raised complicated issues for survivors and part-
ners, including feelings of guilt and responsibility as well as questions
about transmission and allowable sexual practices. Such issues be-
come part of the psychological landscape and have a powerful impact
on sexuality and intimacy.
AGE AND THE IMPACT OF GENERAL PHYSICAL FUNCTION
ON SEXUALITY
Several studies have reported on the relationship between age and
sexual function of cancer survivors. It has been shown that older
women (age ⱖ65 years) are much more likely to permanently stop
sexual activity after surgery for gynecologic cancer
71,72
and that older
Table 1. Common Sexual Problems After Cancer Treatment: Prevalence Table
Cancer Diagnosis
Most Common Sexual
Problems Prevalence References
Women
Breast Overall 30%–100% Sadovsky et al
2
Desire 23%–64% Bloom et al,
3
Arora et al,
4
Fobair and Spiegel,
5
Barni
and Mondin,
6
Burwell et al
7
Arousal or lubrication 20%–48%
Orgasm 16%–36%
Pain/dyspareunia 35%–38%
Body image concerns 30%–67% Fobair et al,
8
Figueiredo et al
9
Poor nipple sensation ⬎90% Djohan et al
10
Gynecologic (ovarian
and cervical only)
Overall ⱕ80% Stewart et al,
11
Carmack et al,
12
Gershenson et al,
13
Bergmark et al,
14
Jensen et al
15
Men
Prostate Erectile dysfunction 14%–90% (high variability likely due to difference
in assessment of sexual function and, to a
lesser degree, to type of treatment).
Schover et al,
16
Tal et al,
17
Dubbleman et al,
18
Rabbani et al,
19
Walsh,
20
Geary et al,
21
Tsujimura
et al,
22
Potosky et al,
23
Mantz et al,
24
Brandeis et
al,
25
Huang et al,
26
Sanda et al,
27
van der Wielen
et al
28
Testicular Dry orgasm 21% Kuczyk et al,
29
Hartmann et al,
30
van Basten et al,
31
Fossa and Kravdal
32
Sperm concentration 0%–ⱕ5%
Women and men
Bladder Erectile dysfunction 0%–86% (high variability likely due to type of
surgery: radical cystectomy, potency-sparing
cystectomy)
Spitz et al,
33
Horenblas et al,
34
Puppo et al,
35
Hautmann and Stein,
36
Zippe et al
37
Overall (women) 0%–100% (high variability likely due to type of
surgery: non–nerve-sparing vnerve-sparing)
Zippe et al,
38
Hart et al,
39
Bhatt et al
40
Colorectal Overall (men) 39%–50% Donovan et al,
41
Jayne et al
42
Overall (women) 6%–60%
Head and neck Overall (men and women) 33%–50% Singer et al,
43
Low et al,
44
Gamba et al
45
Bone
marrow/lymphatic
Erectile dysfunction 18%–50% Humphreys et al,
46
Syrjala et al,
47
Syrjala et al,
48
Spinelli et al,
49
Zantomio
50
Orgasm (men) 3%–22%
Orgasm (women) 24%–72%
Pain (women) 35%–61%
Vaginal dryness 49%–78%
Female tract graft-versus-
host disease
ⱖ25%
Bober and Varela
3714 © 2012 by American Society of Clinical Oncology JOURNAL OF CLINICAL ONCOLOGY

women report significantly lower sexual functioning and quality of life
after treatment for vulvar malignancy compared with younger
women.
73
Younger age has also been shown to be significantly associ-
ated with better postoperative sexual function for men who undergo
nerve-sparing radical prostatectomy.
74
One study
62
has demonstrated
that recovery of sexual function after radical prostatectomy was twice
as likely for men younger than age 50 years compared with men older
than age 70 years.
Further, it has been shown that treatment-related adverse effects
that negatively impact physical function in general can also signifi-
cantly interfere with sexual function for men and women. A recent
focus group study conducted with both men and women across a
broad range of cancers found that sexual problems were associated
with a variety of common physical adverse effects, including fatigue,
hair loss, weight gain, and scarring/organ loss.
75
Chemothera-
py-related fatigue is often considered by patients with cancer to be a
primary factor specifically related to decreased desire and loss of sex-
ual energy.
76
SCREENING
To date, there is no gold standard for screening for sexual dysfunction
in cancer survivors.
75
However, several psychometrically valid screen-
ing measures have been developed, and a recent review of sexual
function measures for cancer populations pointed to three brief, self-
administered tools appropriate for broad use: the University of Cali-
fornia at Los Angeles Prostate Cancer Index/Expanded Prostate
Cancer Index Composite PCI/EPIC,
77
the International Index of
Erectile Function (IIEF),
78
and the Female Sexual Function Index
(FSFI).
79
There is also growing attention on the use of patient self-
report assessments to enhance patient-provider communication, and
attempts have recently been made to add questions about sexual
concerns to standardized lists of patient-reported symptoms in the
clinic setting.
80
It has been shown that a majority of patients with
cancer will endorse sexual problems on a self-report symptom list that
had previously gone unaddressed.
