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Selecting Your Best Urinary Diversion-For Men

With Dr. Michael Poch

Year: 2023

Selecting the Best Urinary Diversion from a Medical Perspective

Video (23 min) | Transcript (PDF)

The Patient Perspectives on the Different Urinary Diversions

Video (17 min) | Transcript (PDF)

Question and Answer about Diversion Types

Video (27 min) | Transcript (PDF)

Full transcript of Selecting Your Best Urinary Diversion for Men

Stephanie Chisolm:

Welcome to Choosing Your Best Urinary Diversion, a Program for Men featuring Dr. Michael Poch from the Moffitt Cancer Center. I’m going to talk a little bit and then I’m going to turn it over and let Dr. Poch show his slides. I think it’s really important and impactful to go through this process and understand what your options are when your doctor is telling you that bladder removal surgery is going to be in your best interest as far as a treatment. Radical cystectomy is generally considered the standard of care with high grade, non-muscle invasive disease that doesn’t respond to intravesical therapy or muscle invasive disease to remove the cancer and reduce the risk of disease, recurrence or progression.

Urinary diversions help your body to eliminate the urine and it’s often a combination surgery, a very significant surgery, and that choice of urinary diversion is somewhat up to you and based on your lifestyle. So Dr. Poch, would you like to talk a little bit about that in just a minute? Dr. Poch is coming to us from the warm and sunny beaches of Tampa, Florida where he is a urologist at Moffitt Cancer Center. He’s very interested in the health-related quality of life, so I’m sure he will learn something from your questions as well, and what’s important to you, he’s going to be talking about ileal conduits, the neobladder and the Indiana pouch, all of which he’s very well experienced in performing, so he does this surgery on a regular basis. As a urologist, Dr. Poch really knows how to fit the best diversion to the right patient.

I think most patients, and especially the ones that we have on this call tonight, are very happy with the diversions that they have had based on their conversations with their doctors and their lifestyle. I’m also delighted to say that we have three patients on this call. Thomas is on the call, Denver is on the call, and we’ll be introducing Jonathan as well a little bit later on. Dr. Poch, do you want to show your slides and I’m going to turn this over to you?

Dr. Poch:

Sure. Thank you very much, Stephanie and BCAN Group for letting me participate in this very important discussion. Let me see if I can share. As Stephanie already mentioned, the first question when we talk about urinary diversion is really radical cystectomy and who should be getting a radical cystectomy. As Stephanie mentioned, those patients with muscle invasive bladder cancer are typically what we considered to be the standard of care patients who are going to end up having radical cystectomies. Those patients often, if they’ve got reasonable kidney function, should get chemotherapy upfront. There are some alternatives which I’ll talk about on the following slide in terms of chemoradiation. The other group is those patients with non-muscle invasive bladder cancer but high risk bladder cancer that fail in bladder treatments. We talk about failing either BCG or chemotherapy and there’s some novel medications that are coming to market that also may be available.

But if you fail intravesical therapy still with stage one disease, then most of the guidelines recommend proceeding to radical cystectomy. And we have a significant number of patients that we see down in Florida who have significant urinary symptoms, whether it’s overactive bladder, their bladders are really small, they can’t tolerate intravesical therapy, frequency, urgency, previous pelvic radiation causing overactive bladder, and those patients with bladder cancer and significant urinary symptoms should also consider getting radical cystectomy with urinary diversion.

I had mentioned that there are some other options for muscle invasive bladder cancer. I sort of put this together from a panel that I was on previously. You can see we have on the top group here radical cystectomy and on the right-hand side you see trimodal therapy. I don’t know if my screen is blocking that. Then you can see here for those patients that have poor bladder function, irritable bowel disease, previous radiation, diffuse carcinoma in situ, or hydronephrosis that’s seen on CT scan… Hydronephrosis is basically when the kidneys are blocked by tumor. Those patients should undergo radical cystectomy.

There are patients who are candidates for what we call trimodal therapy. Trimodal therapy is aggressive endoscopic resection, so TURBT, followed by chemo and radiation together. Those patients that are very good candidates for trimodal therapy are those patients that are a high surgical risk or those patients that really strongly desire to keep their bladders. Patients that are good candidates for both options are patients with good performance status, T2 disease, which is just muscle invasive and not higher stage locally, and small unifocal tumors, meaning just an isolated tumor located in the bladder.

Stephanie Chisolm:

Dr. Poch, can I just interrupt you for a quick question? What do you mean by what you said, high performance status? What are you looking at when you’re judging somebody for their performance status?

Dr. Poch:

That’s a good question. I think we typically use a couple different sort of checklists when we go through what patient’s performance status is. Some of it is there are other medical problems, so do they have significant heart disease that’s going to make them bad surgical candidates? Are they functional in terms of their [inaudible 00:07:37] coordination, in terms of getting urinary diversions? Are they wheelchair bound? Are they significant smokers and using oxygen? It really depends on some of the other medical factors that are going on that help determine how aggressive one can be about treating their cancer.

Stephanie Chisolm:

Thank you. I think that really helps people understand because those are all factors you use in helping make recommendations then for the patients.

Dr. Poch:

Correct.

Stephanie Chisolm:

Great.

Dr. Poch:

There’s three different urinary diversion types, and I’ll start with what’s probably the most common done nationally in the US, and that is the ileal conduit. The ileal conduit is what we consider to be a non-continent urinary diversion, meaning the urine just continuously drains out of the body. That operation is typically done by, again, removing the bladder and then we take the ureters, which are the tubes that connect the kidney to the bladder and hook them up to a small section of intestine. That section of intestine is then brought out to the abdominal wall and an ostomy appliance is then put on top of that stoma, and then urine just basically continuously drains. Depending upon the size of the stoma and the size of the bag, that bag can hold anywhere between 400 and 500 milliliters of fluid, which is a frequent question that we get.

That operation is relatively straightforward, has been done for a number of years. The benefits of doing this, and we’ll talk about this a little bit on a further slide, are that it requires management, but typically that stomal clients gets changed every five to six days and there’s a spigot at the end of the urinary diversion bag, so that that can be emptied into the toilet fairly easily. This also uses the smallest amount or shortest segment of intestine, so for patients that have had prior intestinal operations or other contraindications for large amount of intestinal use, this is an appropriate use.

