Bladder and Urothelial Cancer

European Eur Urol 2001;40:151–162 Accepted after revision: February 6, 2001

Urology

Distressful Symptoms after Radical Cystectomy

with Urinary Diversion for Urinary Bladder
Cancer: A Swedish Population-Based Study
Lars Henningsohn a, b, c, Hans Wijkström a, c, Paul W. Dickman b, d,
Karin Bergmark b, e, Gunnar Steineck b
a Department of Urology, Huddinge University Hospital; b Clinical Cancerepidemiology,
Department of Oncology – Pathology; c KARO Institution, Huddinge University Hospital;
d Department of Medical Epidemiology, and e Gynecological Oncology, Department of

Oncology, Radiumhemmet, Karolinska Institutet, Stockholm, Sweden

Key Words
Cystectomy · Urinary diversion · Bladder neoplasm · Quality of life

Abstract
Objective: To study the excess prevalence of distressful symptoms after radical surgery for uri-
nary bladder cancer.
Methods: We included all patients who underwent cystectomy due to bladder cancer before
1996 in Stockholm County. A control group was randomly selected from the general population.
Information was collected by means of an anonymous postal questionnaire.
Results: Completed questionnaires were returned by 310 (71%) controls and 251 (85%) cystec-
tomized individuals. A 5-fold (reservoir) and 9-fold (conduit) increase in defecation urgency and
a 4-fold (reservoir) and 6-fold (conduit) increase in faecal leakage were reported in individuals
operated on. Urinary tract infection was increased 3-fold in cystectomized individuals compared
with controls, during the previous year 26% of the patients reported a symptomatic infection.
The perception of a reduced physical attractiveness due to disease was more than 5-fold in-
creased in the men operated on compared to the controls. The majority, 135 out of 201 (67%), re-
ported that they would have refused alternative bladder-sparing procedures if they decreased
the prospects of survival by even as little as 1%.
Conclusions: The patient’s situation after cystectomy is considerably impaired due to changed
bowel and sexual function, urinary tract infections and a sense of decreased attractiveness.
However, most patients are in spite of this unwilling to compromise survival.
Copyright © 2001 S. Karger AG, Basel
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 2001 S.Karger AG, Basel Lars Henningsohn and Gunnar Steineck

Univ. of California San Diego

0302–2838/01/0402–0151 $17.50/0 Clinical Cancerepidemiology

Fax +41 61 306 12 34 PO Box 4402
E-Mail [email protected] Accessible online at: S–102 68 Stockholm (Sweden)
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 Introduction returned separately. Treatment-related information was obtained from
the patients in order to safeguard anonymity. After excluding 15 pa-
tients with recurrence, and 12 patients with orthotopic neobladders,
No one doubts that removal of a muscle-invading uri-
224 cystectomized men and women remained: 169 with a conduit and
nary bladder malignancy – a radical cystectomy – cures 55 with a reservoir. Reasons for not participating, exclusion criteria
many patients of a life-threatening disease. However, and population characteristics are listed in table 1.
surgery also implies altered urinary, bowel and sexual func- The questionnaire, which had been developed on the basis of suc-
tion [1, 2]. The magnitude of the excess symptom occur- cessive in-depth interviews with patients and clinicians, was similar
to our questionnaire on male [12] and female [13] sexual function and
rence after cystectomy is not known – no comparison with
contained 137 questions for the cystectomy subjects and 125 ques-
untreated patients has been made. Furthermore, no one has tions for the controls. It was designed to evaluate symptoms of urinary
documented the amount of distress from specific symptoms dysfunction (e.g., urinary tract infections, leakage and odour), bowel
or the extent to which patients are willing to trade off sur- dysfunction (e.g., abdominal pain, diarrhoea and faecal leakage) and
vival for a reduced symptom burden. sexual dysfunction (e.g., reduced sexual interest and orgasmic plea-
sure, vaginal changes in women and erectile dysfunction in men). The
In 1950, Eugene Bricker [3] described a major innova-
prevalence of erectile dysfunction was assessed using the method de-
tion in urinary diversion constructing an ileal conduit and scribed by Helgason et al. [14].
about two decades later, Nils G. Kock [4] and Donald G. Some characteristics of each symptom (quality, occurrence, inten-
Skinner [5] popularized the concept of continent cutaneous sity or duration) and, separately, the amount of distress it caused were
urinary diversion. Another decade later, reconstruction of assessed. The occurrence of symptoms was measured in the individu-
al either with a ‘verbal’ incidence or prevalence scale. Symptom in-
the lower urinary tract with orthotopic intestinal neoblad- tensity was typically assessed on a ‘verbal’ 4-category scale (none/lit-
ders connected to the urethra had become established clini- tle/moderate/much) [15] and symptom duration by the specified time.
cal practice [6]. An alternative strategy is to give radiother- The corresponding distress was measured on a ‘verbal’ 4-category
apy (and/or cytostatics) initially and reserve cystectomy for scale. To exemplify the question ‘Have you experienced, during the
patients without complete tumour remission [7–11]. past 6 months, difficulties in suppressing the urge to defecate before
reaching the toilet (defecation urgency)?’ could be answered in the
Little effort has been made to study the distress of dis- following six ways: ‘Never/almost never’, ‘Less than on one of five
turbed bowel and sexual function. A detailed study of the occasions’, ‘Less than on half of all occasions’, ‘On about half of all
excess symptom occurrence (and the corresponding dis- occasions’, ‘More than on half of all occasions’, and ‘Always/almost
tress) after the operation may provide clues as to how the always’. The corresponding distress was assessed on a ‘verbal’ scale
situation of today’s patients can be improved. Knowledge of of intensity by the question ‘If you have experienced disordered bow-
el function during the past 6 months and this were to persist for the
the patients’ priorities with regard to optimal survival possi- rest of your life, how would you feel about it?’ The possible answers
bilities and avoiding symptoms may guide the choice of were ‘Not relevant’, ‘It does not distress me at all’, ‘It distresses me
means for bettering the postoperative situation. Here we re- a little’, ‘It distresses me moderately’, and ‘It distresses me a lot’. To
port data on patients treated with cystectomy and urostomy determine whether a treatment influenced symptom distress, we ex-
(conduit or reservoir) and population controls. amined the proportion of individuals with moderate or much symp-
tom distress, excluding those not having the symptom. Some psycho-
logical symptoms and global measures were reported on a 7-category
visual digital scale covering, for example, Lowest possible well-being
Patients and Methods and Best possible well-being.
In a trade-off question, the cystectomized subjects and controls
All patients with locally aggressive bladder cancer who underwent were asked to consider hypothetically the option of risking a poorer
cystectomy in Stockholm County between January 1969 and Decem- prognosis if it had been possible for them to choose to exclude radical
ber 1995 were identified. Between September 1996 and April 1998, organ-removing surgery and choose instead an alternative bladder-
patients between the ages of 40 and 85 who were alive in September sparing procedure. The symptoms were said to occur or not occur
1996 (n = 294) were sent a letter explaining the objectives of the study while the risk of a shortened survival was directly specified on a ver-
and an invitation to participate. A control group of 434 men and wom- tical line (0, 1, 5, 10, 20, 30…90 and 100%).
en without urinary bladder cancer, randomly selected from the Questions concerning potential confounding and effect-modifying
Swedish Population Register and frequency matched by sex, age and variables were identical to those we have used previously [12, 16]. We
region of residence, also received an invitation. Those who did not re- assessed, for example, level of education, occupation, employment
turn the enclosed response form within 2 weeks were telephoned. status, smoking habits, and concurrent diseases and their treatment.
Thirty-one of the cystectomized men and women and 26 from the
originally retrieved control group were excluded because of erro- Surgical Technique and Preoperative Irradiation
neous register data (table 1). The study was approved by the Region- The surgery performed is a modification of that described by Skin-
al Ethics Committee of the Karolinska Institute. ner [17]. It includes a bilateral lymphadenectomy in addition to exci-
A total of 251 (85%) cystectomized individuals and 310 (71%) sion of the urinary bladder, prostate and perivesical fat. Urethra was
controls agreed to take part in the study. A questionnaire was sent by routinely removed during this period. In women, an anterior pelvic
mail to be answered anonymously along with a registration form to be excenteration with a wide excision of the bladder in continuity with
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 Table 1. Characteristics of the men and women treated with cystectomy due to urinary bladder cancer and the con-
trols a

