A patient’s story: Overcoming incontinence

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.

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.]

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.

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.

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.

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