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 who drink or smoke heavily may have difficulty with wound healing or lung problems during recovery.1Different individuals respond to the operation differently. However, we 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 weak 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.2With each bladder removal, the lymph nodes should be removed as well. We generally 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 the margins of the bladder can be seen as 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. There are three choices of diversions used for urinary storage after cystectomy. 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 .3
Neobladders can be created as long as your kidney function is normal, and as long as you do not have cancer in the urethra (tube that expels urine naturally). Neobladders are also not recommended if you are over 75 years of age, have had abdominal/pelvic radiation, have had a lot of bowel surgery, or do not wish to experience any urinary leakage (particularly at night). It is important to tell your surgeon what back-up option for diversion you would prefer in case something is encountered at surgery that would prevent you from having a neobladder.4
The neo-bladder is drained with two (or three) catheters after surgery, one through the urethra and the other going into the bladder through the skin (or three of varying sizes through the urethra). The first will stay in for approximately 3 weeks after surgery while the latter for 6-8 weeks (or all will stay in for approximately 3 weeks). It will take some time to train your new bladder for the first 6 weeks after the second catheter is removed, but ultimately works quite well during the day, but can leak when it gets full when one is asleep.
For 1 week before planned bladder removal, you will be asked to clamp your tube once you wake up and during the day, void every 3-4 hours. At night you can leave the catheter to drainage. During the daytime, when the catheter is clamped, you need to measure your “post void residual” which means that you will void and then unclamp the tube and measure what comes out of the tube and then write this down for the doctor. You should do this measurement at least 2 times a day in this week. (If all of your tubes were removed at week 3, you will not have to do this step).
After all tubes are out, you should void every 3-4 hours by the clock during the day and we 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.
In general, neobladders work fairly similarly to the native bladder. Instead of feeling the urge to void, patients usually feel more of a stomach ache when the neobladder is full. Patients push down, as if to have a bowel movement to empty their bladder. Because the pressure in the neobladder is not as strong as the pressure in the native bladder, the stream can be weak, so most men sit to empty the neobladder. Neobladders stretch and could hold many quarts of urine if allowed to do so. In general, the volume of urine inside should be kept to under 12 ounces to keep from over-stretching the neobladder.
Patients may be incontinent during the day or night. During bladder removal we remove the internal sphincter at the bladder neck and leave behind the external sphincter which prevents the urine from leaking. In patients that leak, it is thought the main problem is that this external sphincter is weak. This muscle can be strengthened with exercises and this may improve the incontinence. Artificial sphincters are also available. Sometimes the leakage can mean that the bladder is not fully emptying. Approximately 10% of patients (and more women than men) need to catheterize to keep their bladder emptying completely.5
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 removed (as it is here to create the diversion), 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 – a 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), or vitamin B12 deficiencies. Since B12 is absorbed from the segment of bowel that is removed, it is recommended you get your B12 level tested at least every year for the rest of your life after surgery and supplement if the level is low.6
The hospital stay is approximately 7-10 days if there are no complications. There are up and down days during recovery. Patients sometimes have tubes in their nose (nasogastric) upon awaking from surgery, several catheters and drain. Patients are also on oxygen. Some or all of these are removed during the hospitalization depending on what diversion you have.
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 which tells us that things are moving through the GI system and not just getting backed up, causing nausea, vomiting, and abdominal pain. Patients cannot walk too much after surgery, and believe it or not, even though it isn’t particularly comfortable the first or second time, it will make you 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 for a while to keep your blood from getting too thick after surgery and get blood clots in your legs that can go to your lungs (pulmonary embolus).
Pain control post-operatively is attained using a “PCA” (patient controlled analgesia) or epidural. The PCA 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.7
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. Some men who were potent pre-operatively will retain their potency even if a “nerve-sparing” procedure is performed. We try to do a “nerve-sparing” procedure in all potent men. It is important to mention this issue to the surgeon so she/he performs 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 surgery (no fluid comes out of the penis with climax, although climax itself is still possible, even when erection is not).8
Yes. Frequency depends on the stage (how deep tumor goes and how far it spread). You may be followed by us, your referring urologist, or your oncologist if you need chemotherapy or a combination of these team members10
No driving while on pain medications, no lifting more than 10 pounds. If you go home with catheters, 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 our nurses, Scott or Pat at 720-848-0195 (weekdays) or the Urology Resident on call at 720-848-0000.
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. Most patients loose about 10 pounds with the surgery due to waiting for the bowels to regain function. You do not want to loose more than that if possible. Some studies have found chewing gum while waiting for the bowels to start functioning again can be helpful. Please seek care at the closest Emergency room if one leg is more swollen, red, hot and/or painful than the other. This may represent a blood clot, which can happen after pelvic cancer surgery9
This depends on the cancer stage. Stage refers to how extensive the cancer is. If the cancer is confined to the bladder (stage T2N0) then the chance of recurrence is around 20-30%. For patients whose cancer has extended to the fat outside of the bladder (T3N0), the chance of recurrence is around 50%. For those who extend deep into to the prostate, vagina (T4bN0-2), or pelvic lymph nodes (N+) the chance of recurrence is greater than 70%. Patients with pathology that is pT3 or greater will be recommended to have chemotherapy after surgery if they did not have it before. Most patients have “transitional cell carcinoma” type of bladder cancer. Those that have pure “adenocarcinoma” or “squamous cell carcinoma” bladder cancer seem to have a higher chance of recurrence11
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.
