Transcript of Part 3: A Conversation with Bill, a Bladder Cancer Patient, and the Doctor Who Treated Him

February 13, 2024

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Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

I’m pleased to bring you part two of my conversation with Bill Robertson and Dr. Vikram Narayan, who recently hosted a wonderful session at the BCAN Fall Patient Summit. Dr. Narayan is an assistant professor in the Department of Urology at Emory University School of Medicine, and Bill is a bladder cancer survivor. If you missed it, please tune into part one of our conversation.

All right, so Dr. Narayan, how do you walk a patient through this very difficult decision to get a radical cystectomy? What do you tell them?

Dr. Vikram Narayan:

It’s unfortunately a life altering decision, and it’s one that I try my best to approach with the sensitivity that’s needed to really convey both the good and the bad aspects of it. So to Bill’s point, in his particular case we were looking specifically at a way of getting him closer to cure, which in cancer circle is a term that is thrown around less and less. People talk about living with cancer rather than being cured from cancer in many circumstances.

But when it comes to bladder cancer, the patients who have non-muscle invasive bladder cancer know that there’s always a chance that that cancer can come back. And the surveillance regimens that are associated with that are in fact sometimes very onerous and certainly they’re very expensive. So when we talk about walk a patient through getting a radical cystectomy, one of the things that I try and explain is the potential benefits that come from removing the bladder. In Bill’s case that also included the prostate as it does in men. And explaining that this means that your surveillance would necessarily be less intense than it would be if you approached it with the bladder sparing approach.

A lot of people look at that or hear that and say, “Well, the goal should always be bladder preservation.” And from a scientific perspective and also from a patient advocacy perspective, I certainly think that that is a goal we should strive to. If we can develop therapies and other options for patients that allow them to keep their bladder, that’s great and that’s what we should get. But when you’re looking at an individual today and trying to figure out, for example, someone with muscle invasive bladder cancer, if maybe radiation isn’t the best option for them, or they have factors in their cancer diagnosis that might put recurrence at high likelihood or risk, we really sit down and say, “Okay, let’s look at the pros and the cons of this and how this might change your life and what are some of the things in the pro column that you can look towards or look forward to having?”

And that’s the approach. Now, every patient is different. Every patient has different values and preferences and goals. And so when I have this conversation, I’m also mindful of trying to understand what those values, preferences, and goals are. That’s part of the reason when I first meet with a patient, I ask them about what they do for work and get to know them a little bit better, get to know what their lifestyle is. Even though our time might be limited in an initial visit, those are really important questions because that can drive a particular treatment over another.

Rick Bangs:

Yeah, it’s interesting because everybody has to make their own decision, and there’s different criteria that are involved. And I know I’ve talked to some of my patient advocate counterparts in other diseases, and I’ve said not all bladders are worth sparing. And that was actually very revealing to them. That was something they hadn’t thought about. All these factors that have to be considered, right?

Dr. Vikram Narayan:

Absolutely. I take care of patients who, they deal with significant voiding symptoms, treatment-related toxicity. So if you’re coming in for a bladder washing treatment like BCG or chemotherapy agent once a week for six weeks, that can be very disruptive to schedules. You’re then dealing with post-treatment symptoms. You’re in many ways spending a lot of your day thinking about your bladder, which is an organ that most of us prior to the diagnosis of bladder cancer, you probably don’t spend much time thinking of, right?

And so when you have that perspective on it, you can flip the script a little bit and think to yourself, “Okay, is there another option here?” And that’s when we shift the discussion to, “Okay, if the bladder is removed, what does my life look like? What are my options then?” And that’s when you can have conversations I think that …

But it does require that patients to be ready for that discussion. And one of the things that I think is really, really important … I mention removal of the bladder to all of my patients, including my early stage non-muscle invasive bladder cancer patients, not because I expect to remove their bladders or even hope to remove their bladders or anything along those lines. I say it so that it is not a surprise when they hear it or if it’s introduced to them at a later time. So they don’t view it as some kind of failure in their disease process, but rather just another step in getting them to that proverbial cure, if you will.