The second urinary version that we talk about is an ileal neobladder. Again, this is a picture here you can see, I’ll orient you with my mouse. This is the right colon here. Typically, the way the GI system works is that you swallow food down the esophagus, it goes into the stomach, then it goes into the small intestine, which you can see here, and then it goes into the large intestine/colon all the way around in sort of a question mark down to the rectum and anus. When we do an ileal neobladder, what we’re doing is we’re harvesting about 65 centimeters of the small intestine and we’re reconfiguring that into a reservoir for the urine.

We’re hooking the urine ureter tubes up to that reservoir and then hooking that to the urethra here, and this is done in both males and females. This allows for a continent urinary diversion and what that means is that the patients are not continuously leaking urine or there’s not a continuous exit of urine from the abdomen. This operation does take a little bit longer to do and some people argue that this requires some extra postoperative visits and a little bit of extra care on the initial postoperative setting, which sort of becomes standard in terms of sort of post-op care around three to six months.

The other option for urinary diversion is something called an Indiana pouch. Here in Florida there’s also something called the Florida pouch, or if you’re in Miami it’s called Miami Pouch, so there’s some subtle variations on the theme. But again, here’s the picture of the intestinal tract and you can see the small intestine is here and the Indiana pouch is actually using a portion of the small intestine here that connects to the colon and then a portion of the right colon. This gets folded into a reservoir and rather than being hooked into the urethra, this is brought out to the abdominal wall as a channel. The difference between this and a neobladder is that this is also a continent urinary diversion, so it doesn’t leak, but patients need to catheterize this channel every four to six hours depending upon how much they’re drinking and how much it fills up and empty out via the pouch. So this is a continent diversion, but it’s continent through channel, through the abdominal wall.

Unlike an ileal conduit where patients have continuous drainage of urine, there shouldn’t be continuous drainage of urine from an Indiana pouch. Most patients will put a bandaid or a small gauze on top of the opening in the abdominal wall just to cover it if they’re wearing clothes, et cetera. But I always tell patients for this they definitely need to be carrying around supplies to catheterize if they’re going on a train or plane or just even a day trip. They want to make sure that they’ve got appropriate supplies in order to catheterize their pouch to empty it well. That’s in contradistinction to an ileal conduit where you put on the ostomy appliance every five to six days.

I tried to put together what I thought was a relatively easy sort of graph looking at the different types of diversions and the pros and cons here. You can see starting with the ileal conduit, the pros are that most urologists know how to do that and it’s relatively a straightforward operation and most people are familiar with it. The downside is that you can have some problems with the stoma appliance depending upon the shape of the abdomen and the abdominal wall. If the stoma is not sort of protruding out of the skin, some of them will leak and have some issues. The other thing that sometimes comes up is an issue with body image. Obviously you’ve got an external appliance attached to your body, so whether you can see that through a shirt or whether you feel comfortable taking your shirt off if you want to go swimming, we do a lot of swimming down in Florida, so there can be some body image issues.

There are some contraindications to an ileal conduit, but there are very few, which is why it’s the most common urinary version that’s done. Really, patients with a very, very thick abdominal wall can end up having some problems with their stoma and their ostomies because if you imagine, that intestine has to travel through a really large abdominal wall and so you can end up having some kinking or some other stenosis of that conduit with really thick abdominal walls. But other than that, there are very few contraindications to doing an ileal conduit. The neobladder, on the other hand, has the pros of having good body image and most people are able to void through their urethra, so you’re sort of peeing “naturally.” The cons are that there is a risk of having some incontinence with it, and there’s also a risk of having hypercontinence or what we call as retention, so maybe the neobladder doesn’t empty all the way.

The neobladder also in the initial postoperative periods, we do ask patients to catheterize through the urethra to make sure that it’s functioning and emptying. Usually that is sort of tapered off after patients go through the months of recovery, and people argue that it’s a little bit of a longer recovery, although people are making different technique moves and follow-up care plans that are pretty similar to ileal conduits these days, so I think that that’s a little bit arguable. The contraindications to get an neobladder, there’s a couple. One is that if you have a history of kidney failure or your creatinine, which is a blood test that we use to measure kidney function, is above 2.0, we usually don’t recommend doing continent urinary version, so the reservoir of urine can sort of affect bone health and some other things long term. If you have bad kidney function to start out with, we usually don’t recommend doing either a neobladder or an Indiana pouch.

Some cancers will involve the urethra and if you need to remove the urethra, you obviously can’t use a neobladder or you have nothing for the neobladder to hook up to, so if you need to remove the urethra at the time of your bladder removal, then giving a neobladder is not a great idea. In the middle of the operation, also, we often will check margins of the urethra to make sure that there’s no cancer there. So frequently I’ll tell my patients beforehand if we’re planning to do a neobladder, I say there’s a couple reasons why in the operating room that we wouldn’t be able to do a neobladder. One is that if there’s cancer while we’re checking it and we see cancer at that junction of the prostate or the bladder to the urethra, we’re not going to want to sew a neobladder to cancer.

The other thing is that if patients have poor eye-hand coordination, let’s say they’ve got arthritis, rheumatoid arthritis, and they can’t really have the function to coordinate to catheterize themselves, that can be a challenge and patients aren’t really good candidates for neobladders in those situations. There’s also an argument for patients who’ve had pelvic radiation that they shouldn’t necessarily get neobladders or continent diversions down the pelvis. It really depends on the level of radiation and what the tissues look like. Frequently I’ll tell patients at the time, it’s sort of a game time decision in the operating room, whether we think the pelvic floor is healthy enough to sew a neobladder to, because long term we worry about both incontinence in radiated patients, meaning that the pelvic floor has been radiated and doesn’t have the normal contractions that your pelvic floor would do, and also that the tissues just don’t react well to being sutured. So pelvic radiation I think is a relative contraindication to doing a neobladder.