81,82
It would likely be beneficial to
adapt such patient-report outcome measures for assessing sexual
morbidity for cancer survivors to cue providers that they need to
address these issues openly with their patients.
LACK OF COMMUNICATION
Given the preponderance of descriptive evidence about sexual prob-
lems for survivors, the lack of communication about sexuality be-
tween survivors and clinicians is striking.
83
Survivors report a dearth
of information following treatment,
84
persistent unanswered post-
treatment questions,
85
and little direct discussion with their doctors
about sexual issues.
86
Physicians receive little, if any, training about
how to address sexual concerns, and oncologists are generally uncom-
fortable addressing sexual problems.
87
Barriers to communication
that were previously identified are lack of time and lack of preparation
to discuss sexuality with survivors.
88,89
The absence of frank dialogue
about sexuality and cancer treatment is particularly problematic be-
cause it underscores many of the erroneous assumptions made by
survivors. When sexual problems go unaddressed, survivors can in-
terpret this to mean that sexual dysfunction falls in the category of
treatment-related collateral damage that must be endured. This is
perhaps one of the most unfortunate misperceptions that survivors
live with—a mistaken understanding that there are no effective treat-
ments for sexual dysfunction after cancer.
INTERVENTION
For male survivors, the bulk of interventions have been medical trials
focused on the use of phosphodiesterase 5 (PDE-5) inhibitor drugs
(eg, sildenafil, verdanafil, or tadalafil) for ED
2
with PDE-5 inhibitors
currently used as standard first-line treatment. Second-line treatment
involves penile injection therapy in which intracavernosal vasodilators
are delivered directly to the base of the penis. Although this treatment
is effective,
90
most male survivors do not prefer such an invasive
treatment modality.
91
Men on antiandrogen therapy are also treated
with oral agents and injection therapy; however, their pervasive and
distressing lack of libido is more difficult to treat.
66
Although penile
implant surgery is a well-recognized treatment for ED and a viable
option for male cancer survivors who find that nonsurgical options are
either ineffective or undesirable (eg, use of penile injections)
92
it has
been shown that uptake of penile implants is uncommon.
93
In a recent
large-scale study
92
using Surveillance, Epidemiology, and End Results
(SEER) –Medicare data examining use of penile implants following
prostate cancer treatment, less than 1% of men registered a claim for
implant surgery. Lack of uptake may be due to the invasive nature of
the procedure as well as inherent surgical risks.
Using a pharmacologic model for treatment of women’s sex-
ual problems has not been particularly successful. PDE-5 inhibitor
drugs have not been effective for women’s sexual dysfunction,
94
and use of systemic hormonal treatments such as estrogen and
testosterone are problematic because of safety concerns.
2,89
In the
single published study
95
examining use of testosterone in female
survivors, there was no benefit over placebo regarding any aspect of
sexual function. Thus, it is imperative to take a broader more
integrative approach for female survivors that includes nonphar-
macologic strategies as part of their survivorship rehabilitation
plan. Carter et al
96
have provided a helpful outline of strategies for
maintaining vaginal health for female cancer survivors, including
delivery of moisture to vaginal tissue (nonhormonal and hormonal
options), need for mechanical stretching of tissue (vaginal dilators,
pelvic floor muscle control), and increasing vaginal blood flow to
help prevent atrophy (self-touch, use of vibrators).
There are relatively few evidence-based interventions for treating
sexual dysfunction after cancer. Two recent reviews surveyed the ex-
isting intervention literature for sexual problems after cancer. On
examination of 27 nonmedically focused published interventions to
date,
97
it was suggested that delivery of information alone is insuffi-
cient for producing behavior change (eg, use of vaginal dilators), and
that it is critical to engage survivors’ experience of motivation and
self-efficacy to obtain positive and sustainable treatment outcomes. In
a review of the 21 intervention studies for sexual problems following
breast cancer, it was tentatively concluded that despite the widespread
methodologic variability found addressing sexual dysfunction after
treatment, the most effective types of psycho-educational interven-
tions target patients along with their partners and also include some
element of sexual counseling or therapy.
98
One limitation of the re-
search literature to date is the frequent lack of control data. Descriptive
Sexuality in Adult Cancer Survivors
www.jco.org © 2012 by American Society of Clinical Oncology 3715

studies of cancer survivors often cite high rates of sexual dysfunction,
but little is known about how these prevalence rates compare with
those in a noncancer control group.
99
Further, given the strong pla-
cebo response that has been seen in interventions to date, it has been
noted that it is particularly important for future sexual health inter-
ventions to have a control group.
97
CULTURAL, RELATIONAL, AND PSYCHOLOGICAL FACTORS: THE
NEED FOR AN INTEGRATIVE APPROACH
The scarcity of intervention research addressing cancer-related sexual
dysfunction in survivors is aggravated by the lack of literature on
culturally and linguistically appropriate evidence-based practices.
97
Although few studies have specifically attempted to examine cultural
differences among cancer survivors related to sex, data collected to
date suggest that cultural factors may have significant implications.
