BCAN's Patient Handbook - Bladder Cancer Basics for the Newly Diagnosed



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The Bladder Cancer Advocacy Network (BCAN) is proud to announce that we have been designated a Marine Corps Marathon (MCM) Charity Partner! BCAN has been allocated 25 guaranteed entries for the 38th Annual Marine Corps Marathon to be held on October 27, 2013; an event that sold out in 2 hours and 41 minutes in 2012.
  • We are looking at building “Team BCAN” to not only run in the event and raise awareness for bladder cancer but to raise needed funds for fostering research and patient education. According to the Marine Corps Marathon, there is not a required qualifying time to participate in the event, but all runners should maintain at least a 14 minute mile pace. In order to become a member of “Team BCAN” and officially have a slot in this year’s race, you must be registered through BCAN.
  • No federal or Marine Corps endorsement is implied.
  • If you are interested in becoming a member of BCAN’s team or have any questions, please contact Larry Rzepka, BCAN’s Executive Director, at lrzepka@bcan.org.
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    Ask the Doctor

    Spring / Summer 2009

    Our question for this issue of Outlook is answered by Matthew Nielsen, M.D., University of North Carolina at Chapel Hill. We sincerely appreciate Dr. Nielsen sharing his expertise regarding bladder removal surgery and the potential short-term as well as long-term issues that may arise from this major operation.

    Q. What should a patient expect following surgery for bladder removal?   What are some of the short-term complications that may arise ( e.g. stoma problems, incontinence, infections, bowel issues) and what can be done?  What are some of the long-term issues that may arise and what can be done to treat these issues?

    A. Radical cystectomy, the removal of the bladder, is a definitive treatment for high-risk bladder cancer.  Like any major surgery, numerous considerations factor into the decision to pursue this strategy, and to the extent that patients and their loved ones can anticipate some of the potential risks and side-effects associated with this treatment, they may better prepare for and cope with the stresses that sometimes accompany this journey.   A more thorough understanding of potential risks associated with any treatment plan helps inform the decision to pursue that plan.

    Bladder removal is a major operation and some patients may require blood transfusion during the postoperative period.  The blood supply is very safe currently, however there are still small risks of transmission of viral illnesses (approximately 1/70,000 risk of hepatitis, approximately 1 in 2 million risk of HIV).  For these reasons, some patients may elect to donate their own blood in anticipation of surgery, however this is not routinely practiced and should be discussed with your surgeon.  The risks associated with anesthesia are negligible for most healthy patients, however you will undergo a thorough preoperative evaluation by your medical doctor prior to surgery to identify potential individual risks based on other medical conditions.  Blood clots in the deep veins are another risk of surgery that can be mitigated with compressive stockings, early physical activity after surgery, and, at the discretion of your surgeon, blood-thinning medications to further minimize the risk.

    Infection is a risk of any surgical procedure, which will be minimized by receiving a short course of antibiotics around the time of surgery.  Additionally, patients with intestinal urinary tract reconstructions have higher rates of bacteria in the urine, which can translate into higher rates of kidney infections, supporting a higher index of suspicion for urinary tract infection in the setting of fever, flank pain, or other symptoms.  Because the intestinal tract provides the raw materials for urinary bladder substitution, an inherent feature of radical cystectomy is the surgical disconnection and reconnection of the GI tract.  This carries risks of bowel obstruction, which may occur early in the postoperative period or weeks to months later, and may in some cases require repeat surgery to relieve the obstruction.  Additionally, intestinal leakage (fistula) may occur, which, though relatively rarer, can be extremely serious.

    There is no perfect substitute for the urinary bladder and urologists rely on a number of different strategies involving “intestinal origami” to solve the problem of urine transport after removing the bladder.  These different options have different profiles in terms both of quality of life considerations as well as potential risks and complications.  With any type of reconstruction, there is a risk of scarring of the newly created connections between the ureters and the urinary diversion.  This may result in infection or renal functional loss and may require additional procedures to correct the problem.

    Patients receiving an ileal conduit reconstruction will have a urinary stoma on the abdominal wall which will be fitted with a stoma appliance (adhesive drainage bag) to collect the urine.  This can be thought of a simple pipe continuously draining the kidneys.  Potential problems with the stoma include stenosis (scarring of the skin resulting in impaired drainage and occasionally pain).  This can be minimized by obtaining a close fit around the edges of the stoma with the appliance base, which minimizes irritation of the surrounding skin from the alkaline urine.  Many urologists work closely with enterostomal nurse consultants who can help patients acclimate to life with a urinary reconstruction and also identify the best appliance for a given patient, which may help mitigate this problem. Patients who develop stenosis may require additional procedures or, rarely, revision of the stoma to correct this.

