The risk of bladder cancer for people with spinal cord injuries is 15 times higher than that of the general population, and it’s higher for people who use indwelling catheters. That sounds scary, but the cancer is still very rare, even among people with SCI, and there are some preventive measures that can be taken.
What to Look for, Who to Call
In the early summer of 2014, Kevin Smith, a 61-year-old C4-5 quad and retired lawyer who lives in Denver, went to his Kaiser health care physician seeking care for some minor inflammation and occasional bleeding around the ostomy site of his suprapubic catheter. “The Kaiser doctors, including a urologist, treated it as a normal wound. That treatment included six or eight visits with a wound care nurse who never said a thing even though ‘sores that do not heal’ is a cardinal sign of cancer. They weren’t concerned, so I wasn’t either,” Smith told NEW MOBILITY. But the wound never responded to treatment.
Smith happened to mention his nonhealing wound problem to a neighbor of his who coincidentally happens to be a surgeon. “He recommended I see a urologist who was experienced treating people with spinal cord injuries from Craig Hospital and was with a clinic staffed solely by urologists.”
The urologist Smith’s neighbor recommended was Dr. Richard Augspurger of The Urology Center of Colorado, in Denver. By the time Smith saw him in mid-December, it was nearly eight months after he had begun noticing symptoms. The punch biopsy revealed a fast growing squamous cell tumor in the stoma canal leading to the bladder. “I don’t know why they didn’t do this at Kaiser,” Smith says.
The Kaiser physicians didn’t do a biopsy most likely because they were unaware of the elevated risk for bladder cancer that people with SCIs face. Given the often aggressive nature of bladder cancer and the scope of treatment involved, it’s logical to ask about risk factors. This type of cancer is quite rare in the general population, affecting about 3 percent of all men and about 1 percent of women. And when it does occur, it’s normally what’s called transitional cell carcinoma and usually takes up residence in the lining of the bladder.
“The risk of bladder cancer for people with SCI is about 15 times higher than that of the general population,” says Augspurger. “People who have been using indwelling catheters are at even greater risk, especially if they’ve used an indwelling catheter for more than 10 years. When bladder cancer does occur in people with SCI, it’s just as likely to be squamous cell carcinoma, a fast growing and more dangerous form of cancer.”
But even factoring in the elevated risks, the number of wheelers who develop squamous cell bladder cancer is actually fairly low, according to Craig Hospital. Still, I can name four people I’ve known who’ve died of squamous cell bladder cancer in the last 15 years or so, including Barry Corbet, past editor of NEW MOBILITY.
Bladder Cancer Causes and Risks
Augspurger speculates that bladder problems most likely begin due to irritation, either from an indwelling catheter, repeated UTIs or bladder stones. All are quite common with a neurogenic bladder. Another problem is that bladder cancers — especially squamous type cancers — exhibit few early symptoms other than blood in the urine, which is also quite common. “Squamous cell cancer doesn’t look like other cancers, and when it is biopsied, the results can show something entirely different,” Augspurger says.
Dr. Donald May, a colleague of Augspurger, explained it this way: “It mimics other symptoms. In the bladder, it often looks like simple irritation or normal thickening of the bladder tissue rather than a growth or tumor until it gets larger. In addition, it can develop anywhere in the canal from the abdomen to the bladder. We usually spot it during a cystogram. For people who use suprapubic tubes, it’s important for physicians to go in through the stoma canal rather than the urethra so they can inspect the entire canal thoroughly as well as the bladder. Most doctors may be unaware of the elevated risks of bladder cancer with SCI.”
May says that physicians should employ a “high index of suspicion” concerning the bladders of SCI survivors.
Bladder irritation — both chronic and repeated — poses the greatest risk of fostering bladder cancer. And for wheelers, the risks of irritation are many, beginning with UTIs. In addition to the irritations repeated infections cause, some researchers speculate that UTIs also cause the release of nitrosamine, which may foster the development of cancer in the way cigarette smoke promotes lung cancer.
Bladder stones seem to form around some foreign object in the bladder — a strand of hair, some sediment or grit. Once they’re formed, they can be quite painful and damaging to the bladder. If not removed, the stones can also precipitate a UTI and even more irritation.
But the generally accepted biggest risk for irritation appears to be an indwelling catheter, either Foley or suprapubic. The irritation can be where the catheter tip rests on the bladder wall, at the neck where the catheter enters the bladder, or as in Smith’s case, anywhere along the ostomy canal through the abdominal wall leading to the bladder. That risk with indwelling catheters increases significantly after eight to 10 years. But don’t think you’re immune just because you don’t use an indwelling catheter. Fully half of all wheelers who develop bladder cancer use some other method of bladder management.
The literature also suggests that the “era of care” at the time of injury may also play a role, especially for those injuries predating modern antibiotics, anticholinergics and non-rubber catheters. In the ’60s, ’70s, ’80s and into the ’90s, suprapubic tubes were seen as a way for quadriplegics without the necessary hand function to do an intermittent catheterization program to lead more independent lives. Many paras also opted for suprapubics out of convenience.
Tobacco use and job type also contribute to the likelihood of bladder cancer. According to the American Bladder Cancer Society, smokers are two to three times more likely to develop bladder cancer than non-smokers. Different occupations can also pose risks, as truck drivers, hairdressers, printers, painters, textile workers and many who work in the chemical or leather industries may all be exposed to unhealthy levels of carcinogens. Diets high in fat and nitrates have also been linked to cancer.
Diagnosed in mid-December, Smith began wide field radiation and chemotherapy treatments in the middle of January, followed by surgery in May. “I tolerated the radiation therapy very well,” Smith says, “but the chemo was very painful. I almost stopped treatment. If I hadn’t been retired, I probably would have stopped.”
