1. Marc A. Kowalkowski 1,2; Gilad E. Amiel 1; Seth P. Lerner 1; David M. Latini 1,2; Heather Honoré Goltz1,2
1. Baylor College of Medicine, Houston, TX, United States, 2. VA HSR&D Center of Excellence, Houston, TX, United States
Results
Conclusions
Background
Methods
 Bladder Cancer is the 5th leading cause of cancer mortalities in the
United States1.
 Greater than 70,000 new cases of bladder cancer are diagnosed in the
United States each year, with nonmuscle-invasive disease accounting
for 75% of diagnoses1.
 Individuals at risk of NMIBC1:
• The majority of those diagnosed with bladder cancer are older,
Caucasian males
• 90% of cases occur in individuals older than 55 years
• Males: Approximately 1 of every 26 American males will develop
bladder cancer
 There are currently more than 500,000 bladder cancer survivors1.
 NMIBC treatments include immunotherapy, chemotherapy, and surgery
 Surveillance for NMIBC is lengthy and invasive including:
• Quarterly cystoscopy and cytology for the first two years.
• Biannual examinations for the following two years
• Annual examinations after 5 years.
 NMIBC is efficiently controlled under the current treatment regimen.
However, it is currently not well understood how NMIBC’s rigorous
treatment and surveillance protocol affects sexual function and intimacy
in survivors.
Quantitative Study
 Study participants (N=117) recruited in two phases
1) Veterans from the MEDVAMC tumor registry and patients from
BCM Urology patient list
2) Individuals recruited via bladder cancer survivorship websites
 Individuals were contacted and screened
 Participants completed a 45-minute telephone survey consisting of
several validated measurement tools (e.g., BSI-18, EORTC QLQ-C30
and BLS24)
 Descriptive analyses were carried out using SAS v9.2.
 Using CART v6.4, a decision tree was created to generate groups of
similar individuals and explore relationships with sexual activity.
Qualitative Study
 Study participants (N=26) recruited from MEDVAMC tumor registry and
BCM Urology patient list
Figure 1. Results of CART analysis
displaying relationships between self-reported
NMIBC survivor characteristics and level of
sexual activity
Node 1
INTEREST: To what extent
were you interested in sex?
N = 85
Node 2
INTRUSIVE: How much does
your illness and/or treatment
interfere with your sex life?
N = 69
Node 4
INTRUSIVE: How much does
your illness and/or treatment
interfere with your sex life?
N = 46
Node 3
INTEREST: To what extent
were you interested in sex?
N = 23
Node 6
COMM: How much did you
talk to your partner about
concerns about sexual
function? N = 21
Node 5
AROUSAL DYSFUNCTION:
Male: Erectile difficulties
Female: Vaginal dryness
N = 25
Terminal Node 1
INTEREST = Not at all
N = 16
Terminal Node 2
INTRUSIVE = Not at all
INTEREST = A little
N = 12
Terminal Node 3
INTRUSIVE = Not at all
INTEREST ≥ Quite a bit
N = 11
Terminal Node 4
INTEREST ≥ A little
INTRUSIVE = Mild
AROUSAL ≥ Moderate
N = 6
Terminal Node 5
INTEREST ≥ A little
INTRUSIVE = Mild
AROUSAL = Mild
N = 19
Terminal Node 6
INTEREST ≥ A little
INTRUSIVE ≥Moderate
COMM = Poor
N = 8
Terminal Node 7
INTEREST ≥ A little
INTRUSIVE ≥Moderate
COMM = Strong
N = 13
During the past 4 weeks: To what
extent were you sexually active?
= Not At All
= A Little
= Quite A Bit/Very Much
INTEREST = Not at all
INTEREST = A little,
Quite a bit, Very Much
INTEREST = A little
INTEREST = Quite a bit,
Very Much
INTRUSIVE = Not at all
INTRUSIVE = Mild,
Moderate, Severe
INTRUSIVE = Mild INTRUSIVE = Moderate, Severe
COMM = StrongCOMM = Poor
AROUSAL
DYSFUNCTION = Mild
AROUSAL
DYSFUNCTION =
Moderate, Severe
VA
“It hasn’t affected our relationship at all. I
don’t have any problem having an
erection…I'm fifty-eight years old, I don’t go
out thinking about sex every day…,but I don’t
have no problem with thinking about sex
when I want to think about it or have any
other physical problem yet.”
VA
“I thought I better hurry up and do
something because I didn’t want to leave
everything a mess whenever I die, see…I use
a pump tool... and that’s even now, even
today it’s quite satisfying. I fussed at her
because before we were married, it was
every week. After we were married, it
slowed down, and I’d fuss at her about that.”
VA
“We had the heart-to-heart talk and made the
determination that we, it was going to affect
our marriage and it would affect certain parts of
our marriage… (I) had extreme difficulties with
erections and… You know things like that and it
just, so that began a slide in our, you know
sexual relationship.”
VA
“It has affected our marriage very
badly…sometime it’s almost a platonic
relationship. Neither one of us are
eighteen-year-old little buddies. We’re in
our sixties, sixty-nine, sixty-eight, you
know…which would slow down anyway, but
it shouldn’t stop, which it has done.”
VA
VA
VA We don’t have sex “Because of that stuff
they were putting in me… I still get an
erection (and masturbate)… And I don’t
tell her about that…but I do and when I
come. It doesn’t come out like it used
to. It, because of that irritation in there
or whatever they did.”
The most difficult part about having bladder cancer
is “Not being able to have, not being, not being able
to be intimate with my husband… I can't have
intercourse. And yeah, I realized that my husband is
still a young man, you know. You know, you know
he tries. He, you know he says it doesn’t bother him
and he’s accepted it, you know. It kinda bothers me
because, you know -pause- I just, I, it bothers me.”