    Patients receiving a neobladder reconstruction face a number of additional considerations.  It is not uncommon to observe mucus in the urine after intestinal segment urinary diversion, and this may be more noticeable—and potentially problematic—for patients with neobladders.   Your surgeon may instruct you on techniques to irrigate the mucus from the bladder on a regular basis to prevent obstruction of drainage, which could result in leakage of urine into the abdomen, or potentially rupture of the neobladder.  Regular irrigation may also help minimize infection and the formation of stones in the urine, which also may occur in the setting of urinary tract reconstruction.

    For patients who receive a continent urinary diversion drained via the urethra (orthotopic neobladder), there may be problems with incontinence (urinary leakage) —particularly while asleep, though also during waking hours—or urinary retention (the inability to empty the bladder) which may require intermittent self-catheterization.   Additionally, continent urinary diversions may take several months to dilate to their full capacity, which may require rigorous frequent emptying schedules under the direction of the surgeon.  Mild incontinence may improve with time as the neobladder gains capacity and may also be managed with pelvic floor exercises or biofeedback.  More severe cases may require additional continence-restoring procedures.  Retention requiring catheterization has been reported to be more common in women than men.  For this reason, some surgeons have their patients attempt self-catheterization of the urethra prior to surgery to ascertain the acceptability of this procedure should it be required after surgery.

    Some patients may receive a continent catheterizable neobladder (drained via intermittent catheterization of a small stoma on the abdominal wall), which may be complicated by stenosis (scarring) of the catheterizable stoma.  Any difficulty with catheterizing a continent stoma or emptying an orthotopic neobladder on a regular interval (typically once every several hours) should prompt an immediate call to your surgeon, as the consequences of an undrained neobladder can be severe.

    In the longer term, there may be metabolic and electrolyte abnormalities associated with the exposure of intestinal lining (which functions to absorb materials) to the waste products excreted in urine.  These will be detected by changes in blood electrolytes or acid-base status on routine blood work.  These may be more common in patients with continent diversions and may require supplementation with different electrolytes or acid neutralizing medications (i.e. Tums).   Chronic acid-base changes in the blood stream may result in bone loss, potentially requiring medical intervention.  Some nutrients (i.e.vitamin B12) are absorbed in the gut segments used for urinary diversions, and months to years after surgery may require specific repletion strategies if a patient is found to have low levels in the blood.  Certain medications excreted in the urine may also be reabsorbed in the urinary diversion and might therefore require modification of dosage, including some chemotherapy drugs and phenytoin (Dilantin) and others.  Ask your doctor to review your medications and help make necessary dose adjustments.

    Removal of the bladder in males with bladder cancer typically includes removal of the immediately adjacent prostate gland.  This results in problems with erections in some men and infertility in all men as the anatomic connections between the testes and urethra are disrupted.  The nerves responsible for causing erection run adjacent to the prostate and may be injured in pelvic surgical procedures.Techniques to spare these nerves, developed for prostate cancer surgery by Dr. Patrick Walsh at Johns Hopkins in the 1980s, may be employed in radical cystoprostatectomy, preserving erectile function in many men.  Major factors impacting the recovery of sexual function are patient age and erectile function prior to surgery, with younger men and men with intact erections experiencing the highest rates of recovery of potency.  Some surgeons offer partial prostate-sparing techniques in carefully selected patients in an effort to reduce sexual side effects.

    In women, bladder removal for bladder cancer historically entailed removal of the gynecologic organs (uterus and ovaries), including a substantial portion of the vagina (termed anterior exenteration), as these are immediately adjacent to the bladder in women.  Further refinements of the surgical technique have afforded the ability to preserve some of these organs in selected patients, with resultant sparing of female sexual function.   Sexually active patients of all ages should discuss sexual side effects of surgery with their surgeon prior to undergoing bladder removal.

    The potential risks associated with bladder removal are balanced against the benefits afforded by aggressive treatment of a disease with real potential for causing harm.  To the extent that patients and their families can better educate themselves about the potential risks and complications of this major intervention, and thereby pursue a thorough and informative consultation with their surgeon, the process can be greatly enhanced.  This commentary is a brief overview of some of the potential issues that might be anticipated after bladder removal.