You DON’T have to leak after prostate cancer treatment

The following transcript was generated electronically. Please let us know if you see any transcribing errors and we’ll get them corrected immediately. 

Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians and caregivers all available at NAFC.org. 

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Welcome back to another episode of Life Without Leaks. I’m your host, Bruce Kassover, and joining us today is Sarah Jenkins, the Executive Director for the National Association for Continence. Welcome Sarah.

Sarah Jenkins: Thanks , Bruce. It’s so great to be here. 

Bruce Kassover: It is because today we have a very special guest. It’s Dr. Eric Rovner. He is a professor in the Department of Urology at the Medical University of South Carolina in Charleston, and he’s the director of the section of Voiding dysfunction, female urology and urodynamics in their department Urology.

But to us, he’s also somebody particularly special because he’s a longstanding board member of the National Association for Continence. So welcome Dr. Rovner. Thank you for joining us. Today. 

Dr. Rovner: Thank you so much for the invitation, Bruce. I look forward to a stimulating conversation over the next few minutes. Thank you. 

Bruce Kassover: So before we get going, can you tell us a little bit about how we got to be here today? How did you wind up getting into this line of work? 

Dr. Rovner: Yeah. Interesting. So I’ve been in practice a little over 30 years. My specialty is in benign pelvic floor disease, which basically means in the world of urology, people with problems either initiating urination or controlling urination. And this affects both men and women. I got into this field, I basically developed an interest in it during my urology residency training at the University of Pennsylvania in Philadelphia under the direction of Alan Wein. Alan is a mentor to me for many years. Alan had a world international reputation as a doctor in this field. And Alan spurred my clinical and academic interest in the world of urinary dysfunction, benign urinary dysfunction, voiding dysfunction.

Then I went on to the fellowship at UCLA with Dr. Shlomo Raz, another world-renowned expert in urinary incontinence. And then developed a practice back in Philadelphia for about 10 years specializing in, in this particular area, developed a program at Penn and then moved here to South Carolina, the Medical University of South Carolina, and developed a program here in concert with my partners here at the Medical University of South Carolina in Charleston.

We have a fairly advanced program here where we train residents and fellows, where we take care of many patients from all over the southeastern United States and might I say across the country. And we even have a fair number of international patients who come to see us here.

We have a very advanced diagnostic center. I’ve been very fortunate to gain funding through multiple different sources including NIDDK and National Institutes of Health and funding elsewhere to continue to research this field, make improvements in the field and optimize my care of patients with these really, very important and life-altering conditions.

Bruce Kassover: Life altering might be the right word for what we’re going to be talking about today, because, you mentioned how the conditions you treat affect men and women. They affect people of different ages and from all walks of life. But today we’re going to be talking about a specific subset of that. We’re going to look at men, particularly men who are recovering from prostate cancer, and the relationship between that and incontinence.

Now, if you get a diagnosis of prostate cancer, I’m sure there’s about a thousand things that are going through your head. Incontinence might not be at the top of the list, but maybe it should be a little more up there. You want to can, could you tell us a little bit about that? 

Dr. Rovner: Yeah so prostate cancer is a very common cancer in men. It’s, depending on the the sources that you might use, it’s either the most common or second most common cancer that’s diagnosed in men. And of course any diagnosis of cancer is life altering and perhaps the quality of life aspects of the collateral effects of cancer treatment are somewhat less important to the individual with a recent diagnosis as compared to their survival. But of course when people get diagnosed with cancer, it’s devastating. But prostate cancer is particularly vexing as a diagnosis because not only do does prostate cancer, if you will, come in multiple different flavors or types or risk of of shortening your lifespan. But indeed some types of prostate cancer don’t even warrant initial therapies. So it becomes quite confusing for the patient whether to choose the or not. And then on top of that, there’s such a myriad of therapies for prostate cancer, everything from what we term watchful waiting or really not doing anything all the way to really invasive surgical procedures and then a dozen or more treatments in between doing nothing and very invasive surgical procedures. So it’s quite a, it’s quite a confusing landscape when somebody’s diagnosed with prostate cancer and there’s much literature out there which for patients which, which might further confuse instead of illuminate the best or optimal choice for an individual with prostate cancer. But nevertheless, once the initial shock and devastation of getting a diagnosis of prostate cancer, then patients have to weigh the invasiveness and the potential downsides of each of the treatments with the potential for having their quality of life diminished or their span of life diminished from the cancer itself. And each of the therapies for prostate cancer carry with it, with them, specific risks, and when we look at urinary incontinence and specifically urinary incontinence in men, it’s quite a life altering event when it occurs, which it fortunately does not occur often in prostate cancer treatment, but can occur.