On the other hand, if you look at Indiana pouch’s benefits again, or you don’t have to wear an ostomy appliance on the outside, so there may be improvements in body image. You don’t have to access the urethra, so some people say, “I don’t want to put a catheter either through my penis,” or “I can’t reach down there” or “I can’t see. I can’t manage the urethra, and therefore it’s easier to evaluate from the abdominal wall.” Indiana patches come with a little bit of their own sort of complications because it’s more unusual way for the urine to be stored. Indiana patches can develop stones. They can also get stenosis or narrowing of the channel because the channel’s much narrower than your conduit channel, so they can get some narrowing of the channel. They can also get infections in the pouch.

Again, there’s this argument about longer recovery. Typically, in my hands when we’re doing neobladders, patients may go home with a catheter, usually they don’t go home with a drain for pouches. Typically, patients will go home with one or two sort of extra abdominal drains, which then get removed sequentially, so it does take a couple more postoperative visits. As I said before, the kidney failure’s a contraindication to any kind of continent diversion. Again, this idea of poor eye-hand coordination, if you can’t put a catheter in, then it’s hard to do a continent diversion. Then if you’ve got a history of inflammatory bowel disease or colon cancer or other malabsorption or chronic diarrheas, typically we don’t want to do Indiana pouches in those scenarios because we worry about chronic diarrhea and long-term malabsorption problems.

That’s sort of the general gist of how I approach this. I typically tell patients though, when we’re doing an evaluation about what kind of urinary diversion somebody should have, it’s usually in a shared decision-making model, which is assessing the patient and what the patient wants and what their needs are and how functional they are and what their really priorities are. Some people have priorities that they want the easiest thing to do, and when I tell them, “Well, what does that mean?” Some people say, well, “It’s peeing like I had a bladder,” in which case a neobladder is easier. Some people would say, “I never want to catheterize myself ever again,” in which case a neobladder’s not a great option. So it’s really an assessment of what the patient’s priorities are in combination with “What are the other medical problems?” And in combination of “What is their cancer sort of leading us to as well?”

One of the things that often comes up when we’re discussing neobladders, because that’s probably the most common type of continent diversion that we do, is people worry about putting catheters in. I always tell men in particular that if standard… your catheter can be uncomfortable, and most of that discomfort actually comes from the prostate. Usually when we do this operation, we remove the bladder with the prostate. Normally the urethra sort of makes a little hook as it passes through the pelvic floor into the prostate, into the bladder. When the prostate and the bladder have been removed, it’s actually that catheterization is much more of a straight shot. Catheterization is actually much easier, at least anecdotally, from what our patients tell us without their prostate in and therefore it’s less scary for them or more comfortable to do sort of routine catheterizations for neobladders. I’ll pause there and see if folks have questions.

Stephanie Chisolm:

We do have a question, actually. “Does pelvic radiation due to year old prostate brachytherapy have an impact generally?”

Dr. Poch:

It does. Brachytherapy tends to be my least favorite form as a surgeon doing operations on bladders because there tends to be a lot of reaction in the pelvis. My favorite analogy, which I think is probably the most appropriate analogy I can come up with, is that standard operations are like sticking your hand in between a Ziploc bag and separating the sides of the Ziploc bag. When patients have been radiated, it’s like somebody takes a hairdryer to the Ziploc bag and sort of melts the two sides together and now you’re trying to separate the sides of the Ziploc bag, so it’s much more challenging. That being said, every patient’s different and everybody reacts differently to radiation. I usually tell patients that feel really strongly about having a neobladder that we’ll do the operation and we’ll see what the pelvic floor looks like, and if the tissues aren’t healthy enough to get a neobladder, then we always have another diversion choice in our back pocket so that nobody’s disappointed and we sort of appropriately plan both mentally and surgically for another option.

Stephanie Chisolm:

Great. How often does that happen, when you think that you’re going to go in and plan to do one diversion, but you find something else and then the patient wakes up in the recovery room with a completely different diversion than the one they were hoping to have? Does it happen often?

Dr. Poch:

No, it doesn’t happen that often. I mean, I would say over the course of my career, having done probably one to two cystectomies per week, maybe less than a dozen over 12 years of doing this now, 11 to 12 years of doing this. I think that some of those are, as I said, for cancer, so there’s a couple cases where we weren’t expecting to see cancer, even though the patients were appropriately sort of evaluated beforehand. There’s been two instances where we actually couldn’t get the neobladder to go down into the pelvis. There’s sometimes the blood supply that supplies the small intestine starts actually up at your breastplate, and so for patients that have really long torsos and have a little bit of extra fat on them, sometimes that blood supply is actually really short.

No matter how you sort of reconfigure the intestines and try to wiggle it down there, sometimes it just won’t go and you don’t want to leave a really large gap because they end up scar tissue and the neobladder doesn’t heal. That’s happened to me twice, again, over the span of about 12 years, so not frequently, if appropriate sort of measures are taken.

Stephanie Chisolm:

Well, that’s really good to know. I know that you do it and you’re very much in tune with what your patients want and what they need. Do you think most urologists that are doing cystectomies really engage in that whole shared decision-making process where they’re really evaluating? Because I hear from some patients sometimes that, “Well, my doctor said this is what they were going to do,” and that they don’t question. Is that something that’s normal that all doctors do, or you think it’s more of a subpopulation of excellent doctors that really involve their patients in that decision?

Dr. Poch:

I mean, one in hope that the patients are getting at least counseled on the options for what their urinary diversions are. It’s hard for me to speak exactly what goes on in the community. I think that thoughtful approach to this, the idea of shared decision-making actually came from a lot of our prostate cancer literature where we’ve got lots of different options to treat prostate cancer. So it’s important to have that discussion with the patient, involve them in those decision-makings because there’s lots of different choices. Some surgeons out there may not be comfortable doing more complex urinary diversions, the continent urinary diversions, and so the backup plan or what they’re familiar with is to do an ileal conduit rather than a continent urinary diversion.