Characteristic Controls Patients treated

with cystectomy

Total identified in registers 460 325

Dead at follow up, n (%) 16 (3) 13 (4)
Erroneous age/diagnosis – 13 (4)
Language problems 2 (0.4) 0
Emigrated 4 (0.9) 4 (1)
Other, nonexistence in recent registers 4 (0.9) 1 (0.3)
Number of invitations to participate 434 (100) 294 (100)
Reasons for nonparticipation
Intercurrent disorder 27 (6) 14 (5)
Contact not established 2 (0.5) 5 (2)
Lost questionnaire 0 1 (0.3)
Refusal 70 (16) 16 (5)
Unknown 17 (4) 2 (0.7)
Diseased during follow-up 1 (0.2) 0
Questionnaire discrepancy 7 (2) 6 (2)
Total completing the questionnaire, n (%) 310 (71) 251 (85)
Exclusion criteria
Recurrence at follow-up – 15
Orthotopic bladder substitution – 12

Characteristic Controls Patients with Patients with

continent urostomy noncontinent urostomy

Total number in each group 310 55 169

Age, mean
At follow-up, years Women 73.3B0.9 63.6B2.3 75.3B1.3
Men 73.0B0.6 66.3B1.3 71.6B0.7
At operation, years Women – 57.1B2.2 64.7B1.6
Men – 60.1B1.4 61.2B0.8
Gender – proportion (%)
Women 99/308 (32) 17/55 (31) 41/168 (24)
Men 209/308 (68) 38/55 (69) 127/168 (76)
Material status – proportion (%)
Married or living with a partner 204/306 (67) 37/52 (71) 106/164 (65)
Has a partner but lives alone 18/306 (6) 3/52 (6) 14/164 (9)
Single 23/306 (8) 8/52 (15) 20/164 (12)
Widow/widower 61/306 (20) 4/52 (8) 24/164 (15)
Employement status – proportion (%)
Working 35/304 (12) 13/47 (28) 12/152 (8)
On sick leave 6/304 (2) 4/47 (9) 9/152 (6)
Unemployed 3/304 (1) 2/47 (4) 1/152 (1)
Retired 259/304 (85) 27/47 (57) 130/152 (86)
Level of education – proportion (%)
Primary school 145/302 (48) 20/53 (38) 78/158 (49)
Secondary school 92/302 (31) 20/53 (38) 52/158 (33)
University 65/302 (22) 13/53 (25) 26/158 (17)
Unknown 2/158 (1)
Born in Sweden – proportion (%) 283/305 (93) 43/53 (81) 148/162 (91)
Preoperative irradiation – 22/54 (41) 111/165 (67)
Preoperative chemotherapy – 20/53 (38) 59/160 (37)
Reoperation with changed urinary diversion – 6/55 (11) 3/165 (2)
Daily smoker, 1 year or more – proportion (%)
Never smoked 143/310 (46) 9/55 (16) 41/169 (24)
Former smoker 111/310 (36) 25/55 (45) 62/169 (36)
Current smoker 48/310 (15) 19/55 (35) 49/169 (29)
Time to complete questionnaire, h 1.2 1.4 1.5

