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Sexuality in Adult Cancer Survivors: Challenges and Intervention

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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.
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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 WOMENS 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
JOURNAL OF CLINICAL ONCOLOGY REVIEW ARTICLE
VOLUME 30 NUMBER 30 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 MENS 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 65 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 80% 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%–5%
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
25%
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 aboutand 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 repertoiresuch 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
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■■■
Sexuality in Adult Cancer Survivors
www.jco.org © 2012 by American Society of Clinical Oncology 3719
... After diagnosis and treatment, BCS frequently report sexual problems, which are important quality of life issues. [1][2][3][4][5][6][7][8][9] The most frequently reported sexual problems include diminished sexual interest [10][11][12] or desire, 1,2,4,13,14 decreased arousal and lubrication, 1,2,4,11 and pain with vaginal penetration or intercourse. 2,13,14 The vast majority of research on sexuality in BCS is cross-sectional, 6,9,[15][16][17][18][19] based on women aged <50 years, 10,11,[20][21][22][23] those diagnosed within the past year, 1,7,11,17,20 and/or only sexually active BCS. ...
... After diagnosis and treatment, BCS frequently report sexual problems, which are important quality of life issues. [1][2][3][4][5][6][7][8][9] The most frequently reported sexual problems include diminished sexual interest [10][11][12] or desire, 1,2,4,13,14 decreased arousal and lubrication, 1,2,4,11 and pain with vaginal penetration or intercourse. 2,13,14 The vast majority of research on sexuality in BCS is cross-sectional, 6,9,[15][16][17][18][19] based on women aged <50 years, 10,11,[20][21][22][23] those diagnosed within the past year, 1,7,11,17,20 and/or only sexually active BCS. ...
... After diagnosis and treatment, BCS frequently report sexual problems, which are important quality of life issues. [1][2][3][4][5][6][7][8][9] The most frequently reported sexual problems include diminished sexual interest [10][11][12] or desire, 1,2,4,13,14 decreased arousal and lubrication, 1,2,4,11 and pain with vaginal penetration or intercourse. 2,13,14 The vast majority of research on sexuality in BCS is cross-sectional, 6,9,[15][16][17][18][19] based on women aged <50 years, 10,11,[20][21][22][23] those diagnosed within the past year, 1,7,11,17,20 and/or only sexually active BCS. ...
Article
Full-text available
Purpose: To compare sexual functioning from diagnosis to 5 years post diagnosis among breast cancer survivors (BCS) and women without cancer (controls). Patients and methods: Analyses included 118 BCS and 1765 controls from 20 years of the longitudinal Study of Women's Health Across the Nation (SWAN), a multiracial/ethnic cohort of mid-life women assessed approximately annually from 1995 to 2015. Pink SWAN participants reported no cancer at SWAN enrollment and developed (BCS) or did not develop (controls) incident breast cancer after enrollment. Outcomes included: being sexually active or not, intercourse frequency, sexual desire, vaginal dryness, and pain with intercourse. Using longitudinal logistic regression, we compared BCS and controls on prevalence of sexual functioning outcomes with respect to years since diagnosis. In addition, we examined whether menopause transition stage, depressive symptoms, relationship satisfaction, vaginal dryness, or pain with intercourse modified the relation between breast cancer and sexual functioning outcomes. Results: Adjusting for partner status, both BCS and controls reported similar declines over time in being sexually active, sexual intercourse frequency, and sexual desire. Among sexually active women, more BCS than controls consistently reported vaginal dryness with significant differences between 2 and 4 years post-diagnosis, and pain with intercourse, with statistically significant differences between 0.5 years post-diagnosis to 2 years post-diagnosis. Being post-menopausal and reporting depressive symptoms were significant effect modifiers for pain with intercourse with both variables having positive and stronger associations with pain among the controls than among BCS. Conclusion: Except for more reporting of vaginal dryness and pain with intercourse among BCS, negative changes in sexual function during mid-life were similar in those with and without breast cancer.
... Adjuvant endocrine therapies for hormone receptor-positive (HR +) breast cancer, including aromatase inhibitors (AI), tamoxifen, and ovarian function suppression (OFS), have anti-estrogenic effects, often leading to vaginal dryness, dyspareunia, trouble reaching climax, and loss of libido [9]. Sexual function problems are often distressing for women receiving adjuvant endocrine therapy and negatively affect quality of life (QOL) [5,6,10,11]. ...