I always tell people that if you’re seeing somebody, you want to make sure that that they’re comfortable doing the operation. You don’t want to put a surgeon in a position where they’re doing something they’re not comfortable with and therefore they may not be offering those types of things. I think it’s always important to seek out a second opinion. If you’re going to go through a major operation, I think it’s always probably wise to seek out a second opinion regardless, just so that you’re comfortable with the decisions that you’re making. I think that answered your question, Stephanie, but…

Stephanie Chisolm:

Yeah, it did. It really did. Again, you’re one of the really nice, wonderful doctors that stopped to ask that patient what’s really impactful for them, and you did a great job of explaining. Before we switch over, and we do have more questions that I’m going to save for the end, so keep dropping your questions in the Q&A box. I kind of wanted to do a little recap and I wanted to show a little animation that BCAN has put together to just kind of summarize, and it might trigger some more questions that you might want to ask the doctor. I’m going to turn this video on. Hang one second. I think I need to stop sharing for one second and make sure you can hear the sound. There we go. All right. Should be able to hear this.

To watch the video, please visit: https://www.youtube.com/watch?v=S2QKwhW8pds

Stephanie Chisolm:

That was just a recap of everything that we did. I’m sure that stimulated a couple more questions. Again, that was just a recap, so let’s start talking to our patients and then Dr. Poch, if you have anything to add to their comments, I think that would be great. I’m going to introduce you to Jonathan, to Tom and to Denver. We’re going to start with Jonathan first. So Jonathan, what type of urinary diversion do you have and what factors led to that option and what was important to you back at the time? Because it’s been a little while for you that you had your bladder removed.

Jonathan:

It’s been almost 13 years. I have an ileal conduit and I don’t really have a very interesting story because my surgeon told me that that’s what we were going to do. He said the other ones… I said, “Well, there’s other things, aren’t they?” He said, “No, they don’t work.” I said, “Okay.” And so I have an ileal conduit. Now, in retrospect, if I had to do it all over again, this is exactly the diversion that I would use, for a lot of reasons. You saw the pros and cons and there aren’t many of either. An ileal conduit is kind of like a Ford F-150 truck. They’re not pretty, but they work, and they just don’t ever break down, so I’ve had really no problems with this and it’s been great.

I mean, of course having no diversion at all, not having bladder cancer would’ve been my preference. But once we cross that bridge, I’m very happy with this. I want to show y’all a little thing here, in case you’re wondering how big the pouch is. It’s that big. It doesn’t protrude. It’s basically invisible to everybody around me. Nobody knows that I have an ileal conduit unless I tell them. Nobody says, “Gee, what’s that funny-looking thing under your shirt?” Or whatever. So that’s what I have.

Stephanie Chisolm:

Right, so your life hasn’t been super impacted by that. You haven’t had to change drastically things that you would do down there in Georgia.

Jonathan:

It’s still hot. No, there’ve been no lifestyle changes other than the lifestyle change that every one of us has, and they advise against picking up heavy objects. I have been advised not to pick up anything over 40 pounds because of the basic hernia that they’ve built into you, they got to keep that muscle sheath open. But at 72 years old, I don’t really want to pick up anything over 40 pounds, so I’m good.

Stephanie Chisolm:

Okay. Well, great. If you have questions for Jonathan, drop them in the chat box there in the Q&A box. Thank you so much. Another Georgian, we’re going to go to Thomas next. Tell us, what kind of urinary diversion do you have and what factors led to that decision? Oh, you’re on mute, Thomas.

Thomas:

There we go.

Stephanie Chisolm:

There you go.

Thomas:

I was diagnosed in 61 and my doctor in Macon gave me two options, either the BCG or he would refer me to a surgeon in Atlanta. My wife was already a patient at MD Anderson, so I elected to go there. The two doctors there, we discussed and I have a neobladder. I’m happy with it. I am right at two years post-op. I was out in Houston in early June. I had my seventh scan. Everything was clear and healthy. I’ve got one more scan to go and it’ll be a two-year period of time and my doctor said I can either come back once every six months or once a year. But at present, I work, I’m very active in my yard. I hunt, I fish, I’m picking up pickleball. Life is getting back to a normal and it’s working. Of course, you have your good days and bad days depending on lifestyle, but so far, so good. I look forward to being 13 years like Jonathan and hope to meet you one day. But with the neobladder, it seemed to fit my lifestyle and my health factors. Very pleased.

Stephanie Chisolm:

Maybe we’ll get both of you to come to the fall summit, which is coming up in Nashville in October and you could all get to meet each other and hopefully Denver will come down as well. Have you made any modifications in your life to fit in the neobladder?

Thomas:

Not really. I have tried to pick up new healthy habits, pickleball is one. My wife played tennis and she had to give tennis up and I’ve decided I was going to pick up pickleball and start that as an activity, just for good exercise and something different to do.

Stephanie Chisolm:

Okay. Well, this is great. Denver, thank you for joining us. Tell us about your diversion and what led you to that decision.

Denver:

Originally I went to my urologist and basically said, “I’m tired of getting up in the middle of the night, but I realize I’m probably just getting older and that’s normal.” He said, “Let’s check out your bladder.” He went in and looked and he said, “Yeah, we’re going to do some more.” So they did the TURBT and he said, “It’s cancer.” With him, I did the six rounds of BCG. After that, they went in again, did more biopsy and he said, “You still have cancer, so we’re going to do surgery.” I said, “Timeout,” because in Toledo I think all they know how to do is the ileal conduit. My sister had gone to Ohio State, The James, with bladder cancer and the BCG worked for her. So I went to her surgeon down there, Dr. Pohar, and he said, “Let’s try a maintenance of three more BCG and see what we come up with.

We did that at The James and he went in and did the TURBT with the blue light and he said, “Everything looks great.” The blue light detects the CIS better and everything else. He said, “Everything looks great.” But when he came back after the biopsy, cancer was still there and it was spreading, it was on the inside of the prostate and into the urethra. By being into the urethra, that pretty much eliminated the neobladder, so I opted for the Indiana pouch, and it is a long surgery, scary how long that surgery can be. Mine was 15 and a half hours, and I’m five years this past Tuesday with my Indiana pouch. I visited with him Tuesday and I am good, no cancer detected at all, so everything is going well.