a Plus-minus values are means B SEM. Percentages may not add up to 100 because of rounding.
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the uterus, fallopian tubes, ovaries, and the anterior wall of the vagina the prevalence of urine odour were reported. Thirteen (8%)
is usually recommended but, in this series, the vagina and internal out of 167 patients with conduit reported urinary leakage
genitals were left intact. The majority of the patients receiving a con-
(all magnitudes) at least once a month compared to 10
duit were operated with the Bricker technique, using approximately
10 cm of the small intestine 30 cm from the ileocecal valve [3]. A few (18%) out of 55 with reservoir.
patients from one hospital received a colon conduit utilizing 15–20 Overall, 94 (32%) of the 298 controls reported urinary
cm of the sigmoid colon [18]. The surgical technique described by symptoms. The corresponding figures were for persons with
Kock et al. [4] was used for all continent urinary reservoirs. About a conduit 85 (55%) out of 155 and for those with a reservoir
60–70 cm of the small intestine 50 cm proximal to the ileocecal valve
32 (60%) out of 52 (not in table). There was a 2-fold in-
is needed for the construction of an ileal reservoir with this technique.
Preoperative irradiation was given to almost all patients in the crease in urinary symptom distress in the cystectomized
years 1969–1988 (40 Gy in 4 weeks 1969–1978, and 20 Gy in 5 days men and women. Adjusting for preoperative irradiation did
1979–1988). The field was restricted to the urinary bladder; no effort not alter the results (data not shown).
was made to include lymph nodes in the target. Totally, 67% of the pa-
tients with a conduit and 41% of the patients with a reservoir received
Sexual Function in Women (table 4)
preoperative irradiation.
Low sexual satisfaction was reported by 15 (25%) out of
Statistical Analysis 59 female controls compared to 5 (45%) out of 11 women
On the population level, we calculated the percentage of subjects with a reservoir and 4 (21%) out of 19 women with a con-
with a certain incidence, prevalence, intensity, duration, or distress of duit. Sexual interest was generally lower in women than in
a symptom. To compare groups, we estimated relative risks: the per-
centage of, for example, subjects operated on reporting the outcome
men and few women in this series were sexually active dur-
divided by the percentage of controls reporting the same outcome. ing the study period. The perceived reduction in physical at-
Sex- and age-adjusted relative risks, as well as the associated 95% tractiveness due to disease (patients and controls) or the
confidence intervals, were calculated by the Mantel-Haenszel method urostomy (patients) was increased more than 10-fold among
[19, 20]. the cystectomized women compared to the control women.
Distress due to low physical attractiveness was increased
4-fold in the women operated on compared to the controls
Results (table 3).
Urogenital mucosal problems were reported by 3 (18%)
Bowel Function (table 2) out of 16 women with a reservoir and by 3 (10%) out of
Urgency in connection with at least half of the perceived 29 with a conduit and 1 (1%) out of 73 female controls.
defecational impulses was increased 5-fold in patients with Preoperative irradiation did not alter these results (data not
a reservoir and 9-fold in patients with a conduit compared to shown).
controls. Furthermore, a 4-fold (reservoir) and 6-fold (con-
duit) increase in faecal leakage and a 2-fold increase in ab- Sexual Function in Men (table 5)
dominal pain were observed. Low satisfaction with their present sexuality/sexual life
Altogether, bowel symptoms were reported by 85 (28%) was twice as high in cystectomized men as in male controls.
of the 304 control men and women, 31 (58%) of the 53 pa- All men operated on lost the ability to ejaculate and the rel-
tients with a reservoir, and 83 (52%) of the 160 patients with ative risk for erectile dysfunction was twice as high as in
a conduit (not in table). There was a 3-fold increase in bow- controls. A larger percentage of men with a conduit felt no
el symptom distress among cystectomized patients com- or only low interest in sexuality/sexual life compared to
pared to the controls. 20% of the preoperatively irradiated controls, RR = 1.3. The perceived reduction in physical at-
patients were moderately or very much distressed by bowel tractiveness due to disease (patients and controls) or the
symptoms compared to 22% of the nonirradiated patients urostomy (patients) was increased 5-fold (conduit) and 6-
(not in table). The assessed bowel symptoms were altered fold (reservoir) in the men operated on compared to controls
only to a small degree (if at all) by radiotherapy, and adjust- (table 3).
ing for preoperative irradiation did not alter the results
(data not shown). Lymphoedema (not in table)
Surgery did not cause an increase in the prevalence of
Urinary Function (table 3) lymphoedema. ‘Swollen legs or lower abdomen’ at least ev-
Surgery caused a 6-fold (conduit) and 7-fold (reservoir) ery month was reported by 35 (12%) out of 303 controls,
increase in the incidence of urinary tract infections with and respective figures for patients with conduit and reser-
fever. A 7-fold (conduit) and 4-fold (reservoir) increase in voir were 22 out of 161 (14%) and 4 out of 55 (7%). Com-
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Table 2. Bowel symptoms during previous 6 months, occurrence and distress, age and sex-adjusted relative risks

Variable Controls Patients with reservoir Patients with conduit

(n = 310) (n = 55) (n = 168)

