Treating incontinence following prostate surgery

One thing that a lot of men who are facing prostate surgery often don't realize is that once the procedure is done, you're almost certain to experience bladder leaks. For most men, those leaks resolve after a few weeks or months, but for some, they can persist for years. The good news is that there are things you can do to improve your chances for rapid improvement, and today's guest, Dr. Vikas Desai, is here to explain how. 

Dr. Desai is a urologist, a board-certified member of the American Urologic Association and a member of the Society of Prosthetic Urologic Surgeons with more than 16 years of clinical experience. To learn more from Dr. Desai about prostate care, men's and women's bladder health, treatments for sexual dysfunction and other topics, visit his YouTube channel at https://www.youtube.com/@DesaiUro.

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Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/

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Transcript

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. 

Welcome back to another episode of Life Without Leaks. I'm your host, Bruce Kassover, and joining us as always 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: Yeah, I'm looking forward to this. Today's guest is Dr. Vikas Desai. He's a urologist and a board-certified member of the American Urologic Association and the Society of Prosthetic Urologic Surgeons. So welcome Dr. Desai. Thank you for joining us. 

Dr. Desai: Thank you, Bruce and Sarah, for having me and being able to talk to some of our listeners today. 

Bruce Kassover: So, Dr. Desai, before we get going, maybe you could tell us a little bit about your background and how you got to be on our show today.

Dr. Desai: So, yeah, so my background is, I grew up in the Chicagoland area. I went to college locally, ended up going out for training at the University of Nebraska, and then family and friends brought me back. And I've been in practice about 10 years after residency with a focus in prosthetics and specifically prostate cancer, survivorship and incontinence related issues.

And I think it's a very important topic. Because I would almost say that incontinence patients are our silent sufferers and that so many patients take so long to come in. You know, on average, most patients will take about three to four years to come in to seek medical advice. And so my goal, I – and what I do on a daily basis – is really just to educate patients and provide them solutions that are tailored to their needs and are going to help them regain their control, restore their function and really live life to their fullest.

And I think that's the most important thing that our listeners probably want to do is, how can they get back to doing what they miss doing and not have the incontinence define them?

Bruce Kassover: So I understand urology is a pretty broad topic. It's not just a specialty that's focused on men, for example, even though many people think of it that way.

But I know that you tend to really want to emphasize today some specific areas within urology. We want to talk about prostate cancer or prostate cancer survivorship. Is that correct? 

Dr. Desai: Yeah, no, of course Bruce. And so, one thing that I kind of want to let everyone know, and people might be already aware if you're listening to our podcast, but you know, there's about 6 million urological cancer survivors in the United States.

As of a couple years ago, and that represents about 33% of all cancer survivors. And about 50% of those are prostate cancer survivors. And so a big issue for patients is that there's a large number of patients who are surviving prostate cancer, which is great, but they end up unfortunately dealing with some side effects.

Some of the main side effects are erectile dysfunction or sexual dysfunction, and urinary incontinence is what we'll be talking about a little bit today. 

Bruce Kassover: Yes. So now, first of all, I guess if you get an, a cancer diagnosis that, you know, itself is incredibly frightening for most people because I imagine a lot of people imagine, you know, it's the worst case scenario.

This is cancer. I mean, I can see the clock is ticking, but yeah, as you're saying, prostate cancer is, is very survivable for a large number of people. A lot more than people may even be aware. 

Dr. Desai: Exactly, Bruce, you're, you're right on. And so prostate cancer, many people don't have to undergo treatment whatsoever. A lot of them are just watched. And the diagnosis of prostate cancer doesn't actually cause any side effects. It's truly the treatments that lead to some of these side effects, and that's what we're going to be focusing on today. And the reality is that many patients, even if they have an aggressive prostate cancer, will survive it after treatment. And so some of the side effects that may linger are very important. 

Bruce Kassover: Before we talk about that though, I want to go back to what you're just saying. You mean that, for people who get, who are diagnosed with prostate cancer, in many cases you just, you don't do anything other than monitor it? That's got to be very, I could imagine strange and maybe a little psychologically disturbing to people knowing that they have this thing in there and you're not actively doing anything about it. What is that like? 

Dr. Desai: It's a very interesting point you bring up, Bruce. And so we've learned over the years, you know, I would say 10, 15 years ago we managed prostate cancer – to be honest, many cancers – much differently than we do today. And really sticking with prostate cancer, we've learned is that prostate cancer is often slow growing and it's not like we're forgetting about it and not checking.

