Life After Prostate Surgery

A lot of men who are facing the prospect of prostate removal due to cancer have no idea that incontinence is an almost inevitable result of the procedure. For most men, leaking resolves itself in a few months to a year, but for some men, it can persist. Sexual dysfunction is another common side effect that many men need to navigate post-surgery.

Today we're talking with Dr. Peter Hill, a chiropractor in Weston, Massachusetts, who's experienced this firsthand. He shares his story of recovery from prostate cancer surgery and how he learned to manage the leaking, sexual issues and emotional challenges that he faced. It's a remarkably open, honest and enlightening discuss that all men should listen to.

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Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
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Transcript

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 today is Steve Gregg, the Executive Director of the National Association for Continence. Welcome, Steve. 

Steve Gregg: Thank you, Bruce. Good to be here. Looking forward to this great conversation today. 

Bruce Kassover: Yeah, this is going to be a good one because we're speaking with a patient who's had experience with incontinence following prostate cancer, which is an incredibly common problem that a lot of people aren't really aware about. 

Now we're going to be talking with Dr. Peter G. Hill. He's a chiropractor who practices in Weston, Massachusetts. And before we even get going, though, I do want to make sure that everybody understands that this is not a paid endorsement. We are going to be talking about some products to help manage incontinence, but this is purely Dr. Hill offering to share his experience really generously in order to help other men who find themselves in the same situation. So with that being said, I'd like to welcome Dr. Peter G. Hill. Thank you for joining us. 

Dr. Hill: My pleasure. Thank you. 

Bruce Kassover: Excellent. Now, I understand that you are a chiropractor who's practicing out in Weston, Massachusetts, just a little bit outside of Boston. So maybe you can tell us a little bit, a little bit about your background and you know, just who you are, you know, some of the things that make you, you.

Dr. Hill: Well, first of all, I grew up in New York city. I grew up in Rego Park, Forest Hills, Queens. I used to go to the U. S. Tennis Open all the time, so I was very happy when watching Coco Gauff the other day. 

Bruce Kassover: That was exciting.

Dr. Hill: And I guess to explain why I became a chiropractor, my mother is no longer alive today. She lived to be 92 years old, but when I was younger, around 13 years of age, she had leukemia and she was on chemotherapy for 14 years. Luckily, she didn't complain very much about being on chemo, but I felt that if I can help people naturally, that's why I became a chiropractor. And then one of my best friends who sadly I lost to COVID about two years ago, he was a, went to chiropractor school first.

He said, “Peter, why don't you become a chiropractor? You'll love it.” And then he moved up to Massachusetts and he said there are good insurance laws and close to ski country. And so, lo and behold, I followed him up here and, and opened my practice actually in the South end of Boston where I practiced for 25 years. Then eventually, I got divorced, that a lot of people do in this country, and I got tired of sitting on the Mass pike, and I opened my practice in my home in Weston, where I've practiced for the past like, 13 years. 

Bruce Kassover: Well that’s outstanding. So now, so you spent a lot of time skiing there while you were up there?

Dr. Hill: I can call myself a ski bum. I'm a little bit spoiled when it comes to skiing. I've skied a lot of places in the world. I've got the Icon Pass, and this year I'm going to be going to Aspen. 

Bruce Kassover: Oh, very nice. Very, very nice. So now, that sounds like all sorts of good stuff, but tell me about this diagnosis that you got that sort of led you on the path to being on the podcast today.

Dr. Hill: About six, seven years ago, when I moved from Boston out to the suburbs, I changed my primary care doctors and my doctor in Boston. I had never examined my prostate and then I went to my new doctor who's a female doctor. And I told her that I've never had my prostate examined. She goes, “Well, we're going to do it.”

So she examined my prostate and she goes, “You know, I think I feel something. I'm going to send you to your urologist.” So I went to the urologist and he goes, “Yeah, we, I feel something, we got to do a biopsy.” So I did a biopsy, which is not one of the most pleasant experiences I've ever had. They do something called 12 cores with guided ultrasound.