Rick Bangs:

Right. So now, Bill, you got an ileal conduit. What did you expect that to be like before you had the surgery?

Bill Robertson:

Well, Rick, I would say that I would’ve to give credit, first of all, to BCAN-

Rick Bangs:

Uh-huh. Sure.

Bill Robertson:

As I was starting to make that decision, I had discovered BCAN on the web and to any and all of your listeners, I would tell that website that you guys have, has a wealth of information. And so reading through y’all’s information and then listening to the stories of the patients that you all have had, people that you all have had on the podcast as well as your video casts, that really helped me to make that decision because then it was kind of like, “Well, you know what? They had it done and they’re living life. Then why can’t I?”

So it’s like I educated myself, but ultimately … And Dr. Nar- … Once again, I asked a ton of questions, but it was like I had my little list of these are the things that I’m going to ask. And that’s what people really have to prepare themselves for is that prepare yourself to actually sit down and have that hard conversation with your doctor because it helps you wrap your mind around it a whole lot easier. You got to be true to yourself and just be willing to ask those questions. Sometimes there are things that you might not want to hear, but dealing with bladder cancer, I’ve discovered that just because I don’t want to hear it, don’t make the problem go away.

So you got to be willing to ask that hard question so that you can make an informed decision.

Rick Bangs:

It’s such a huge surgery, Right? It’s not just the bladder, it’s the prostate with men and the hysterectomy with women, and they’re taking some part of your intestines. So understanding all of that is important.

Bill Robertson:

Yeah. I can’t stress enough that it’s life changing without a doubt. Life changing, but you don’t have to stop living. That’s the thing that I really want to stress to your listeners. That you do not have to stop living.

Rick Bangs:

Right. Okay. So now, Dr. Narayan, Bill didn’t have a choice on urinary diversion, but supposing that he had, how would you have discussed his options?

Dr. Vikram Narayan:

Yeah. And Rick, to be clear, I think I do present all of my patients with a standard set of choices. And in Bill’s case, the challenge for him, of course, was that he had one kidney and so some of the continent diversions that we talk about … And to clarify what continent diversions are, they’re the ones that we broadly classify diversions as either being incontinent or continent.

So incontinent diversion is the ileal conduit, the bag, if you will. But continent diversions can come in the form of a neobladder, such as the one you have, Rick, or an Indiana pouch, which is another type of continent diversion that is drained with catheters. So I offer all of my patients all three options and go through the pros and cons of each and let the patient decide again, as I said earlier, based on their values and preferences.

So every urinary diversion has some things going for it and some things going against it. What’s important to in making that decision is really understanding what you’re willing to deal with and how much of the post-procedural maintenance and work you want to undergo. For example, you probably remember from your own experience that with a neobladder, there’s more time in the operating room. It does take a little bit more time to construct, and there’s maintenance associated with irrigations of the neobladder and many patients also deal with nighttime incontinence and regaining that sort of function.

With Indiana pouches, you have to be okay carrying catheters and having easy access to catheters and being comfortable with catheterizing a stoma. I have a lot of patients from the rural south where they may not necessarily be within immediate access of a high volume medical center so that’s also sometimes a consideration for patients to think about, if you run into a problem with your Neobladder Indiana pouch, are you close by to a hospital like Emory, or are you several hours away? And maybe if a local hospital is unfamiliar with what you have, would that necessitate you; even if you, let’s say, just had a simple UTI; to be life flighted over? Those are considerations that also need to be thought about.

So to summarize, I share the fact that there’s trade offs with each of the approaches. If there are medical contraindications as there were in Bill’s case, of course, I highlight those to start off with, but ultimately let the patient choose. And when you look at decision studies that have been done comparing each of the urinary diversion options to one another, you’ll find for the most part, people report being satisfied across the options, which really reflects the fact that they have made the option that they’re at peace with as opposed to one being better than the other.

So you can just imagine this as being true for any kind of decision you make. If it’s a decision that you felt you made for yourself, you’re going to be much more happy than if it’s a decision that I said you needed to do, or if someone else said, “Oh, no, you need to do this because of X, Y, or Z.”