So we'll see patients back every three to six months with repeat blood work, potentially even doing another biopsy or something known as a prostate MRI, which is a radiology test to really surveil the cancer to make sure that things are not progressing. So it's not like we're forgetting about it.

And I think that's… would be more angst and anxiety in my mind, that we don't do anything. We're actually being very meticulous and almost very, I would say, methodical in, in the follow-up regimen for patients undergoing something known as active surveillance. And that's what we have a really good eye on patients as we're following this protocol.

Bruce Kassover: Well, that's certainly reassuring, but you know, we're, we're not talking today about just people being monitored, I suppose. I suppose that for a reasonable number of them, it does progress to the point where you have to have some sort of intervention. What are the typical types of medical procedures that are done when prostate cancer does advance?

Dr. Desai: Yeah, so when prostate cancer, you know, whether it's advanced or progresses when someone's on active surveillance or if they present with an aggressive form of prostate cancer, that is not going to be a good option to watch or surveil. Then we're going to be talking about treatment. Treatment really for falls into two main categories, whether it's radiation or surgery.

Bruce Kassover: So what does that look like then if you're going to have surgery? What's, what is a typical procedure like? 

Dr. Desai: So surgery is the removal of the entire prostate, including lymph nodes and the structures that are responsible for having children. And so focusing really on what the prostate does in an organ, the prostate provides that pelvic organ support similar to kind of the pelvic organ muscles for a female.

And so, once that prostate is removed, men will have leakage of urine when they cough, sneeze, or do any type of activity or meaningful movement. Now, many men. We'll recover that function and regain urinary control. But there are some things they have to do to help expedite that process. 

Bruce Kassover: Now you said that with great confidence that men will have leakage. Is that really absolute? I mean, are we talking about the vast majority of men or is there some reasonable number of men who don't, who manage to be lucky enough to not have to deal with incontinence? 

Dr. Desai: So everyone will have leakage to some degree. Now, many men will have very minimal leakage that will resolve maybe a week or two after the surgery, and some will have it linger. The people who have it linger beyond one or two years of time is probably less than about, I would say, 10% in this day and age. 

Bruce Kassover: Well, that's certainly not so bad, although I would imagine that if you're one of the 10%, it doesn't matter if 90% of the people are getting better, right? 

Dr. Desai: Yeah, exactly. No, I mean, it is reassuring that not a vast majority of patients don't have lingering issues where they require more advanced treatment, but for the 10% or so that do, it can be debilitating where they don't feel comfortable leaving the house or debilitating where they just stop doing certain activities.

Bruce Kassover: What can be done for these people? 

Dr. Desai: Yeah, so the first and foremost thing, and this is kind of where, you know, where many people might not have that issue right off the bat or have a lingering issue, is something known as Kegel exercises. 

So Kegel exercises, strengthening the pelvic floor muscles, I'm sure many of our listeners are aware of. That is a very common thing that we'll get patients to start doing. Even before they have the surgery, so they understand that, and then immediately after their Foley catheter comes out, which is used for part of healing after someone's prostate comes out surgically, they're doing those exercises right off the bat.

A lot of times they're plugged in with the physical therapist as well before the surgery and immediately thereafter to kind of help with the strengthening their pelvic floor muscles. And so many men, because they're already trained beforehand, they might not have much of an issue right after. 

Bruce Kassover: So, in other words, it's, it's never too early to start.

Dr. Desai: Correct. I think early discussion and prevention is key, but for the many men, or actually, I take that back; for the small subset of men who have these lingering issues where, you know, the Kegel exercises or the physical therapy are not helping with the situation, they're having leakage that requires multiple pads, or even if it's one pad that… I had a gentleman who was just using one pad a day, but he travels a lot for work and has to do a lot of walking. And so that was a very debilitating condition, just even though he was using one light pad. And so, for those patients, we're looking into surgical corrective options. 

Sarah Jenkins: We obviously see a lot of people come to us for help with this issue. Our message boards are completely filled with men who have had prostate cancer and now are suddenly experiencing incontinence. And most of them, it comes with a huge shock. And you know, some of them say they didn't know. Likely, they're so overwhelmed with all of the information about prostate cancer and how to handle it that maybe they didn't hear that part of the discussion with their doctor. That that could be an issue afterwards.

So yeah, I guess I would just ask your advice on how men can maybe talk to their doctor about this before they start any kind of treatment for prostate cancer. 

