Managing Incontinence After Radiation Treatment for Prostate Cancer

With all there is to think about when getting treated for prostate cancer, the idea of incontinence might not be high on your list. But if you're undergoing radiation or surgery, there's a good chance it will be. Incontinence is remarkably common for men following these treatments, but there are things you can do to manage your symptoms and return to more normal function. Today's guest is a patient who's gone through it all firsthand, and he's here to share what he's learned to help make your own care journey a little easier.

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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 great to be here. 

Bruce Kassover: Yeah, I'm excited because today we're going to be talking with Dave, who is a patient who is going to share with us his prostate cancer journey about, um, how he discovered that he had the condition and what he did to, to treat it and how he's doing today. So Dave, thank you for joining us today. 

David Lehman: Well, thank you Bruce. And I'm pleased to be able to share my experience with, uh, our friends who may be, uh, watching this podcast. 

Bruce Kassover: Yeah, it's unfortunate that you had to go through this experience to be able to share it, but we do really appreciate the fact because this is a condition that a lot of men have to face, and a lot of men aren't expecting that they're going to have to face it. And a lot of what happens when you, you, you find that you have prostate cancer and the treatments and the aftermath comes as a surprise to people. So I hope that there's a lot that they can learn from this.

But before we even get going, maybe you want to just tell us a little bit about yourself, who you are, your background and you know, your life in general before you discovered that you had this condition.

David Lehman: Well certainly. Thank you. I'm retired. I spent a career in medical practice management; that was accidental. I was in public accounting as a CPA, auditor, taxes and stuff with number of different clients and industries. And then I picked up a new client, which was a pathology practice. And it was taking more and more of my time, and I ended up taking a full-time position with that practice.

While I was doing that, I decided to do a law degree on the side, part-time, not that I wanted to practice as an attorney, but to just to have one more tool in my toolbox. After I completed that, then I ended up in anesthesia practice management, and that was where the bulk of my career was. I do have a, although I'm not trained in healthcare, I do have a pretty decent understanding about pathology and, and anesthesia.

And one of the doctors that I had worked with and related to my, what I was doing was a urologist who I had grown to be friends with over the many years and had referred patients to him, you know, friends who had, you know, maybe a kidney stone or something like that. And including my brother, who like 10 years ago, ended up with prostate cancer and I said, you need to go see this guy.

And he ended up going with him and he did have the cancer and did the radiation and it was successful. However, because I was older than him, he kinda started following me to, you know, just to be on the watch for cancer, you know, from the familial aspect or potentially familial aspect of prostate cancer.

And, oh, about eight or 10 years ago or so, I had prostatitis and with an elevated PSA. Which eventually was controlled. But he ended up doing a biopsy and there was some caution but no cancer at that point, and I continued on a annual basis with him, and doing the PSAs and stuff, which were, you know, fairly within normal limits until the fall of '23, and it was elevated and that had some concern. And by that point they had a new process where you could do an MRI and match that with a biopsy. And that gives much better information in terms of how to approach, you know, a cancer situation. And so working with my urologist and his partner and two independent radiation oncologists, it was determined the best approach for my situation would be going the radiation route. As any listeners would know, there's many tools that a pathologist could do, including watchful waiting, essentially nothing. They could do the surgery, they could do brachytherapy, you could do the radiation.

And I think maybe there's a couple other things. There's a freezing thing, I think a cryo... cryosurgery that I've heard is some too. But in analyzing it all, all four doctors for me recommended the radiation, largely because I was in the range where it's highly treatable. It's A little bit more than doing nothing, watchful waiting, based on my age, but it certainly was not a highly serious thing where maybe the removal would be best. Because you certainly want to do something so it doesn't metastasize and then you end up with a worse problem.

So this February of '24, did the 45 days of radiation, which becomes almost like a job. You know, you go in every day, you need to drink a lot of fluid beforehand because for the radiation to be the most effective, you need to have the bladder full.

Now that, of course, makes for an interesting situation 'cause it was a 30 minute drive to the facility, so you gotta be drinking a lot and then you gotta wait for your turn to get sat by the machine.

They don't tell you that much beforehand, you know, about the, you know, potential side effects, but I noticed that, you know, every week when you meet with the nurse and or the doctor, they ask if you have any side effects with respect to urinary or bowel or anything else. And I was noticing urgency, with the urine. Of course, could expect that when you're drinking a lot of fluids and you're supposed to continue drinking alot during the day; it's supposed to help reduce the irritant that can affect, you know, the urethra, the bladder and, around, also for bowel movements.