And it came back that I had what's called Gleason 6. So it was 3 plus 3. And Gleason 3 plus 3 is, they believe in doing what's called “active surveillance.” So I did active surveillance for a year. Then I went back the following year, had another biopsy. And it came back as Gleason 3 plus 4, which means I had Gleason 7.

When they, they claim with Gleason 7 that you have to do something. So I went around and I listened to the various doctors and probably was, probably went a little too quick from, hindsight's 20-20, but you know, they talk about seeds, they talk about radiation, they talk about surgery, and there is a whole gamut of, like, choices. And it's very difficult. I did get my slides originally done by Mass General. Then I had the slides sent to Dana Farber where they confirmed that it is Gleason 7 and that I need to do something. I ended up having a surgery five years ago at Mass General Hospital. It'll be five years in December.

Bruce Kassover: Wow. So before we even talk about your surgery, I'm wondering, can you tell us a little bit about your sort of emotional state? How were you able to handle all of, well, the diagnosis and the uncertainty and all of the different sorts of approaches that they were talking about? How did you manage to go through that?

Dr. Hill: It's really, it's overwhelming. It's confusing because you know nothing about it and there are all these different choices, high frequency ultrasound, there's, I think there's something, a “gold,” I mean, there's so many different choices, knowing what's right for you is, I think, one of the most difficult things that when I look online, a lot of people also have a hard time with, there's should you do robotic, should you do open surgery, which is what I had, or these other choices, and it's almost like you're taking a dart and you're throwing it and seeing where it lands.

It's, I'm not sure I did the right choice. I'm not sure others make the right choice. I mean, there, when people do radiation, they end up sometimes having to take Lupron, which I understand has tremendous side effects. I don't have to take anything subsequent. My PSA has remained low. The funny thing about my prostate cancer diagnosis is that my PSA was normal. My PSA was 2.2. My ultrasound was also diagnosed as normal, but my slides were diagnosed as abnormal. So, to this day, I'm not 100 percent sure I really needed the surgery. I could have done active surveillance longer. It's, it's really, it's very confusing and I, honest to God, I don't know the right answer for anybody.

Steve Gregg: So Dr. Hill, you are in a place that has really outstanding medical personnel. 

Dr. Hill: Yes. 

Steve Gregg: You know, to be honest, one hypothesized that if I have cancer, those would be the places that would provide the best care possible. Did they help you understand sort of all the options or are they just so knowledgeable that it's hard to explain all of the ramifications? 

Dr. Hill: As far as the explanations, you know, I was basically said, you know, I was recommended a surgeon that, he's the top, and I went to him and he said, “Well, you should speak to the radiologist and the oncologist.” It's like, it's like the fog of war. It's, it's sort of like, overwhelming, and here I am, someone with a lot of medical knowledge and I understand a lot of things, but even though having all this medical knowledge, it's still the fog of war.

Steve Gregg: It must be very difficult. We have heard in other places. The tremendous need for what we call translation, you know, so Dr. X says this and then people go, “But what does that mean?” 

Dr. Hill: You know, I did, I did speak to the Prostate Cancer Foundation and they had recommended, I think my slides be sent to Atlanta. I think it was Atlanta. And unfortunately, this one doctor, I didn't do it, which I regret that I didn't do it. I think you have to pursue a lot of options. 

I have a patient that was diagnosed recently about a year or so ago with prostate cancer and he found this doctor in Florida who did this new procedure, which basically allows him to not have any of the side effects that I have, these that I had initially, and I still have some, the sexual dysfunction and the leakage issues. So he found a guy in Florida who does this new procedure. I think it's using ultrasound. There's just so many options. I mean, if I had to do it all over again, I'd probably go to this doctor in Florida and try that because, you know, it's really, after you have surgery or after you have, like, the radiation, it's life altering.

Like, I had no idea, to be honest with you, that you wouldn't ejaculate anymore. And ejaculating is one of the pleasures of having sex. It's really a life change. I'm lucky I have a partner that's very understanding and was understanding with the journey I went through after the surgery and was very patient. But it's, in my opinion, you know, taking your prostate out, taking out almost any organ is life changing. 

Bruce Kassover: So when they were, when you were, you were discussing your options, or discussing the surgery with your physicians, it sounds like they didn't really give you a sense of what some of those after effects might be.