For example, cultural norms that support silence around sexual topics
may hinder patients from seeking help or initiating communication
with providers. Another example is when a patient comes from a
cultural or religious framework that considers self-touch to be taboo.
Given that sexual rehabilitation strategies may include self-
stimulation aimed at delivering oxygenated blood flow to genital tis-
sue,
96,100
it is understandable how such a recommendation may be
complicated by the broader cultural beliefs about masturbation.
Although it is now understood that specific minority groups in
the United States face a higher risk of receiving more aggressive cancer
Table 2. Brief Strategies for Assessing Cancer-Related Sexual Dysfunction With Survivors
Clinical assessment
Use of sexual function measures previously validated and employed in oncology settings
International Index of Erectile Function 5 (IIEF-5; brief 5-item scale to assess erectile function)
78
University of California at Los Angeles Expanded Prostate Cancer Index Composite (UCLA EPIC; 50-item scale used to assess quality of life after prostate
cancer)
77
Female Sexual Function Index (FSFI; 19-item scale to assess general female sexual function)
79
Survivor self-report
Self-report is an efficient method for basic assessment. Questions may be part of a broader review of systems completed before or at the time of a medical
visit.
Questions about general sexual concerns may be framed with “During the past month, I have been concerned about”and include items such as “loss of
interest in sex,”“pain during sex,”“difficulty with arousal,”and “difficulty with orgasm.”
Discussion with survivors
Self-report must be followed by direct discussion with the survivor. Such interaction may be brief, but it is important for both validating and normalizing the
experience of sexual dysfunction as well as helping to determine next steps for support or intervention. Questions below are provided as examples only,
and providers can incorporate this material into their own style of patient inquiry.
The provider may introduce the topic by making a general comment, such as “Most survivors who have been through this kind of treatment frequently
find themselves facing changes in sexual function.”
The provider can raise the specific issue of sexual functioning by asking “Can you tell me about the impact that cancer has had on sexuality or intimacy
for you?”
If using self-report, the provider should review and inquire about any items that were endorsed.
If no significant issues were raised, the provider may ask a final question: “Is there anything else about sexuality or intimacy that might be helpful for
us to talk about?”This may help encourage reticent survivors to bring up other concerns or close the topic and provide a segue to the next area for
discussion.
Table 3. Suggestions for Resource Sheet
Suggestion for introduction: “Sexuality means different things for every individual, but one thing we know for sure is that sexual problems are common both
during and after treatment. Fortunately, many of these changes can be addressed, and there are effective strategies for making intimacy pleasurable
again.”
General suggestions that providers can offer:
When it comes to reconnecting with intimacy and regaining libido, it is essential to get to know one’s body and to begin with a focus on pleasure, rather
than on sex. Take the pressure off and start gradually by introducing sensual pleasure into daily life such as nonsexual touch and massage. After building
on sensations and working up to more sexual touch, remember to use proper lubrication!
Unplug! Communication is key so turn off the computer/TV and make time to talk with your partner.
Take the opportunity to “expand the repertoire”such as experimenting with fantasy, relaxation exercises, and extending foreplay in order to reconnect.
Get moving! Simple regular movement like walking, dancing, or gentle yoga is important for increasing total energy and sexual vitality.
List of national and/or community-based resources:
American Psychosocial Oncology Society (APOS; www.apos-society.org)
Society for Sex Therapy and Research (SSTAR; www.sstarnet.org)
American Association of Sexual Educators, Counselors and Therapists (AASECT; www.aasect.org)
American Cancer Society (ACS; www.cancer.org)
National Cancer Institute (www.cancer.gov/cancertopics/pdq/supportivecare/sexuality/Patient)
Lance Armstrong Foundation (LAF; www.laf.org)
Susan G. Komen For the Cure (ww5.komen.org)
Bober and Varela
3716 © 2012 by American Society of Clinical Oncology JOURNAL OF CLINICAL ONCOLOGY

treatments and having worse treatment outcomes,
101
resources are
still largely inadequate or insufficient for helping providers and pa-
tients understand how cultural and linguistic factors may affect assess-
ment and treatment for sexual dysfunction. In addition, factors such
as sexual identity, sexual orientation, and sexual attitudes and prac-
tices can add a layer of complexity to patient care by contributing to
further stigmatization of some survivors and to the difficulty in ad-
dressing issues of sexuality. These limitations that currently shape our
practice with subgroups of survivors are arguably exacerbated by a
historical emphasis in applying a solely biomedical model of pa-
tient care.
There is a crucial need to take an integrative approach to manag-
ing sexual dysfunction with cancer survivors. Consistent with our
understanding of sexuality as a multidimensional construct, delivery
of information about sexuality is optimized when it is not only tar-
geted to a survivor’s physical needs but is also congruent with each
survivors’ relational framework, their experience of self-efficacy, and
the cultural context. For instance, the occurrence of treatment-related
sexual dysfunction has significant implications for partners. Parallel to
the silence that survivors routinely experience on this topic in the
medical context, they in turn may have little or no idea how to explain
sexual sequelae to their partners. Survivors and partners often live for
years with this “elephant in the room,” and for those who have poor
communication skills and/or relationship vulnerabilities that predate
the cancer diagnosis, recommendation for more intensive interven-
tion such as couples counseling may be particularly helpful.