Rick Bangs:

Yeah. And the patients I talk to are very strong proponents of their diversion. But if you step back, the diversion you choose relates to the criteria that you use to make the decision. So, “I’m happy with my neobladder because these things were important to me and these things were less important.”

Dr. Vikram Narayan:

Yeah. And I really think that that’s really an important thing to highlight because I definitely emphasize that some people have a stigma with the ileal conduit in particular, but it might be the right diversion for some people. And it is for a lot of people. In fact, the majority of diversions that are done are ileal conduits, and there’s a reason for that. And I try and break down that stigma as much as I can by explaining that, and also trying to understand from the patient’s perspective, what are the things that are most important to them in terms of what are their fears, what are their concerns?

Patients will often share with you. They’ll say, “Well, the reason I don’t want to have my bladder removed is because I’m afraid I won’t be able to golf afterwards.” And this is maybe some misperception that somehow they came to understand. And so then we break that down and, “Why is it that you think that?” And dive a little deeper into that specific element of it before we walk them through the options themselves.

Rick Bangs:

That’s great. Okay. Now, Bill, there’s typically startup challenges with any urinary diversion. I had mine with a neobladder. I am suspicious that you may have had some with your ileal conduit. So talk about what your startup challenges might’ve been.

Bill Robertson:

Okay. The startup challenges. Well, it is interesting because at Emory, Dr. Narayan had alluded to the stoma nurse. I actually started, I call it the training. That training with the stoma nurse actually started three days after the surgery that she actually started, came in because they wanted to change the bag. And so she did the first change and then she walked me through, “These are the things that you’re going to have to do.” And I’m just laying there going, “Oh my God, this is going be like …”

When she came in and did the first change, that was the first time I doubted my decision because I was like, “What did I just get myself into?” Because you can’t reverse this at this point. But she would come into the room and, “No, Harry, I’m here and if it takes me an hour, if it takes me two, we’re going to do this until you feel comfortable.”

And I was like, “Okay.” My wife was there. So we went through that first changing together and the stoma nurse pretty much did all the work. But once I came home and I had the in-home care nurse coming by and once again, very, very helpful with just those first few times of, okay, the nurse said that when … She first prepared me with start out laying down and things … So you’re laying down and it’s leaking and you dry it off and then it leaks again. I’m literally laying, and me and my wife will go, “How do you get the pouch back on because it’s still leaking?”

And you start panicking and it just seems like, okay, take a deep breath. You can do this. And the nurse would come by and he was just like, “Okay, your bag looks good. When did you …” “I just changed it yesterday.” “Great. How did it go?” He goes, “Okay, let’s go do it again.” And I’m thinking to my … “I just did it yesterday.” “Nope, that’s [inaudible 00:15:53]. But it was just the fact that those people were there and I understood that they were there to do one thing and do one thing o- … Get me to the point that I could do this on my own because eventually my wife was going to have to go back to work because she had taken the time off. And I was like, “I’m going to have to master this on my own.”

And you’re reading online with other people. And they were like, “Don’t worry about how long it takes you,” because you’re reading it. These people, “Yeah, man, I could change my bag and three minutes.” And I’m like, “I’m at it for 45 minutes.” [inaudible 00:16:27]. But eventually you get to the point that you can actually do it, and then you begin to understand how. And like I said, the in-home nurse walked me through the process of placing that first order for resupply, things of that nature. Once again, that extension of the team that Dr. Narayan and Emory has put together really helped make that transition so much easier.

And the fact that Emory, when they sent me home, they sent me home with three or four different products from different companies, and it gave me the opportunity to explore, “Okay, I’ll try this bag, and I’ll …” then you find the one that I felt comfortable with, and that’s what I use still today.

But it was just that curve of I placed that first order not knowing that … I remember my stoma nurse telling me that, “It’s going to change, so don’t worry about it.” And I had placed my first order for 90 days, and Rick, I got in maybe 40 days in and it changed.

Rick Bangs:

Your stoma changed.

