Improving the situation of urinary bladder cancer survivors treated with radical surgery or radical radiotherapy

In this thesis we investigated whether the situation of urinary bladder cancer survivors can be improved. To do this, it is necessary to acquire a more specific knowledge of longterm distressing symptoms, symptom characteristics (nature, occurrence, intensity and duration), and of the corresponding symptom-induced distress, as well as the effect on wellbeing and the quality of life (VI). This more exact information can also be used in the pretherapeutic situation to "tailor", as far as possible, the method of treatment for the individual.

Well-being is statistically significantly lower in patients having undergone cystectomy and urostomy, both non-continent and continent, as compared to a matched control population (I). Patients treated with radical radiotherapy for urinary bladder cancer report the same lowered level of well-being (II) in contrast to patients treated with cystectomy and an orthotopic neobladder connected to the urethra; they reported well-being and a subjective quality of life as good as that of the matched control population (M). One reason for the discordance might be the feeling of reduced attractiveness in urostomy patients, a 5-fold increase in feeling unattractive being reported among them (I) as compared to no increase at all in cystectomised patients with a neobladder (III).

The 6-fold increase of the feeling of reduced attractiveness in the irradiated patients as compared to matched controls might be an effect due to the increased risk for bowel symptoms. A 9-fold increased risk for defecation urgency and an 11-fold increased risk for faecal leakage was reported by the irradiated patients as compared to the matched controls (II). The risk of being affected by these symptoms was also increased in cystectomised patients with a urostomy, and a 7-fold increase of defecation urgency and faecal leakage was seen compared to matched controls (I). The risk of symptomatic urinary tract infections was increased 3-fold among the operated patients with a urostomy, i.e. 25% had at least one urinary tract infection requiring treatment during the past year (I).

Virtually all men operated on were affected by sexual dysfunction, particularly erectile dysfunction, a symptom causing much distress among the affected (I+III, IV). A lower prevalence of erectile dysfunction was seen among the irradiated patients, i.e. 75% (II). Symptoms of sexual dysfunction were the most distressing kinds of symptom among urinary bladder cancer patients (IV). The prevalence of distressing symptoms was lowest for surgical patients with orthotopic neobladder substitution. The occurrence of distressing symptoms does not increase with follow-up time, but an increased symptom burden was strongly correlated with decreased well-being (V). A majority of urinary bladder cancer patients give priority to optimal survival over a reduced symptom burden (I- III).

If we refine the surgical technique during radical cystectomy and preserve (autonomic?) nerves in the pelvis, possibly the distressful bowel symptoms and the faecal leakage seen in patients operated in Sweden but not among those operated at Herlev University Hospital in Copenhagen can be eliminated. The high incidence of urinary tract infections in bladder cancer survivors possibly can be diminished by preventive measures. An orthotopic neobladder substitution and preservation of erectile nerves during surgery are further means to improve quality of life in urinary bladder cancer survivors. For those giving high priority to preserved sexual function, radical radiotherapy can be an option. During radiotherapy, diminishing the dose to the anal sphincter and rectum probably can increase quality of life in the patients that are cured. Our studies have identified additional factors that may improve the situation for urinary bladder cancer survivors, and 1 conclude that quality of life of urinary bladder cancer survivors probably can be improved considerably.

List of scientific papers

I. Henningsohn L, Wijkstrom H, Dickman PW, Bergmark K, Steineck G (2001). Distressful symptoms after radical cystectomy with urinary diversion for urinary bladder cancer: a Swedish population-based study. Eur Urol. 40(2): 151-62.
https://pubmed.ncbi.nlm.nih.gov/11528192

II. Henningsohn L, Wijkstrom H, Dickman PW, Bergmark K, Steineck G (2002). Distressful symptoms after radical radiotherapy for urinary bladder cancer. Radiother Oncol. 62(2): 215-25.
https://pubmed.ncbi.nlm.nih.gov/11937249

III. Henningsohn L, Steven K, Kallestrup EB, Steineck G (2002). Distressful symptoms and well-being after radical cystectomy and orthotopic bladder substitution compared with a matched control population. J Urol. 168(1): 168-74; discussion 174-5.
https://pubmed.ncbi.nlm.nih.gov/12050515

IV. Henningsohn L, Wijkstrom H, Steven K, Pedersen J, Ahlstrand C, Aus G, Kallestrup EB, Bergmark K, Onelov E, Steineck G (2002). Relative importance of sources of symptom-induced distress in urinary bladder cancer survivors. [Submitted]

V. Henningsohn L, Wijkstrom H, Pedersen J, Ahlstrand C, Aus G, Bergmark K, Onelov E, Steineck G (2002). Postoperative time, symptoms and well-being in urinary bladder cancer survivors. [Submitted]

VI. Steineck G, Bergmark K, Henningsohn L, al-Abany M, Dickman PW, Helgason A (2002). Symptom documentation in cancer survivors as a basis for therapy modifications. Acta Oncol. 41(3): 244-52.
https://pubmed.ncbi.nlm.nih.gov/12195743