There are a few things to do in the first few weeks after surgery such as irrigating or removing mucous the neo-bladder or cutaneus continent diversion 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.12
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.13
Yes, and it is encouraged. It helps pump blood through the veins in the legs, helping prevent clots there.14
You will be meeting a senior resident or assistant who works with us during the pre-operative visit, before and during surgery and during the hospital stay after surgery. This assistant helps me better visualize what needs to be removed at the time of surgery, but and is performing parts of the surgery under our direct supervision as this is a university teaching hospital and we train the next generation of urologists. You will also see our resident team twice per day during the weekdays as well as us. On weekends when we are on call you will likely see the residents but not us, although we are still making decisions in your care, through them. Our senior residents have completed medical school (M.D. degree) and have been in training with us for an additional 3-6 years. 15
Support can be helpful from a patient who has been through this surgery. You may ask your physician for a name of someone who has been through this surgery whom you can contact. You can also go to www.bcan.org
for more information from patients16
Eat what ever feels good! Your body and your intestines have been through a lot! The area where your intestines are attached back together will likely be swollen for a while. Drinking liquids with calories nearly constantly and eating small meals frequently are the keys to getting enough calories while things settle down. Gradually you will be able to eat more and more. Until then, take it easy on yourself and eat or what tastes good, and what causes you the least amount of abdominal pain/bloating. In general, you may be wanting to start eating healthier after cancer surgery. This is a great long-term goal. Save it for three months after recovery when your intestines are more recovered.17
Training the bladder is not rocket science but does take time and patience. When the sphincter muscle is strong there is little leakage. When it is weak, leakage happens. The external sphincter needs to be strengthened in order to control the urine. At first this takes conscious focus. With time it will become automatic. The external sphincter is a muscle much like any other. It becomes strengthened through repetition. We recommend you start Kegel exercises as early as possible. Kegel exercises consist of tightening the sphincter for a few seconds and then release. This should be performed at least 10 times per hour while you are awake. Most patients find that the pelvic floor muscles get notably stronger around 4 to 6 weeks. Generally, continence is gained in the morning first, followed by the afternoon, followed by with coughing or sneezing. 18
Nighttime continent is difficult because there is no nerve that sends a message from your new bladder to the sphincter telling it to tighten when the neobladder gets full. This is what happened with the original bladder. The more full the neobladder gets the more likely it might leak. The keys to staying dry at night include: cutting back on fluids during and after dinner, and getting up at least once in the middle of the night to keep the neobladder empty. Some patients need to set alarms to get up before bladder leakage. The bladder cancer advocacy network chat room bcan.org) may also have helpful suggestions.19
Yes. Everything but smoking in moderation is reasonable. You should not smoke or chew tobacco to keep your chances of cancer coming back to a minimum. Smoking Marijuana may also increase your risk of recurrent cancer.20
You may shower or bathe 48 hours after surgery. Hot tubs are ok if all wounds are closed and all tubes have been removed.21
You can do anything you feel up to doing with just two exceptions. No driving while you are taking pain pills and no lifting anything greater than 10 pounds until 6 weeks after surgery.
Generally things return to normal taste-wise somewhere between 4 to 6 weeks after surgery.23
Once you have lost all of your hardware from surgery, you will start to feel better. Expect to still feel tired being free from tubes is a big step forward in your new life. There is a chance you can get an infection after your tubes are removed, so keep an eye out for fever greater than 101°, heavy mucous, foul-smelling or very cloudy urine. If you are worried about infection, you can call our clinic nurse (720-848-0170), email your provider through MyHealthConnection or call the resident on call after hours (720-848-0000). if you experience leg swelling on one side that is new it may be a sign of a blood clot. This can be a dangerous condition and should be evaluated immediately in the closest emergency room. New, acute chest pain or shortness of breath are always a reasons to visit the emergency room as well.24
The new normal may involve your abdominal tissue around the scar being a little higher on one side than the other. This tends to resolve with time. There is often genital swelling that will resolve over the next few months. Mild lower extremity swelling may be seen after surgery that also generally resolves with time. Expect to feel quite tired even months after your surgery. Allow yourself lots of naps. Walking is important. Try to walk at least three times daily to prevent blood clots and pneumonia. Walking also keeps the intestines working as well. Gas, constipation, and even diarrhea are all expected changes right after surgery. Things tend to settle down to somewhere near normal around three months.25
Sex should wait until general healing is secure at 4 to 6 weeks. Most patients prefer to wait until they have regained urinary control as well (12 weeks average). In men, even with nerve-sparing procedures, the nerves are traumatized by surgery and have less-than-ideal functioning for at least six months after surgery. For men, the sooner aids for erectile function are used, the better then long-term result.
