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Incontinence after radical prostatectomy sucks. But for nearly all men, it goes away. For the very small percentage in whom it doesn’t, there is help.

JP Mac (John P. McCann) is an Emmy award-winning animation writer who worked for Warner Bros. and Disney, and a novelist.  He is also very funny.

So, when he wrote a short ebook about his experience with prostate cancer –  including his diagnosis in 2014 at age 61, the rush to find the right treatment and get it done before his health insurance was going to expire, his laparoscopic-robotic prostatectomy and the complications afterward, and his five-month battle to recover urinary continence after the surgery – he could legitimately have written a soap opera, or maybe even a tear-jerker; but he didn’t.

Instead, his ebook has a title that sounds like 1950s pulp fiction: They Took My Prostate: Cancer, Loss, Hope.  It’s not “Prostate Cancer Lite,” and it doesn’t minimize what he or anyone else has gone through to get back to normal after radical prostatectomy.  Far from it; in fact, his “short, hopeful essay” is a testament to what it takes to recover from this difficult but life-saving surgery:  a balanced perspective, a good sense of humor, a great support system, and plain old hard work and persistence.

Here’s a message you hardly ever hear about prostate cancer, or any illness, for that matter:  It’s okay to laugh!   That doesn’t mean it’s not scary, and that it doesn’t wear you down, or that you’re not afraid you won’t ever get back to normal.

“No cancer rocks, but this one is especially seedy,” Mac says.  His own story is one of “bloody urine, black feces, incontinence, impotence, vomiting, and various other bodily malfunctions that shouldn’t be discussed before supper.”  But he does discuss them, with the hope of helping other men and their families.  He knows that talking about what’s happening gives the cancer less power over your life, and helps you focus on the light at the end of the tunnel – getting your life back after the cancer is cured.

We are sharing Mac’s experiences about one area in particular that doesn’t get talked about much: urinary incontinence.  In fact, there might as well be a Cone of Silence over this subject as far as many men are concerned – and that’s a shame, because there is always help for urinary incontinence after radical prostatectomy.

When Mac was diagnosed with prostate cancer, his surgeon told him to buy the book by the legendary Johns Hopkins urologist, Patrick Walsh, M.D.: Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer.  Mac did, and he referred to it a lot – especially Walsh’s review of the male plumbing, which explains why at least some temporary incontinence is just about inevitable for men after radical prostatectomy.

Note: Long-term urinary incontinence is very rare after radical prostatectomy.  Results differ depending on the surgeon.  This is why, if you are considering radical prostatectomy, it is essential to find out how many of that surgeon’s patients have long-term complications.  If your surgeon doesn’t know, consider this a red flag:  The best surgeons keep track of their patients after radical prostatectomy. “In young (men in their forties, fifties, and early sixties), healthy men operated on by an experienced surgeon,” Walsh says, “about 80 percent should be wearing no pads – or at most, a security pad to catch the occasional drop – by three months after surgery, and at 12 months, 95 to 98 percent should be continent.”  Walsh considers a man continent “if he wears no pad or if he wears a pad that is dry.  “Many men continue to wear a small pad just to be safe,” he explains.  Your surgeon may have a different definition of continence, and you should find this out before surgery.  “Most men, even at three months, are not very wet.  It’s hard to believe, but urinary control does continue to improve over two years, and occasionally, even longer than that.”

But don’t lose hope, he adds:  “For many men, the recovery of urinary control is a slow process.  The most important thing you can do is not get discouraged.  If your doctor told you there is only a 2 percent chance that you will have a long-term, serious problem with urinary control, believe it.  This means there’s a 98-percent chance that you’ll be back to normal someday, even if nobody can say exactly when.”

From Three Sphincters to One

Why is urinary control an issue after surgical removal of the prostate?  Normally, Walsh says, men have not one, not two, but three separate anatomical structures to control urine.  There is a sphincter in the bladder neck, one in the prostate itself, and then there’s the external sphincter (also called the striated sphincter), below the prostate. Radical prostatectomy knocks out two of these, leaving only the external sphincter to do the work of three.

“That explains,” says Mac, “why a carload of guys can drive 270 miles from LA to Vegas in one shot, while women can’t traverse forty feet of shopping mall without a pee stop. Well now the solitary control tool I had—the striated sphincter—was the only bladder control organ women ever get.  Where did one find a striated sphincter, and what did it feel like?”

That’s a good question.  Because of the other two sphincters, in most men this external sphincter is never tested or even used much; there is no way to know before radical prostatectomy how strong it really is.  Also, like every other muscle, this sphincter loses its tone with age.  A complicating factor is that older men are more likely to have some benign enlargement of the prostate (BPH), too.  This could make the bladder thicker and more muscular – and much more powerful than a sphincter that may not have been that effective to begin with.

Mac didn’t really think about this in a lot of detail until his catheter came out after the surgery.  “A nurse handed me a thick cotton pad to put in my underwear.”  Mac’s urologist “warned me that the urine was coming, as surely as a Cambodian rice farmer predicting the monsoon. Little could be done, he explained, until I underwent physical therapy. There I’d learn exercises to strengthen the underused muscles of my external sphincter.”

Mac was so happy to have the catheter out that he thought the worst was over.  Cotton pad in place, he made an appointment to come back in three weeks, and took his wife out for breakfast.  “Rising an hour later after three cups of coffee,” he gushed urine “as if putting out a fire in a wastebasket.”  It turns out that the worst was just beginning.  “Basically, the bladder holds urine until a series of reflexes causes a bathroom urge.  Bladder and sphincters then receive a message from the brain to check flow until an appropriate time. When you’re incontinent, any time is just dandy.  You can experience stress incontinence with activities that suddenly increase pressure inside the abdomen like lifting or standing. Then there’s urge incontinence, which is a sudden uncontrollable need to leak, often suffered by federal employees in Washington D.C. Finally, there’s overflow incontinence when you can’t sense if the bladder was filling.  I had all three.”