... For each item, there is also a "not applicable" response which is recoded as "not a problem." The MOS-SP total score is calculated by summing the individual items (range [4][5][6][7][8][9][10][11][12][13][14][15][16] and rescaling from 0 to 100, with higher scores indicating more sexual function problems [38]. The reported mean MOS-SP score for women with early-stage breast cancer ranges from 20 to 36, with standard deviation (SD) 27-31 [1,21,38]. ...
Article
Full-text available
PurposeSexual function problems are common but under-reported among women receiving adjuvant endocrine therapy for breast cancer. Worsening scores on patient-reported outcomes (PROs) may identify those at risk for sexual function problems during treatment. We performed a secondary analysis of prospectively collected PROs in women receiving adjuvant endocrine therapy to identify factors associated with worsening sexual function.Methods Women with stage 0–III breast cancer initiating adjuvant endocrine therapy participating in a prospective cohort completed PROs at baseline, 3, 6, 12, 24, 36, 48, and 60 months. Sexual function was evaluated by the MOS-SP measure. Other measures included PROMIS pain interference, fatigue, depression, anxiety, physical function, and sleep disturbance and the Endocrine Symptom Subscale of the FACT-ES. We evaluated associations between score worsening of at least the minimal important difference (MID) in PROMIS T-scores (4 points) and FACT-ES scores (5 points) with score worsening of at least the MID in MOS-SP scores (8 points) using logistic regression.ResultsAmong 300 participants, 45.7% experienced ≥ 8-point worsening of MOS-SP score at any time point compared to baseline. Worsening endocrine symptoms (OR 1.34, 95% CI 1.22–1.49, p < 0.001), worsening physical function (OR 1.09, 95% CI 1.00–1.18, p = 0.06), and prior mastectomy (OR 1.45, 95% CI 0.94–2.23, p = 0.09) were associated with MOS-SP score worsening by at least the MID.Conclusion Worsening endocrine symptoms and physical function identified on PROs are associated with worsening sexual function during adjuvant endocrine therapy. Routine assessment of these domains with PROs may identify women at risk for sexual function problems.Trial registration numberNCT01937052; Date of Registration: 09/09/2013.
... Previous research has found that the variables related to quality of life of women with breast cancer were age [12,13]; current treatments with associated side effects, such as chemotherapy or radiotherapy [14]; level of family support [15]; symptoms of anxiety and depression [16]; and body image [7]. The variables associated with sexual satisfaction were age [17][18][19], chemotherapy and hormonal treatments [20], relationship satisfaction with their partner [10], symptoms of anxiety and depression [21], and body image [22,23]. ...
Article
Full-text available
This study aimed to determine the quality of life and sexual satisfaction in a sample of 389 women with breast cancer who underwent a surgical treatment and 366 men who were these women’s partners. The sample was recruited from the Portuguese League Against Cancer by 10 trained psychologists who assessed the quality of life and sexual satisfaction of the participants. Data on the sociodemographic variables, diagnosis and treatment in the female participants, relationship with their partner, anxiety and depression, and body image were also collected. It was found that 76.6% and 54.2% of the women had low physical and mental health, respectively, while 100% of partners had acceptable physical and mental health. The predictors of women’s physical health were months since surgery, current treatment, completed treatments, satisfaction with the current relationship with their partner, lower anxiety and depression, and better body image. The predictors of women’s mental health were months since diagnosis and treatment completion, satisfaction with partner support during the illness, lower anxiety and depression, and better body image. The predictors of both physical and mental health of partners were lower anxiety and depression. In addition, 88.4% of women and 100% of partners presented with sexual dysfunction. The predictors of women’s sexual satisfaction were being older, satisfaction with their relationship with their partner before the illness, lower anxiety and depression, and better body image. The predictors of sexual satisfaction of the male partners were psychological/psychiatric support, satisfaction with their current relationship with their partner, and lower anxiety and depression. These findings suggest that interventions targeted at the quality of life of women and sexual satisfaction with a couple perspective are needed.
... 52,53 This may be due to cultural factors and embarrassment. 54,55 For the treatment and management of cancer, there are various treatments such as surgery, chemotherapy, and so forth. 56 Worldwide, more than 60% of medical treatments focus on cancer. ...