Neobladders, being made out of intestine, will generally always have bacteria inside of them. If the urine is checked when there are no symptoms of infection, there will be bacteria present. However fever, malaise, cloudy or foul-smelling urine with more mucous, are signs of significant infection. Bladder infections are not uncommon after surgery. Many patients get an infection every few years. This is not something to be anxious about, but something to keep in mind if you just aren't feeling well. You may email your provider, call our clinic, or talk to a resident on call if you feel you may have an infection. Often times we will give you a standing order for antibiotics you may for fill as needed if you have already experienced an infection in the past.
Use MyHealthConnection to email your personal provider. Call 720-848-0000 for issues with system.
Call our clinic and leave a message for our nurses between 8-430: 720-848-0170
Call the resident on call if it is after 430 or nights or weekend. 720-848-0000
Patients with a history of Ta, T1, or CIS urothelial cancer of the bladder should undergo the following schedule as a general rule
- Cystoscopy every 3 months for two years followed by
- Cystoscopy every 6 months for two years followed by
- Annual cystoscopy indefinitely
- Cytology is sent as part of each cystoscopy
- For any recurrence, patients start again at 3 month cystoscopy above
- For every recurrence CT IVP should also be obtained
- For patients with high risk disease (CIS, T1, or high grade) patient are generally treated with intravesical treatments to decrease recurrence. The general schedule for this is once weekly for 6 weeks at first diagnosis followed by once weekly for 3 weeks after the first 3-month cystoscopy, then once weekly for 3 weeks every 6 months for a total of 3 years after negative cystoscopy around the same time. In general patients need to wait until bleeding has subsided before starting intravesical therapy after a biopsy (average 2-6 weeks).
- You may have a catheter placed with surgery. This is usually temporary. It helps the bladder drain if there is swelling near the outlet and can help blood clots drain better. You can usually remove the catheter yourself a few days after surgery. The nurses who take care of you after surgery will give you more detailed information
- Expect to see blood in your urine after surgery. It is usually the worst the first few days after surgery, but sometimes it clears and then starts up again a few hours or weeks later when scabs fall off. The amount of blood is less than what it looks like. Drinking a moderate amount of fluid helps keep the blood dilute in the urine. Your body will make more and in general blood in the urine is not cause for alarm. Call or come in if you are making clots that are clogging the catheter
- Expect for your bladder to be slightly irritated after surgery. This means the urethra may burn or ache. You may have to go to the bathroom more often – even every half hour. This should clear up within 5-7 days. This burning and frequent urination will likely be twice as bad if Mitomycin was instilled in your bladder after surgery. If your symptoms are not better after a reasonable amount of time, you may have an infection. Please email your provider through MyHealthConnection (720-848-0000), call the clinic nurse between 8am and 430pm (720-848-0170), or call the Urologist on call on evenings or weekend to discuss antibiotics after 5-7 days
- Your pathology should be back within 2 weeks of surgery. This tells us your prognosis. You should have an appointment to see your doctor within 2-4 weeks of surgery. If you do not have an appointment call 720-848-0170 to schedule one. If you cannot make an appointment for some reason, email your provider through MyHealthConnection (720-848-0000 for assistance)
When you need to call 911 or go to Emergency Department
- When you have severe new shortness of breath or chest pain
- When you have leg swelling that is ne, especially just on one side
- When you can’t keep anything down for more than 24 hours
- When you can’t urinate
Follow-up after Surgery
Results from a meta-analysis of 13,185 patients who have undergone cystectomy reported 0.75% to 6.4% prevalence of upper tract recurrence in these patients.97 Surveillance by urine cytology detected 7% and upper urinary tract imaging detected 30% of these recurrences.
T4b Disease or Positive Nodes
Follow-up after a cystectomy should include urine cytology, liver function tests, creatinine, and electrolytes every 6 to 12 months for 2 years and then as clinically indicated. Imaging of the chest, upper tracts, abdomen, and pelvis should be conducted every 3 to 6 months for 2 years based on the risk of recurrence and then as clinically indicated. Patients should be monitored annually for vitamin B12 deficiency if a continent diversion was created. Urethral wash cytology every 6 to 12 months is advised, particularly if Tis was found within the bladder or prostatic urethra.
Here’s how I interpret that specifically:
pT2 patients: CT scan abd/pelvis 3-6 months after surgery, then annually for 5 years with CXR and urine cytology. CBC, CMP, B12 levels every 6 months. Annual ultrasound and cmp after 5 year mark
* Recurrence risk:10-20% decreases annually, even better with neoadjuvant chemo
pT3 and 4 patients: CT abd/pelvis, CXR, CBC, CMP, B12, cytology every 6 months
* Recurrence risk: 30-40%, decreases annually, even better with neoadjuvant chemo
Node Positive patients: Should be seen by oncology. They generally do CT Chest/abd/pelvis and/or PET around every 4 months (as well as CMP, B12, Cytology)
* Recurrence risk: 80% or greater. These folks should get into clinical trials. Still without surgery they generally would have died within a year.