Abdominal pain at least once per month, n/total n (%) 23/306 (8) 7/54 (13) 21/163 (13)
Relative risk for patients vs. controls 1.0 2.6 (1.0–6.7) 1.9 (1.1–3.4)
Relative risk for conduit vs. reservoir a 1.0 1.4 (0.6–3.7)
Frequent defecation more than 14 times/week, n/total n (%) 10/300 (3) 4/55 (7) 21/160 (13)
Relative risk for patients vs. controls 1.0 1.9 (0.6–5.5) 3.6 (1.9–6.8)
Relative risk for conduit vs. reservoir a 1.0 1.6 (0.6–4.0)
Diarrhoea/loose stools at least once a month, n/total n (%) 35/309 (11) 11/54 (20) 54/162 (33)
Relative risk for patients vs. controls 1.0 1.7 (0.9–3.4) 3.0 (2.1–4.3)
Relative risk for conduit vs. reservoir a 1.0 2.0 (1.1–3.7)
Constipation at least once a month, n/total n (%) 35/307 (11) 11/54 (20) 15/163 (9)
Relative risk for patients vs. controls 1.0 2.0 (1.0–4.0) 0.9 (0.5–1.6)
Relative risk for conduit vs. reservoir a 1.0 0.4 (0.2–1.0)
Defecation urgency every other time or more, n/total n (%) 6/305 (2) 3/53 (6) 29/161 (18)
Relative risk for patients vs. controls 1.0 5.2 (1.2–23.2) 9.5 (4.8–18.8)
Relative risk for conduit vs. reservoir a 1.0 4.5 (1.3–15.3)
Faecal leakage at least once a month, n/total n (%) 5/304 (2) 4/53 (8) 15/163 (9)
Relative risk for patients vs. controls 1.0 4.2 (1.3–14.1) 6.2 (2.4–16.0)
Relative risk for conduit vs. reservoir a 1.0 1.4 (0.4–5.4)
Blood or phlegm in stool at least once a month, n/total n (%) 5/306 (2) 1/54 (2) 7/163 (4)
Relative risk for patients vs. controls 1.0 0.7 (0.1–6.2) 2.5 (0.8–7.5)
Relative risk for conduit vs. reservoir a 1.0 3.3 (0.5–21.9)

Symptom distress in whole group

Moderate or substantial distress if current problems from
gastrointestinal tract persist, n/total n (%) 25/304 (8) 11/53 (21) 38/160 (24)
Relative risk for patients vs. controls 1.0 3.8 (1.8–7.9) 3.1 (2.4–4.9)
Relative risk for conduit vs. reservoir a 1.0 1.7 (0.8–3.5)

a Restricted to patients with maximum age of 76.

pared to controls, the age-adjusted relative risks with 95% respectively, felt hindered from accepting invitations to so-
confidence intervals were 1.3 (0.8–2.1) for those with a cial functions (not in table).
conduit and 0.8 (0.3–2.1) for those with a reservoir. The rel-
ative risk of experiencing heaviness in the legs or lower ab- Trade-Off (fig. 1)
domen at least monthly was 1.6 (1.0–2.6) and 1.2 (0.5–3.1), 68% (135/201) of the cystectomized individuals were
respectively. Preoperative irradiation did not significantly unwilling to take any risk of shorter survival as a trade-off
alter the results (not in table). for alternative bladder sparing procedures with a reduced
symptom burden. The cystectomized men were more will-
Well-Being (table 6) and Social Life ing to trade off (53/150; 35%) than the women (13/50;
The prevalence of poor psychological and physical well- 26%), and patients with a conduit were less willing to trade
being, fatigue (low energy level) and high-level depression off (44/150; 29%) than those with a reservoir (22/50; 44%).
was somewhat increased in the cystectomized subjects. Twenty-three of the 200 patients (12%) would retain their
Surgery did not affect travel frequency: 202 (97%) out of urinary bladder even if the risk for reduced survival was
209 controls, 113 (94%) out of 120 patients with a conduit 100%. Age, social and marital status, country of birth, anx-
and 48 (98%) out of 49 patients with a reservoir had taken iety and depression did not significantly influenced the
one or more trips away from their hometown the previous trade-off judgement. There was a tendency for higher risk-
year. However, 8 patients (5%) with a conduit versus none taking in patients not belonging to the Swedish state church
with a reservoir felt hindered by the urinary diversion (mod- (RR = 2.2, confidence interval = 1.3–3.6) (not in table).
erately or much) from shopping and 12 (7%) versus 1 (2%),
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 vs. 58% respectively, but only in patients operated with
clam enterocystoplasty for detrusor instability. Our restric-
tion to cancer patients could explain the differences.
We found that the surgical alterations of the urinary tract
results in an excess occurrence of symptomatic urinary tract
infections. The diagnostic search for bacteria in the urine is
probably more intense in cystectomized patients than in
controls, which would introduce an error in the comparison.
Presumably, this source of error does explain only to a
small extent, if at all, the observed differences in symp-
tomatic infections. About 75% of patients with a conduit
have infected urine [22]. When it occurred, the urinary tract
Fig. 1. Trade off: the proportion of subjects in each group willing to
infection was not reported to cause more distress among the
avoid radical organ-removing surgery to different risks of shortened subjects operated on than among controls.
survival. The odour of urine is an issue after cystectomy. Approxi-
mately one tenth of the surgery patients reported the smell of
urine (at least every month), and it was classified as distres-
Discussion sing (moderate or very much) by about 40% (not in table).
Since the prostate is routinely extirpated in a radical cys-
Cystectomy with urinary diversion causes an excess tectomy, it is no surprise that men lost their ability to ejacu-
prevalence of symptom distress arising from dysfunctional late and that all but 12 (92%) of them reported erectile dys-
defecation (diarrhoea, defecation urgency and faecal leak- function. In addition, all men operated before 1989 had a
age), compromised sexual function, and problems related to ureterectomy as a standard procedure and nerve-sparing
the urinary diversion (urinary tract infections, odour). How- surgery was never attempted during the study period. We
ever, despite the symptom distress among the cystec- found both here and in previous studies on men with
tomized patients (and a lower average rating of psychologi- prostate cancer [12] that approximately half of them in the
cal and physical well-being), 67% were unwilling to trade studied age group (50–80 years) are distressed by their erec-
off survival to diminish the symptom burden. Only 11% of tile dysfunction.
the patients said they would have chosen treatment options In the present series, the vagina was left intact during
with less symptom distress if they had known that survival surgery, which may explain why only 3 (6%) of the 48
would be shortened. women operated on reported moderate or much distress
In the light of the substantial influence of radical cystec- from vaginal changes (reduced elasticity and length), which
tomy on bowel function demonstrated in our study, it is sur- is similar to the figures among controls (4/80, 5%) and
prising that defecation has been assessed in only one previ- clearly below what we found in women treated for cervical
ously published series of patients [2]. We found an excess cancer, 62 out of 243 (26%) [13]. However, the small num-
prevalence of nearly every gastrointestinal symptom cov- bers limit the value of our data concerning sexual function
ered, and one quarter of the persons operated on reported in these women. Our data do not support the hypothesis that
moderate or much symptom distress from disordered bowel a radical cystectomy influences vaginal lubrication during
function in the summarizing question. Defecation urgency intercourse, in contrast to our finding in a previous study
is probably caused by nerve dysfunction, either by direct that radical hysterectomy increases the prevalence of this
surgical damage to nerves, altered metabolism (e.g., due to symptom 3-fold [13].
malabsorption of electrolytes and vitamins) [21], or occurs One fifth (10/49) of the women operated on had had in-
secondarily to surrounding tissue fibrosis. Deficient physi- tercourse during the previous 6 months, a figure slightly be-
ological function of the pelvic floor muscles (or of sphinc- low that among the controls (22/82; 27%). Few women re-
ter muscles) caused by direct injury to the muscles or nerves ported that their urinary diversion affected their sexual life.
results in faecal leakage. In our study, bowel function was The majority, 75% of the controls and 76% of the cystec-
not altered by the preoperative external radiation. Possible tomized women, had no or minimal interest in sex. This
reasons include the low total dose and the limited relative low-level interest results in reduced sexual activity.
dose given to the bowel. In a report by N’Dow et al. [2] they We detected no alteration in the prevalence of lym-
found a similar risk for bowel symptoms as in our study, 54 phoedema after cystectomy. We have previously found that
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Table 3. Urinary symptoms during previous 12 months, occurrence and distress, age and sex-adjusted relative risks