Dr. Desai: Yeah. I think one of the things that unfortunately is lacking in the urology community is good survivorship care. You know, I think many men are not really offered a good opportunity to kind of get plugged in with people who specialize in this type of care. You know, and I know we're talking even, Sarah, before they had surgery, and while many colleagues of mine in in bigger institutions may speak to some of the side effects, there's other colleagues of mine that don't.

And I think that's a tough thing, right? And I think the best way for patients to understand something, I mean, is to get educated, right? And I think, I think this organization that you all are a part of, I think is a great avenue for education. Obviously, there's education through the American Urological Association and the Care Foundation.

And so, I think really patients unfortunately have to do some self-education, whether it's kind-of seeking out communities, seeking out work through, you know, cancer resource societies and stuff. And so really that's kind of where I would say, you know, I think they can definitely ask their provider, but their providers might not be as forthcoming, which is unfortunate.

And I lead with the statistic is that, you know, up to 30% prostate cancer survivor undergo some point some point of depression where, like, regretting the treatment they may have undergone because they weren't really aware of the side effects or they weren't fully educated on it. 

Bruce Kassover: Okay. Now, I don't want to have surgery…I mean, nobody wants to have surgery. Before we get to that stage are there any other treatments that we might want to consider ahead of time? 

Dr. Desai: Yeah, so when a patient has exhausted physical therapy with a pelvic or licensed physical therapist and Kegel exercises, a lot of times we'll discuss something known as a condom catheter or an external catheter.

So that's safe in the sense that that's not going to lead to any increased infection risk that is often associated with a permanent indwelling catheter. And that's something that you can wear all the time and that needs to be changed out daily. Alternatively, there's something known as a Cunningham clamp, which is available through any medical supply store or even online, and that is something is, it's a padded clamp that you would wear on the shaft of your penis at a regular basis.

However, one of the things that the Cunningham clamp can cause is some discomfort. Number two, it can still not make you completely dry as you might still leak despite wearing that clamp. And so, it's something that many patients don't want as a long-term solution, especially if they're more vibrant and younger.

And then one other unique situation is sometimes men after prostate cancer treatment will have sexual dysfunction or erectile dysfunction where they'll need a prosthetic surgery such as a penile implant. And using that in the setting of a Cunningham clamp does not really work due to side effects. And so that's a small subset of men, but again, something to keep in mind that it's just not one shoe fits all. 

Bruce Kassover: Well, good to hear that there are options, but I suppose that, you know, there, the surgery exists for a reason. So if you do find that surgery is the right choice, what sort of procedures would be done? 

Dr. Desai: Yeah, there's two main surgical options. One is known as a male sling, you know, offered by two different companies that manufacture it. And then another option is known as an artificial urinary sphincter. And there's only one company commercially available that is offering it in the United States now. Both procedures are great procedures.

Now, the male swing is less invasive. However, if you're leaking more than a certain amount during a day, then that's not going to be a great option for you. And so, what do I mean by a certain amount? Typically, what we use is two pads per day. Now if you're using two thick pads a day, we might want to lean into the sphincter, but if it's two lighter pads, or if those two pads are not getting fully soaked, then a sling may be a good option.

Then one thing that we haven't talked about too much, but if you've had radiation done, then a sling is not going to be a good option, and you really need to consider a sphincter. 

Bruce Kassover: You know, that's a good point. What, tell us a little bit about radiation as an alternative to surgical treatment for prostate cancer.

Dr. Desai: Yeah, so the radiation I mentioned initially was radiation that you may have done after your prostate is removed for initial treatment of prostate cancer or initial management of prostate cancer. Radiation as an adjuvant or salvage setting is done in two forms, right? One is you had an aggressive form of prostate cancer when it was removed based on staging or based on overall pathology, and so you might have to have radiation done, and that makes it challenging to do a sling because the tissue has changed in such a manner where the sling is not going to help anchor the urethra, which is the urine channel where you urinate out of, in a proper anatomic position to have the sling be affected. 

Additionally, radiation, as you were hinting at Bruce, can be done as a primary form of treatment for prostate cancer and those patients very rarely – and I can only, I can't think of any experience personally in my 16 years of doing this where I've offered a sling or a sphincter on a patient who just had radiation alone for prostate cancer. 

Bruce Kassover: So it sounds like if radiation is the right treatment, you may wind up being in a better situation than compared to people who have a surgical procedure then.

Dr. Desai: Well, there's different side effects for radiation. So I do want to kind of caution our listeners to understand that radiation is not free of side effects. You know, it can definitely cause urgency and frequency of urination. Something known as urge continence, which is a very big thing that many of our listeners tuning in will be aware of.

