I am an oncology nurse of the Akershus University Hospital in Norway. We implemented the Enhanced Recovery After Surgery (ERAS) programme in January 2015. At the end of 2016, 83 patients have been operated for cystectomy in our ward. A part of my work is to extend pre-operative consulting for these patients. Thus, I consider the ERAS course during the EAUN congress very interesting.
The entire patient care pathway was examined, from pre-operative counselling to side-effects and post-surgical follow-up. In Norway it is not in our practice that a stoma nurse has the task to offer pre-operative counselling. Rather, this responsibility is carried out by a specialist nurse who has good knowledge in bladder cancer, cystectomy and urinary diversion.
None of our patients chose orthotopic neobladder last year and this seems to be a trend that is reflected in the rest of Europe. I learned from a state-of-the-art lecture in the EAU programme about ERAS/cystectomy and the numbers from an Italian case were nearly the same. These were the same numbers as Hakenberg mentioned in his lecture regarding stoma or continent reservoir. Only 2% of patients received a continent pouch. The patients who get a neo-bladder have a risk of becoming incontinent, especially at nighttime.
In my experience patients often choose an ileal conduit before neo-bladder because they think it is exhausting to get up at night to void and worry about the risk of incontinence. Many of these patients have to go to the toilet many times during the day and night, so before surgery they suffer from disturbed sleep. I talked to some patients with neo-bladder and who spoke about their regrets after a month due to the bother of getting up. After six months, though, they report being satisfied.
The case of Kelly Rogers gave good learning insights. It is terrible health care workers did not believe her and that she had to wait for a long time before she finally got help. Her case is a good example that second opinion has benefits and that a health care worker should encourage patients in difficult cases to ask for a second opinion. It must be frustrating for a urologist not to be able to help a patient, and asking a colleague for some help should not be perceived as failure.
There is a high rate of cystectomy patients who get complications. Thus, we also have to look at side effects over time such as erectile dysfunction, sexual problems for women and fatigue. These patients need follow-up by an oncology nurse or other specialist nurses following surgery. Finally, I believe that we should invest in more research regarding side-effects over the long-term, and that this topic should be emphasized in the research by and in the training and education of health care professionals, particularly doctors.
Margrete Ronge, Akershus Universitetssykehus, Dept. of Urology, Oslo, Norway, email@example.com