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A patient’s story: Overcoming incontinence

Posted By Harvard Prostate Knowledge On March 11, 2009 @ 2:19 pm In Incontinence,Patient Perspectives,Prostate Knowledge | Comments Disabled

Christopher Miller* is a real estate agent who is married and has two sons. About five years ago, at age 56, Mr. Miller was diagnosed with prostate cancer. After a great deal of research and consultations with five doctors, Mr. Miller decided to have a radical prostatectomy. [Editor’s note: The name of this patient and certain biographical details have been changed to preserve his privacy. All medical details are as he reported them.]

Although he considers the operation a success, in that it has apparently eradicated the cancer, Mr. Miller struggled for almost two years to overcome persistent urinary incontinence. For much of that time, he felt ill-served by the medical community. The story of how he eventually overcame this problem may be helpful to other men in the same situation.

What was going through your mind when you learned you had prostate cancer?

Like anyone else, I was surprised. You never think it’s going to happen to you. The biggest fear, of course, is that it might be life-threatening. Even though I knew this is generally a disease that takes a long time to grow, I still wondered how much longer I might have to live. So I thought of things like: Is my family provided for? Are my financial affairs in order? Will my children be secure? Will I ever meet my grandchildren?

Of course, I was very concerned about my wife. We’d been married 32 years at that point, and I worried about what impact this would have on her. She’s a very strong and good person, and she remained at my side every moment of the time. And that support proved to be invaluable.

How many physicians did you see before making a treatment decision?

As I recall, I saw two oncologists and three surgeons. They were all the best doctors, all highly recommended.

Why did you decide on a radical prostatectomy?

We had a meeting with a radiation oncologist at a major teaching hospital. He looked at my medical history, then he looked me in the eye, and he said, “I know I can cure you, but the research is not on my side. The data more strongly support your having surgery.” He said this in front of a room full of doctors.

Here was a man who was a radiation oncologist, who was saying, “Maybe you should have surgery.” So even though I had talked to other people, I think that was really the convincing moment. My wife and I were looking for a cure, and all of the information we were getting was that, given my set of circumstances, surgery was best. So then it was a question of who was going to perform the surgery.

Did anyone mention active surveillance as an option?

They did, but they frowned on it. Of course, this was four or five years ago. And all the information I was getting was, “Get this thing out of you.” Another factor was that I was young enough that people were saying, “Look, you’ve got a long life to live. If you were in your 70s, it might be a different story.”

Did the doctors advise you about possible complications from surgery?

They all explained that I might develop impotence or incontinence afterward. One reason that I finally chose the surgeon I did was because the complication rates he quoted were lower than the others’. He really believed that there was less than a 1% chance that I’d have an incontinence issue, and a 30% chance of impotence. [See Table 1 for a more accurate assessment of the risks of complications.]

And was that a deciding factor in your selection?

Absolutely. I mean, here were all the big guns in town, and his numbers seemed like the best. I also asked around. And the feedback was, “He’s got great hands.” We knew that his bedside manner left a lot to be desired, but I thought, “Who needs bedside manner? Let’s just get the best person, with the best hands, and let’s get it done.” And that’s how we selected him.

Table 1: Impotence and incontinence

The reported statistics on the likelihood of developing impotence or incontinence after prostate cancer treatment vary widely, as shown by the ranges below.

Procedure Percentage of men who may develop impotence Percentage of men who may develop incontinence
Radical prostatectomy 30%–70% 2%–15%
External beam radiation therapy 30%–70% 1%–2%
Brachytherapy 30%–50% 2%

How did the operation go? And when did it become apparent that you might take longer to recover than you had been led to believe?

The operation went fine. I went back to work very quickly, and in most respects I felt fine. I was incontinent immediately after surgery, but I was led to believe that the problem would straighten itself out within a few weeks or months. But it didn’t.

Did you share your concerns about incontinence with your surgeon?

I did, during follow-up visits after the surgery. I probably visited him three to four times during the first six months after surgery. He told me the problem would get better, and for the first month or two, I believed that. But as time went on, nothing was getting any better.