102
Al-
though there is only limited evidence regarding the impact of cancer
on relationship intimacy, more generally, data suggest significant vari-
ation in how both physical and emotional intimacy is affected by a
cancer diagnosis.
75
For example, some couples find that nonsexual
intimacy becomes an adequate substitute for previous sexual activity
no longer possible, whereas other couples find that loss of sexual
activity is related to loss of emotional and physical intimacy altogether.
If patients are not queried about how their treatment has specifically
affected relationship intimacy, need for intervention such as couples
counseling may go undetected.
Moreover, when survivors are single, older, widowed, or di-
vorced, providers often assume that sexuality is no longer a relevant
issue that calls for attention. This is a misperception that only serves to
increase a survivor’s sense of shame, frustration, and isolation. It is
essential to also assess what sexual rehabilitation means to an individ-
ual and whether a survivor feels both capable and motivated to carry
out recommendations for sexual rehabilitation. For male survivors,
dropout rates are high with intracavernosal injection therapy,
103
and
for female survivors, although there is consensus on the need to use
vaginal dilation therapy after pelvic radiation, adherence levels for
vaginal dilation are remarkably low.
104
If a survivor is wrestling with
unresolved internal conflicts such as feelings of being damaged or
disfigured or when a survivor does not feel competent or empowered
to manage such a course of action, it is crucial to identify the challenges
and provide the necessary adjunctive support. Moreover, the cultural
competence of the provider is understood to increase treatment ad-
herence, so it is vital that providers take special care in becoming aware
of patients’ backgrounds and treatment expectations.
105
It is critical that education about sexual rehabilitation becomes a
standard element of survivorship care. Given the challenges that sur-
vivors face throughout their cancer journey, it is regrettable that so
many suffer silently from sexual dysfunction because they are not
aware of or informed about available solutions. Most importantly,
oncologists must be willing to address the issue in a straightforward,
nonjudgmental manner. Parallel to queries about symptoms such as
fatigue or pain, survivors need to hear that sexual problems are com-
mon and be asked if they have any questions or concerns about sexual
function (Table 2). Given the various challenges oncologists face,
including limitations on time and lack of formal training in this par-
ticular topic, it is understandable how sexual function often falls off
the radar in the examination room. A first step in addressing this
challenge may involve making educational materials available to sur-
vivors such as tip sheets, referral lists, and other information guides
about sexuality after cancer (Table 3). It is also essential that the
oncology team identify a working list of key resources either in the
hospital or in the community that can be readily recommended to
survivors, including culturally competent sexuality and/or couples
therapists, gynecologists, and urologists who are knowledgeable about
sexual medicine and health psychologists to whom survivors can be
referred for further care. It is our belief that when providers know what
resources are available and where they can send survivors for further
follow-up, they are more willing to open what generally feels like a
Pandora’s box. The first step is to simply acknowledge this aspect of life
along with all other key areas of function, no different than pain, sleep,
and fatigue. The validation that comes from such acknowledgment is
enormously powerful and it provides a key step in the delivery of
genuine “whole person” survivorship care.
AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS
OF INTEREST
The author(s) indicated no potential conflicts of interest.
AUTHOR CONTRIBUTIONS
Conception and design: All authors
Manuscript writing: All authors
Final approval of manuscript: All authors
REFERENCES
1. Howlader N, Noone AM, Krapcho M, et al
(eds): SEER Cancer Statistics Review 1975-2008.
Bethesda, MD, National Cancer Institute, 2011
2. Sadovsky R, Basson R, Krychman M, et al:
Cancer and sexual problems. J Sex Med 7:349-373,
2010
3. Bloom JR, Stewart SL, Chang S, et al: Then
and now: Quality of life of young breast cancer
survivors. Psychooncology 13:147-160, 2004
4. Arora NK, Gustafson DH, Hawkins RP, et al:
Impact of surgery and chemotherapy on the quality
of life of younger women with breast carcinoma: A
prospective study. Cancer 92:1288-1298, 2001
5. Fobair P, Spiegel D: Concerns about sexual-
ity after breast cancer. Cancer J 15:19-26, 2009
6. Barni S, Mondin R: Sexual dysfunction in
treated breast cancer patients. Ann Oncol 8:149-
153, 1997
7. Burwell SR, Case LD, Kaelin C, et al: Sexual
problems in younger women after breast cancer
surgery. J Clin Oncol 24:2815-2821, 2006
8. Fobair P, Stewart SL, Chang S, et al: Body
image and sexual problems in young women with
breast cancer. Psychooncology 15:579-594, 2006
9. Figueiredo MI, Cullen J, Hwang YT, et al:
Breast cancer treatment in older women: Does
getting what you want improve your long-term body
image and mental health? J Clin Oncol 22:4002-
4009, 2004
10. Djohan R, Gage E, Gatherwright J, et al: Patient
satisfaction following nipple-sparing mastectomy and im-
mediate breast reconstruction: An 8-year outcome study.