The surgery Smith faced in May was major and extensive, normally taking between four to six hours. Smith’s took eight hours and required three surgeons. They removed his bladder, prostate and stoma, then did an “ileal loop urinary diversion,” which brings a piece of small bowel — ileum — to the skin. The procedure is similar to a colostomy and requires the person to wear an external collection appliance. For women, in addition to the bladder removal, surgery also takes the uterus, possibly the ovaries, and maybe even sections of the vagina — essentially anything that comes in contact with the bladder is removed. Another surgeon removed a large tumor, along with affected lymph nodes and a large mass of necrotic tissue around the stoma canal. Throughout the surgery, surgeons sent tissue samples to be analyzed and confirm tumor boundaries for safety’s sake. Then a large piece of Smith’s thigh skin and muscle tissue was grafted to close the wound. Smith spent 15 days in the hospital.
By September, only four months later, the cancer was back and Smith was once again in the OR, this time to remove a small tumor in the surgical suture line. He also received two skin grafts. That surgery was followed by an additional round of chemo. Smith will now be scanned every three months. His January scan was clear, but the April scan revealed yet another tumor, which was treated with stereotactic body radiation therapy (limited but highly precise radiation fields). “That’s the nature of squamous cell cancer,” Smith says. “It’s aggressive and tends to spread.”
Importance of Prevention
Regardless of how you manage your bladder, there are steps you can take to decrease your risk of contracting bladder cancer. First and foremost, be diligent in all aspects of your management program. That means following all health care professional recommendations regarding medications, fluid intake, annual check-ups/exams, and above all cleanliness, including good hygiene to maintain a sterile environment when changing catheters or doing an intermittent cath. (For IC, “clean technique,” according to some studies, can also be effective, but not when frequent UTIs are a problem.) Good hygiene also includes daily cleaning of leg and night bags using a solution of chlorine bleach to flush the bags and kill off any potential infection threats.
People using indwelling catheters should alternate the leg on which they wear their collection bag. The thinking is that doing so will change the location where the catheter end and balloon rest in the bladder. Also, try alternating the side of the bed where the night bag hangs.
If irritation is a problem, try using hydrophilic catheters, which are lubricated and cause less irritation. Change catheters monthly or more often if recommended.
Follow other recommendations as well, especially those regarding any anticholinergic drugs, such as Ditropan, Vesicare, or Detrol. These drugs relax the bladder and help control bladder spasms, yet another source of significant irritation.
Don’t ignore different physical indicators that something is amiss: feeling run down, experiencing increased spasticity, more aches and pains than usual — all can be indicators of UTIs. While they are part of the SCI package and so fairly common, more than two or three UTIs a year should be cause for some concern and should be discussed with your urologist.
Many centers recommend annual visits to a urologist. May and Augspurger recommend not only yearly urological exams, but annual cystoscopies (a simple outpatient procedure in which a catheter with a tiny camera allows the urologist to examine either the urethra or the stoma canal, as well as the bladder for stones, unusual growths or other abnormalities).
Why yearly cystoscopies? “If I wait two years to spot something,” says May, “it’s often too late. Bladder cancer’s not very common, but it’s quite lethal. If we catch it early, we have a good possibility for a positive outcome. Unfortunately, the people I see often come from somewhere else and haven’t seen a urologist in some time because everything has been fine. They often don’t know the warning signs or risks and usually are not following a recommended protocol.”
Part of the yearly urology check-up should include an ultrasound and kidney-ureters-bladder X-ray to check for kidney and bladder stones, irritants known to be risks for bladder cancer.
Another important preventative behavior is staying adequately hydrated. While it’s hard to make accurate recommendations, intake should be sufficient to generate an output of three to four quarts of clear to straw-colored urine a day. Doing so helps keep the plumbing well flushed out and operating properly. A wise educator’s mantra for people with new injuries is: “The solution to pollution is dilution.”
Those doing intermittent catheterization should be sure to cath often enough to keep bladder volume at no more than 400 cc (about 12 ounces) so as not to overstretch, irritate and scar the bladder. When doing an IC, be sure to use adequate lubricant to avoid irritating the urethra and sphincter. Consult with a urologist concerning any ongoing problems with an IC regimen.
And the obvious bears reiteration: Don’t smoke or use any other tobacco product, including chew. As previously mentioned, smoking can increase the risk of bladder cancer threefold.
For his part, Smith remains hopeful. But having lived so long with SCI, he’s also a realist. “It is what it is. After 37 years of being a quad, cancer seems like just another barrier. Something’s gonna kill me,” he says. “I practiced law for 23 years, put two sons through college and now have an 8-month-old granddaughter. I’ve had a good life. I was upset with how long it took for a diagnosis, but since then I’ve had good care. I could go into a long remission.”
Smith’s reason for optimism comes from the recent fast-track status given to the cancer drug Opdivo to treat a similar cancer. “With this new drug, I’m hoping for another few years. A similar drug is helping keep Jimmy Carter’s brain tumor in remission.” Smith began treatment in late June. At $9,000 a treatment — not covered by insurance — he’s hoping for drug company assistance so he can watch that granddaughter grow up.
• Craig Hospital, craighospital.org/resources/bladder-cancer
• National Rehabilitation Hospital, sci-health.org/RRTC/publications/PDF/Bladder_Cancer.pdf
• UC Irvine Study, www.nature.com/sc/journal/v48/n3/abs/sc2009118a.html
• New Mobility, “Bladder Cancer: Increased Risk?” www.newmobility.com/2012/02/bladder-cancer-increased-risk
• New Mobility, “Bladder Matters;” www.newmobility.com/2005/01/bladder-matters
• New Mobility, “Suprapubic Revisited;” www.newmobility.com/2010/06/suprapubic-revisited