Is that, is that fair to say? 

Dr. Hill: They probably mention it, but they don't, they don't say, you know, “This will really change your life. Let me go through what's going to really happen. Let me explain step-by-step what happens afterwards, what you can expect to have.” I mean, it's, you know, it's the five people in the office, they call you in, he tells you, you know, what's going on.

And it's like a seven-minute conversation. You know, it's almost like being in a car accident. You're like, what happened? There's not much prep time. I mean, I look at my mother's journey in all the chemotherapy and the experimental therapy. I mean, we, with my mother, we had to wear a mask, she, she couldn't get it backward for five years, she had an experimental immunotherapy. They talked about whether she had a bone marrow. My mother, my father rejected it back then because it was too new. But, you know, you're caught in the moment and you have to make a decision. And you don't know what to do.

You know, you hear the “cancer” word. And even though I've read plenty of stuff about active surveillance, when it's your body, you're like, what should you do? 

Bruce Kassover: So you decided to have surgery. And would you say that, would the doctors categorize what you had as a successful procedure then? 

Dr. Hill: Yes, I get checked every six months to get my PSA checked every six months. And I guess just as long as it stays negligible, then it's considered that you're doing very well. 

Bruce Kassover: Well that's good to hear, but it sounds like afterwards you started to see some side effects, or not side effects, but some after effects that were unexpected then. So can you tell us a little bit about what you experienced after the surgery was finished and you started the healing process?

Dr. Hill: So the two aspects that I think are the most challenging afterwards, is that initially afterwards, you can’t have an erection, and it's that's very frustrating at first, and I can go through the whole process what I did to finally get that, which a lot of people don't even realize what you have to do. And the second thing is leakage. 

At the beginning. I leaked an awful lot. Today. I sometimes what's called “dribble.” And I usually when, when I get the dribbling, it could be after passing gas, after if my bladder is full and not realizing it, or I have to move my bowels, there might be leakage. If you cough, if you laugh, I think they call it “stress incontinence.” It happens less and less today, but I still have it. They tell you to do Kegels. I went for physical therapy and they got tested and all this other stuff. But even to this day, occasionally, I'll occasionally dribble. And it's like, it's just really annoying. At the beginning it was more and it would really, like, annoy me when it would just be spontaneous that it would just more than sometimes dribble. And initially after the surgery, it's gotten better, but it's not a hundred percent gone, that occasionally I'll still dribble. 

Bruce Kassover: You said that initially you had more significant leakage. About how long did that last for you? 

Dr. Hill: Not a hundred percent sure. I mean, I used Depends and I wore male diapers for a long time until I discovered the Confitex underpants, male underpants, which were, in my opinion, they're like a godsend because I couldn't stand the using the male diapers and the male pads with different stages.

And you know, I'd go on vacation, I'd bring like 20 pads with me or 30 pads with me in my suitcase. So it was, it was sometimes it was pretty significant at the beginning. It was very, very annoying. And they go, “Oh, do your Kegels.” But some people are lucky, they get dry right away. And other people have what I have, continued dribbling. You know, you'd have to, like when I first, I remember when I first, like recently after my surgery, I would have to like, I went out to dinner one night with my friends and it's about a 25-minute drive on the way to have dinner. I stopped at three different restaurants to go to the bathroom.

It was difficult. I mean, right after the surgery, you know, they. you have the catheter. I went to dinner with my girlfriend holding my catheter to a restaurant in pajamas. I also initially I, you know, they tell you to walk. It was very difficult that initially after the surgery to walk and initially after the surgery, if you coughed, it was like someone took a knife and stabbed you.

It was very, very painful. For the first maybe week or two and you know, I just kept pushing myself to walk and walk and walk and walk further initially after the surgery. 

Bruce Kassover: Yeah, you touched on a couple of things that I wanted to ask you about, but I mean, the first thing is that, yeah, you're talking about how initially you found yourself leaking, you know, really considerably or with a lot of frequency, and for men who are unfamiliar with it, what happens after prostate surgery is that the overwhelming majority, you know, more than 9 out of 10 men will experience leakage. And there's just nothing you can do about it. So everybody who is having prostate surgery or considering prostate surgery really needs to understand that they absolutely will have incontinence following surgery. The difference is that for most men, it tends to resolve itself in, you know, a few months, six months, up to a year, but there is a non-negligible percentage of men who still have incontinence issues that persist, you know, well afterwards. 

