Bladder Cancer - Frequently Asked Questions (FAQs)

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Who needs a cystectomy?

Any patient with bladder cancer that invades the muscularis propria or true muscle of the bladder, who does not have cancer spread outside the bladder should undergo a cystectomy. Additionally, any patients with a special type of bladder cancer called CIS that continues to re-occur despite BCG or chemicals in the bladder, cystectomy should be performed. Finally, patients who want the best chance for cure should consider cystectomy even if the cancer is not into the true muscle (T2) but is into the layer just above the muscle, but is of high grade (grade 3 T1).

If I need a cystectomy, where should I have it done?

Multiple studies have shown that surgeons who perform complicated procedures are more proficient at them. Complication rates are lower in the hands of surgeons who perform the same procedure more often and survival rates are higher. Most private practice surgeons know this information and send patients who need cystectomies to university hospitals for this reason. At the University of Colorado Hospital, we perform 1-2 cystectomies per week.

My surgeon told me he could do my surgery but that I would have to have a bag afterwards. Is that right?

Older and less experienced surgeons believe an "ileal conduit" (surgery that creates a stoma that drains urine into an external bag) is faster or better or less complicated. Although the surgery to create a new bladder takes about an hour longer than the surgery that leads to a "bag," many studies have found the surgical complication rate is the same. Patients who undergo creation of a new bladder (or neobladder) may have a slightly higher chance of electrolyte imbalances, diarrhea, or dehydration in the first month after surgery. However, the chance the cancer would recur after neobladder formation (in the urethra) is actually less, and of course, one’s body image is more natural! If a patient can tolerate the stress of bladder removal, he/she can certainly tolerate the extra hour of neobladder formation. For additional information on caring for your continent cutaneous diversion (pouch) or neobladder, please click here.

Do I need chemotherapy before my cystectomy?

This is a controversial question. A large, randomized trial showed that chemotherapy before cystectomy does improve a patients survival. However, this was a less than 10% difference. Additionally, if a patient has surgery before chemotherapy, if there is no spread of the cancer outside the bladder, chemotherapy is not needed, so if all patients are given chemotherapy before surgery, many are being over-treated with a toxic therapy they probably didn’t need. Additionally, chemotherapy does have a small risk of death associated with it, and, following treatment, some patients are too sick to have surgery.

What is the surgery like?

It takes 2 hours to remove all of the lymph nodes around the bladder, 3 hours to remove the bladder and 2-3 hours to create an ileal conduit or a new bladder. Patients are generally monitored in the ICU or step-down (a little less intense than the ICU) for a night or two following surgery.

How long will I be in the hospital after surgery?

Most patients are in the hospital for a week after surgery. It takes a long time for food to be able to pass through the area that is hooked together after a piece is removed to create a new urinary diversion. There are other tubes and drains that are removed during this time as well. The pain is bearable during this time with a button to push for pain medication as well as catheters near the wound that release medication slowly into the wound.

What are the complications of surgery?

Unfortunately, even in the best of hands, the list is long. First of all, there is a risk of death, that is approximately 1%. This is most often due to heart disease or a blood clot that gets to the lungs. So it is good to get checked out by a cardiologist before the procedure if there is any question about your heart risk. Then, there is a risk of bleeding - most patients require 2 units of blood so they are asked to donate 2 units prior to the procedure so they can get their own blood back. Then there is a risk that where the bowel was taken for whatever type of urinary diversion is necessary that the area where they were hooked together either gets too tight (resulting in nausea/vomiting and need for re-operation) or leaks (both are less than one percent risks) which also require re-operation. There is a chance of infection, which is generally managed with antibiotics or anti-fungals. Then, there is a high risk of problems with erections after the procedure for men and vaginal shortening for women. These conditions can be treated and should be discussed with the surgeon pre-operatively. There is a risk of incontinence following the procedure in almost all patients. After about 6 weeks, a new muscle is generally trained well enough to hold in the urine that does not work as hard prior to the surgery. However, about 10% of patients still leak during the day and 20% of patients leak at night. There are effective treatments for incontinence after cystectomy (artificial sphincters help patients regain continence in most cases). Patients with liver or renal dysfunction may not be candidates for neo-bladders because neobladders re-absorb some of the waste products sent to the bladder by the body. These can change one’s electrolytes (or blood chemistry) and creatinine levels.

What can I do to help prepare for surgery?