And then I was experiencing some urgent accidents and an occasional diarrhea, and so I decided to start wearing pull-ups to be safe. And the nurse was totally supportive of that. I was surprised that they did not mention it that much beforehand, but they certainly must expect it because they were asking it each week.

I wrapped up the radiation good . The PSAs, it have been low the past year. Uh, the, uh, incontinence was decreasing, to relatively infrequent. Some, you know, of course, you still have to continue drinking the heavy fluids, water during the day and stuff.

Some night issues. Then, number of months ago I ended up with some swelling in my right testicular area and I thought, well, that's kind of weird, but I noticed I was kind of sluggish and, wasn't getting the yard work done as quick as I would've liked or that my wife was expecting.

And then I finally, you know, confessed to her what the situation was and I said I was planning on calling the urologist the next day and she said, don't wait. And we were in the middle of a movie, a musical theater production and it was at the break. And she said, text him now. So I texted him what the situation was and he said, come into my office tomorrow morning.

So, the next day was a Monday, and I just showed up without an appointment and he diagnosed it right away. This epididymis... itis. Which is the epididymus is the tube along the testicle. And it can sometimes get infected. If you're a young man, it's most likely an STD. Fortunately, that wasn't my situation, but it probably was, he felt, the backflow of urine and that can happen in older men. It can happen if you've got prostate issue or prostatitis or something like that. And so he put me on, antibiotic and, it reduced it some but had not resolved. And so then he did a second antibiotic and that was over the course of a couple months to at least anatomically get it back to normal.

So that's where I am right now, and I'll be going back, I think in another week or two for a PSA update, and hopefully that will remain in the very low score. 

Bruce Kassover: So what is the radiation process like? Is it painful?

David Lehman: That's a good question . It is not painful at all . You may be scheduled anywhere from 12 visits up to 45 visits. And there's all sorts of calculus. It's done usually by a physics person who works with the radiation oncologist to calculate out exactly what and where, and the type of dosage that you're going to need. Doing more days, then you can use a little bit lower dosage and that creates a little less issues and havoc and the other areas nearby where they're trying to treat the cancer. The higher dosages can have perhaps greater side effects. So I think what they did for me was stretch it out and have that be a little safer, although then it causes you to make more trips. But once, it goes quickly and once it's done. But you're in for anywhere from 30 to 45 minutes once you walk in the door to when you walk out, and you go in, you lie down on the table, they have you, pull your pants down, but they're not really looking and they put a little sheet over your private areas and, you, they make sure that you're lined up. And there's three lasers because you have little tattoos on you and that makes sure that you're in the exact spot at any time, and they'll adjust a bit accordingly.

And then they do take an ultrasound picture so that it all is checked. And there's also significant computer programs and functions that they, you verify that you are you and that you're not somebody else. And so if you get your personal menu of what's getting zapped and how strong it is. And they, it takes, you know, maybe five to seven minutes as the machine rotates around and it gets it from different angles, and you obviously want to hold still.

They could tell if you're going to like cough or something and they don't push the button till you're back, still. And then they'll say, "Okay, all done." And you get up and usually you run to the bathroom afterwards and then head out. 

Bruce Kassover: And that's, and you get a tattoo, which is cool. 

David Lehman: Well , They're little tiny red dots that, you can hardly, you can hardly see 'em, so... 

Bruce Kassover: I thought you'd get a big panther or something. That would be awesome. 

David Lehman: Oh yeah. Maybe the next time. 

Bruce Kassover: Hopefully there's no next time. So how do you feel moving forward? What do you think your prognosis looks like then? 

David Lehman: Well, I would say, differentiating this from, as I've read more , if you have the total prostate removal, you can have, you know, potentially a lot more dysfunction and you're probably worse off in the beginning.

You need to do your pelvic exercises and stuff, but you're going to more probably be in a diaper because you're not going to have any control at all versus being able to use a pull-up or, or something like that. And then that'll gradually get better. For my situation, the incontinence was more infrequent than, than regular. And it, you know, could vary depending on, you know, am I drinking enough fluids? Almost all medical professionals, you know, my internist as well as the urologist and stuff say you need to drink plenty of fluids because that reduces the irritants, you know, that can cause the incontinence. So that all kind of makes sense.