Variable Controls Patients with reservoir Patients with conduit

(n = 310) (n = 55) (n = 168)

One or more urinary tract infections (UTIs), n/total n (%) 28/299 (9) 14/52 (27) 41/157 (26)
Relative risk for patients vs. controls 1.0 3.7 (1.9–7.5) 3.0 (2.0–4.6)
Relative risk for conduit vs. reservoir a 1.0 0.9 (0.4–1.7)
UTI with fever, one or more, n/total n (%) 9/256 (4) 12/52 (23) 27/150 (18)
Relative risk for patients vs. controls 1.0 7.1 (2.9–17.6) 5.9 (3.0–11.5)
Relative risk for conduit vs. reservoir a 1.0 0.7 (0.3–1.5)
UTI with pain, one or more, n/total n (%) 15/251 (6) 4/52 (8) 19/147 (13)
Relative risk for patients vs. controls 1.0 1.3 (0.4–4.2) 2.4 (1.3–4.7)
Relative risk for conduit vs. reservoir a 1.0 1.5 (0.4–4.9)
UTI with other symptoms, one or more, n/total n (%) 11/252 (4) 8/51 (16) 21/147 (14)
Relative risk for patients vs. controls 1.0 4.4 (1.6–12.6) 3.5 (1.9–6.7)
Relative risk for conduit vs. reservoir a 1.0 0.8 (0.3–2.0)
Urinary leakage at least once a month, n/total n (%) 31/308 (10) 10/55 (18) 13/167 (8)
Relative risk for patients vs. controls 1.0 2.0 (0.9–4.5) 0.8 (0.4–1.5)
Relative risk for conduit vs. reservoir a 1.0 0.3 (0.1–0.8)
Urinary leakage, moderate or large, n/total n (%) b 18/93 (19) 6/31 (19) 25/72 (34)
Relative risk for patients vs. controls 1.0 1.3 (0.4–3.8) 2.3 (1.3–3.9)
Relative risk for conduit vs. reservoir a 1.0 2.2 (0.9–5.2)
Odour of urine at least once a month, n/total n (%) 6/308 (2) 4/52 (8) 19/161 (12)
Relative risk for patients vs. controls 1.0 4.3 (1.0–18.5) 6.7 (3.1–14.8)
Relative risk for conduit vs. reservoir a 1.0 1.7 (0.6–5.0)

Symptom distress in whole group

Moderate or substantial distress if current problems
involving urinary tract persist, n/total n (%) 36/298 (12) 12/53 (23) 29/155 (19)
Relative risk for patients vs. controls 1.0 2.0 (1.0–3.9) 1.5 (1.0–2.4)
Relative risk for conduit vs. reservoir a 1.0 1.0 (0.5–2.0)
Men
Moderate or substantial feeling of decreased attractiveness as
a consequence of disease or the operation, n/total n (%) 1/77 (1) 2/16 (13) 6/32 (19)
Relative risk for patients vs. controls 1.0 11.2 (0.6–218) 13.0 (2.8–59.5)
Relative risk for conduit vs. reservoir a 1.0 2.6 (0.5–14.9)
Moderate or substantial distress if feeling of decreased
attractiveness persist, n/total n (%) 4/77 (5) 3/16 (19) 7/32 (22)
Relative risk for patients vs. controls 1.0 3.6 (0.9–14.6) 3.9 (1.3–11.4)
Relative risk for conduit vs. reservoir a 1.0 2.4 (0.6–9.4)
Women
Moderate or substantial feeling of decreased attractiveness as
a consequence of disease or the operation, n/total n (%) 12/195 (6) 18/35 (51) 32/110 (29)
Relative risk for patients vs. controls 1.0 6.4 (3.5–12.0) 4.5 (2.6–7.7)
Relative risk for conduit vs. reservoir a 1.0 0.6 (0.4–1.0)
Moderate or substantial distress if feeling of decreased
attractiveness persist, n/total n (%) 17/194 (9) 3/35 (51) 28/111 (25)
Relative risk for patients vs. controls 1.0 5.4 (3.0–10.0) 2.9 (1.7–4.9)
Relative risk for conduit vs. reservoir a 1.0 0.5 (0.3–0.8)

a The analysis was restricted to patients with a maximum age of 76.