Couple years after I had the pouch, my wife and I took a trip to Israel, so traveling is not an issue. I was able to be on a 14 and a half hour flight. As long as I have my supplies with me with my catheter and some lube, I’m good to go, and I carry my pocket wherever I go. I work in my shop, I’m mow my lawn, I do exercises, I golf, so life is normal and I love it. I’m really glad I got the Indiana pouch. Now that I have it, I wouldn’t change a thing.

Stephanie Chisolm:

Great. So three different diversions and three different positive experiences. Dr. Poch, do you have any comments or questions for any of these gentlemen?

Dr. Poch:

I guess first I’d like to… I’m just very thankful that you guys are all cancer-free and I think that that’s great news, so I would like to say that. I guess my follow-up question for the panelists would be, what do you wish your doctor had discussed with you prior to choosing the diversion or prior to surgery? Is there things that didn’t come up in those initial conversations that you wish were addressed, be it sexual function or how long the recovery actually is or something like that that you really didn’t get to ask questions about or didn’t think at the time to ask questions about or weren’t brought up?

Jonathan:

Well, I didn’t have any questions because I didn’t see my surgeon but twice before. He was not very open. He’s a great guy and did a great job, but he just didn’t answer many questions, and that’s kind of what led me to where I am now. I just don’t want anybody to go through what I went through, and that’s why I’m a huge advocate of BCAN. I have on my BCAN shirt, as a matter of fact. Stephanie gave me this after 10 years. Yeah, there’s all kind of questions and answers that didn’t occur. I was the most frightened I’ve ever been in my life the night before surgery. I really, really was terrified because I did not know what was going to happen. I didn’t know how long it was going to take. I didn’t know what to expect from the hospital or from… I didn’t know anything.

About that time, my wife and I decided that we were going to have to be our own advocates because there didn’t seem to be much outside help. As a commercial, I looked for help online for years and never found any. After two years, a BCAN member just came across me online and pulled me in. It’s been hugely helpful in terms of not only advice, but in terms of just the comradery. You can’t really understand bladder cancer or after bladder cancer unless you’re talking to somebody who’s done that. I mean, I’ve talked to researchers and stuff like that and I said, “Have any of you guys ever been catheterized?” “No.” “Anybody ever had a TURP?” “No.” “Anybody ever had anything?” They say, “No.” So you feel like you’re kind of out on an island and then you meet other people who’ve done that and been there, and BCAN has just been a tremendous help. I realize that this was not a BCAN commercial that we were in, but I figured while I was here, I’d promote it.

Stephanie Chisolm:

Thomas, you had something?

Thomas:

Well, when I went for the second opinion in Houston, my surgeon there, I had made a laundry list of questions to ask, and my wife asked questions as well. He pretty much covered a very broad spectrum of those, but he also referred us to BCAN and I went online and registered and I received three calls before my second trip to Houston for prepping for chemotherapy and then consultation on my selection. After those calls with advocates, like we are here today, and asking them questions and my wife asked questions as well, it became apparent that I understood what was probably the best option for me if I was truly a candidate for a neobladder. I was 62 at that point in life and I wanted to be made whole again. But I understood that being made whole was not possible, but at least I could function as I once did before.

I would say the surgeon there, the three calls I received from BCAN members and actual patients, and then my own research and question, I knew what I faced, I knew what the outcomes would be and I knew post-op, how my life would be from that point forward. The questions I asked, my wife asked, the answers we got back from the surgeons pretty much covered it. Would I change anything today? No, I wouldn’t. I’m 65, and you know what? At this point in life, if I’m healthy and I have to cath once, here, there, you know what, that’s a small price to pay, and I’m very pleased with where I am health-wise. If I can help others make that choice or at least educate them, that’s my mission. I applaud BCAN for what they did for me with those three men that called me. One was from Ohio, one was from Orange County, California, and the other one was from a Georgian in Atlanta. So, that’s my song, that’s my story.

Stephanie Chisolm:

Well, full disclosure, the three gentlemen on this call today are members of our survivor to survivor volunteer squad, and we do appreciate everything that they do. Denver, do you have anything else to add?

Denver:

When I first went and saw my urologist, I mean, his option was, “Okay, we’re going to do an ileal conduit surgery.” Not knowing even what that was at the time, there was no explanation or anything, so I got a second opinion and I strongly recommend, even if you’re very comfortable with your current doctor, get a second opinion. It doesn’t hurt to get a second opinion whatsoever. When I went to The James, they were very thorough. We did everything that needed to be done. I didn’t know about BCAN, but at one of the preoperative visits there was a pamphlet there and that’s when I found out about BCAN, so I was able to pick it up. In my case, the cancer was moving so rapidly that he bumped other patients and got me into surgery within a few weeks, so I didn’t have a lot of time to contact anything or do a lot of research, but I did as much as I could.

I would just say that second opinion and being comfortable with your doctor is huge. You got to be comfortable with your doctor when he’s going to be the one that’s going to be taking care of you. One thing about Dr. Pohar is they always have a continence nurse that’ll train you to do things, whether it’s with ileal conduit and how to put the bag on or anything, or in my case with the Indiana pouch. There was a nurse there that was going to show me how to catheterize, but Dr. Pohar actually trained me how to catheterize myself. He took the interest in me in showing me how to do that and “Be patient with it and everything will work out,” and it’s been fantastic.

Stephanie Chisolm:

Great. Well, let me go to some questions from the participants. “Typically, how long does one need to use a catheter after neobladder surgery? I know it takes time to train a neobladder and for the person to learn really how to forcefully push that urine out internally.” This is a good question for Dr. Poch, so what’s sort of the average length of time post neobladder surgery that somebody needs to catheterize?

Dr. Poch:

It’s a great question. It’s something that comes up frequently. Normally when we do neobladder, we typically will leave the catheter in for about three weeks, so patients will go home with a catheter. After that three week period, we then remove the catheter and then we ask patients to start cathing and then keep a log, and that log really tells us how well patients are emptying. What we have patients do is basically pee in the toilet and then catheterize afterwards to see how much urine is coming out. Now, it doesn’t have to be after every single catheterization, but we ask them to do it once or twice at least per day. We usually do it for the first month and then we usually then we’ll start either tapering that off or readjusting frequency of catheterization, depending upon what some of those numbers look like. Because if patients are doing great, then we sort of taper that off pretty quickly.