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Background and aims: One of the main vital needs for self-care in patients with advanced cancer is information need. Meeting this need has significant positive effects on improving their treatment and care. This study was conducted to identify the unmet information needs of patients with advanced cancer in Iran. Methods: This exploratory study was performed from July to February 2021 in the Kerman University of Medical Sciences cancer treatment centers. Oncologists selected eligible patients by purposeful sampling method. Semistructured and in-depth interviews were conducted with selected patients to collect data. Interviews continued until data saturation. Each interview was audio-recorded and transcribed verbatim. Results: In the interviews, 15 patients with advanced cancer ranging in age from 43 to 65 years participated. The most common type of cancer in women was breast (71.4%) and prostate (50%) in men. The two main categories of "types of unmet information needs" and "reasons for not meeting information needs" were extracted from the analysis of patient interviews, with six and four subcategories, respectively. Conclusion: Cancer patients had a large number of unmet information needs. At the time of identifying the unmet information needs of cancer patients, the basic reasons for not meeting these needs should also be considered because cultural differences and social gaps in societies are inevitable.
... 17 Sexual trouble Sexual dysfunction is one of the most common causes of distress among patients with cancer. 20 It negatively affects the quality of life and, in some instances, is the most difficult aspect for patients with cancer. 21 Cancer patients and survivors may face sexual problems regardless of the cancer type or treatment. ...
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Over the past decade, cancer incidence has increased globally while its mortality has decreased. Accordingly, healthcare practitioners aim to provide comprehensive care to cancer patients. The biopsychosocial model suggests medical professionals' understanding of how psychosocial factors influence the entire course of cancer is critical. However, until now, an integrative review summarising the full scope of these psychosocial domains has been lacking. This review substantiates that cancer patients, survivors, their caregivers, and oncology professionals face substantial psychosocial challenges. Cancer patients and survivors may experience deterioration of self-concept, disturbance of body image, sexual problems and difficulties in social relationships while attempting to cope with casual issues. The burdens of care provision and the impact on the health of caregivers of cancer patients are also noteworthy. Improving the quality of patient–doctor communication and overcoming burnout are significant challenges for oncology healthcare professionals.
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Patients receiving palliative care (PC) can present with or develop a host of urological needs or complications. These needs can include attention to sexual health, urinary incontinence, genitourinary bleeding, and urinary tract obstruction by benign, malignant, or urinary stone diseases. These varied conditions require that PC clinicians understand invasive and noninvasive medical, surgical, and radiation options for treatment. This article, written by a team of urologists, geriatricians, and PC specialists, offers information and guidance to PC teams in an accessible "Top Ten Tips" format to increase comfort with and skills around assessment, evaluation, and specialist referral for urological conditions common in the PC setting.
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Sexual problems related to cancer are usually caused by physiological damage from treatment but are exacerbated by psychosocial issues such as poor individual coping, relationship conflict, or preexisting sexual dysfunction. Sexual dysfunction affects almost two‐thirds of the estimated 17 million cancer survivors in the United States, including well over 50% of those treated for pelvic or breast cancers and at least 25% for other sites. Optimal treatment is multidisciplinary, addressing both physical damage and behavioral skills. If a committed relationship exists, it is best to include the partner in education and intervention.
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Breast cancer is the most common cancer among women in the United States and growing in incidence worldwide, while mortality due to breast cancer is slowly decreasing. The last two decades have witnessed many changes in the diagnostic landscape both in terms of imaging studies and laboratory tests, most notably next‐generation sequencing both on tumor and blood. Our understanding of breast oncogenesis, tumor heterogeneity, and metastasis has deepened. Segmental mastectomy and sentinel lymph node (SLN) biopsy have been used in the majority of cases coupled with radiation therapy. In cases managed with mastectomy, radiation of one to three positive nodes has been utilized more often. Gene expression profiling has been used to identify women with hormone receptor‐positive (HR+) breast cancer who would benefit from adjuvant chemotherapy. Targeted therapy has been developed for HR+, HER2 amplified, and triple‐negative breast cancer. Immune checkpoint inhibitors have improved the management of triple‐negative disease. poly(adenosine diphosphate [ADP]–ribose) (PARP) inhibitors have improved outcomes for breast cancer patients with BRCA1/2 mutations. Combinations of targeted therapies and hormonal therapies have proved effective for adjuvant therapy and in recurrent disease.
