Surviving cystectomy due to urinary bladder cancer with maintained quality of life

In 2008 1694 men and 626 women in Sweden were diagnosed as having bladder cancer. The character of bladder cancer is highly variable ranging from moderately serious development of superficial tumors to much more serious and life threatening tumors that can infiltrate the muscle layers in the bladder (advanced bladder cancer). The recommended treatment for those with advanced bladder cancer is major surgery in which the bladder is removed (radical cystectomy) and a connection is made to facilitate transfer of urine from the ureter (urinary diversion). The present study examined the occurrence of symptoms that can arise after a cystectomy involving urinary diversion and how these symptoms affect the activities of everyday living, and it also sought to find causal relationships leading to the occurrence of these symptoms.

Of the 491 patients we selected for the study, 452 (92 percent) answered a study-specific questionnaire consisting of a total of 180 questions about the resulting urinary diversion, hygiene, food and water intake, behavior of both the stomach and of the bowels, and even about other illnesses and personal habits. Of the 452 patients in the study group who had a cystectomy, 23 percent experienced a symptomatic urinary tract infection in the in the year preceding the start of our study; the frequency of occurrence was not dependent on the type of urinary diversion. Careful attention to proper hand hygiene before handling the stoma material or the drainage catheter did not prevent the development of urinary tract infection. In our material there was no statistical difference in the relative risk (RR) of development of urinary tract infection in those who always washed their hands before handling the materials compared with those who seldom or never washed their hands. However, we did observe an increase in the risk of urinary tract infection among those with diabetes mellitus, urinary stones, and among those who felt that they had an abundance of intestinal villi in the urinary diversion.

Individuals who had an orthotopic neobladder were troubled to a much greater degree by nocturnal urine leakage than individuals who had a “continent cutaneous urinary reservoir” and “non continent urostomy”, and these individuals also needed to wake up more often to empty the reservoir. Of the individuals with orthopedic neobladder, 37 percent reported in a self-evaluation that urinary diversion has an adverse effect on nocturnal sleep compared with 22 percent of the individuals with non-continent urostomy and 14 percent of the individuals with a continent urinary reservoir. Disturbance of the nocturnal sleep pattern affects in turn the quality of life as well as the individual’s ability to have enough energy to get things done during the day. This problem should be discussed before the choice of urinary diversion is made. For those individuals who are troubled by urinary leakage, treatment of this problem can improve quality of life. A cystectomy can also affect the patient’s ability to experience those signals that trigger emptying of the bowels. Participants in the study reported difficulty in identifying the signal to push that is needed to empty their bowels. This problem as reported by these patients is frequently interpreted as arising because the feces are hard rather than being related to any signal problem. This symptom is most common in those who have had a cystectomy with non-continent urostomy where the symptom is seen in every fifth patient (20 percent) and less frequently in those who have had cystectomy with a continent urine reservoir (14 percent) and even less frequently in those with orthopedic neobladder (8 percent).

Personal experiences, symptoms and personal thoughts arising from the patient’s illness and treatment may be seen as being sensitive information. Even if the personal information is sensitive, a number of former patients are subjected every year to the task of answering questionnaires to be used in the evaluation of treatment and post-treatment care. We have carried out studies to determine how participants in our study have experienced participation in a study by using study-specific questionnaires to be filled out at home. In our study a series of questions were posed at the end of the questionnaire about participation. The majority felt that it was desirable that a study of this kind be carried out (99 percent) and a number (76 percent) also felt that they had been positively affected by having taken part in the study. Only a small number (11 percent) felt that participation was somewhat negative.

In the future, these results will help our patients to be met more effectively than in the past. Furthermore, the results will contribute to an increased patient sense about the health-care professionals displaying an improved understanding of each patient’s needs. We also believe that future patients will be better equipped with the information needed when facing their individual choices of the treatment strategy to be used in dealing with advanced bladder cancer. A patient who is well informed about the risk of experiencing specific symptoms also has the chance to influence the choice of urinary diversion alternatives so that the method chosen will be most compatible with the patient’s particular life situation and in this way be able to decrease the risk of negative effects on quality of life.

List of scientific papers

I. Thulin H, Steineck G, Kreicbergs U, Onelöv E, Ahlstrand C, Carringer M, Holmäng S, Ljungberg B, Malmström PU, Robinsson D, Wijkström H, Wiklund NP, Henningsohn L. (2009). Hygiene and urinary tract infections after cystectomy in 452 Swedish survivors of bladder cancer. [Accepted]
https://doi.org/10.1111/j.1464-410X.2009.08909.x

II. Thulin H, Kreicbergs U, Wijkström H, Steineck G, Henningsohn L. (2010). Sleep disturbances decrease self-assessed quality of life in individuals who have undergone cystectomy. J Urol. 184:198-202.
https://doi.org/10.1016/j.juro.2010.03.009

III. Thulin H, Kreicbergs U, Onelöv E, Ahlstrand C, Carringer M, Holmäng S, Ljungberg B, Malmström PU, Robinsson D, Wijkström H, Wiklund NP, Steineck G, Henningsohn L. (2010). Defecation disturbances after cystectomy for urinary bladder cancer. [Accepted]
https://doi.org/10.1111/j.1464-410X.2010.09815.x

IV. Thulin H, Dunberger G, Lind H, Onelöv E, Henningsohn L, Åvall-Lundqvist E, Steineck G, Kreicbergs U (2010). Cancer survivors are positively affected by their participation using a study designed questionnaire. [Submitted]