Surgery in the form of transurethral resection of a bladder tumour (TURBT) or cystectomy (bladder removal) is integral to treating most people with bladder cancer. After bladder removal, you must also choose between the type of urinary diversion, including a neobladder or incontinent diversion. The type of surgery depends on the stage of the cancer. It also depends on the type of surgery available in your region and your risk appetite.
In this post, I look at some of the surgical options available, my experience and life after surgery.
Transurethral resection of bladder tumour (TURBT)
The first type of surgery you are likely to encounter is a TURBT. It can determine whether cancer has spread into the muscle layer of the bladder wall. A TURBT can also remove tumours that have not yet invaded the bladder muscle wall.
In a TURBT, the urologist passes a cystoscope through your urethra. You’ll get either general anesthesia or regional anesthesia of your lower body. In my case, I had a general anesthetic. My urologist informed me that if I woke up with a catheter in place, they had found a tumour and that I would stay overnight in bed. As it turned out, I woke up with a catheter.
The cystoscope has a wire loop at the end that removes any abnormal tissues or tumours. A lab performs testing of removed tissue and tumours. In my case, the lab results showed a very aggressive form of cancer.
My urologist performed a TURBT after ultrasound scans indicated a tumour. He found a tumour in a pouch near a major artery at the side of my bladder. As such, he was unwilling to perform further surgery. He referred me to a specialist urology surgeon, for which I am grateful.
Possible TURBT side effects
The side effects of TURBT are generally mild and don’t usually last long. You can usually go home the same or the next day and return to your usual activities within a week or two. I went home the following day and experienced bleeding.
Even if the TURBT eradicates the tumour, bladder cancer can return to other parts of the bladder. Another TURBT can treat recurrent cancer. The bladder can become scarred and unable to hold much urine after successive TURBTs. This outcome can lead to side effects like frequent urination or even incontinence.
In patients with a history of recurrent, noninvasive low-grade tumours, the surgeon may use fulguration to burn small tumours seen during a cystoscopy using local anesthesia. It’s safe but can be mildly uncomfortable.
If cancer has spread or is inoperable, the surgeon creates a diversion without removing the bladder. In this case, the purpose of the surgery is to relieve a blockage of urine flow rather than try to cure cancer.
In many cases, a TURBT may be curative, as can the next stage in surgery, the removal of the bladder, known as a cystectomy.
Cystectomy
When bladder cancer is invasive, as in my case, the surgeon will remove the bladder either partially or fully. This operation is called a cystectomy. Most of the time, patients undergo chemotherapy before a cystectomy. However, due to the aggressiveness of my cancer and its position outside the bladder, I had surgery before chemotherapy. A cystectomy is a significant operation requiring general anesthesia.
Partial cystectomy
If the cancer is not very large and is only in one place, partial removal can occur without taking out the whole bladder. Nearby lymph nodes are also removed and tested for cancer spread. The main advantage of this surgery is that the person keeps their bladder and doesn’t need reconstructive surgery. With this type of surgery, the main concern is that bladder cancer can still come back in another part of the bladder wall.
Radical cystectomy
If the cancer is more extensive, as in my case, or is in more than one part of the bladder, a radical cystectomy is needed. This operation removes the entire bladder, nearby lymph nodes, and the prostate in men. In women, the surgeon removes the ovaries, fallopian tubes, the uterus, cervix, and a small part of the vagina.
The surgeon makes an incision in the abdomen to perform the cystectomy. You’ll need to stay in the hospital for a week after the surgery. I was told ten days but ended up in hospital for five weeks due to complications. You can go back to your normal activities after several weeks.
In some cases, the surgeon may operate through many smaller incisions. This procedure is called “keyhole” surgery. The surgeon may hold the instruments directly or use robotic arms directed from a control panel to do the surgery. My team of surgeons did this to remove my bladder and create my neobladder.
This surgery may result in less pain and quicker recovery because of the smaller incisions. But it hasn’t been around as long as the standard type of surgery. It’s not yet clear if it works as well. In my case, I ended up having complications, including bowel obstruction and resultant sepsis infection, due to the robotic surgery. I need a second operation through a cut in my abdomen to repair my intestines and neobladder.
Effects of cystectomy on urination
Bladder surgery can affect how you pass urine. If you have had a partial cystectomy, this might be limited to going more often.