Additionally, it can cause other side effects. It can impact other organs like the bowels. It can cause colitis and disruption of the bowel that can additionally cause scar tissue in the urethra, which is another issue known as urethral stricture disease among a host of other things. So radiation is not free of side effects, but it typically will not cause leakage of urine when you cough, sneeze or with activity.

Bruce Kassover: All of this sounds like it's, you know, it sounds like. The medical establishment today has pretty good methods for taking care of people who present with prostate cancer. I'm wondering though, how do I get in front of a physician in the first place? What signs should I be looking for if I'm concerned that prostate cancer may be something I need to be looking up?

Dr. Desai: So first and foremost, I think early screening and detection is important. There's definitely been some debate over the last decade on this topic of prostate cancer screening, but I think uniformly some of that debate had been rectified and most providers this day and age do recommend prostate cancer screening for all healthy men.

You know, definitely in the urological community, we recommend a baseline PSA, which stands for prostatic specific antigen, which is simply a blood test that can be done as part of any routine blood panel that you're getting done with your primary, your cholesterol and other labs. They can simply add that on, that I typically would recommend for all men at the age of 45 as a baseline.

Bruce Kassover: That sounds great. I love simple blood tests. It sounds like a nice alternative to a lot of the other sorts of testing! 

Now, you've mentioned side effects and some of those are probably a surprise to people, but I think that a lot of the treatments you've been talking about are probably a surprise to people, and I'm wondering if you have any thoughts about why so much of this is probably new information or strange information to a lot of our listeners. 

Dr. Desai: Yeah, I think one of the biggest reasons that patients may be unaware of some of the side effects of their treatment or kind of where to turn. After they have side effects from prostate cancer treatment is that many urologists don't perform the procedures that are needed to help them regain their quality of life and restore, simply put, their function.

And overall, about 50% of the prosthetic urology procedures – and so that encompasses male slings and an artificial urinary sphincter – is done by only 1% of practicing urologists, and that comes down to about 1400 urologists in the entire country. And so that's a very small subset. And so really, patients may not be aware of who's able to offer them a solution because many of the urologists they may be seeing in their community or even as a referral may not be offering these procedures.

And so, I offer patients… self-education is always key. Talking to other patients who've undergone certain treatments. You know, there are cancer resource societies, you know, there's a great one locally known as Living Well. They have, definitely, branches. That's a great option. Or the Cancer Support Resource Center, I think is another one. And then Wellness House as well. 

And so, I think those are great avenues to turn. And then I think really you know, there's some great information through some of the industries out there that offer these procedures, and I think those have great information and providers who do higher volume of these surgeries. And that could be a great avenue for patients to further get educated and find a provider that would be able to provide them a solution. 

Bruce Kassover: Tell me if I'm mistaken, but I think that there's another really good resource that's out there, and I think it's you. You have been building out a YouTube channel where people can come and hear from you directly. Is that right? 

Dr. Desai: That is correct. No, thanks Bruce for bringing that up. You know, I do have a YouTube channel that's really in its infancy. It's really my last name, Desai. So it's at D E S A I U R O on YouTube. And, and my, and my focus there is really creating one- to two-minute videos that really educate patients on issues such as urinary incontinence, prostate cancer, survivorship, and then another big issue is male sexual dysfunction. So again, a great avenue and definitely links on my channel to some of these other societies. 

Bruce Kassover: So that's at DesaiURO, would that be D-E-S-A-I-U-R-O? Is that correct?

Dr. Desai: Correct. Correct. 

Bruce Kassover: Well, as you know, this is life without Leaks. And one of the things we always like to ask our guests before we're done, before we wrap everything up is to see if they would share with us one little hint, tip strategy, bit of advice to live a life without leaks. So maybe you have one you could share with us now…

Dr. Desai: One tip I'd like to leave our listeners with is something that I share with all of my patients is that you're not alone. There's an option for you to regain your control. Restore your function and be able to live life to the fullest. And so, incontinence or leakage of urine does not have to define you, and you are able to overcome it, and there is a solution out there for you. And I definitely encourage patients to seek out a licensed provider who specializes in that treatment. 

Bruce Kassover: Well, that is outstanding advice. So, thank you Dr. Desai. I really appreciate you joining us today. 

Dr. Desai: Thank you, Bruce and Sarah, for giving me the opportunity to educate our listeners on a very important topic of prostate cancer, survivorship and incontinence, which is very near and dear to my heart.

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin MacLeod and can be found online at incompetech.com. More information about NAFC is available online at NAFC.org.