b The analysis was restricted to patients with the symptom.
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Table 4. Sexually related symptoms among women during previous 6 months, occurrence and symptom distress age-adjusted relative risks

Variable Controls Patients with reservoir Patients with conduit

(n = 100) (n = 17) (n = 39)

Sexual activity/sexuality
Sexual desire less than once a month, n/total n (%) 66/80 (83) 11/15 (73) 30/34 (88)
Relative risk for patients vs. controls 1.0 1.1 (0.9–1.7) 1.2 (0.9–1.3)
Relative risk for conduit vs. reservoir a 1.0 1.0 (0.6–1.4)
No intercourse, n/total n (%) 60/82 (73) 10/16 (63) 29/33 (88)
Relative risk for patients vs. controls 1.0 1.4 (0.9–2.2) 1.2 (1.0–1.4)
Relative risk for conduit vs. reservoir a 1.0 1.1 (0.7–1.7)
No orgasm, n/total n (%) 55/81 (68) 9/15 (60) 28/32 (88)
Relative risk for patients vs. controls 1.0 1.6 (1.0–2.6) 1.2 (1.0–1.5)
Relative risk for conduit vs. reservoir a 1.0 1.1 (0.7–1.8)
Little or no orgasmic pleasure, n/total n (%) b 5/24 (20) 1/6 (17) 0/4 (0)
Relative risk for patients vs. controls 1.0 0.6 (0.1–4.2) –
Relative risk for conduit vs. reservoir a 1.0 –
Vaginal changes
Insufficient vaginal lubrication at least every other time, n/total n (%) b 10/28 (36) 2/8 (25) 3/7 (43)
Relative risk for patients vs. controls 1.0 1.0 (0.2–4.0) 1.1 (0.4–3.0)
Relative risk for conduit vs. reservoir a 1.0 1.6 (0.3–8.0)
Vaginal lubrication moderately or substantially insufficient, n/total n (%) 2 7/23 (30) 0/6 (0) 2/5 (40)
Relative risk for patients vs. controls 1.0 – 1.3 (0.3–5.0)
Relative risk for conduit vs. reservoir a 1.0 –
Moderate or substantial reduction in perceived length
of vagina during intercourse, n/total n (%) b 3/22 (14) 1/5 (20) 1/5 (20)
Relative risk for patients vs. controls 1.0 1.6 (0.2–15.3) 2.0 (0.2–18.5)
Relative risk for conduit vs. reservoir a 1.0 1.3 (0.1–16.6)
Moderate or substantial reduction in perceived elasticity
of vagina during intercourse, n/total n (%) b 2/25 (8) 0/5 (0) 3/6 (50)
Relative risk for patients vs. controls 1.0 – 5.4 (1.3–21.7)
Relative risk for conduit vs. reservoir a 1.0 –
Problems during intercourse
Moderate or substantial superficial dyspareunia in previous
6 month, n/total n (%) b 2/24 (8) 0/6 (0) 2/6 (33)
Relative risk for patients vs. controls 1.0 – 3.5 (0.7–18.0)
Relative risk for conduit vs. reservoir a 1.0 –
Moderate or substantial deep dyspareunia in previous
6 month, n/total n (%) b 1/23 (4) 0/6 (0) 1/5 (20)
Relative risk for patients vs. controls 1.0 – 4.6 (0.3–61.8)
Relative risk for conduit vs. reservoir a 1.0 –
Other
Moderate or substantial mucosal problems other than in sexual
situations, n/total n (%) 1/76 (1) 3/16 (18) 3/29 (10)
Relative risk for patients vs. controls 1.0 14.3 (1.6–128) 7.9 (0.9–72.6)
Relative risk for conduit vs. reservoir a 1.0 0.6 (0.1–2.4)
Moderate or substantial distress if mucosal problems persists,
n/total n (%) c 3/17 (18) 1/6 (17) 5/6 (83)
Relative risk for patients vs. controls 1.0 0.9 (0.1–7.4) 5.9 (1.8–19.4)
Relative risk for conduit vs. reservoir a 1.0 4.8 (0.8–30.3)

a The analysis was restricted to patients with maximum age of 76.

b The analysis was restricted to sexually active women.
c The analysis was restricted to women with the symptom.
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Table 4. (continued)

Variable Controls Patients with reservoir Patients with conduit

(n = 100) (n = 17) (n = 39)

Symptom distress in whole group

Little or no satisfaction with present sexuality/sexual life, n/total n (%) 15/59 (25) 5/11 (45) 4/19 (21)
Relative risk for patients vs. controls 1.0 2.4 (1.0–6.2) 0.8 (0.3–2.1)
Relative risk for conduit vs. reservoir a 1.0 0.4 (0.1–1.5)
No or low interest in sex, n/total n (%) 61/81 (75) 9/16 (56) 29/34 (85)
Relative risk for patients vs. controls 1.0 1.1 (0.7–1.7) 1.1 (0.9–1.3)
Relative risk for conduit vs. reservoir a 1.0 1.0 (0.6–1.7)
Moderate or substantial effect on sex life of urinary/urostomy
symptoms, n/total n (%) 1/95 (1) 3/16 (19) 1/40 (3)
Relative risk for patients vs. controls 1.0 21.7 (1.4–329) 2.3 (0.2–33.0)
Relative risk for conduit vs. reservoir a 1.0 0.2 (0.01–4.7)
Moderate or substantial effect on sex life of bowel problems, n/total n (%) 0/95 (0) 1/16 (6) 0/38 (0)
Relative risk for patients vs. controls 1.0 – –
Relative risk for conduit vs. reservoir a 1.0 –
Moderate or substantial distress if experienced sexual limitations
persists, n/total n (%) 8/81 (10) 2/16 (13) 1/32 (3)
Relative risk for patients vs. controls 1.0 1.3 (0.3–5.4) 0.3 (0.1–2.2)
Relative risk for conduit vs. reservoir a 1.0 0.9 (0.1–8.2)
Moderate or substantial distress if current vaginal changes
during sexual activity persists, n/total n (%) 1/81 (1) 0/16 (0) 3/32 (9)
Relative risk for patients vs. controls 1.0 – 7.2 (1.2–42.2)
Relative risk for conduit vs. reservoir a 1.0 –

a The analysis was restricted to patients with maximum age of 76.