You also mentioned that one of the other effects that you experienced was sexual dysfunction, and that's another thing that's not really spoken about a lot when it comes to, to prostate surgery. So maybe you could tell us a little bit about your experiences there as well. 

Dr. Hill: As I said, initially, right afterwards, there was, it's like impossible to get an erection. It just, It's really, really frustrating. And I tried the pump, I tried Viagra. And so I got really frustrated. And a few weeks after I went to the doctor and he said, “Well, let's try this gel.” And they, he took the tip of my penis and like a plunger, like a needle plunger. And he put some gel into my, into the tip of my penis. Well, I hate to tell you. I've never experienced pain like this in my entire life. I literally passed out from the pain in his office. So then I, I finally he suggested I go to this special, like, urology doctor that deals with sexual dysfunction.

So I went to this guy and he said to me, “There’re two options, but you had this reaction to that gel, which is basically a form of something called ‘TriMix.’” Which I couldn't get because I would, he said “You'd have the same issue, but there was something else called ‘BiMix.’” So we tried the BiMix in the office.

They gave me a syringe to give myself an injection into the penis, which is probably one of the most difficult things I've ever done in my life. And it did work, though. I was able to get an erection. So for about a year, I gave myself, before having intercourse with my girlfriend, I gave myself injections with BiMix.

90 percent of the time, it worked. However, I hated doing it every single time, because it's one of the scariest things ever, is to inject your penis. Not having to have an erection I didn't want that either. So I was willing to do it. And so I did it for about a year and studies show that the earlier you start in the TriMix or BiMix, if you can tolerate the TriMix, the earlier that your function will come back.

So I did it for about a year and now all I do is take Viagra on weekends. As of today, I'm able to get an erection, but obviously, after prostate surgery, you can no longer ejaculate. But you are actually able to have intercourse. 

Bruce Kassover: That's really very interesting. And, I mean, I think every step of the way it sounds challenging. I mean, just for, for a lot of men, even discussing with a physician the fact that they're, they are experiencing sexual dysfunction is challenging. I know that you, you know, you've been talking about how you are a very open person who's very, you know, comfortable discussing what other people might find uncomfortable, but I would imagine that even for you, it might've been difficult. Is that, is that fair to say, or are you okay talking about that even?

Dr. Hill: I was, I was okay talking about that, too. I go skiing with this guy, a friend of mine, and he goes, he goes, “I've never met somebody who's more open and willing to discuss than you, that you can; you can talk about anything.” And I can. And I had, you know, I told you I lost my best friend, in February of ‘21 from COVID and we used to, he was my best friend from first grade from Rego Park, Forest Hills, and we literally spoke four or five times a day and nothing was off limits. There was nothing we couldn't discuss. And sometimes I maybe go too far, but. I'm basically an open book. 

Bruce Kassover: Well, I think that that's a lesson that people who are a little more reticent can take away from this is that, look, here's somebody and you can see that he's, you know, alive and well and comfortable talking about it. And you know, it's only changed your life for the better. So I'm glad to hear that and I hope that people take a little leaf from this book and decide that, “You know what, I can talk about it too.” So I do appreciate that, that that means a lot. 

Steve Gregg: Dr. Hill as you were talking to physicians about your prostate condition surgery and surgery options, did any of them provide any kind of information about the subsequent consequences that you've talked about? Right. So did anybody ever say there's, there's a chance you will, or, or more emphatically, you will for sure leak, or there's a good chance there are these kind of symptoms for sexual dysfunction. Did anybody talk about that or did they just focus on, “You have cancer and we need to correct that.” 

Dr. Hill: You know, they may have given me a handout to read. They didn't really concentrate on what's happening afterwards. 

Steve Gregg: Were you still trying to figure out the cancer treatment? 