If you have a radical cystectomy, you’ll need reconstructive surgery to create a new way for urine to leave your body. Depending on the reconstruction, you will learn how to empty your bag or put a catheter into your stoma. Or, in my case, learn how to use lower abdominal muscles to empty the neobladder.
Aside from the psychological challenges of the new normal, a urinary diversion can lead to:
- Infections
- Urine leaks
- Incontinence
- Pouch stones
- Blockage of urine flow
- Absorption problems
- Vitamin B12 Deficiency
Reconstructive surgery after radical cystectomy
You’ll need another way to pass urine out of your body after a radical cystectomy. Reconstruction usually takes place at the same time as the cystectomy. My surgery took over 14 hours. Two surgeons performed it, one to perform the cystectomy and the other to construct a neobladder.
Incontinent diversion
A piece of the intestine creates a stoma that connects your kidneys to an external bag. The stoma needs to be kept clean, the bag emptied, washed and can be prone to leakage. Complications include urinary tract infections and hernias. Some people never adjust psychologically to having a piece of their intestine exposed externally. Many others go on to lead everyday lives.
An incontinent diversion is the most common option; depending on your age, it may be the only option. In this option, the surgeon removes and cleans a short piece of your lower intestine and connects it to your kidneys. This is known as an ileal conduit allowing urine to pass from the kidneys to the outside of the body. One end of the conduit is connected to the front of the belly by an opening called a stoma.
After this procedure, a small bag sticks to the skin on your belly around the stoma and collects the urine. The urine slowly drains out nonstop, so the bag must always be on. It’s emptied whenever it’s full. An incontinent diversion is the lowest risk reconstruction as it is far more common, not as complex and takes less time. But some people never adjust psychologically to having a stoma.
Continent Diversion
Another way for urine to drain is a continent diversion. The surgeon constructs a pouch from a piece of the intestine and attaches it to the kidneys. A stoma in your skin on the front of your abdomen connects to the pouch. You empty it several times daily by putting a catheter into the stoma through the valve. Some people prefer this method because there’s no bag on the outside. This option was not offered to me and is not very common in Australia.
Neobladder
In this method, the urine goes back into the urethra, so you pass urine the same way. To do this, the surgeon creates a new bladder (neobladder) from a piece of the intestine. As with the incontinent and continent diversions, the ureters from the kidneys connect to the neobladder. The difference is that the neobladder attaches to the urethra. This lets you urinate normally on a schedule, sometimes sitting up and sometimes standing up if you are a man. If successful, this allows for a more normal life experience than the other diversions. But it is more risky and prone to complications. Some people never regain continence, and others must self-catheter every four hours as they cannot empty their bladder.
Without the bladder’s nerves, you don’t have the urge to urinate. You, therefore, need to empty your bladder on a four-hourly schedule. This schedule prevents the neobladder from being overstretched. If the neobladder is over 1 litre in capacity, it becomes floppy and no longer empties. If this is the case, you must use a catheter to empty the bladder every four hours. However, after a few months, I could detect when my bladder was becoming full.
Over time, most people regain the ability to urinate normally during the day. Still, incontinence at night may be a problem. I was largely continent during the night for a long time, but now I am wholly incontinent and need to use a condom catheter at night.
I chose the neobladder option, but it is not for everyone depending on age. It is also more common in Europe than in Australia. The surgery is more complicated with a higher risk of complications, as I was to find out. But if successful, it allows for a more normal life post-surgery. Training the neobladder is gruelling; for the first two weeks, you must empty the bladder every two hours to stretch it gradually.
Neobladder vs Incontinent Diversion
If you have bladder cancer, one of the dilemmas you will face is whether you opt for a neobladder or a stoma. The incontinent diversion has fewer complications but is more intrusive to everyday life. I found the initial neobladder training harder than training for an ultra marathon. Research has shown that both options provide nearly the same level of satisfaction, albeit with the neobladder slightly coming out on top.
I chose the neobladder as it gave me the best chance to return to an active life in the outdoors. I rolled the dice and got hit with complications, but I ultimately achieved my goal.
In a way, it’s a Hobson choice – the necessity of accepting one of two or more equally objectionable alternatives. If I’d chosen the incontinent diversion, I probably would be wishing I’d chosen the neobladder. You need to weigh the pros and cons of both alternatives and make a decision that fits your lifestyle and appetite for risk.