And he didn’t seem to care. In a typical visit, I waited a half hour or an hour to see him for literally five minutes, and then he moved on to the next person. So I finally gave up on him.

What sort of problems were you experiencing?

I had no problem at night, and I think for most people that’s the case. But when I got up, I was going through anywhere from four to five pads a day. I used a high-absorbency pad that tied around my hips on both sides, and I’d change it throughout the day. I tried doing Kegel exercises, to control the flow, but nothing worked. I was in trouble. I’m an active person. It was embarrassing, and it was the last thing I wanted to deal with. [For more information, see “Kegel exercises,” below.]

Kegel exercises

The strength and proper action of your pelvic floor muscles are important in maintaining continence. Here’s how to do basic pelvic muscle exercises, named for Arnold Kegel, the physician who first developed them:

  1. Pretend you are trying to avoid passing gas. You will feel a contraction more in the back than the front, like you are pulling the anal area in.
  2. Practice both short contractions and releases and longer ones (gradually increasing the strength of the contraction and holding it at your maximum for up to 10 seconds).
  3. Repeat multiple times, several times a day.

Was impotence an issue?

Forget about sex! That was the last thing on my mind during this period. I knew I had to deal with the incontinence issue first.

So what did you do?

After about a year of waiting for this to get better, I consulted with another surgeon. He recommended a sling procedure. I decided I would try this to see if it would make a difference. That was my second mistake. It was a very difficult operation, more difficult than the radical prostatectomy. [For an explanation of the surgical options, see Table 2.]

Did the second operation alleviate your incontinence?

No, everything was basically the same. That was a disappointment. After I told a friend about all my mishaps, he suggested I ask about having an artificial sphincter inserted. He’d heard it was very successful. I did consult one surgeon about it, but he hadn’t done many of these operations.

So I was at a dinner, about a year and a half after I first developed incontinence, and I was talking to a woman whose husband was a prostate surgeon who had passed away. And I told her about my dilemma. She gave me the name and number of one of her husband’s colleagues, and told me to use her name when I called him. So I did.

When I met with him, he explained the artificial sphincter procedure to me and my wife. I was immediately comfortable with him. He performed the operation. And I must say it has changed my whole life for the better. I still wear a very tiny pad, just in case there’s a leak when I bend a certain way, or lift something, just for protection more than anything else. And I’m very happy with it.

Table 2: Surgical options for incontinence after radical prostatectomy

If you’ve experienced persistent and bothersome urinary incontinence following radical prostatectomy, even after 6 to 12 months of trying conservative measures like Kegel exercises, it may be time to consider surgery. Current options and success rates are summarized below, based on a recent review article in Current Opinion in Urology [see “For more information: Urinary incontinence” at the end of this article]. Be aware that many of the studies cited involved small numbers of men.

Type of procedure Success rates Comments
Artificial sphincter

The surgeon places a fluid-filled cuff around the urethra and a small pump in the scrotum. The cuff prevents urine from escaping until a man squeezes the pump, releasing pressure on the urethra and allowing urine to flow (see Figure 1).

  • In a study involving 47 men who were followed for an average of three years, 87% reported regaining continence.
  • In the same study, 95.7% of men said they were satisfied with the operation.
  • 23.4% of men developed some type of complication, most often mechanical failure or infection.
  • 25.5% of men required some type of follow-up surgery to adjust the device within five years.
  • Considered the gold standard of therapy for severe urinary incontinence following prostate cancer surgery.
  • It may take 4 to 6 weeks to heal from surgery, during which the pump cannot be activated.
  • Possible complications include infection, erosion of tissue around the implants, and malfunctioning of the device.
  • Additional adjustment surgeries may be necessary.
Bulking agents

A bulking agent is injected into the tissue around the urethra, so that it’s narrower and closes more readily.