But it’s truly a life altering event for men, many of whom, even when it occurs, did not quite understand the ramifications, the implications on quality of life when it occurs. Men don’t tolerate urinary leakage very well. Patients who undergo prostate cancer therapy, surgery for example, or radiation, or the various minimally invasive therapies, who then get urinary incontinence after their therapy have a difficult emotional time in dealing with their incontinence which and some people can really delay their seeking interventions because of the devastating nature of the condition and the emotion associated with the problem.

Because incontinence affects you every minute of the day, every second, every minute, every second of the day. And it’s something you’re thinking about. And for a man who was previously a continent and went to the bathroom volitionally, if you will, when they wanted to and didn’t have to wear pads and diapers or other external devices, it’s really a very big change in their life. 

Bruce Kassover: So that has been wondering, let’s say that you get a diagnosis, but you are one of the people who’s at least fortunate enough that the primary approach right now is to just watch and monitor and not take any sort of active therapy. If you are one of those people, is incontinence something you should be worried about or does it really only tend to be associated with active treatments? 

Dr. Rovner: So urinary incontinence is vanishingly rare in men overall until we get to the eighth and ninth decades of life unless urologists or other surgeons do something to their urinary tract.

So in those men who choose to not have immediate invasive therapy for their prostate cancer, their risk of developing incontinence is just as everybody else’s is. It’s not the prostate cancer itself that generally causes incontinence. In fact, prostate cancer itself is really not associated with urinary incontinence unless it gets treated.

And again, I want to emphasize that the interventions for prostate cancer can be quite effective. And the incidence of incontinence with prostate cancer therapy is quite low. It’s just not zero. So again, I want to emphasize that without any treatment for the prostate cancer your risk of incontinence is essentially the same as somebody without prostate cancer. And for those who do get invasive therapy for their prostate cancer, again, the risk of incontinence is low compared to somebody who didn’t have prostate cancer. But it’s not zero. 

Bruce Kassover: Okay, that makes sense. But what’s different treatment approaches might a patient encounter? And what’s their relationship with incontinence also?

Dr. Rovner: Yeah, so, as I said earlier, the spectrum of treatments for prostate cancer is broad and deep. The spectrum of treatments include, like we said, watchful waiting, or another term would be, another type of treatment would be active surveillance. Active surveillance simply means coming back to your doctor every interval for repeat blood testing and biopsies and things, all the way up to radical surgery. Between no intervention, watchful waiting and surgery, there are a variety of different treatments. These can range from hormonal therapy, which can take the form of injections or pills. And those hormonal therapies can actually shrink prostate cancer. They often do not cure it, but can shrink the cancer, and people can live for many years on hormonal therapy without progression of their cancer.

It can take the form of a variety of different types of radiation therapy. Radiation therapy can be delivered via external sources called external beam radiotherapy, proton beam radiotherapy, but also something called brachytherapy or seed therapy where we can place radioactive seeds into the prostate.

And then there are a number of other treatments that are minimally invasive, some of which are supported by our national and international organizations, and some of which are not. So some of those therapies might include cryotherapy, which means freezing the prostate gland either in small portions or the entire gland or high intensity focused ultrasound which, again, can treat part of the prostate or the entire prostate. And then a variety of other, minimally invasive treatments for prostate cancer.

The major treatments however, fall into either end of the spectrum, at one end of the spectrum would be surgery and radiation therapy. And at the other end of the spectrum tends to be the watchful waiting or active surveillance.

The patients in the middle for minimally invasive therapies still represent a minority of patients overall getting treatment for prostate cancer, but that number is growing and the risk of incontinence with each of those varies. It can vary with a number of factors: patients’ age, patients’ body habitus, obesity if you will, medical conditions associated with the individual patient such as diabetes. It can vary with the patient’s prior history of any type of neurological disease such as multiple sclerosis or a condition so simple, such as a lower back lumbar disc disease also can affect your risk of incontinence with therapies. And each of these individual therapies, of course, carry their own inherent risk based on the treatment itself. And that could be due to the patient’s size of the prostate, their prior prostate surgery, could be the anatomy of their prostate. It could be the surgical expertise and experience of the surgeon doing the therapy. So a lot of different factors. Play into the risk of incontinence with these therapies. 

Bruce Kassover: Okay, that makes a lot of sense. Now I tell me if I’m mistaken, but isn’t a prostate removal, the one procedure in particular that is generally very highly associated with incontinence.