Cystectomy is a huge assult on the body and takes a full 3 months to recover from. Anything you can do to prepare your patience, perserverence, and optimism are encouraged. Most patients lose about 30 pounds with the surgery, although it is generally regained 3 months after surgery, so there is no need for most patients to loose weight before surgery. However, the higher one’s protein levels before surgery, the stronger he/she will be while recovering. Smokers should give up cigarettes 2 weeks prior to surgery if possible. This will improve outcomes of the surgery, decrease bladder cancer recurrence rates, and improve the patient’s overall survival rate.

What is my prognosis after surgery?

The prognosis depends on the "stage" of the cancer, or how invasive the cancer is. This is reported about a week after surgery by the pathologist after looking at the bladder under the microscope. If the cancer is confined just to the muscle of the bladder, the 10 year survival is 85%. If the cancer has spread to the fat outside the bladder, or to the prostate/vagina, the 10 year survival is 60%. If it has spread to the lymph nodes outside or the prostate the 10 year survival is 30%. Chemotherapy is generally given to the latter two groups before or after surgery.

What if I got radiation for my bladder cancer and now it is back?

Unfortunately, this is not an uncommon scenario. As long as the cancer has not spread beyond the bladder, the bladder can still be removed, but does require a skilled surgeon. Surgery following radiation is a very difficult ordeal and involves a lot of scar tissue. As long as the small intestine looks healthy, a neobladder can still be created, although the chance of complications after the surgery are greater.

What if my cancer comes back?

When bladder cancer comes back, it usually does so far away from the bladder (in the bones, liver, lungs, or brain). Chemotherapy is given but is not usually curative. This is why one needs to seek aggressive treatment from a competent surgeon as early as possible for invasive bladder cancer

Am I a good candidate for this sort of surgery? If so, why or why not?

It is difficult to define exactly which 30% of patients will have a complication, which is seen with this operation, whether it is performed in Denver, New York, Los Angeles, or Chicago.  It has been well documented that in facilities where more of these surgeries are done, there are fewer complications (1).  At the University of Colorado, we perform this operation around 100 times per year.  Patients who tend to do better are those who are relatively fit, and who are doing their usual daily activities.  Patients with extended friends or family support tend to be able to tolerate the whole situation better, and those who can keep a positive attitude seem to recover slightly better as well.   We have found that patients who are too thin or too heavy have more problems with this operation (2).  Patients who are very thin may have an advanced stage of cancer.  Patients who are heavy or who have had radiation to the abdominal or pelvic area are more prone to infection, difficulty with a stoma, and difficulty attaching a neo-bladder to the urethra.  Patients that are heavy frequently require additional procedures such as diverting ileostomies (stool is temporarily diverted to an external bag on the abdomen), percutaneous nephrostomy tubes (tubes are placed into the kidneys to help drain urine temporarily) or wound vac’s (devices to help infections heal faster using suction).

How do you think I will respond to the entire process?

Different individuals respond to the operation differently.  However, I have found these generalizations to be true.  The more educated one is about why one is having this operation and what the possibilities are in recovery, the better he/she does. In general, patients feel week and tired and have intermittent nausea and abdominal pain for several weeks to months after the operation.  There are some days that are pretty good and some that are pretty rotten, but in general after around 3 months, patients feel almost as good as they did pre-operatively.  Over the ensuing 6-9 months they tend to get back to baseline or feel even better than they did pre-operatively.

Describe in detail how the bladder removal will be accomplished?

With each bladder removal, the lymph nodes should be removed as well.  I usually start with this part so that for the bladder removal portion of the case all of the nerves in the pelvis are well visualized and so that I can see the margins of the bladder well.  After the bladder and lymph nodes are removed, an ileal conduit (where patient is left with a “bag” externally),  a neo-bladder (“normal plumbing), or a continent cutaneous diversion (no bag, but catheter (or soft hollow tube) is used to expel urine) is created.  The choice of which diversion is used for urinary storage after cystectomy (or bladder removal) is well detailed in additional slide presentation (3).

Will I have a neo-bladder constructed? How will it precisely work during the early post-operative stage and final recovery stage?

As long as your creatinine is normal, as long as you know there is a small chance (1%) you will need to put a small tube through your urethra to remove urine (penis for men), and as long as you understand you may have some minimal leakage from the bladder when you cough or sneeze and possibly some major leakage from the neo-bladder while you are asleep, then you are a good candidate for a neo-bladder.  The only time that we cannot perform a neo-bladder reconstruction under this circumstance is when the urethra has cancer (also very, very rare).  It is a good idea to have a back-up diversion in mind in case the urethra is found to have cancer at surgery and needs to be removed.There is a very, very small chance that when the abdomen is opened extensive cancer will be found and the abdomen will then immediately be closed. The neo-bladder will be drained with a catheter for 3 weeks after surgery.  It will take some time to train for the first 6 weeks after the catheter is removed, but ultimately works quite well during the day, but can leak when it gets full when one is asleep.  I usually recommend cutting down on fluids after dinner to keep it relatively dry and setting an alarm once or twice at night to empty the neo-bladder before it gets so full it leaks.  Depends or other urinary protective pads can be used as well and will be used during the period of training when the catheter is removed.