Suddenly, Mac’s new normal was a life with absolutely no bladder control.  “Movements gross and subtle, lying on my back, it didn’t matter. Everything ended in a demoralizing urine surge. I really needed that physical therapist. But our new insurance had other ideas.”

While he “moped around home like the Incredible Surging Man,” his wife, Joy, spent hours on the phone wrangling with the old and new insurance companies, whose bureaucracies were “sharp as a paper cut,” Mac comments.  Meanwhile, he experimented with leakage protection:  “I tried packing my regular underwear with cotton pads. That idea cratered in less than a day. Not only were ‘man diapers’ necessary, but they required cotton pads inside as well. I was soaking through three pads a day minimum. Each morning, I’d wake up drenched, smelling like an interstate washroom.”

Days passed until, Joy finally convinced the insurance company that “we were, indeed, customers and had paid for a specific plan.”  Then, the insurance company insisted that the physical therapist wasn’t covered by the plan.  Mac was desperate; his urologist’s office staff stepped in to wrangle with the insurance and finally got the go-ahead for the physical therapist.  While all this was happening, “I lived the life of the urine free spirit.  Avoiding coffee or soda mattered little. No internal spigot staunched the constant flow.”  Mac got sick of smelling urine, of feeling that he was “marinating in pee.”

Three or more times a night, he says, “I’d awaken with man diapers soaked and pressure on my bladder. Sitting up, I’d whiz into a hand urinal, change, clean myself, then lie back down and hope for a little sleep before the next voiding.”

At last, Mac could see a physical therapist.  Mac drove to the appointment – his first time behind the wheel since the operation – hopped out of the car, and soaked himself again.  Then he met Eva, his physical therapist, who used biofeedback to help him identify the right muscles to use.

“She hooked my perineal and abdominal muscles to a laptop via adhesive pads, and for the next hour, gave instruction in finding, then clenching and unclenching my striated sphincter in order to control urination. On the computer screen, I could monitor my efforts. A moving graph alerted me when I targeted the correct muscles.”  Mac learned how to do Kegels – clench-and-release exercises to strengthen the pelvic floor muscles below the bladder.

“I found biofeedback to be of great value,” and for Mac, it helped him start to regain bladder control.  “I know a guy who underwent the same radical robotic prostatectomy,” he says.  “Afterwards, his urologist tossed him a few sheets of diagrammed Kegel exercises and said ‘Vaya con Dios.’ No one told my friend you could overdo these exercises. While other factors may’ve been in play, his continence recovery turned out to be longer and messier than mine. Maybe a little biofeedback could’ve improved his condition quicker.”

Eva gave Mac daily exercises with frequency and duration goals.  She also encouraged him to walk daily.  Psychologically, the Kegels were important,” he notes.  “I lived with a constant dribble that could transform into a flood.  Eva’s exercises provided me concrete specific actions. She also warned me against overtraining that could fatigue the striated sphincter, rendering it too tired to work.”

Five days later, at his next PT session, “I saw progress.”  For the first time, he could stand up without urinating.  Next, he learned to anticipate the “go” urge – and not wait until he felt pressure in his bladder.  “I could then reach the toilet with something left in the bladder.”  Mac discovered that, in order to stand up without putting excess pressure on his bladder, he had to walk bent over, “like Groucho Marx.”  At first, he could go maybe three or steps without a surge.

Joy noticed improvement before Mac did; so did his urologist, who told him, “a lot of the discomfort you’re feeling now will pass. Once you strengthen the striated sphincter, your bladder urges will stabilize.”

There was some good news:  Two months after surgery, Mac’s PSA was undetectable.  His cancer was gone!  And finally, after much hard work, his bladder control began to return.  “With persistence, I sensed how to locate and activate my new bladder-control muscles.  Eva suggested I aim to eliminate jug peeing (with the handheld urinal at night) and excessive bathroom visits.  Using the striated sphincter, I should school the bladder, aiming for fewer, but more productive, bathroom trips. In the meantime, I discovered a cost-effective method of cutting down on cotton pads out in public. By inserting several sheets of double-ply toilet paper into my man diaper, I caught the wild leaks. Just toss and replace the tissue. It was easier than finding a stall and swapping out cotton pads.”

Then, for two nights in a row, he only urinated once.  By mid-November, nearly two months after his surgery, “I’d slept an entire night without awakening to pee.  In the morning, I loped ape-like to the bathroom and urinated. Just after Thanksgiving, I stopped wearing man diapers and returned to underwear, albeit with a cotton pad and toilet paper inside.”

For Christmas, Mac and Joy flew to the Pacific Northwest to visit his sister.  Traveling was “an adventurous time, with me unable to cross forty feet of airport concourse without running into a washroom jackknifed over.  I grew to be an expert at identifying tile patterns.”

But even his “odd potty walk” would not last forever.  By March 2015, “ I could check flow and walk upright to the bathroom.  My newly discovered striated sphincter knew the routine and exceeded expectations.  I’d finally turned a corner.

It might not seem like it now, if you’re going through the worst of what Mac endured, but remember: only about 2 percent of men have long-term incontinence after radical prostatectomy, and if you’re in that percentage, there is still hope.  Talk to your urologist: options include collagen injections, a mesh sling to help take some of the pressure off of the sphincter, and for severe incontinence, an artificial urinary sphincter.

 

Janet Farrar Worthington is an award-winning science writer and has written and edited numerous health publications and contributed to several other medical books. In addition to writing on medicine, Janet also writes about her family, her former life on a farm in Virginia, her desire to own more chickens, and whichever dog is eyeing the dinner dish.