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Purpose: To cure localized prostate cancer, the entire prostate must be eliminated, which is what all forms of treatment must achieve. Although there is no better way to cure localized disease than total surgical removal, the challenge is whether this can be accomplished with acceptable morbidity. Materials and methods: To evaluate quality of life following radical retropubic prostatectomy, patient reported outcomes of 62 men who underwent radical retropubic prostatectomy at this institution were recorded during the first 18 months of followup. By 18 months 93% of the patients were dry (wearing no pads) and 93% to 98% characterized urinary bothersomeness as none or small. Potency, defined as the ability to achieve unassisted intercourse with or without the use of sildenafil, improved gradually and by 18 months 86% of the patients were potent and 84% considered sexual bothersomeness as none or small. In an effort to improve the outcome of radical prostatectomy, the surgical procedures on these 62 patients were videotaped prospectively. The videotapes were reviewed 18 months after the study was initiated and 4 specific steps in the surgical procedure were correlated with patient reported outcomes. Surgeons who wish to improve their outcomes should consider using this technique to identify in their own hands other important arbitrary variations that may improve results. Results: The probability of maintaining an undetectable prostate specific antigen was evaluated in men with similar pathological stages of disease who were or were not potent following surgery. Men who were potent had the same outcome as those who were impotent, supporting the premise that preservation of sexual function does not compromise cancer control. Cancer control and quality of life following brachytherapy were analyzed and the following conclusions were made: 1) high dose intensification is necessary if radiation therapy is expected to cure prostate cancer but I doubt that any form of radiotherapy will produce durable cancer control for 20 to 30 years; 2) although brachytherapy is rarely adequate as monotherapy, I am not certain that brachytherapy combined with external beam radiotherapy is any better than 3-dimensional conformal therapy alone and the side effects are uncertain, and 3) I believe that a prostate specific antigen nadir of less than 0.2 ng./ml. is necessary to confirm an adequate response to radiation. Conclusions: I believe that there is no better way to cure organ confined cancer than total surgical removal. Today continence and potency rates should be high. If not, a review of intraoperative videotapes of successful and unsuccessful cases can improve results. In men treated with radiotherapy stringent criteria for treatment response and quality of life outcomes are needed.
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Learning Objectives After completing this course, the reader will be able to: Explain the side effects of hormonal ablation therapy for prostate cancer. Provide a list of potential non-hormonal therapies for treatment of vasomotor symptoms. Appreciate the impact of hormonal ablation therapy on bone mineral density. Access and take the CME test online and receive one hour of AMA PRA category 1 credit at CME.TheOncologist.com Andropause, or the age-related decline in serum testosterone, has become a popular topic in the medical literature over the past several years. Andropause includes a constellation of symptoms related to lack of androgens, including diminished libido, decreased generalized feeling of well-being, osteoporosis, and a host of other symptoms. The andropause syndrome is very prominent in men undergoing hormonal ablation therapy for prostate cancer. Most significant in this population are the side effects of hot flashes, anemia, gynecomastia, depression, cognitive decline, sarcopenia, a decreased overall quality of life, sexual dysfunction, and osteoporosis with subsequent bone fractures. The concept of andropause in prostate cancer patients is poorly represented in the literature. In this article, we review the current literature on the symptoms, signs, and possible therapies available to men who cannot take replacement testosterone.
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As a result of the introduction of effective cisplatin-based chemotherapeutic regimens into the clinical routine, even patients with metastatic testicular cancer at initial diagnosis can be cured of their disease. Sexual dysfunction and infertility are common long-lasting sequelae in testicular cancer survivors, affecting approximately 20% of patients after the application of the different treatment modalities currently available for the treatment of early and advanced clinical stages, including retroperitoneal surgery and systemic chemotherapy. Accordingly, it has been demonstrated that fertility distress and sexual disturbances, the latter occurring in only a minority of patients after surgical or chemotherapeutic treatment of testicular germ cell tumours, substantially alter the patients' quality of life. It is even worse because testicular cancer mostly affects men in the prime of their physical, sexual and reproductive function. Although semen quality is frequently poor at initial diagnosis and further deteriorates after orchiectomy, probably because of structural abnormalities in the remaining contralateral testicle, the advent of intracytoplasmatic sperm injection promises a fertile future to most patients, even if only a few sperms are present in the ejaculate. Further long-term investigations should be initiated to clarify the impact of the different treatment modalities on fertility and sexual life. The main objective should be the identification of patients who are at increased risk of developing therapy-related physical and psychological problems.
