Even though his bladder cancer wasn’t caught early, Kevin Smith has hopes that the excellent care he currently receives means he will have years to spend with his granddaughter.
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.