So as long as it doesn't get worse and, you know, gradually continues to decrease, then I'll be fine. It doesn't really interrupt my daily life or anything. When on, you know, our trip that I mentioned before, the start of the podcast and had no bad experiences, but I was protected from any embarrassment if I would have.

Bruce Kassover: It's really interesting because, you know, when we've spoken with, with patients before who've had prostate removal surgery, then, you know, incontinence is, they say is something that that's going to happen to virtually every man who, who experiences it. It's just that it sort of goes hand in hand. But we have not had a lot of patient conversations about incontinence associated with radiation treatment.

So it's really interesting and enlightening to hear the sort of experience you had. And I'm wondering, were you, you said that it was sort of, it came as a bit of a surprise to you even though the questions that you were asked sort of, made you think that yeah, they were expecting that this was a real possibility. Is that were you sort of really taken by surprise? 

David Lehman: Yes. There wasn't that much, you know, given in advance , but I think that it occurs with some greater frequency than what, you know, they generally tell in advance. Now is that because they much rather have the person get the radiation, take care of the cancer, and be aware of some, you know, have some side effects, but the side effects are better than having a metastasis?

That certainly is a better result, and that's the way I looked at it. But when I read some of the medical journals and reporting and of course, you know, it's kind of hard to tell exactly, you know, how accurate, you know, reporting can be from patients or how the information is collected, whether it's in surveys or you know, the nurses, you know, compiling data or something like that.

There was one England report that showed a, you know, for on the radiation there sometimes could be as high as maybe a 40% rate of men who experienced some incontinence after the radiation. Certainly in other things I've read it's, you know, maybe closer to 10%. Most of it will subside as the farther away you get from the radiation.

But there'll still be some percentage that seems to be a little longer lasting with a few, going beyond a year or so. I think mine stretched out further because I happened to get the unrelated infection that causes the exact same symptoms.

So I think it's a combination of you don't want to, you need to give patients, you know, appropriate notice of, you know, all the major things, and yet, you know, you can't hit 'em with everything or they'd be afraid to have any procedure done.

And anytime you do a procedure, even if it's a blood draw, there's always a risk of some unintended consequence. So for me it was still a, you know, decent trade off. 

Bruce Kassover: I can imagine. And certainly when the doctor starts talking to you about cancer, that it's probably hard to keep everything in your mind anyway. So, you know, adding on, "Oh, and then there's this possibility of this and the possibility of that," there's just a lot of information to hold onto. So it's not a surprise, to hear you describe that. Now, i'm also wondering, you talked a little bit about, we talked about how you really got some benefit out of using absorbent products. But you also mentioned in passing something about pelvic floor exercises, and I'm wondering if you can tell us a little bit about whether or not you've been able to sort of keep a routine of those faithfully. And if so, if it looks like it's had any benefit for you as well.

David Lehman: I did do the Kegels exercises during the radiation treatments; it seemed like a good idea at the time. I think I kind of gradually got away from that. I think it's, they're more useful during the post radical period for a patient than for the radiation patient. But, I think , you know, that should be, you know, it probably doesn't hurt to do 'em, but let the doctor and the nurse recommend what's best for each particular patient's case. Certainly no harm in doing them, I don't think. But, I probably could have done it, done it more, but I should probably exercise more too, so... 

Bruce Kassover: Yeah, you're not the only person who said that, that's for sure. So Dave, you know, I want to ask you a bit of a personal question also, so apologies, but can you tell us, did your procedure, your treatment, was there any, effect on, on sexual function or anything, you know, related to intimacy that might be worth, you know, making other potential patients aware of?

David Lehman: Yes. That certainly does come with it and, couple months after the radiation had been completed , I was discussing with the urologist, both the, erection aspects and the incontinence aspects. And so he put me on three meds. I didn't Start 'em all right away 'cause if you had a reaction and they started all three at the same time, how would you know which one, you know, was disagreeing with you maybe?

So there's the Sildenafil, which is kind of a Viagra equivalent to help with the intimacy aspect, and then also Finasteride and Tamsulosin. I'm pronouncing that correctly.