We do often have patients that we don’t see for years. They come back, they get discharged and they still carry pretty large residuals of urine and need to go back and start catheterizing once maybe a week or every other day just to get the neobladder to contract a little bit. There is that risk of if you miss some of those followups, that we don’t get a good sense of “Are you really emptying?” But we try to taper it off after about a month to six weeks depending upon how patients are doing.

Stephanie Chisolm:

There are things that people can do, like staying hydrated to help with any kind of… Again, thinking that the neobladder’s made out of intestines, which typically have mucus and that can clog sometimes. Are there tips that you can offer to patients who have a neobladder to help keep it healthy and keep it flowing when they want it to and when it doesn’t?

Dr. Poch:

Yeah, so I think, as you mentioned, hydration is key. I think that the intestinal diversions and even patients with conduits will see this. They’ll get mucus that sort of gets built up. Over time that usually depletes or decreases. It never goes away altogether, but that mucus puts you at risk for developing stones and can clog and some other issues. It’s always important to stay very well hydrated if you’ve got these urinary diversions. That also helps with the smell, so a lot of patients will have a concentrated urine smell. They say, “Well, I think I’ve got an infection,” when it’s really just really concentrated urine. Some of the malodors and those kinds of things are actually just better treated initially with pretty aggressive hydration.

There are some other dietary things that happen. Sometimes patients who have some milk-based foods will also have to see an increased amount of mucus production from their continent diversions or even conduits. There are some other foods that we’ve had patients come in and tell us, sort of unusual foods that they’ve had, that have initiated an increased production of mucus also. Again, each patient’s a little bit different, but hydration, I think, is key.

Stephanie Chisolm:

Tom, Did you have anything to add?

Thomas:

Hydration is key. I love fruit. It helps. I stay away from asparagus, from the standpoint of smell. But I had my surgery in October, early October. I spent 30 days at Houston until they removed the tubes, came back to Georgia. I went back in November for a followup. I cathed that November, December, January. I cath once a month, just my own desire to do so. Of course, there is mucus production, but the more you drink of water or with lemon, any type of citrus in it, the better off you’re going to be, or I have found that you will dilute it and you’re not faced with the smell or residue as much as you would be without drinking fluids often. Other than that, do I cath every week? No, I just cath once a month, my own routine just as a wellness cath, and very happy with that.

Stephanie Chisolm:

Kind of making sure that any residual urine, as Dr. Poch was explaining, is emptied out, so that’s important. This is good. There’s still a lot that you have to do for maintenance on even the neobladder or anything where you think you’re going back to sort of living a normal life. But let’s talk another question that’s not really related to this particular topic. If upper tract disease is involved and you’re having one kidney removed with no evidence of disease in the remaining kidney, would a neobladder be an option, Dr. Poch? Because the neobladder’s connected with the two ureters from the kidneys.

Dr. Poch:

It’s still an option, but it really depends on what the overall kidney function is going to be. Obviously, yeah, in life you’ve got most patients have two kidneys. If you have to remove one of the kidneys that can affect your overall kidney function. Patients can still be candidates for neobladders, but it really depends on what we think the baseline kidney function is, and if it’s not great to start out with, then we know it’s going to get worse after surgery to remove one of the kidneys, that may sort of hit that tipping point of that creatinine level, which is that blood test to measure kidney function. If we think that that’s going to end up going over 2.0, then we may be a little bit reluctant to do a continent diversion, but it sort of depends on what the baseline kidney function is.

Then nothing is ever identical in life, so sometimes one kidney’s working better than the other kidney, so the kidney with cancer and it actually may not be as functional as the kidney without cancer, so it depends on some of those other factors about how does the function of each individual kidney look, and there’s certain tests that you can do to actually assess how one kidney’s working versus the other as well.

Stephanie Chisolm:

Great. That’s wonderful. I’m sorry, my lights just turned off, so I was just trying to open my shades a little bit, so I’ll put my camera back on. Another question. If somebody had their prostate removed and they didn’t have radiation, not having a prostate, is that an issue if they were going with the neobladder choice? It doesn’t have radiation to cause that scarring, but if you didn’t know where the prostate… Is it different if the prostate’s already been removed?

Dr. Poch:

Yeah, I mean, the operation can be a little bit more technically challenging because you’re just doing an operation in the same area where somebody’s had an operation before. I would counsel patients that there’s always a possibility that the tissues don’t look healthy enough or that urethra doesn’t look healthy enough to attach a neobladder to. I usually tell patients it’s sort of a game time decision in terms of what we think the quality of the tissues will be involved, will the neobladder heal? We more strongly make sure that we have the appropriate second choice for urinary diversion chosen in case we end up in a problem where we can’t do it.

Stephanie Chisolm:

Okay, so you’ve got a plan B in place, so that’s good. In terms of when you’re looking at voiding, emptying your bladder with a neobladder, you’re obviously using different muscles to bear down and empty the bladder. When you’re making a referral maybe to a pelvic floor physical therapist, Dr. Poch, is that what you typically will do to help somebody to learn how to control those muscles, to be able to void through their urethra when they don’t have the same mechanisms, the same urge to go to the bathroom that they would with the neobladder?

Stephanie Chisolm:

We do frequently employ a physical therapist that do pelvic floor therapy. Most of the time it’s not actually, at least in my experience, it’s not for those patients to help them go, but it’s sort of for patients that have some incontinence risk or have some leakage of their pelvic floor and they don’t really understand or can’t get down Kegel exercises, which are those pelvic floor strengthening exercises that you do, typically to try to keep the urine in or maintain urinary control. We typically will have patients sent to physical therapists. They’ll actually do something called biofeedback where they put little sensors in around your pelvic area and to see how well you’re contracting, because you may think you’re doing it right and you’re not. They help determine what muscles you need to contract and try to reteach you how to contract some of your pelvic floor muscles.

Most of the patients that we have who have neobladders and will void either spontaneous or doing a Credé maneuver, which is sort of pushing above your pubic bone to try to help get the urine out. Maybe Thomas can sort of elaborate about his personal experiences. Most of the studies in our patient populations here actually have a pretty good rate of urinary control and emptying. Most of the urinary leakage that happens usually happens at nighttime when the brain falls asleep and the pelvic floor falls asleep together and that’s typically when people end up having some leakage.