Dr. Hill: I was trying to figure out the cancer and treatment, whether I really needed surgery or not. It didn't really concentrate on the after effects. It was really concentrated on like, do I have to have surgery? Can I, are there other options? I mean, it's, I sort of rushed it more than I, for a stupid reason, it was like, I was diagnosed, I think, in October, and I had used up my deductible, and so I thought, “Well, now I wouldn't have to pay another $2,500 deductible if I got it before the end of the year,” which was a stupid reason, so I sort of, you know, ran into the surgery just because of a deductible, which is, in my opinion, hindsight is, you can shoot yourself… that maybe I should have taken more time with the decision and evaluated some more, but I didn't.

Bruce Kassover: Well, I think that maybe what you're saying is also a lesson that some of the physicians who are listening to this podcast can take away as well because we do know that that a good number of our listeners are also on the health care practitioner side of things and that, if they make sure to have these conversations in a way that is clear to the patient that these are the sorts of things that they are likely to experience, may experience, can expect to experience, and to help them come up with approaches to manage it when it happens so that things aren't a surprise and things aren't a disappointment all of a sudden in the moment.

So you found yourself trying to manage, so it sounds like you were trying to do some pelvic floor exercises. use absorbing products, but you weren't particularly satisfied with those results. So what did you do then when you were finding that it just wasn't helping you manage the way that you wanted to?

Dr. Hill: I want to just talk about one thing – one of the things I had was, what's called “nerve sparing surgery,” which most people try and have done, is they try and, in the old days, they would just cut the nerves and then you really had incontinence, but now they do what's called “nerve sparing” to hopefully get the nerves to regenerate or to heal 

So what I did is I did a Google search. I was very frustrated… One, I thought it was environmentally not great that all these pads are going into the waste stream. And so I did a Google search and I came across the Confitex male underpants and I ordered some. I was very happy with it. 

And then I emailed them and I said, “You know, if you want, I'd be happy to like do a video for you.” And I did a video for them. They go, “How much money do you want? Because we don't have that much money.” I said, “I don't want anything. I said, I'm doing this because I want to help other guys know about it.” I said, “I don't need any money. I have enough money. I don't I don't need your money, I just want to help people.”

Bruce Kassover: That's really Generous of spirit and we appreciate it and, even more importantly, I think that a lot of the men who are out there listening will appreciate the fact that you're willing to do something that a lot of people are really just uncomfortable with, which is talking about this stuff. I mean, do you find that it's – it sounds like you're pretty comfortable discussing this – did you have to overcome sort of a you know, concerns about embarrassment or anything or are you just one of those rare people who's happy to discuss things that other people aren't always that happy to discuss?

Dr. Hill: I'll go back and talk about my mom. So my mother, who I was very embarrassed, often my mother would, like, meet somebody on the subway and the next thing they'd be over for lunch. My mother would, I'd come home from lunch and there'd be like four teachers over from my school and I'd be hiding. So I sort of got my mother's disease in that I am open, friendly. I'm as friendly with, like, the people, the baggers at the supermarket. Since coming to Massachusetts in 1986, I've met with every single governor in office, except for Mitt Romney, though I met him afterwards, and I have not met with the new governor, though I've been trying to meet with the new governor, Maura Healy. So, I am... sometimes maybe too much of an open book, don't mind sharing anything. I've always been that way. 

Like when I was in chiropractor school, I would lead discussions. I have a two different Facebook pages, one is for divorce, I told you, Divorce and Separated Parents of Massachusetts, and another is Western Mass Daily News, and I, because we lost our newspaper in town. 

So I'm not afraid to talk to people, be open, tell them about my issues, and I'm not ashamed at all. I mean, things happen to people. I think you know, like, when Katie Couric's husband lost from colon cancer, she became a spokesperson for it, and other people have, have done things. So I feel that people need to be educated, and there's no reason, I mean, things happen to us all, and I'm not afraid to discuss what's happened to me.

Bruce Kassover: Well, that's really to our benefit and to the entire audience's benefit. One of the things that we like to say at the National Association for Continence is that “There's no shame in being human.” And that really sounds like it's exactly what you're advocating is that these are real issues that happen to real people all the time.