b The analysis was restricted to sexually active women.
c The analysis was restricted to women with the symptom.

the occurrence increases 8-fold after a radical hysterectomy There is no valid comparison between an organ-preserv-
with pelvic lymphadenectomy [unpubl. data]. It is likely ing strategy, usually restricted to T2 or T3a disease, and pri-
that variations in the surgical techniques could explain the mary radical cystectomy with regard to survival. Multi-
difference [23]. modality bladder-sparing treatment has, however, in similar
Lately, eradication of the tumour with cystostatics (with stages been reported to have a comparable 5-year survival
or without radiotherapy) has once again become an alterna- to radical cystectomy, although survival with an intact blad-
tive to radical cystectomy [24]. Caffo et al. [25] have found der is somewhat less [11]. Thus, one may take the position
a better quality of life in patients treated with conservative that, since we do not know that organ preservation is clear-
therapy (radiotherapy with or without chemotherapy) than ly inferior in terms of survival, it might be reasonable to of-
with urostomy. Sixty-six (33%) of the 201 persons operated fer all patients both alternatives, describing different future
on in our study who say they would accept a certain de- symptom scenarios depending on outcome. However, the
crease in survival to avoid the postoperative symptom bur- other stance is to advocate a biological rationale indicating
den could have been offered an alternative to radical cystec- that leaving a tumour in situ involves a risk of mutation that
tomy. Controls preferred a diminished symptom burden (to results in metastases and thereby worsens the prognosis. In
maximal survival) more often than the cystectomy subjects, addition, an unsuccessful treatment with cystostatics or ra-
which is in line with a study by Slevin et al. [26]. It is pos- diotherapy can jeopardize operability, which may also ad-
sible that they would take another position when actually versely affect survival. Before having valid data, the best
faced with a life-threatening disease. We have no data from possible conjecture is that organ preservation decreases sur-
the relevant period of time, i.e., on patients with a newly di- vival in an unknown percentage of subjects. Taking this
agnosed tumour. stance, a randomized study comparing radical cystectomy
with any organ preservation strategy would be unethical for
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Table 5. Sexually related symptoms among men during previous 6 months, occurrence and distress, age-adjusted relative risks

Variable Controls Patients with reservoir Patients with conduit

(n = 209) (n = 38) (n = 127)

Sexual activity/sexuality
Sexual desire less than once a month, n/total n (%) 105/197 (53) 16/35 (46) 69/117 (59)
Relative risk for patients vs. controls 1.0 1.1 (0.8–1.7) 1.2 (0.9–1.4)
Relative risk for conduit vs. reservoir a 1.0 1.2 (0.8–1.8)
No intercourse, n/total n (%) 94/182 (52) 28/36 (78) 84/99 (85)
Relative risk for patients vs. controls 1.0 2.0 (1.4–2.7) 1.7 (1.5–2.1)
Relative risk for conduit vs. reservoir a 1.0 1.1 (0.9–1.3)
No orgasm, n/total n (%) 74/187 (40) 19/33 (58) 72/107 (67)
Relative risk for patients vs. controls 1.0 2.0 (1.3–3.0) 1.8 (1.4–2.2)
Relative risk for conduit vs. reservoir a 1.0 1.1 (0.8–1.5)
Little or no orgasmic pleasure, n/total n (%) b 28/118 (24) 6/15 (40) 12/38 (32)
Relative risk for patients vs. controls 1.0 2.1 (1.0–4.7) 1.4 (0.8–2.6)
Relative risk for conduit vs. reservoir a 1.0 0.8 (0.3–2.0)
Low satisfaction with sexual aid presently used, n/total n (%) c 7/19 (37) 7/12 (58) 12/24 (50)
Relative risk for patients vs. controls 1.0 1.1 (0.5–2.3) 1.3 (0.7–2.4)
Relative risk for conduit vs. reservoir a 1.0 0.9 (0.5–1.8)
Erectile function
Erection moderately or substantially insufficient, n/total n (%) 86/196 (44) 33/35 (94) 102/112 (91)
Relative risk for patients vs. controls 1.0 2.7 (2.0–3.7) 2.2 (1.8–2.6)
Relative risk for conduit vs. reservoir a 1.0 0.9 (0.8–1.1)
Other problems during sexual activity
No ejaculate during orgasm, n/total n (%) b 8/139 (6) 12/12 (100) 26/27 (96)
Relative risk for patients vs. controls 1.0 17.4 (8.9–34.1) 25.2 (10.5–60)
Relative risk for conduit vs. reservoir a 1.0 0.9 (0.9–1.1)
Symptom distress in whole group
Little or no satisfaction with present sexuality/sexual life, n/total n (%) 46/176 (26) 24/31 (77) 63/96 (66)
Relative risk for patients vs. controls 1.0 3.2 (2.2–4.6) 2.5 (1.9–3.4)
Relative risk for conduit vs. reservoir a 1.0 0.9 (0.7–1.1)
No or low interest in sex, n/total n (%) 98/196 (50) 14/35 (40) 73/117 (62)
Relative risk for patients vs. controls 1.0 1.1 (0.7–1.7) 1.3 (1.1–1.6)
Relative risk for conduit vs. reservoir a 1.0 1.2 (0.8–1.9)
Moderate or substantial effect on sex life of urinary/urostomy
symptoms, n/total n (%) 6/205 (3) 14/36 (39) 30/124 (24)
Relative risk for patients vs. controls 1.0 8.8 (4.1–18.7) 7.2 (3.6–14.1)
Relative risk for conduit vs. reservoir a 1.0 0.7 (0.4–1.3)
Moderate or substantial effect on sex life of bowel problems,
n/total n (%) 5/209 (2) 1/37 (3) 4/122 (3)
Relative risk for patients vs. controls 1.0 1.2 (0.1–12.8) 1.4 (0.4–5.1)
Relative risk for conduit vs. reservoir a 1.0 0.4 (0.05–5.3)
Moderate or substantial distress if erectile dysfunction persists,
n/total n (%) 63/190 (33) 19/32 (59) 38/99 (38)
Relative risk for patients vs. controls 1.0 1.7 (1.1–2.6) 1.1 (0.8–1.6)
Relative risk for conduit vs. reservoir a 1.0 0.7 (0.5–1.1)
Moderate or substantial distress if experienced sexual
limitations persists, n/total n (%) 53/190 (28) 17/33 (32) 31/105 (30)
Relative risk for patients vs. controls 1.0 1.5 (1.0–2.4) 1.0 (0.7–1.5)
Relative risk for conduit vs. reservoir a 1.0 0.7 (0.4–1.1)