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To determine whether the treatment of patients with testicular cancer, using cisplatin combined with etoposide and bleomycin (BEP) after orchidectomy in those with disseminated disease, causes changes in sex hormones and penile vascularization, possibly related to sexual dysfunction. Ten patients treated with BEP were compared with 11 undergoing orchidectomy alone followed by surveillance. Sex hormone levels were analysed and cavernosal artery duplex ultrasonography performed before orchidectomy and at 6 and 12 months afterward. Patients were questioned about their sexual function. After 1 year, a visual erotic stimulation (VES) test was performed to assess penile rigidity. In contrast to the surveillance group, BEP-treated patients had higher follicle-stimulating hormone (4.6 vs 26.5 U/L) and luteinizing hormone (1.4 vs 8.2 U/L) levels, and lower testosterone levels (21.1 vs 14.7 nmol/L) at 6 months than at baseline. At 1 year, most patients had compensated hypergonadotrophic eugonadism, but Leydig cell function had recovered. Changes in cavernosal artery peak flow velocities induced by local injection with papaverine/phentolamine showed no difference between the groups before and 6 months after orchidectomy. Loss of libido and erectile dysfunction were reported more frequently by BEP-treated patients. However, 1 year after treatment, most reported a satisfying sex life and VES resulted in a rigid erection in nearly all patients. The reported erectile dysfunction could not be explained by changes in plasma testosterone levels or diminished blood flow velocities. After being diagnosed with testicular cancer, sexual morbidity is considerable, but within 1 year some improvement may be expected. BEP induces transient testicular dysfunction but this recovers. Although BEP is related to symptoms of angiopathy, cavernosal blood flow seems to be unaffected. These findings and the normal VES-evoked penile rigidity suggest that sexual dysfunction is more psychological than organically induced by BEP.
Article
BACKGROUND Studies that prospectively and simultaneously evaluate, within the first year of diagnosis, the impact of surgery and chemotherapy on quality of life (QOL) of younger women (60 years or younger) with early stage breast carcinoma are limited.METHODS Quality of life of 103 women who had surgery (lumpectomy, 49; mastectomy, 54) approximately 1 month before the start of the study was evaluated at baseline and again after 5 months. Thirty-two women received chemotherapy during the study.RESULTSOver time, subjects reported improvement in body image and physical, emotional, and functional well-being (P < 0.001). They were less bothered by swollen/tender arms and worried less about risk of cancer to family members (P < 0.001). However, satisfaction with sex life, social support, and social/family well-being declined (P < 0.001). In the period closer to surgery, women with mastectomy reported poorer body image (P = 0.001) and worse functional (P = 0.08) and physical well-being (P = 0.10). Women with lumpectomy worried more about the effects of stress on their illness (P < 0.01) and had lower emotional well-being (P = 0.06). By 6 months after surgery, the two groups reported similar QOL scores. Chemotherapy had a negative impact on women's sexual functioning (P = 0.01) and their physical well-being (P = 0.09). Women who received chemotherapy also reported more shortness of breath (P = 0.07). Post hoc analysis showed that women with breast reconstruction had higher emotional well-being at baseline than those with lumpectomy (P = 0.001) and mastectomy alone (P < 0.01).CONCLUSIONS Younger women with breast carcinoma could experience a range of adjustment problems at various points in the treatment cycle. Interventions that would help reduce the negative impact of treatment on QOL need to be designed and integrated into routine clinical practice. Cancer 2001;92:1288–98. © 2001 American Cancer Society.
Article
Voiding and sexual function after treatment are major determinants of quality of life in prostate carcinoma patients. Erectile dysfunction, incontinence, and urinary symptoms, both obstructive and irritative, have a significant negative impact on patient quality of life. This prospective study was undertaken to evaluate voiding, sexual function, and their impact on patients with localized prostate carcinoma who were treated with radical retropubic prostatectomy (RP) and to compare these patients with patients who were undergoing hormonobrachytherapy with external bean radiotherapy (HBTC) and patients who were undergoing hormonobrachytherapy without external beam radiotherapy (HBT).