Plast Reconstr Surg 125:818-829, 2010
Sexuality in Adult Cancer Survivors
www.jco.org © 2012 by American Society of Clinical Oncology 3717

11. Stewart DE, Wong F, Duff S, et al: “What
doesn’t kill you makes you stronger”: An ovarian
cancer survivor survey. Gynecol Oncol 83:537-542,
2001
12. Carmack Taylor CL, Basen-Engquist K, Shinn
EH, et al: Predictors of sexual functioning in ovarian
cancer patients. J Clin Oncol 22:881-889, 2004
13. Gershenson DM, Miller AM, Champion VL,
et al: Reproductive and sexual function after
platinum-based chemotherapy in long-term ovarian
germ cell tumor survivors: A Gynecologic Oncology
Group Study. J Clin Oncol 25:2792-2797, 2007
14. Bergmark K, Avall-Lundqvist E, Dickman
PW, et al: Vaginal changes and sexuality in women
with a history of cervical cancer. N Engl J Med
340:1383-1389, 1999
15. Jensen PT, Groenvold M, Klee MC, et al:
Early-stage cervical carcinoma, radical hysterec-
tomy, and sexual function: A longitudinal study.
Cancer 100:97-106, 2004
16. Schover LR, Fouladi RT, Warneke CL, et al:
Defining sexual outcomes after treatment for local-
ized prostate carcinoma. Cancer 95:1773-1785,
2002
17. Tal R, Valenzuela R, Aviv N, et al: Persistent
erectile dysfunction following radical prostatectomy:
The association between nerve-sparing status and
the prevalence and chronology of venous leak. J Sex
Med 6:2813-2819, 2009
18. Dubbelman YD, Dohle GR, Schro¨der FH:
Sexual function before and after radical retropubic
prostatectomy: A systematic review of prognostic
indicators for a successful outcome. Eur Urol 50:
711-718, 2006
19. Rabbani F, Stapleton AM, Kattan MW, et al:
Factors predicting recovery of erections after radical
prostatectomy. J Urol 164:1929-1934, 2000
20. Walsh PC: Radical prostatectomy for local-
ized prostate cancer provides durable cancer control
with excellent quality of life: A structured debate.
J Urol 163:1802-1807, 2000
21. Geary ES, Dendinger TE, Freiha FS, et al:
Nerve sparing radical prostatectomy: A different
view. J Urol 154:145-149, 1995
22. Tsujimura A, Matsumiya K, Miyagawa Y, et
al: Relation between erectile dysfunction and urinary
incontinence after nerve-sparing and non-nerve-
sparing radical prostatectomy. Urol Int 73:31-35,
2004
23. Potosky AL, Davis WW, Hoffman RM, et al:
Five-year outcomes after prostatectomy or radio-
therapy for prostate cancer: The prostate cancer
outcomes study. J Natl Cancer Inst 96:1358-1367,
2004
24. Mantz CA, Song P, Farhangi E, et al: Potency
probability following conformal megavoltage radio-
therapy using conventional doses for localized pros-
tate cancer. Int J Radiat Oncol Biol Phys 37:551-557,
1997
25. Brandeis JM, Litwin MS, Burnison CM, et al:
Quality of life outcomes after brachytherapy for
early stage prostate cancer. J Urol 163:851-857,
2000
26. Huang J, Sadetsky N, Carroll P, et al: Predic-
tors of HRQOL during long-term follow-up of men
treated for prostate cancer. Presented at 2007
American Society of Clinical Oncology Prostate Can-
cer Symposium, Orlando, FL, February 22-24, 2007
27. Sanda MG, Dunn RL, Michalski J, et al:
Quality of life and satisfaction with outcome among
prostate-cancer survivors. N Engl J Med 358:1250-
1261, 2008
28. van der Wielen GJ, van Putten WL, Incrocci
L: Sexual function after three-dimensional conformal
radiotherapy for prostate cancer: Results from a
dose-escalation trial. Int J Radiat Oncol Biol Phys
68:479-484, 2007
29. Kuczyk M, Machtens S, Bokemeyer C, et al:
Sexual function and fertility after treatment of tes-
ticular cancer. Curr Opin Urol 10:473-477, 2000
30. Hartmann JT, Albrecht C, Schmoll HJ, et al:
Long-term effects on sexual function and fertility
after treatment of testicular cancer. Br J Cancer
80:801-807, 1999
31. van Basten JP, van Driel MF, Hoekstra HJ, et
al: Objective and subjective effects of treatment for
testicular cancer on sexual function. BJU Int 84:671-
678, 1999
32. Fosså SD, Kravdal O: Fertility in Norwegian
testicular cancer patients. Br J Cancer 82:737-741,
2000
33. Spitz A, Stein JP, Lieskovsky G, et al: Ortho-
topic urinary diversion with preservation of erectile
and ejaculatory function in men requiring radical
cystectomy for nonurothelial malignancy: A new
technique. J Urol 161:1761-1764, 1999
34. Horenblas S, Meinhardt W, Ijzerman W, et al:
Sexuality preserving cystectomy and neobladder:
Initial results. J Urol 166:837-840, 2001
35. Puppo P, Introini C, Bertolotto F, et al: Po-
tency preserving cystectomy with intrafascial pros-
tatectomy for high risk superficial bladder cancer.