And the best thing to do about them is to talk about them. And I understand. So you became a really big fan of Confitex reusable leak proof underwear for men. So a lot of people probably haven't even heard the name “Confitex.” Maybe you could tell us a little bit about what these products are and what appeals to you about them.

Dr. Hill: They're wonderful. They're basically underpants with, I guess, a special liner that's absorbent. I mean, I'm a chiropractor. I work on patients during the day. So, if by chance, and it doesn't happen very often, that I do dribble, they don't smell. At the end of the day, I do like everybody else does. I put them in the laundry, I wash them, I dry them, and I reuse them.

They're, they're just they're very convenient. And they're simple. They look like normal underpants. And they're just very easy to use. And it's so much better than adult diapers that you throw away and go into the waste stream and I never feel wet. They just work very well. I can tell you, I'm 100 percent happy with them. It's like the best thing I've found. I recommend anybody, and now they have, I understand they have new ones if you leak a lot that are even more absorbent. Again, they look like regular underpants so it's, you know, you can take your pants off in front of somebody, they would have no idea that you're wearing special underpants.

Bruce Kassover: If I were somebody who has, who's going through similar sorts of issues, how many pairs do you think that a typical person might need, or how many pairs do you find that you use?

Dr. Hill: I probably have like two dozen, but I mean, I use, keep them in my drawer and I pull, I just pull it out and put it on and put it in the wash.

I mean, I have two dozen just because if I go on vacation for 10 days, I want to have a little extra on vacation in case. But other than that, you know, I probably just use like four or five or six a week. I mean, I use one a day, so it doesn't matter. I just pull them out of the drawer.

Bruce Kassover: And I suppose one of the added benefits, you mentioned how that it's a better choice from an environmental perspective because you're not putting all this trash into the waste stream, but I would guess that not having to go shopping for products all the time or having to have them reordered all the time has got to be a nice little plus also, just from a convenience perspective.

Dr. Hill: It's convenient. I mean, they're not inexpensive, the underpants, but in the long run, in my opinion, they're less expensive than buying pants. I mean, they're not cheap. They're not inexpensive. Like if you go to, like, Target or anything like that, then they're more expensive. But I think in the long run, they're less expensive.

Bruce Kassover: But you know, that's an interesting point that one of the things that we talk about a lot when we talk about incontinence products and products to help manage the sort of leakage that you're talking about is that inexpensive may be, in the short term, helpful because, you know, it's better on the budget, but if it doesn't deliver the sort of management that you're looking for, if you stay wet, you stay uncomfortable, then, then you're really not saving anything, are you?

So, yeah, Confitex.com is the place where you can see a full range of the products that they have available to help manage incontinence including the reusable men's underwear that, that you found so effective, but also, other products for men, products for women as well. So it's a really good resource. They are a trusted partner for the National Association for Continence and we only partner with companies who we believe really do offer quality products, great value and really effective, meaningful management solutions for patients with incontinence. So we certainly recommend that, that, that people who are interested do go check them out online. That's CONFITEX.com 

Dr. Hill: And I think it's great that you said it, they do both have men and women and they now have this one for people who leak a lot, which I think is also great that they have that where it's not just for like the dribblers, but also for people who have a little bit larger leakage issues.

Bruce Kassover: Yeah, that’s important. Finding the right product is more than just a matter of finding something that feels comfortable or that fits properly or is, you know, hard to notice when it's under clothing, but also something that actually addresses the level of leakage that you have.

For people with very, you know, moderate and light episodes, it's going to make a big difference than people who need something that's a lot more robust. So now, before we go, Dr. Hill, I'm wondering if you could share if there's just any, any one simple tip, bit of advice, a little bit of wisdom to help people who are interested in living a life without leaks that you might want to share with us.

Dr. Hill: Don't be afraid to talk about it. And having some leakage is not fun, but you just got to roll with the punches. 

Bruce Kassover: Excellent, and that is good advice indeed. I want to thank you for joining us. We really appreciate you sharing your time, sharing your story, and most of all, your real open, honest discussion that really can help other men who are either in your current situation or who are looking at potentially having prostate surgery to better prepare for what might be down the road. So thank you for joining us. 

Dr. Hill: Thank you very much. Have a great day. 

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