Bill Robertson:

And it changed. The swelling had gone down. I’m putting a bag on, and I was getting maybe three hours. I’ll never forget that day. But my wife, she called me, because she was leaving work, and I was in the bathroom and she could hear it in my voice. She’s like, “What’s wrong?” I’m like, “I have changed this thing four times today and this is just not working.” And then she was like, “Well, why don’t you try calling the manufacturer, explaining to them what’s going on.” So when I called and I’m talking with the guy, and he was like, “You ordered 90 days ago? Oh, you shouldn’t have done that.” It’s like, “Really?” [inaudible 00:18:06].

Rick Bangs:

Yeah. Really.

Bill Robertson:

And so when I explained to him what the situation was, and he just goes, “Oh, you need to try this bag here.” And I talked to him that afternoon. It was about 3:30, four o’clock that afternoon. And he was like, “We’ll get you some bags out and just give you an opportunity to try them out [inaudible 00:18:22].” Well, the next morning it was like 10 o’clock, knock on the door and the box was here. And I’m like, jeepers, man. That was like …

And so then tried the new product, it worked, and I was like, “Okay, I can do this now.” I called and had to place what they considered emergency order. And the lady was like, “No biggie. We’ll reach out to your doctor. We’ll get your new prescription and we’ll get it filled.” And boom, I was back in business again.

But it was some challenges there. Even to the extent that going down to Emory for the first follow-up appointment, and the stoma nurse had said, “Now, when you get ready to come back down here, make sure you bring your leg bag so you can drain on the way down.” And I’m just like, “It’s a 45-minute drive, I’ll be fine.” But in Atlanta, a 45-minute drive could be an hour and a half drive.

Rick Bangs:

Yeah. For two miles.

Bill Robertson:

[inaudible 00:19:20]. Right. And here we are. We’re on our way down and wife’s driving. And I’m like, “All right, now I got to hook this leg bag up because this thing is filling up,” because I have now been programmed that I got to drink water. You got to drink water. Well, the more you drink, guess what? The more you drink.

Rick Bangs:

Exactly.

Bill Robertson:

but-

Rick Bangs:

But it’s critical.

Bill Robertson:

It’s critical because when the home nurse was coming by, he came in one day and he looked at me and he just looked at me and goes, “How much water have you drank today?” And I was like, “Well, I think I’m up to three …” “That’s not enough,” because he could see it that I [inaudible 00:19:59]. He just looked at me and he goes, “You have not drank enough water today.” And when he looked at the bag, he was like, “Yeah, you definitely haven’t drank enough water.”

Then another adjustment because I certainly was not used to drinking eight to 10 glasses of water every single … Ut now I have a Yeti Cup that stays full and I just suck on it all day long. And it’s just a continuous process. But it helps with the fact that I could even tell on the days that if I haven’t drank enough water, I feel it because I just feel drained and you feel tired and things. So I know.

But just little things like that. I get accustomed now that when I’m going to go someplace and I’ll just have my leg bag in case I got to do an emergency drain while driving, but I also carry an extra bag in case I have a leak or whatever the case may be. No biggie. I just go in the bathroom, change it and keep moving on. Have extra change of clothes and things of that nature. But it’s just making those small adjustments that … And life is still good. We still just go where we want to go.

Rick Bangs:

Sure. Okay. I think our listeners might be interested in the answer to two questions. How long does it take you to change a bag now, just roughly. And how many and how many days between?

Bill Robertson:

I can usually change my bag within six minutes. I can change the bag within six minutes. And I can usually get about three to four days per bag. Typically on the fourth day, whether it needs it or not, I just change it by the fourth day. Just change. Yeah.

Rick Bangs:

Okay. I think some people might’ve been curious based on the story, so I wanted to make sure we were clear on-

Bill Robertson:

Yeah. Oh, I got it down to a science now.

Rick Bangs:

Practice makes perfect, right?

Bill Robertson:

Yeah.

Rick Bangs:

That’s all the time we have today for part two of my fascinating conversation with Dr. Narayan and Bill. We invite you to tune in and listen to part three of this episode wherever you get your podcasts.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bca.org.