J Urol 179:1727-1732, 2008; discussion 1732
36. Hautmann RE, Stein JP: Neobladder with
prostatic capsule and seminal-sparing cystectomy
for bladder cancer: A step in the wrong direction.
Urol Clin North Am 32:177-185, 2005
37. Zippe CD, Raina R, Massanyi EZ, et al: Sex-
ual function after male radical cystectomy in a
sexually active population. Urology 64:682-685,
2004; discussion 685-686
38. Zippe CD, Raina R, Shah AD, et al: Female
sexual dysfunction after radical cystectomy: A new
outcome measure. Urology 63:1153-1157, 2004
39. Hart S, Skinner EC, Meyerowitz BE, et al:
Quality of life after radical cystectomy for bladder
cancer in patients with an ileal conduit, cutaneous or
urethral kock pouch. J Urol 162:77-81, 1999
40. Bhatt A, Nandipati K, Dhar N, et al: Neuro-
vascular preservation in orthotopic cystectomy: Im-
pact on female sexual function. Urology 67:742-745,
2006
41. Donovan KA, Thompson LM, Hoffe SE: Sex-
ual function in colorectal cancer survivors. Cancer
Control 17:44-51, 2010
42. Jayne DG, Guillou PJ, Thorpe H, et al: Ran-
domized trial of laparoscopic-assisted resection of
colorectal carcinoma: 3-year results of the UK MRC
CLASICC Trial Group. J Clin Oncol 25:3061-3068,
2007
43. Singer S, Danker H, Dietz A, et al: Sexual
problems after total or partial laryngectomy. Laryn-
goscope 118:2218-2224, 2008
44. Low C, Fullarton M, Parkinson E, et al: Issues
of intimacy and sexual dysfunction following major
head and neck cancer treatment. Oral Oncol 45:898-
903, 2009
45. Gamba A, Romano M, Grosso IM, et al:
Psychosocial adjustment of patients surgically
treated for head and neck cancer. Head Neck 14:
218-223, 1992
46. Humphreys CT, Tallman B, Altmaier EM, et
al: Sexual functioning in patients undergoing bone
marrow transplantation: A longitudinal study. Bone
Marrow Transplant 39:491-496, 2007
47. Syrjala KL, Roth-Roemer SL, Abrams JR, et
al: Prevalence and predictors of sexual dysfunction
in long-term survivors of marrow transplantation.
J Clin Oncol 16:3148-3157, 1998
48. Syrjala KL, Kurland BF, Abrams JR, et al:
Sexual function changes during the 5 years after
high-dose treatment and hematopoietic cell trans-
plantation for malignancy, with case-matched con-
trols at 5 years. Blood 111:989-996, 2008
49. Spinelli S, Chiodi S, Costantini S, et al: Fe-
male genital tract graft-versus-host disease follow-
ing allogeneic bone marrow transplantation.
Haematologica 88:1163-1168, 2003
50. Zantomio D, Grigg AP, MacGregor L, et al:
Female genital tract graft-versus-host disease: Inci-
dence, risk factors and recommendations for man-
agement. Bone Marrow Transplant 38:567-572,
2006
51. Mok K, Juraskova I, Friedlander M: The im-
pact of aromatase inhibitors on sexual functioning:
Current knowledge and future research directions.
Breast 17:436-440, 2008
52. Derzko C, Elliott S, Lam W: Management of
sexual dysfunction in postmenopausal breast cancer
patients taking adjuvant aromatase inhibitor therapy.
Curr Oncol 14:S20 –S40, 2007 (suppl 1)
53. Snell L, McCarthy C, Klassen A, et al: Clari-
fying the expectations of patients undergoing im-
plant breast reconstruction: A qualitative study.
Plast Reconstr Surg 126:1825-1830, 2010
54. Aerts L, Enzlin P, Verhaeghe J, et al: Sexual
and psychological functioning in women after pelvic
surgery for gynaecological cancer. Eur J Gynaecol
Oncol 30:652-656, 2009
55. Ratner ES, Foran KA, Schwartz PE, et al:
Sexuality and intimacy after gynecological cancer.