a The analysis was restricted to patients with a maximum age of 76.

b The analysis was restricted to sexually active men.
c The analysis was restricted to men using a sexual aid.
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Table 6. Well-being and energy level, anxiety, and depression level during previous 6 months, age and sex-adjusted relative risks

Variable Controls Patients with reservoir Patients with conduit

(n = 310) (n = 55) (n = 168)

Low psychological well-being (1–5/7), n/total n (%) 118/300 (39) 33/53 (62) 78/161 (48)
Relative risk for patients vs. controls 1.0 1.6 (1.2–2.2) 1.3 (1.0–1.6)
Relative risk for conduit vs. reservoir a 1.0 0.8 (0.6–1.1)
Low physical well-being (1–5/7), n/total n (%) 168/297 (57) 34/53 (64) 106/161 (65)
Relative risk for patients vs. controls 1.0 1.3 (1.0–1.7) 1.2 (1.0–1.4)
Relative risk for conduit vs. reservoir a 1.0 1.0 (0.8–1.3)
Low energy level (1–5/7), n/total n (%) 206/297 (69) 42/52 (81) 136/161 (85)
Relative risk for patients vs. controls 1.0 1.3 (1.0–1.5) 1.2 (1.1–1.4)
Relative risk for conduit vs. reservoir a 1.0 1.0 (0.8–1.1)
High anxiety level (3–7/7), n/total n (%) 60/298 (20) 14/53 (26) 31/160 (19)
Relative risk for patients vs. controls 1.0 1.5 (0.9–2.6) 1.0 (0.7–1.5)
Relative risk for conduit vs. reservoir a 1.0 1.0 (0.6–1.8)
High depression level (3–7/7), n/total n (%) 105/301 (35) 28/53 (53) 63/159 (40)
Relative risk for patients vs. controls 1.0 1.6 (1.1–2.3) 1.2 (1.0–1.6)
Relative risk for conduit vs. reservoir a 1.0 0.8 (0.5–1.1)

a The analysis was restricted to patients with a maximum age of 76.

the two thirds of patients in the present study who report un- that allow us to avoid poential problems of selection. Great
willingness to compromise survival in order to diminish the efforts were made to minimize the frequency of non compli-
postoperative symptom burden, even if survival was com- ance to diminish any resulting bias [28]. We restricted the
promised in only 1% of the subjects. material to patients operated on at least 3 years before com-
Our study describing a before-after situation is observa- pleting the questionnaire in order to exclude transient postop-
tional, and confounding is certainly an issue in the compar- erative effects and not disturb patients who turn out to be
isons between patients with conduit and patients with reser- short-term survivors. Most deaths from urinary bladder can-
voir [27, 28]. In the complete groups, moderate or much cer occur within the first 3 years after diagnosis [29].
symptom distress from diarrhoea and defecation urgency, Although the situation for men and women undergoing
respectively, was more prevalent in the conduit group than cystectomy in seriously impaired due to changed bowel
in the reservoir group. The symptoms were not related to function, a dissatisfactory sexual life, frequent urinary tract
age, and adjusting for age did not alter the results. The same infections and a feeling of decreased attractiveness (due to a
was true, somewhat unexpectedly, of preoperative radio- visible urinary diversion) the conditions in patients with uri-
therapy regardless of dose. However, minor nonsignificant nary diversion have been poorly documented and analysed.
differences between patients preoperatively treated with 40 Intensified pre- and postoperative information, psychologi-
and 20 Gy irradiation were detected. We observed a large cal support [30], as well as measures to prevent and relieve
difference in urine leakage in favour of a conduit, but no chronic distressful symptoms, may better the situation for
difference was found concerning odour. Other urinary vari- the cystectomized patient. Reasonably less traumatic
ables, as well as sexual function, were not altered by the surgery, sparing nerves and with careful dissection, and al-
type of urinary diversion. It is clear from our study that dif- ternative urinary diversion with orthotopic bladder recon-
ferences concerning the two types of urinary diversion are struction, can further improve the situation. However, in our
restricted to a few outcome variables. search for means to diminish symptom occurrence, we have
We used an anonymous questionnaire answered in the to consider the fact that only a minority of women and men
home environment. This method probably results in fewer in- are willing to accept a deviation from the treatment thought
vestigator-derived errors than, for example, a personal inter- to provide the best prospects for survival.
view or an identifiable questionnaire [27, 28]. One disadvan-
tage of this technique is the impossibility of supplementing
the answers when necessary; no data could be linked to indi-
vidual patients. Sweden maintains population-based registers
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 Acknowledgement

Stockholm Cancer Foundation, Swedish Cancer Society and

Stockholm City Council provided financial support.

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