Dr. Rovner: Just to clarify, Bruce the surgical treatment of prostate cancer is associated with urinary incontinence. But again, the vast majority of people undergoing surgical treatment for their prostate cancer do not develop incontinence. It’s only a small percentage, and depending on how we measure incontinence that number might be as low as 2% of people undergoing prostatectomy or radical prostatectomy for prostate cancer.

Or it could be as high as 10% or 15% or 20% depending on how we measure it. I think most experts would say that the risk of developing urinary incontinence in an otherwise healthy male who does not have medical comorbidities meaning diabetes, obesity, neurological disease, doesn’t have any of those and simply has prostate cancer and has no other urological problems, the risk of developing significant urinary incontinence following prostatectomy surgery would be about 2% to 5%. That’s not very high. If I were an optimist, I would say that people undergoing prostate cancer surgery, therefore have a 95% to 98% chance of not having incontinence following prostate surgery.

Depends on how you spin, if you will, the numbers. So I would say that a 2% to 5% chance of having incontinence is quite low following prostate cancer surgery. But then again, of course, if you are one of those 2 to 5% of people who develop incontinence, that’s rather devastating. And from your perspective, you had a hundred percent chance of developing, or a hundred percent, you are a hundred percent incontinent now. So that’s a view that I hold that a 2% to 5% chance of incontinence is somewhat low, but then again, those are the patients that I see. And for that 2 to 5% of patients who have incontinence following prostate cancer surgery, for them it is quite devastating. And that’s not to at all minimize or say that we can’t be better than 2 to 5% at some point in the future. But with our current surgical techniques, regardless of where you have it done surgically whether you have it done at a large institution or not at a large institution, that risk of incontinence again in that healthy male is somewhere around 2% to 5%.

Bruce Kassover: That is incredibly encouraging and I certainly hope that, that’s something that all of our listeners really take away because, if there’s any reason for people to not consider getting surgery, it’s nice to hear that, that’s not nearly as, as significant as you might expect.

Now, I’m wondering, are we talking about no leakage at all following surgery or is there a period of time after surgery where leakage is expected but it goes away? 

Dr. Rovner: Yeah, that’s a good, that’s a good question, Bruce. So the to answer your question accurately I’m going to say that initially right after surgery, when somebody’s undergoing a radical prostatectomy for prostate cancer, temporarily they have a catheter in following the surgery to allow the surgical site to heal.

That’s a catheter, which is a tube in the penis. Which drains out the urine and allows the urine to bypass the surgical site, which is the site where the prostate was removed, to allow that surgical site to heal. And then the catheter gets removed. And when the catheter gets removed, many, but certainly not all, patients will have a temporary period of some loss of urinary control.

Now, whether that’s due to the catheter being indwelling or whether it’s due to healing at the surgical site? Many will have incontinence at that moment. Now over the ensuing days to weeks to almost months, almost all of those patients will have resolution of their incontinence. To the point where when we get to six months to a year from surgery, that’s when that 2% to 5% of patients who still have incontinence at six months to a year following surgery, those are the people that we consider for treatment. We generally, very conservatively treat patients following prostate cancer surgery with incontinence, for those first six months, we treat them very conservatively because, again, the vast majority, the vast majority of them will have resolution of their incontinence within the first six months to a year. So we tend not to be very aggressive treating them because they will get better on their own.

Now, I do want to clarify one unimportant aspect of urinary incontinence versus some urinary dribbling. The men, even without prostate cancer and who have no urinary dysfunction at all, will occasionally dribble a bit of incontinence or I should say dribble a little bit of urine following even a normal urination. Again, this is completely normal.

Men who don’t have prostate cancer, who don’t have any prostate problems, men will have a little bit of drip after they’re done urinating. We call that “post-void dribbling” in the, that’s the urology vernacular for it, post void dribbling. And almost all guys will develop that with time. Post-void dribbling, again, is a normal phenomenon in normal men who don’t have prostate cancer, don’t have any urinary problems. And this just occurs with aging. It has to do with the anatomy of males and where the urethra lives, if you will, in aging men. And that causes this post void dribbling. Men will have a little bit of dribbling when they put their penis back in their shorts and they’ll have a drip or two.

That’s very common. It has nothing to do with prostate cancer or prostate disease. That has much more to do with aging. And when I talk about in, when I referred to incontinence during this conversation, Bruce, that is not what I am referring to. I’m not referring to post void dribbling. That again is almost universal in men. And there’s virtually nothing that we can do about that dribbling other than to teach patients how to do a little bit of what’s called urethral stripping in order to get that last drip out before they put their penis back in their pants. So I just want to clarify that little bit of drip versus people who’ve had prostate cancer surgery, who have more than just a drip but have a constant flow of urine involuntarily. That’s a very different group of people. 