What if for whatever reason a neo-bladder cannot be constructed, what are options? 

A continent cutaneous diversion or ileal conduits are also options.

Any bowel issues/risks following surgery and following full recovery?

The risks of using bowel are three.  Two are risks in the immediate post-operative period, the other is a long-term concern.Post-operatively, whenever bowel is resected, there is always a chance the bowel contents can leak through the connection where the two pieces that need to remain in continuity were brought together.  There is also the chance that this same area can be swollen after surgery, causing nausea and vomiting (and/or need for a nasogastric tube – or suction device to remove stomach contents through a small tube placed in the nose).  Rarely this area gets so swollen or scarred a repeat operation is needed to remove the scar tissue and keep the bowel contents moving through the GI system.In the long term, since a portion of the bowel has been taken out of the GI system, there is a chance a patient may have more frequent bowel movements (usually one additional per day).

Will I have a temporary catheter following the surgery, and for how long?

3 weeks

Describe the typical hospital recovery  for a patient following this type surgery?  Could you describe the daily physical progress, expected behavior, pain management, risks?

The hospital stay is approximately one week if there are no complications.  There are up and down days during recovery.  Patients frequently have tubes in their nose upon awaking from surgery, a catheter, and a drain.  Patients are also on oxygen.  Eventually all of these but the catheter are removed during the hospitalization in most cases. We ask patients to get up and walk the day after surgery as this actually helps the bowel function progress, which is the hardest part after surgery.  Patients are generally not allowed to eat until they start passing gas after surgery (telling me that things are moving through the GI system and not just getting backed up, causing nausea, vomiting, and abdominal pain.  One cannot walk too much after surgery, and believe it or not, even though it isn’t particularly comfortable the first or second time, it makes one feel better in the long run! You will also have leg squeezers on after surgery to help prevent blood clots and you will likely get shots to keep your blood from getting too thick after surgery for a while. Pain control post-operatively is attained using a “PCA” (patient controlled analgesia).  This entails touching a button for a shot of morphine (in most cases).  One should use this as needed for pain, but should not use it if he/she isn’t having pain as it will slow the bowels further, can cause constipation and confusion, and can actually slow recovery.

Describe in detail the typical lifestyle changes, i.e., sexual, psychological, adjustment attitude?

Most people feel like getting through this surgery is one of the hardest things they have ever done.  That said, when one is completely healed, there isn’t much one can’t do with a neo-bladder, continent cutaneous diversion, or ileal conduit.  Most patient have a new perspective about what is important in life, and most who have smoked quit as this increases the risk the bladder cancer will return.  About 40% of men who were potent pre-operatively will retain their potentcy and it is important to mention that issue to the surgeon so she/he knows to perform a “nerve-sparing” operation if possible.  Levitra, Viagra, and Cialis can be used as well as injectable agents and a vacuum pump to stimulate erections if this is not possible spontaneously.  An artificial device to create erections can also be implanted at a later date if all of the above techniques are unsuccessful.  Ejaculation is dry after the procedure (no fluid comes out of the penis with climax, although climax itself is still possible, even when erection is not).

When will I expect to resume the normal urination process?

Again, this is variable, but most within 2-12 weeks.  Biofeedback is available for those who require more assistance.

During recovery, what precautions should I adhere to?

No driving while on pain medications, no lifting more than 10 pounds.  Do not get catheter tube in position there is any possibility it could accidentally be pulled out.  If catheter is not draining or bladder feels full, try flushing to withdraw mucous, as you were taught in the hospital.  If this is unsuccessful try calling my nurse, Pat at 720-848-0195 (weekdays) or the Urologist on call at 720-848-0000 (ask for person on call for Urology). Although it is not easy to consume large amounts of food, try to stay hydrated.  Consume liquids frequently and make sure they have calories (protein shakes, ice cream shakes etc.).  Consume food in small frequent (high-calorie) meals.

Will I be tested for cancer following surgery and in the future?

Yes.  Frequency depends on the stage (how deep tumor goes and how far it spread).  You will be followed by your surgeon, your referring urologist, or your oncologist if you need chemotherapy.