VA
VA
VA
VA
VA
BCM
VA
VABCM
“We have learned to deal with it….she
still supports me (and) she’s still with
me. Even though we don’t have sex, stuff
like that, so.”
“…actually (my) sex life is terrible right now. I
don’t have a wife…we split up about the same
time I was diagnosed. Although female
companionship wasn’t at the top of my list with
those kind of problems going on… if I wanted to
(have sex) I would, but it just so happened that
it just really hasn’t been too high on my priority
list.”
Least
Affected
Most
Affected
= + Erectile Dysfunction
= - Erectile Dysfunction
= Female
Legend
 Individuals were sent opt-out
letters, contacted and
screened
 Participants completed a
semi-structured interview
consisting of:
• Diagnosis
• Treatment
• Monitoring
• Symptoms and
management
• Relationships and
sexuality
• Patient navigation
 Interview transcripts were
qualitatively analyzed.
Sexual dysfunction and level
of affectedness was reported
on a linear scale
Table 1. Demographic and Clinical Characteristics
Groups of NMIBC survivors reporting the least sexual activity were:
1) Survivors indicating any interest in sex, mild illness intrusiveness, and moderate to
severe arousal dysfunction
2) Survivors indicating any interest in sex, severe illness intrusiveness, and poor
communication with their spouse/partner regarding concerns about sexual function
Groups of NMIBC survivors reporting the most sexual activity were:
1) Survivors indicating little to no illness intrusiveness and at least quite a bit of
interest in sex
2) Survivors indicating any interest in sex, severe illness intrusiveness and strong
communication with their spouse/partner regarding concerns about sexual function
Quantitative Survey
Qualitative Survey
 In these two samples, co-morbid conditions, natural effects of aging, and
NMIBC treatment and monitoring impact sexual functioning and intimacy
in relationships.
 Physical, emotional, and psychological difficulties arise in conjunction
with NMIBC treatment and monitoring.
 Discussions of sexual side-effects and management strategies should be
incorporated into pre-treatment, patient – provider communication and
continue throughout treatment and monitoring.
 Clarification should be provided to couples regarding the risk of partner
contamination while or after receiving treatment with Bacillus Calmette-
Guérin (BCG) or other intravesical therapies.
 Sexual symptom management dialogue should be ongoing.
1) Viagra and other sexual performance enhancers are not “cures”
2) Patient preferences and differential response to drugs should be addressed
3) Female NMIBC survivors may have differing needs
Discussion
Sexual symptoms among survivors may result from either nonmuscle
invasive bladder cancer or comorbid conditions or both. However, these
results inform the scientific literature and practice by raising awareness
about the pervasiveness of these symptoms and their impact on NMIBC
survivors’ sexual/romantic relationships.
Further work is needed to design symptom management and educational
programs to dispel misinformation about contamination post-treatment and
improve quality of life by addressing sexual dysfunction in NMIBC survivors.
 Information and skill sessions (e.g. role playing activities) regarding how
to discuss unease or distress about sexuality following treatment should
be provided to couples.
 CART analysis supports the significance of strong communication.
Survivors indicating severe illness intrusiveness but also strong partner
communication about sexual function reported the highest level of
sexual activity
Physical dysfunction:
 50% of participants interviewed reported
physical symptoms of sexual dysfunction.
Relationship intimacy:
 More than 40% of participants reported negative
impacts on their primary relationships, including
perceived loss of intimacy and divorce.
Contamination Concerns:
 Over 30% of participants were not sexually
active for fear of contaminating their partner or
spreading NMIBC.
Figure 2. A scaled view of how sexual dysfunction affects nonmuscle invasive bladder
cancer survivors participating in a cross-sectional qualitative interview.
Limited sexual activity:
 38.8% reported no sexual activity
over the 4 weeks prior to the survey.
Physical dysfunction in
sexually active respondents:
 For Males – 60.0% experienced
difficulty gaining or maintaining an
erection
 For Males – 43.1% reported
problems with ejaculation
 For Females – 62.5% experienced
problems including vaginal dryness
Contamination Concerns:
 23.2% reported some degree of
concern over contaminating partner
with treatment agents
Partner Communication:
 Almost 50% of participants reported it
was very helpful to discuss concerns
about sexual function with their
partners
 Only 20% reported sharing all
concerns about sexual function with
their partners
1 American Cancer Society
BCM
BCMBCM BCM
BCM
BCM
BCM
BCM
Quantitative Survey Qualitative Survey
Age [Mean (SD)] 64.6 (9.50) 69.1 (9.40)
N % N %
Gender
Male 85 72.6 22 84.6
Female 32 27.4 4 13.4
Race/Ethnicity
White 110 94.0 21 80.8
Black or African American 2 1.7 4 15.4
Other 5 4.3 1 3.8
Marital Status
Married 87 74.4 19 73.2
Single, never married 3 2.6 3 11.5
Separated/Divorced 17 14.5 1 3.8
Widowed 10 8.5 3 11.5
Education
Less than High School 0 0.0 2 7.7
High School graduate 18 15.4 7 26.9
Some college 43 36.8 8 30.8
Bachelor's degree 32 27.4 8 30.8
Postgraduate degree 24 20.4 0 0.0
Unknown 0 0.0 1 3.8
Tumor Stage
Ta 37 31.6% 8 30.8
Tis 15 12.8% 2 7.8
T1 35 29.9% 5 19.2
Did not know/Unknown 30 25.6% 11 58.2