  • 17% of men became completely continent in one long-term study, and remained so for an average of about 11 months.
  • Other patients in this study enjoyed some degree of relief for an average of six months.
  • In another small study, evaluating injection of carbon microspheres in eight men, none of them became completely continent.
  • Collagen is most often used as a bulking agent.
  • This procedure can be performed on an outpatient basis.
  • After the injection, you may experience irritation for a day or two whenever you urinate.
  • Success may diminish over time as bulking agents (especially collagen) are absorbed into the body.
  • This may be best viewed as a temporary measure or as an option for men who cannot undergo invasive surgery.
Bulbourethral sling surgery

The surgeon makes an incision between the scrotum and the rectum and installs a supportive sling under and around the urethra, anchoring it to each side of the pelvic bone. By placing pressure on the urethra, the sling helps retain urine until the bladder fills.

  • In one study involving 71 men who responded to questionnaires following surgery, 36% regained continence (as indicated by not having to use an absorbent pad), while 68% used one or two pads a day.
  • Another study, involving 36 men followed for a year, compared two types of slings. It found that 56% of men who received a pigskin sling regained continence, while 87% of those who received a silicone-mesh sling did.
  • A third study, involving a Dacron or polypropylene-mesh sling, involved 30 men and found that 66.7% regained continence.
  • Several types of sling procedures exist, but this remains the most common.
  • Slings are made of different types of materials, such as collagen or silicone mesh.
  • Surgery is challenging and may involve transplantation of the patient’s own tissue to support the sling, adding to postsurgical discomfort and complications.
  • Complications can include infection, discomfort, and a shift from incontinence to difficulty urinating.
Source: Current Opinion in Urology, March 2006.

Could you explain exactly how this works?

The surgeon inserts a small pump in the scrotum, which is attached to a sphincter cuff and a small balloon located near the belly button [see Figure 1]. When I feel the need to urinate, I go to the toilet, and I squeeze the pump in my scrotum with one hand. By pressing the pump, I deflate this cuff, and the pressure comes off the urethra. So at that point I’m able to urinate. Then probably 35 to 40 seconds later, the balloon fills back up. By then I’ve finished urinating, or if I haven’t, I do it again.

Figure 1: Artificial sphincter

An artificial sphincter is a surgically implanted device with three major components. An inflatable cuff surrounds the urethra; when inflated, it prevents urine from leaking out of the bladder (see A). A pressure regulation balloon implanted in the lower abdomen ensures that the cuff remains inflated until it is time to urinate. At that point, a man squeezes a pump located in the scrotum, which deflates the cuff enough so that urine can flow (see B). The cuff then reinflates on its own.

Are you aware of this material in your scrotum when you’re not using it?

Not unless I feel it with my hand. I can walk around, exercise, do everything I normally do, and I don’t feel it. One challenge is riding a bike, because you need a flat seat so that your weight is better distributed, rather than concentrated in the middle. So I have to get another seat for my bike. But I can go out now and play football with my boys. I can do anything I want to do.

What was the recovery from this operation like, compared to the others you had?

It was probably a quarter as hard as the other two. It was nothing. I went in. I think I stayed overnight. And then I was back at work in a day or two.

What about potency? We haven’t talked about that yet.

Once I dealt with the incontinence issue, when I felt that I was 98% back to normal, then I could really focus on the sexual part. I couldn’t up to that point.

I’m not totally impotent. There are times when I can have intercourse without the aid of any chemical. But, I must say, it does help.

You’ve tried an erectile dysfunction drug?

Yes, but I’m not a “druggie” kind of person. If we want to go that route, which is very helpful in terms of creating more firmness, it means taking a pill and planning ahead. Sex is no longer spur-of-the-moment.

For me, the biggest change is that dealing with all of this enabled my wife and me to readdress our sexual life. And I think, as a man, you sort of think it’s all about being hard and being up, and I think what has happened is that I’m now able to focus more on the other person, which I might not have been doing as well prior to this operation. It’s made our sexual relationship deeper and stronger.

Because it gave you an opportunity to talk about things?

Yes. And sometimes the way we’ve been doing things is not necessarily the best way. So it’s given me time to reflect about how to make it different and be more thoughtful, and I think that plays out well for my wife.

Knowing what you do now, what advice can you provide to people who are going to be reading this story?