Maturitas 66:23-26, 2010
56. Miles T, Johnson N: Vaginal dilator therapy
for women receiving pelvic radiotherapy. Cochrane
Database Syst Rev 9:CD007291, 2010
57. American Cancer Society: Cancer Facts &
Figures, 2007. Atlanta, GA, American Cancer Soci-
ety, 2007
58. Catalona WJ, Carvalhal GF, Mager DE, et al:
Potency, continence and complication rates in 1,870
consecutive radical retropubic prostatectomies. J Urol
162:433-438, 1999
59. Fulmer BR, Bissonette EA, Petroni GR, et al:
Prospective assessment of voiding and sexual func-
tion after treatment for localized prostate carcinoma:
Comparison of radical prostatectomy to hormono-
brachytherapy with and without external beam ra-
diotherapy. Cancer 91:2046-2055, 2001
60. Guillonneau B, Cathelineau X, Doublet JD, et
al: Laparoscopic radical prostatectomy: Assessment
after 550 procedures. Crit Rev Oncol Hematol 43:
123-133, 2002
61. Katz R, Salomon L, Hoznek A, et al: Patient
reported sexual function following laparoscopic rad-
ical prostatectomy. J Urol 168:2078-2082, 2002
62. Kundu SD, Roehl KA, Eggener SE, et al:
Potency, continence and complications in 3,477
consecutive radical retropubic prostatectomies. J Urol
172:2227-2231, 2004
63. Holzbeierlein JM, Castle E, Thrasher JB:
Complications of androgen deprivation therapy: Pre-
vention and treatment. Oncology (Williston Park)
18:303-309, 2004; discussion 310, 315, 319-321
64. Thompson CA, Shanafelt TD, Loprinzi CL:
Andropause: Symptom management for prostate
cancer patients treated with hormonal ablation. On-
cologist 8:474-487, 2003
65. Herr HW, O’Sullivan M: Quality of life of
asymptomatic men with nonmetastatic prostate
cancer on androgen deprivation therapy. J Urol
163:1743-1746, 2000
Bober and Varela
3718 © 2012 by American Society of Clinical Oncology JOURNAL OF CLINICAL ONCOLOGY

66. Elliott S, Latini DM, Walker LM, et al: Andro-
gen deprivation therapy for prostate cancer: Recom-
mendations to improve patient and partner quality of
life. J Sex Med 7:2996-3010, 2010
67. American Cancer Society: Cancer Facts &
Figures 2009. Atlanta, GA, American Cancer Soci-
ety, 2009
68. Havenga K, Maas CP, DeRuiter MC, et al:
Avoiding long-term disturbance to bladder and sex-
ual function in pelvic surgery, particularly with rectal
cancer. Semin Surg Oncol 18:235-243, 2000
69. van der Aa MN, Bekker MD, van der Kwast
TH, et al: Sexual function of patients under surveil-
lance for bladder cancer. BJU Int 104:35-40, 2009
70. Yi JC, Syrjala KL: Sexuality after hematopoi-
etic stem cell transplantation. Cancer J 15:57-64,
2009
71. Janda M, Obermair A, Cella D, et al: Vulvar
cancer patients’ quality of life: A qualitative assess-
ment. Int J Gynecol Cancer 14:875-881, 2004
72. Green MS, Naumann RW, Elliot M, et al:
Sexual dysfunction following vulvectomy. Gynecol
Oncol 77:73-77, 2000
73. Likes WM, Stegbauer C, Tillmanns T, et al:
Correlates of sexual function following vulvar exci-
sion. Gynecol Oncol 105:600-603, 2007
74. Noldus J, Michl U, Graefen M, et al: Patient-
reported sexual function after nerve-sparing radical
retropubic prostatectomy. Eur Urol 42:118-124,
2002
75. Flynn KE, Jeffery DD, Keefe FJ, et al: Sexual
functioning along the cancer continuum: Focus group
results from the Patient-Reported Outcomes Measure-
ment Information System (PROMIS). Psychooncology
20:378-386, 2011
76. Webber K, Mok K, Bennett B, et al: If I am in
the mood, I enjoy it: An exploration of cancer-related
fatigue and sexual functioning in women with breast
cancer. Oncologist 16:1333-1344, 2011
77. Wei JT, Dunn RL, Litwin MS, et al: Develop-
ment and validation of the Expanded Prostate Can-
cer Index Composite (EPIC) for comprehensive
assessment of health-related quality of life in men
with prostate cancer. Urology 56:899-905, 2000
78. Rosen RC, Cappelleri JC, Smith MD, et al:
Development and evaluation of an abridged, 5-item
version of the International Index of Erectile Func-
tion (IIEF-5) as a diagnostic tool for erectile dysfunc-
tion. Int J Impot Res 11:319-326, 1999
79. Rosen R, Brown C, Heiman J, et al: The
Female Sexual Function Index (FSFI): A multidimen-
sional self-report instrument for the assessment of
female sexual function. J Sex Marital Ther 26:191-
208, 2000
80. Berry DL, Blumenstein BA, Halpenny B, et
al: Enhancing patient-provider communication with
the electronic self-report assessment for cancer: A
randomized trial. J Clin Oncol 29:1029-1035, 2011
81. Reese JB, Keefe FJ, Somers TJ, et al: Cop-
ing with sexual concerns after cancer: The use of