What is the probability of cancer reoccurrence?

This depends on the cancer stage.  Stage refers to how extensive the cancer is.  If the cancer is confined to the bladder then the chance of recurrence is between 5-10% (CIS or just on the surface) to 15-25% (T2 pathology).  For patients whose cancer has extended to the fat outside of the bladder (T3), the chance of recurrence is 40% or so and for those who extend to the prostate, vagina (T4), or pelvic lymph nodes (N+), or to the prostate, the chance of recurrence is 50-70% respectively (4).  Most patients have “transitional cell carcinoma.”  But those who are diagnosed with adenocarcinoma or squamous cell carcinoma seem to have a higher chance of recurrence as they generally have higher stages of cancer.  Unfortunately, for patients who recur, there are not a lot of very effective options for cure.  For this reason, it is important to not delay if it is determined you need a cystectomy as the more you delay, the more likely you will have a higher cancer stage.

What are typically the most common problems experienced by family members during the patient recovery?

It is hard for a family member to see someone they love go through so much suffering.  However, if they know that their support truly does help recovery, hopefully they can stay involved and try to stay positive during the experience.  It is good for family member to realize that in most cases, patients who don’t undergo surgery for their bladder cancer tend to pass away from their cancer (with a painful, miserable passing) in 6-18 months. There are a few things to do in the first few weeks after surgery (mainly irrigating or removing those chunks of mucous the neo-bladder will now make).  Our stomal therapist will stop by while you are in the hospital and make sure that you and your family members are aware of this process.

Will I need a visiting nurse during my home recovery?

Yes, and this will be organized during the hospitalization.  Some patients even stay at a rehabilitation or step-down type facility for a few weeks after the procedure if they live alone, have a lot of other chronic conditions, or suffer complications during their surgery.

Will I be able to walk and climb stairs during home recovery?

Yes, and it is encouraged.  It helps pump blood through the veins in the legs, helping prevent clots there.

What questions or issues did we not discuss regarding surgery?

You will be meeting a senior resident or assistant who works with me during the pre-operative visit, before surgery, or during the hospital stay after surgery.  This assistant helps me better visualize what needs to be removed at the time of surgery, but is not performing the surgeon.  I, Dr. Wilson, perform the entire operation myself.  You will also see my team twice per day during the weekdays as well as me.  On weekends when I am not on call you will likely see my team-mates, but not me, although I am frequently still making decisions in your care, through them.  Residents have completed medical school, have been in the Urology division for at least an additional 3-6 years and have an M.D. degree.  

Who would you recommend if I need chemotherapy?

Patients who have advanced stage cancer when the bladder is removed through the bladder into the fat or lymph nodes (stage T3 or higher) will be recommended to follow up with an oncologist 6-8 weeks after surgery to consider chemotherapy.  The oncologist at the University of Colorado is fantastic and can give referrals throughout the Rocky Mountain Region. His name is Thomas Flaig, MD and the number to schedule an appointment with him is 720-848-0170.

Following my hospital release, how can I contact you or your nurse for questions/advice?

Call her at 720-848-0195 during the day or call the main hospital number at 720-848-0000 and ask for the Urologist on call during other times.

Is there any guidance or suggestions you can provide so I can best demonstrate my cooperation and make your job easier?  Simply, any patient dos and don’ts so that I am not perceived to be problem patient?

Try strengthening the muscle that controls the urine by contracting it several times a day before surgery if you are going to be having a neo-bladder.  This can help improve the time to dryness when the catheter is removed.  Try to be close to your ideal body weight by eating a diet rich in fruits and vegetables and low in saturated fats and by doing aerobic exercise before surgery and definitely, stop smoking if you are a smoker!

 

 

 

 

References:

1) Hollenbeck BK, Wei Y, and Birkmeyer JD.  Volume, Process of Care, and Operative Mortality for Cytectomy for Bladder cancer.  Urology 2007.  May 69(5):871-5.

2) Petersen JFS and Wilson SS.  Body Mass Index and Pathology, Complications, and Survival in Muscle Invasive Bladder Cancer.  Podium; South Central Section of the American Urological Association.  San Diego, California 2008.

3) Wilson SS.  Cystectomy: General Information and Nursing Secrets.  Society of Nursing, Downtown Denver, CO, September 2008.

4) Stein JP, Lieskovsky G, Cote R, et al.  Radical cystectomy in the treatment of invasive bladder cancer: long-term results in 1,054 patients.  J Clin Oncology 2001.  Feb 19(3):666-75.

 

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