Bruce Kassover: That makes perfect sense. Now, if you’re somebody who’s just had prostate surgery and you expect that there’s going to be a period maybe up to six months where you know you can expect some actual incontinence, are there things that you can do to help either shorten that period or minimize the severity? Or is it just, you just, your body takes its course no matter what you do, and you just wait for it to end? 

Dr. Rovner: No I would I will tell you that in fact there are many different things that people can do during that period of time, up to six months to a year, to minimize or even eliminate the leakage until the body heals.

The most common is pelvic floor exercises or Kegel exercises. And there’s actually some good data. In the literature, in some really well done scientific studies, what we would call a randomized control trial, which suggests that Kegel exercises or pelvic floor exercises in men which are started before surgery and then continued after surgery, actually results in a more rapid return of urinary incontinence as compared to people who don’t do pelvic floor exercises either before or following their surgery.

Again people who do, or men who will do pelvic floor exercises have a more rapid return of their continence as compared to people who don’t. And we tend to emphasize this certainly in our practice here and make referrals to appropriate, appropriately trained physical therapists who do these types of exercises and can teach these types of exercises.

We will refer them to a specialized center that does pelvic floor exercises. And then have the patients do those exercises for that first six months to a year to maximize their recovery of continence. Now there are a variety of other treatments. There are some medications that can help some types of urinary dysfunction following prostate cancer therapy. A variety of these medications are certainly worth a try to reduce some urinary urgency or the feeling of needing to go to the bathroom. These medications they are termed “beta three agonists” and the medications’ generic names are mirabegron or vibegron; can reduce urgency and some types of incontinence, although rarely are they curative. Another class of medications are called anticholinergics or antimuscarinics. Some of these, the, some of the generic names are solifenacin or darifenacin or oxybutynin. And these can also reduce urgency and frequency of urination, but rarely are they curative of the leakage.

And then there’s some very practical, I’ll say pragmatic solutions for those with incontinence following radical prostatectomy. And these include external devices that fit over the penis that actually either prevent the egress of urine out of the tip of the penis or collect the urine as it comes out of the penis.

So one example would be something called a penile clamp. A penile clamp. And it’s a device that fits over the shaft of the penis, which basically compresses the urethra. The urethra is the tube that conducts urine out of the bladder, and these penile clamps compress the penis and urethra and prevent urine from coming out of the penis.

When the patient desires to go to the bathroom the penile clamp is simply removed. It’s generally held in place either with a little strap or a Velcro strap or a little clamp. And the penis, penile clamp is removed, the urine is deposited into the receptacle of your choosing, usually a toilet, and then the clamp is put back on. Clamps generally don’t have to be worn at night because most patients with post-prostatectomy incontinence actually don’t have much leakage at night. Some do, but it’s rare. And then the penile clamp is put back on in the morning and again, removed to urinate and put back on in between urinations.

These devices are available without a prescription. They can be bought at online: walmart.com or amazon.com. And if you search “penile clamp” you’ll come up with 10 or 15 different devices. And what I generally tell patients is to purchase one or two of them, find one that fits and is comfortable. And it’s really a temporary measure for, again, that’s six months to a year. And eventually most folks would be able to purchase these and find one that’s comfortable as a temporary measure. These devices can cost anywhere from about $20 to $50 online. And they’re cleanable. You, you can clean them and reuse them multiple times for weeks and months at a time. Another type of external device as a pragmatic treatment to something called an external collecting device or a condom catheter. These are basically a penile a condom that fits over the penis that’s attached to a little tube that drains to a bag on your leg.

These devices are by-and-large covered by insurance. But they do require a prescription and they do require a fitting session. Again, these are called condom catheters or external collecting devices. But again, they are covered by insurance. They do require a prescription and they need to be fitted properly.

These devices fit over the penis much like a condom. They can be left on the penis for a day or two or three at a time. And then the device is, the penile condom catheter is removed and a new one is placed on. Some people find these to be comfortable and preferable to pads or a penile clamp, at least until the time by which they recover their continence. And of course the last option would be pads. Pads come in a variety of different shapes and sizes and absorbability. I would refer you to the NAFC website for further information on the variety of pads that are available and absorbent products that are available. There’s an excellent section on the NAFC website that goes over all of the different pad and absorbent products.

Sarah Jenkins: Thanks, Dr. Rovner. One thing that we see at NAFC a lot from men is just, they really struggle when something like this happens to them and they’re not expecting it, they don’t know how to deal with it emotionally. Do you have any advice for how they can cope with this either emotionally or socially, if they’re struggling with these feelings of just, not only shock that they have incontinence, but those feelings of shame and embarrassment that go on with it?