Thomas:

Yep.

Stephanie Chisolm:

Just “Yep?” You got anything else, Thomas? Did you go through physical therapy?

Thomas:

I went to a physical therapist and they told me key is your core. They gave me a number of exercises to strengthen my Kegel, do Kegel exercises. During the daytime I’m fine. I void once every three hours. At nighttime, I set my clock for 1:00, 4:00 and 6:00, and I get up and I void at that time. Depending on how much fluids I have had at dinner and after dinner, I may wear Depends at night, just in the event I have have some leakage. But I have learned to control it during the daytime, and working on the evening, but hey, getting up with an alarm clock is not the end of the world. So far, so good in my arena.

Jonathan:

It’s just another advantage of the ileal conduit. I go to bed about… Well, I go to sleep about 7:00, then I get up and go to bed about 11:00 [inaudible 00:56:18]. I just set my alarm for 7:00 and get up at 7:00. When you have the ileal conduit, you don’t have to get up at night at all. You just get to sleep through the night, except for normal old man getting up stuff at 4:00 and wandering around the house. But there’s no need to get up. On a serious note, that helps with the hydration situation. When you have any diversion, there’s an increased opportunity for infections, bladder infections, and the flushing out seems to help a lot. So I can hydrate as much as I want to without any fear of having to over-hydrate and have to go to the bathroom too much.

Stephanie Chisolm:

Yeah. At night, Jonathan, do you use a leg bag? Not a leg bag, I mean a night bag or a bigger container for catching all that urine so you don’t have to worry about that small bag that you held up filling up too much?

Jonathan:

Yeah, you can’t keep your daytime bag on. It’ll fill up too quickly. When I was in the hospital, they gave me a Bard medical bag and that’s just kind of the basic thing, and I just stayed with that. Yeah, you attach it to the bottom of your pouch and just hang it over the edge of the bed. Some people put it in a trash can. There’s all kind of ways to help it. All you have to worry about is turning over too quickly or getting the tube wrapped around your leg, and if you do that, you have a complete mess on your hands. But the people that I talk to that have an ileal conduit all end up sleeping differently, and I’m talking about mentally sleeping. You actually are kind of, even though you’re dead asleep, you have the knowledge that you’ve got this tube hanging out and you learn not to flip over too quickly or whatever. But I don’t have to sleep on my back or my side or anything. I sleep all positions.

Dr. Poch:

One of the hacks that we just learned about this in clinic was one of our patients was taking a wire hanger and putting it in between the mattress and the box spring and they were sort of sticking it out sideways and they were hanging their bag on that rather than using the trash can, but allow gravity to flow. I thought that was a cool hack.

Jonathan:

Yeah.

Stephanie Chisolm:

Yeah, there’s lots of great tricks.

Jonathan:

All kind of things that you learn how to do that you’ve never anticipated learning how to do.

Thomas:

No.

Stephanie Chisolm:

Sure, that’s very true. We do have another question, and I know you can probably just talk on it briefly because it was what you talked about in terms of removing the prostate. You asked a question earlier, Dr. Poch, about sexual health questions, and we have a whole bunch of resources if anybody is looking. If you go to the… I’ll put it in the chat so that… Let’s see if I can get it in here in the chat. We have a lot of resources including videos about sexual health, but there was a question about, “Does removing the prostate impact sexual health?” And that includes every type of a diversion. Can you just briefly touch on that knowing that we have other webinars? I dropped the link in there for everybody.

Dr. Poch:

The bottom line is yes, and we talk about this with our prostate cancer patients too. The nerves that provide sexual function to the penis basically sit on top of the prostate. Anytime you’re operating in and around the prostate, there’s always risk of injuring those nerves or you purposely remove the nerves depending upon sort of cancer status. One of the big challenges in urology in general is sort of managing sexual function in and around removal of pelvic organs. There are ways to do nerve sparing, radical cystoprostatectomy, so you can do a nerve sparing operation just like we would do when we do prostate removals, if the patients are appropriate candidates, to try to preserve sexual function. I would say that it really depends on the tumor location and the involvement, but I think it’s an important thing to bring up with the physician that’s treating you saying, “These are my priorities.”

When we go through a priority list, we say, “Okay, well, how important is sexual function on your priority list?” That’s a hard conversation to have, and it’s hard to sort of tease out. Sometimes patients are not as forthcoming with that information or they don’t want to say because they’re worried about cancer diagnosis and it’s sort of taking a second back burner. But once you manage cancer, you don’t want to sort of leave a path of destruction, and including sexual function, if you can avoid it two, three or four years down the road. I think it’s important to address and bring up and have those conversations.

Stephanie Chisolm:

Sure.

Jonathan:

I think y’all kind of dance around about that. On an S to S call, after we exchange pleasantries and all that, the next thing they want to know is, “Can I have sex?” Whether they tell you, Doctor, that that’s important to them or not, it probably is. I had a prostatectomy before I had my radical cystectomy. I would encourage you to go to the website. There are many, many, many things that you can do to achieve sexual health and most of them work. I’m 72 years old. I still have a very active sex life with my wife, and there’s things that can be done, but clinicians tend to kind of dance around it. When you ask directly, “What’s my sex life going to be like?” They say, “Well, how important is that to you?” It’s important, and so that’s one of the things that we exchange, and I think that’s one of the values of the S to S program is you can ask a guy a blunt question and get a blunt answer.

Stephanie Chisolm:

I did put the link to some of the physical and psychosocial sexual health after bladder cancer. It’s one of the many webinars that we have archived on our website. There are, as you said, tons of resources, and I think it often is, “You saved my life.” But without really thinking about the sexual function part of it, that people get a little upset that you took away some of the good parts. That’s an important conversation, but not every patient is comfortable bringing that out, and not every doctor is comfortable bringing it up either. It’s unfortunately going to be on the patients to be a little bit more proactive in asking questions specific to that. There’s never guarantees, but certainly there’s things that skilled doctors can do to help preserve sexual function or there’s ways that they can help enhance that for after the surgery as well. Great topic, and that was a good question. Thank you for asking it. Couple more questions. Is there much downside in a six month or so delay for having your bladder removed to try alternative immunotherapy or chemotherapy treatments, in general? That’s a good general question.