Article
Introduction After radical prostatectomy (RPX) a majority of patients suffer from erectile dysfunction (ED). Most of them wish to be treated. The aim of this national study was to evaluate ED management after RPX (without any postoperative adjuvant therapy or tumor relapse) from the patient’s view compared to the urologist’s view. Material and methods In May 2003 we queried 1063 urologists and 801 patients following radical prostatectomy without adjuvant therapy. They were asked about preserved potency after RPX without erectile aid, existing wish for ED therapy, recommended or tested erectile aid (oral, transurethral, intracorporal, vacuum constriction device, penile implant) as well as the long-term use. Return rate: patients 80.1%, urologists 26.7%. Results According to the urologists’ view 9.1% of their affected patients were potent postoperatively without a device, but according to the polled patients only 4.7%. The wish to be treated for erectile dysfunction existed in the urologists’ opinion in 46.1% of their patients, while they considered that 44.8% had no wish for treatment. On the other hand, 59.3% of the patients would like to be treatedand only 28.5% did not want any kind of treatment. Regarding the long-term use of therapy for ED, the urologists thought that 26.1% of their patients did not receive therapy for the problem, and 69.7% of the patients stated they received no long-term therapy. Only 30.3% of the patients confirmed long-term therapy, while the urologists thought that 73.9% of the patients used an erectile aid. Definite therapy in the urologists’ opinion involved oral medication in 38.4%, MUSE® in 3.6%, Schwellkörperautoinjektionstherapie (SKAT) in 37.3%, erectile aid systems in 20.4%, and a prosthesis in 0.3%. Indeed 19.8% of the patients used oral medication, 1.7% MUSE®, 26.7% SKAT, 50.9% a vacuum constriction device, and 0.9% a penile implant. Considering the satisfaction of patients, urologists thought that 46.2% of the patients were satisfied with their treatment of ED, but only 28.9% of the patients were actually satisfied themselves. Conclusions The comparison of patients’ and urologists’ views shows a clearly different description of the ED situation after RPX. The proportion of patients with a wish for treatment and the proportion of dissatisfied patients are much higher from the patients’ view. This demonstrates an undertreatment of ED patients after RPX, which should also be taken into account under the current changes in the German health care system.
Article
Objectives: Health-related quality of life (HRQOL) is an increasingly important endpoint in prostate cancer care. However, pivotal issues that are not fully assessed in existing HRQOL instruments include irritative urinary symptoms, hormonal symptoms, and multi-item scores quantifying bother between urinary, sexual, bowel, and hormonal domains. We sought to develop a novel instrument to facilitate more comprehensive assessment of prostate cancer-related HRQOL. Methods: Instrument development was based on advice from an expert panel and prostate cancer patients, which led to expanding the 20-item University of California-Los Angeles Prostate Cancer Index (UCLA-PCI) to the 50-item Expanded Prostate Index Composite (EPIC). Summary and subscale scores were derived by content and factor analyses. Reliability and validity were assessed by test-retest correlation, Cronbach's alpha coefficient, interscale correlation, and EPIC correlation with other validated instruments. Results: Test-retest reliability and internal consistency were high for EPIC urinary, bowel, sexual, and hormonal domain summary scores (each r >/=0.80 and Cronbach's alpha >/=0.82) and for most domain-specific subscales. Correlations between function and bother subscales within domains were high (r >0.60). Correlations between different primary domains were consistently lower, indicating that these domains assess distinct HRQOL components. EPIC domains had weak to modest correlations with the Medical Outcomes Study 12-item Short-Form Health Survey (SF-12), indicating rationale for their concurrent use. Moderate agreement was observed between EPIC domains relevant to the Functional Assessment of Cancer Therapy Prostate module (FACT-P) and the American Urological Association Symptom Index (AUA-SI), providing criterion validity without excessive overlap. Conclusions: EPIC is a robust prostate cancer HRQOL instrument that complements prior instruments by measuring a broad spectrum of urinary, bowel, sexual, and hormonal symptoms, thereby providing a unique tool for comprehensive assessment of HRQOL issues important in contemporary prostate cancer management.