flexible coping. Support Care Cancer 18:785-800,
2010
82. Reese JB: Coping with sexual concerns after
cancer. Curr Opin Oncol 23:313-321, 2011
83. Flynn KE, Reese JB, Jeffery DD, et al: Pa-
tient experiences with communication about sex
during and after treatment for cancer. Psychooncol-
ogy doi: 10.1002/pon.1947 [epub ahead of print on
March 10, 2011]
84. Abbott-Anderson K, Kwekkeboom KL: A sys-
tematic review of sexual concerns reported by gy-
necological cancer survivors. Gynecol Oncol 124:
477-489, 2012
85. Hammond C, Abrams JR, Syrjala KL: Fertility
and risk factors for elevated infertility concern in
10-year hematopoietic cell transplant survivors and
case-matched controls. J Clin Oncol 25:3511-3517,
2007
86. Hendren SK, O’Connor BI, Liu M, et al:
Prevalence of male and female sexual dysfunction is
high following surgery for rectal cancer. Ann Surg
242:212-223, 2005
87. Day R, Ganz PA, Costantino JP, et al: Health-
related quality of life and tamoxifen in breast cancer
prevention: A report from the National Surgical Ad-
juvant Breast and Bowel Project P-1 Study. J Clin
Oncol 17:2659-2669, 1999
88. Park ER, Bober SL, Campbell EG, et al:
General internist communication about sexual func-
tion with cancer survivors. J Gen Intern Med 24:
S407–S411, 2009 (suppl 2)
89. Bober SL, Recklitis CJ, Campbell EG, et al:
Caring for cancer survivors: A survey of primary care
physicians. Cancer 115:4409-4418, 2009
90. Linet OI, Neff LL: Intracavernous prostaglan-
din E1 in erectile dysfunction. Clin Investig 72:139-
149, 1994
91. Stephenson RA, Mori M, Hsieh YC, et al:
Treatment of erectile dysfunction following therapy
for clinically localized prostate cancer: Patient re-
ported use and outcomes from the Surveillance,
Epidemiology, and End Results Prostate Cancer
Outcomes Study. J Urol 174:646-650, 2005; discus-
sion 650
92. Tal R, Jacks LM, Elkin E, et al: Penile implant
utilization following treatment for prostate cancer:
Analysis of the SEER-Medicare database. J Sex
Med 8:1797-1804, 2011
93. Herkommer K, Niespodziany S, Zorn C, et al:
Management of erectile dysfunction after radical
prostatectomy: Urologists’ assessment vs patient
survey responses [in German]. Urologe A 45:336,
338-342, 2006
94. Caruso S, Intelisano G, Lupo L, et al: Pre-
menopausal women affected by sexual arousal
disorder treated with sildenafil: A double-blind,
cross-over, placebo-controlled study. BJOG 108:
623-628, 2001
95. Barton DL, Wender DB, Sloan JA, et al:
Randomized controlled trial to evaluate transdermal
testosterone in female cancer survivors with de-
creased libido: North Central Cancer Treatment
Group protocol N02C3. J Natl Cancer Inst 99:672-
679, 2007
96. Carter J, Goldfrank D, Schover LR: Simple
strategies for vaginal health promotion in cancer
survivors. J Sex Med 8:549-559, 2011
97. Brotto LA, Yule M, Breckon E: Psychological
interventions for the sexual sequelae of cancer: A
review of the literature. J Cancer Surviv 4:346-360,
2010
98. Taylor S, Harley C, Ziegler L, et al: Interven-
tions for sexual problems following treatment for
breast cancer: A systematic review. Breast Cancer
Res Treat 130:711-724, 2011
99. Recklitis CJ, Sanchez Varela V, Ng A, et al:
Sexual functioning in long-term survivors of Hodg-
kin’s lymphoma. Psychooncology 19:1229-1233,
2010
100. Billups KL, Berman L, Berman J, et al: A new
non-pharmacological vacuum therapy for female
sexual dysfunction. J Sex Marital Ther 27:435-441,
2001
101. Hewitt M, Greenfield S, Stovall E (eds): From
Cancer Patient to Cancer Survivor: Lost in Transi-
tion. Washington, DC, Institute of Medicine and
National Research Council of the National Acade-
mies, National Academies Press, 2005
102. Manne SL, Kissane DW, Nelson CJ, et al:
Intimacy-enhancing psychological intervention for
men diagnosed with prostate cancer and their part-
ners: A pilot study. J Sex Med 8:1197-1209, 2011
103. Hsiao W, Bennett N, Guhring P, et al: Satis-
faction profiles in men using intracavernosal injec-
tion therapy. J Sex Med 8:512-517, 2011
104. Friedman LC, Abdallah R, Schluchter M, et al:
Adherence to vaginal dilation following high dose
rate brachytherapy for endometrial cancer. Int J
Radiat Oncol Biol Phys 80:751-757, 2011
105. Paniagua FA: Assessing and Treating Cultur-
ally Diverse Clients: A Practical Guide (ed 3). Thou-
sand Oaks, CA, Sage Publications, 2005
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www.jco.org © 2012 by American Society of Clinical Oncology 3719