Dr. Poch:

Oh, there’s a tricky question. For muscle invasive bladder cancers, there’s some studies to suggest you shouldn’t delay treatment at all, whether that’s starting chemo or getting a cystectomy because that can affect overall mortality. Certainly trying alternative therapies for muscle invasive bladder cancer is a little bit risky. We get this a lot with patients with stage one bladder cancers who’ve gone through BCG therapy and then are considering alternative therapy, whether that’s in bladder chemo, clinical trial, something else. The answer is we don’t know. We don’t what that runway is before it becomes more risky in terms of either progression to muscle invasive bladder cancer or developing metastatic cancer into the lymph nodes, even with stage one disease, because that can happen.

If you look at some of the studies, about 5% of men or 5% of patients, I would say, that end up having their bladders removed with still stage one disease because they failed other treatments may have some microscopic cancer in their lymph nodes. There is a runway there. We usually think it’s about a year to 18 months worth of trying other things for patients that have failed traditional therapies in the bladder. But we don’t really know the right answer to that, to be honest.

Stephanie Chisolm:

Right. You do look at the pathology to see how aggressive that tumor looks too, right?

Dr. Poch:

Right.

Stephanie Chisolm:

You’re looking at all of the big picture, so it’s very individual. Would it be wise to talk about being in the clinical trial? Because you’re being observed, you’re getting an opportunity to try something that might have benefit, but you’re also getting a lot of observation. I know you do a lot of clinical trials down there at Moffitt.

Dr. Poch:

Yeah, I mean, I think clinical trials in the post-BCG treatment space is very important because obviously based upon all the discussions that we’ve had here, some patients have muscle based bladder cancer, but some people undergo cystectomy because none of the other treatments work for their stage one cancers. I think it’s important to consider what are other options for those patients because functionally they don’t want to keep their bladders, they don’t have as high risk tumor as your Stage 2s, so I think clinical trials are really important in this space. One of the challenges that we’ve had recently, a lot of the inclusion criteria are fairly strict for clinical trials in terms of having received prior BCG.

With the BCG shortage, which most people are familiar with, it’s made a little bit of a challenge trying to hit all the boxes to enroll patients in clinical trials because of that shortage. There’s some adjustments that a lot of the clinical trials are undergoing right now, including the one that we’ve got in Moffitt, to try to expand what that definition of patients is so that they can be enrolled in some of these trials.

Stephanie Chisolm:

Okay. Technical question. Patient is thinking of an ileal conduit as their choice of diversion, however they’re overweight. What kind of issue is that?

Dr. Poch:

I think the ileal conduit is a great first start. I think it really depends on, as I said, the abdominal wall and what the abdominal wall looks like in the body habitus. Overweight comes in a lot of different shapes and sizes and where that fat’s located, and is it body fat, leg fat, how thick is the abdominal wall, some of those things that we can see on CT scan? Again, it’s an individualized approach. Usually, according to most of the textbooks, and what we do when we do our board exams, is ileal conduit should be a default or can be a default because there’s very few reasons not to do it.

Stephanie Chisolm:

Okay. Any other comments there? I have two more questions that I wanted to get to today, and this is… Nope. Okay. “Are diversion options reversible? Maybe you start with one. Can you switch to another? How often does that occur and is it even possible to maybe get an ileal conduit and then decide you’re going to get a neobladder, vice versa?”

Dr. Poch:

It’s pretty hard. The human body only has so much intestine to work with and it can be pretty challenging. It’d be interesting to know from the group here, most patients initially after surgery will have some trouble with being regular in terms of their bowel function, whether that’s too much or too little or yo-yoing back and forth. The more bowel you take to do your different diversions, the more challenging it can be, and nobody really wants to do redo operations to do that, so I would say it’s pretty unusual. There are some patients who end up having urethral recurrences after neobladders, for example, who then you need to sort of manage by removing their neobladder and their urethra, so that can happen.

I didn’t go to specifically about the different types of urinary diversions in terms of neobladder and there’s couple technical differences between a couple of the neobladders, but you can convert one of the neobladders to a conduit without much trouble. The other neobladder, which is the one that I do, I actually just remove the whole neobladder, and if we’re going to do a conduit, we’ll just take a separate section of intestine to do that. It can happen, but it’s unlikely, and not recommended.

Stephanie Chisolm:

Okay. Well yeah, this has been fabulous. Last question, “Did any of you go through chemotherapy prior to having your bladder removed?”

Thomas:

Yes.

Denver:

I did not.

Jonathan:

Yes.

Stephanie Chisolm:

Okay. Two yeses and a no. So how common is going through what we call neoadjuvant chemotherapy before you do that surgery? Is that something that’s routinely done by most doctors?

Dr. Poch:

For patients with muscle invasive bladder cancer, it’s right now giving chemotherapy is considered standard of care prior to doing surgery to remove the bladder. That being said, that’s based upon some clinical trials that were done and showing an improved survival and downstaging of tumors. There are some indications where you wouldn’t give chemotherapy upfront, mostly based upon kidney function. If patients have poor kidney function, then one of the drugs that’s frequently used is a drug called cisplatin, that’s that drug can be toxic to the kidneys. So if we can’t give that drug prior to surgery, then a lot of times patients are just going to move straight to surgery. If you look at the population based data, we’re getting better. I think that number’s probably around 40 to 50% of patients are getting chemotherapy prior to surgery, not just because they’re not being recommended for it, but there are some other clinical factors. We talked about the performance status and kidney function would be two reasons, maybe not.

Stephanie Chisolm:

Right. Well, I hope everybody that’s been on this call with us, and there are quite a few people that were here, really got something out of it. If nothing else, you maybe got some questions that you should ask your doctors, because that dialogue needs to start somewhere. If your doctor doesn’t bring up these shared decisions, maybe you should bring them up and tell them what’s important to you as you’re facing the potential for bladder removal surgery.

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