Risks and side effects of surgery
The risks with any cystectomy are much like those with any major surgery. Problems during or after surgery can include:
- Reactions to anesthesia
- Bleeding
- Blood clots in the legs or lungs
- Damage to nearby organs
- Infection
- Sexual Dysfunction
- Vitamin B12 Deficiency
Most people will have at least some pain after the operation. The initial robotic surgery I had was not that painful. However, the subsequent abdominal surgery was uncomfortable for many weeks after.
I experienced a sepsis infection which can be very serious. After experiencing a high fever at night, the quick action of the nurses to put me on intravenous antibiotics straight away saved my life.
Sexual effects of radical cystectomy in men
A radical cystectomy removes the prostate gland and seminal vesicles. Since these glands make seminal fluid, removing them means that a man will no longer produce semen. You can still have an orgasm, but it will be dry. The upside is that you no longer need to worry about contraception.
However, after surgery, you may have nerve damage that affects your ability to have erections. In some men, this may improve over time. For the most part, the younger a man is, the more likely he is to regain the ability to have full erections.
For me, I lost my erectile function. Getting the blood flowing in that area early on is essential, or the penis will lose its function. Six months after surgery, my urologist put me on Viagra. It gave me headaches but little joy. I went on to try Cialis with little or no benefit.
Other people I have talked to in a similar situation have regained erectile function either with the aid of Viagra or not. It seems to be the luck of the draw. It would have been more of a concern if I’d been a younger man. I was lucky that I already had children and had enjoyed an active and fulfilling sex life.
However, I haven’t given up. After my second diagnosis being impotent was the least of my worries. I may look at alternatives, including an injection directly into the penis.
Vitamin B12 deficiency
The surgeon uses 30-40cm of your lower intestine to construct a neobladder or continent diversion. Vitamin B12 deficiency can occur as only the lower intestine can absorb vitamin B12. Symptoms of deficiency include fatigue, headaches, depression, gut issues, difficulties concentrating, increased urine output and pins and needles in hands and feet.
In early 2021 about a year after my surgery, I began experiencing symptoms of B12 deficiency. My GP referred me to my urologist surgeon. He said I imagined the symptoms as he could not find anything wrong.
My GP tested me for vitamin B12 deficiency. The test came back positive. I was put on a series of B12 injections and immediately felt better. Per protocol, my surgeon should have tested me for B12 deficiency 12 months after surgery.
Pads, pull-ups, catheters and Kylie
Incontinence products were a world I knew nothing about before 2019. Not anymore. With a neobladder, you can expect some leakage either during the day or at night. I wore a Tena Level 2 pad as insurance as I was largely continent during the day. At night I wore pull-ups in bed and slept on a Kylie pad in case of accidents. In the first few years, I was generally continent at night, but there were occasional issues.
In 2022 during my second experience with chemo, I seemed to become totally incontinent at night but still continent during the day. I went through two to three pull-ups a night, plus Level 3 pads and Kylies. So I started experimenting with condom catheters. A condom catheter works much like its namesake but has a nipple at the end connected to a 2l night bag. It took some time, but I now sleep through the night, which is a blessing. In Australia, where I live, a federally funded scheme provides some funding for incontinence products.
I also encountered a catheter in my bladder while in hospital as the neobladder healed. The neobladder has a mucus lining just like the lower bowel. This means that the catheter can become blocked. I periodically needed the nurses to use a giant syringe to unblock the mucus to alleviate kidney pain. I also used soft catheters when first training my neobladder to expand at home.
Conclusion
When faced with a life-threatening diagnosis like I was in 2019, where the tumour had already penetrated my bladder wall, I had no hesitation in opting for surgery. I wouldn’t say I liked it, but I was in no fit mental state at the time to try and heal myself through alternative therapies that I knew very little about. Perhaps if my cancer had been less invasive and aggressive, I might have spent some time looking at my other options. With a young family, I felt I could not risk it alone. If you already have a robust meditative practice and have resolved all your emotional trauma, going the alternative therapy route might be the one for you.
References
Bladder cancer surgery; Available at URL: https://www.cancer.org/cancer/bladder-cancer/treating/surgery.html