Dr. Rovner: That’s a very good question, Sarah. And again, the, these are extremely difficult situations. Again, men don’t tolerate urinary incontinence very well. I would offer that probably the most important factor is to accept that they are not alone. That there’s a great number of men in a similar situation. And the vast majority of these individuals, again, will get better within that six-to-12-month period. I find that hope, true hope, can have a very favorable effect on patients’ emotional state of being and wellbeing. If they have hope that things will improve, and there is real hope, that can be quite supportive. And then there are a variety of, again networks, available online that have, support networks, prostate cancer support networks, that provide peer-to-peer counseling, again, having individuals share their stories with other individuals with similar problems, is, can be quite comforting.

In addition, again, in the, realm of hope, if you will, the the possibility that even those patients who remain incontinent at 6 to 12 months, there’s a variety of excellent treatments for their incontinence, and those remain in the bailiwick of the experienced surgeon or urologist and/or urologist that we can offer the patients’ hope and a return to normal activities once that 6 to 12 month window is is gone, now we can offer them a variety of other treatments to get them back to enjoying the activities that they liked to do before they developed urinary incontinence. And that’s really one of the best things that I do in my practice is to get these individuals who were, I wouldn’t say hopeless, but close to hopeless in terms of their own view of their own incontinence, and we can offer them a variety of different treatments that can restore their quality of life and their self-esteem. So they can get on and do the things that they like to do.

Sarah Jenkins: Yeah. That’s great. Thank you. 

Bruce Kassover: Maybe you could tell us, now, I’m listening to this podcast, I’m a patient and I know that this is something I should at least be thinking about. What is the best way to talk with your doctor about this? It’s embarrassing like we’ve been talking about. It’s difficult. How do you have that conversation? 

Dr. Rovner: Bruce, I’m going to, I will tell you straight out that it’s one of the best conversations that I have as a physician. When a patient comes to me and says that they’re having such incontinence problems and they haven’t had a solution, and they don’t have hope, oh, my, my conversation is one of hope and positivity. I emphasize that I’m happy they finally discussed it, because the only way we’re going to improve the situation is for them to discuss it with me or their healthcare provider, who then refers the patient to me. Without a discussion of the problem, we’ll never know that it’s there. The first part of that conversation is, understanding what they’ve been through generating a therapeutic bond, and then really discussing the options and individualizing treatment for each patient to then improve their quality of life.

What the message I would like to get across to the listeners here is that without mentioning it to your healthcare provider or coming to see a urologist you’re really not maximizing your chances of getting better from this rather devastating condition.

So step one. Is to acknowledge that you have a problem and, B, understand that there are solutions for that problem; just need to be proactive and seek some treatment. So again, that’s a very positive conversation that I can have with patients, but only the patients who come to see me. I can’t help the ones who don’t come to see me.

Bruce Kassover: That’s very true and it’s really encouraging to hear because I would imagine that so many conversations dealing with cancer of any type and all sorts of, side effects of treatment, they feel like they are grim discussions. And to hear that there is hope and encouragement and light at the end of the tunnel has got to mean a lot for people who are, facing, some of the worst news they’ve ever had to hear. So that’s really great and I appreciate that.

Now, this is Life Without Leaks. And one of the things we always like to do with before we leave is to just give our guests one little hint, tip, bit of advice, a suggestion to help them live a life without leaks. So I’m wondering if you might have one last little thing for us to leave with them today?

Dr. Rovner: Bruce, if there was one solution for everybody that would be wonderful. Unfortunately there’s not, well, or fortunately, to flip the flip the script here, fortunately there’s not one solution for everybody. Each patient gets an individual solution. So without examining their individual problem and condition and getting an evaluation and figuring out exactly why they’re having the problem, it’s hard to give you one solution for everybody. We’ve talked about a number of things that people can pursue. Things like pelvic floor exercises and penile clamps and external collecting devices and even absorbent pads initially. And then going forward after that six-month-to-a-year window, moving on and acknowledging the problem and then going out and being proactive and seeing your healthcare provider and getting some treatment because there’s treatment out there, Bruce, that treatment is effective; it’s some of the happiest patients that I see in my practice in 30 years. These are some of the happiest folks that I see. So other than imploring these folks to go out there and get some treatment, I don’t have a magic bullet for everybody, but I’ve got an individual armamentarium that’s ready to help people.

Bruce Kassover: That’s great news and happy patience is what everybody’s going for. So I appreciate that and thank you for joining us today. 

Dr. Rovner: Thank you, Bruce. Thank you, Sarah. 

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.