So, those two, and one ironically helps, could help with hair growth which I could use a little bit of help on anyways. But, those two together, are supposed to help with the urgency and stuff. It did create a little bit of excitement from the pharmacist people 'cause they got, you know, notices: watch this video would look out for these different side effects and stuff when you're doing in the combination with the, well, the Viagra equivalent. But the doctor uses the same three himself he claims. So, now I guess the assumption would be it hasn't totally eliminated, all the issues, but, you know, would it be worse if I wasn't doing, any meds? You know, that's always the possibility too. And of course with the prostate sustaining all of the radiation and stuff, you don't get as much production of the ejaculate that would, would go along. So that's going to be, you know, different, but , yes, I deal with that, you know, but, you know, it's very tolerable. 

Bruce Kassover: Well, that brings up an even more important question and you know, we we're talking about some things that are very hard for a lot of people to talk about.

We're talking about things like sexual function and incontinence and, you know, all sorts in pelvic health issues, things that people, don't just want to talk about, but really, you know, are related directly to their sense of self. And I'm wondering, can you talk a little bit about your mental health as you've gone through the whole process and how you manage to sustain yourself from a mental aspect as you've gone through things?

David Lehman: Yeah. I think that's a, good question to ask. And I think in part, I've been, you know, to me it was almost like a interesting learning experience. I've had two or three rather unusual medical events over my life. One was a, this was back in the early nineties. I had a benign vascularized, tumor on a kidney that spontaneously just bled out. You know, I thought like I had a back spasm or something like that, and it turned out it was a heavily vascularized growth that caused it to bleed. Fortunately, it kind of filled up the compartment there. You know, within our body there's different compartments, which is a good thing because then you don't just, the bleeding eventually stopped, but they had to go in and take it out. And fortunately that was negative, but it was quite an experience of having to get units of blood and having a a surgery then and stuff. And then a couple of years later I actually observed the surgery and it was quite fascinating if you ever had the opportunity to, you know, be in an OR where there's a, you know, this wasn't done laparoscopically. It's, you know, totally opened and the kidney's there, you could see the lung, you see the arteries, and in fact, I was standing in the corner in the surgeon and said, no, come on, look over my shoulder. And it was fascinating as he excised the tumor.

And then he folded the kidney up like a book and stitched it closed, sent the specimen to pathology. And so then I knew exactly , you know, what I had gone through with that then I didn't really have anything, else that significant until this, but with my brother having had his radiation and prostate, you know, I kind of knew somewhat what I was getting into. You know, once you do it, you find out how many other friends, or friends of friends that have gone through the same thing. And I don't think, you know, what I went through mentally was any worse than, you know, other people had it a lot harder with other significant comorbidity issues and stuff.

So, I had the advantage of, you know, strong family, supportive wife and kids and stuff. I didn't advertise what I had, but I didn't keep it a secret too and, you know, shared with my Sunday school class that I teach. And so, collectively, you know, it's your doctors and professionals and family and friends to get through the things.

Bruce Kassover: I'm glad to hear that you had that perspective and that sort of helped you manage, and I also guess that, you know, being somebody who worked so closely with, you know, with everybody in the medical field, probably made you a little more comfortable with some of the things that, that you were experiencing also.

But I'm wondering now, one of the things that we always like to leave our listeners with is a little hint or a tip or a bit of advice to help them live a life without leaks. And, you know, you, you certainly have a wealth of knowledge that you've earned -not easily -over the past few years. I'm wondering if you might have any bit of advice strategy that you can share with our listeners as well? 

David Lehman: Well, you certainly want to what you, while you're going through the radiation process, you want to do everything that they advise you to do, particularly drinking the fluids. I guess I was successful at drinking enough each day because they didn't, postpone zapping me. They actually do a quick ultrasound to make sure you have enough urine in your bladder that the, that day's radiation will be effective. So that's a good thing, I guess. But also, you know, diet and continuing, you know, fluids during the whole day. You know, my, I think my doctor would like me to drink 120 ounces a day of water.

That can be kind of hard to hit. I probably get 90 any anyways with it. And the other thing, you know, I probably could cut off fluids sooner at night than I do, which would help with some of the, either nocturia or enuresis. But, you know, I still want to get my fluids in.

Bruce Kassover: Well, here's hoping for continued improvement for you and, you know, just wish you well in your, your ongoing recovery. And I really want to thank you for sharing your experience and your insight and your advice with everybody who's listening to us today; we have an enormous number of men who visit NAFC.org, who are just beginning their journey, who know nothing about what lies ahead for them, and your advice today is really going to be illuminating. So, so thank you for sharing with us.

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.