I think you have to find a doctor who will give you the right information. The hurt for me was not necessarily that I developed incontinence. I just wished my original surgeon had been more honest with me. And I’d advise other men that they really need to question the numbers about side effects. And if they know going into surgery that the likelihood of complications is high, then they’re prepared.

What I can’t understand, because surgeons have been performing prostatectomies for years, is why the information about incontinence and impotence isn’t more accurate. There is information that is available, but it’s not real. It’s a shame. It’s not right.

Of course, in a typical office visit, sometimes the doctor can’t address all these issues.

But my surgeon didn’t even ask. And where do I end up on his statistical map? I think urologists need to start dealing with this issue.

Urinary incontinence: Common and persistent

Although most reported statistics on the incidence of urinary incontinence following radical prostatectomy for prostate cancer indicate that the problem affects 2%–15% of men (see Table 1), this is likely understating the problem. Men are often reluctant to mention the problem to their doctors or, as in Mr. Miller’s case, find that their doctors don’t ask about it. Another problem is that relatively few studies have examined how long urinary incontinence persists and what proportion of men affected seek out interventions, as Mr. Miller did.

One study that sent periodic surveys to 279 patients to proactively seek their responses both before and after treatment for prostate cancer, which was published in the Journal of Clinical Oncology, found that at three months after surgery, 58% of men reported wearing an absorbent pad in the previous week, and at 12 months after surgery, 35% reported using a pad in the previous week. The investigators also asked about urinary leakage, assuming some men were using absorbent pads as a protective measure but might not be leaking urine on a regular basis. They found that at three months after surgery, 24% of men reported leaking urine “a lot” in the previous week, and at 12 months, 11% were still experiencing the problem. These results confirmed earlier studies, done on a retrospective basis (asking men to recall a problem, rather than report it as it occurred), which found that 31% to 40% of men either wore protective pads or experienced urinary leakage.

Larger studies, reported more recently, indicate that the problem of urinary incontinence often persists after surgery for prostate cancer. For example, an analysis of the outcomes of 1,291 men who underwent radical prostatectomy, published in the Journal of the American Medical Association, found that 8.4% remained incontinent 18 months or longer after surgery. Another study of 901 men treated with surgery, published in the Journal of the National Cancer Institute, found that 14% to 16% were incontinent five years after treatment. Finally, an analysis of the Medicare claims records of 11,522 men who underwent radical prostatectomy, published in the New England Journal of Medicine, found that, depending on age, anywhere from 18% to 24% of men continued to experience incontinence more than one year after surgery, and 7% to 9% sought out some type of corrective procedure, such as the placement of an artificial sphincter.

The flip side is that the majority of men who undergo treatment for prostate cancer regain continence. And even men who become incontinent are willing to accept that consequence as they weigh all the risks and benefits of cancer treatment. To read these studies yourself, see “For more information: Urinary incontinence,” below.

For more information: Urinary incontinence

Begg CB, Riedel ER, Bach PB, et al. Variations in Morbidity after Radical Prostatectomy. New England Journal of Medicine 2002;346:1138–44. PMID: 11948274.

Klingler HC, Marberger M. Incontinence after Radical Prostatectomy: Surgical Treatment Options. Current Opinion in Urology 2006;16:60–4. PMID: 16479205.

Potosky AL, David WW, Hoffman RM, et al. Five-Year Outcomes after Prostatectomy or Radiotherapy for Prostate Cancer: The Prostate Cancer Outcomes Study. Journal of the National Cancer Institute 2004;96:1358–67. PMID: 15367568.

Stanford JL, Feng Z, Hamilton AS, et al. Urinary and Sexual Function after Radical Prostatectomy for Clinically Localized Prostate Cancer: The Prostate Cancer Outcomes Study. Journal of the American Medical Association 2000;283:354–60. PMID: 10647798.

Talcott JA, Rieker P, Clark JA, et al. Patient-Reported Symptoms after Primary Therapy for Early Prostate Cancer: Results of a Prospective Cohort Study. Journal of Clinical Oncology 1998;16:275–83. PMID: 9440753.

Originally published April 1, 2007; last reviewed April 22, 2011.

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