Transcript of Part 1: 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 B-C-A-N.O-R-G.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN, producers of this podcast.

This is part one of our three-part conversation. I’m pleased to welcome today’s guests, 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. He serves as director of urologic oncology at Grady Memorial Hospital. And his clinical expertise includes the management of complex urologic malignancies, including bladder cancer. He has a clinical and research interest in the management of bladder and urothelial cancers.

Bill Robertson is a North Carolina native. His professional life is diverse, starting with joining the United States Air Force right out of high school. Being called into the ministry and getting ordained in the early 1990s. Acting as regional vice president for a national builder. Starting a home improvement company and buying his own tractor-trailer and hauling windmill blades. Bill has been cancer-free since his last surgery in February of 2022. Bill has been married for over 30 years and he has three adult children and two grandchildren.

Bill and Dr. Narayan, I want to thank you both for joining our podcast and congratulations on your terrific session at the BCAN Fall Summit.

Dr. Vikram Narayan:

Thanks so much, Rick. It’s great to be here.

Bill Robertson:

Thank you, Rick. It’s a pleasure to be here. It’s an honor.

Rick Bangs:

It’s going to be fun. So Bill, I want to start with your first visit to see Dr. Narayan. And you had had some twists and turns along the way to being diagnosed with bladder cancer. Hospitalization from urinary tract infection, loss of one kidney, multiple TURBTs and surgeries and hospitalizations. So, what were you expecting from this first visit and what were you hoping for?

Bill Robertson:

The thought process or the hope was with the meeting with Dr. Narayan was that we were going to be able to come up with a game plan that could more or less move me down the road to recovery, finding some sorts of solutions. Because initially, even though I did have a great experience at the previous hospital before coming to Dr. Narayan, ultimately I still had bladder cancer and we still had the other issues of dealing with the issue with the kidney and things of that nature.

So, when meeting with Dr. Narayan and his team at that first meeting, it was a patient/doctor, first consultant, and basically he told me at that point that he was putting together a team and we were going to come up with a game plan. And that next meeting, which I do believe was about two to three weeks away, was when he came to me with, “This is how we’re going to attack your case.”

Rick Bangs:

Excellent. All right. So, Dr. Narayan, you have this meeting with a patient. So, this one happens to be Bill, and he has a fairly complicated path to his diagnosis. So, what are your goals for a patient like Bill?

Dr. Vikram Narayan:

Rick, when I see a patient like Bill, the first thing I think about is putting all the pieces together. So, one of the tenets of my clinic as by virtue of just it being in a tertiary referral center like Emory, is that we get patients from all over, not only the city of Atlanta, but also the region. And Bill’s story is not uncommon in that patients typically have been seen by other physicians before, and sometimes their path to their ultimate diagnosis is filled with twists and turns.

And so, part of my job and my team’s job when we first see them is to put all of these pieces together. And so, we work early, even prior to the visit, to gather as many records as we can, outside imaging, pathology reports, that sort of thing. And then we really need to figure out, okay, where is it that this patient has been and what do we need to do to get them to move forward?

Rick Bangs:

Okay. So now, Bill, Dr. Narayan, you mentioned this already. Dr. Narayan had told you that a team was going to handle your care and it wasn’t just going to be him. So, how did you react to that approach?

Bill Robertson:

Well, at that point I knew that without a doubt, I was at the right place at the right time. That I knew, because at that point he introduced me to the fact that, “Okay, we have an issue with your kidney. We have an issue with the spot on your lung.” And he basically said, “These are the areas that I’m going to be dealing with, dealing with the kidney and the bladder.” He says, “But when it comes to dealing with the spot on your lung, I have another surgeon that’s going to be looking at that scenario.” And then also, he had lined me up to also meet with Dr. Kucuk, who was actually-

Rick Bangs:

Medical Oncologist.

Bill Robertson:

Medical oncologist. And I was like, “Oh.” And I asked, “So, are we looking at doing chemo?” And he was like, “No, not yet. Right now, we are going to take the approach of we need to…” And he told me then, “We need to go in and look again.” So, I was like, “Oh, another one of them. We got to go in and have another look, Bill.” Kind of thing.

But I understood where he was coming from because he was like, he says, “I can look at the images and things of that nature, but until I’ve actually have gone and looked inside of your bladder to actually see what’s actually going on in there, to actually come up with a better plan.” So, at that point, he had told me that he had start pulling the team together and they were actually going to sit down that following Monday, I do believe it was, that he was going to present my case to the entire team and they were going to come up with this game plan.

And then from that point on, he knew where I stood, because I was like, “Ultimately, Doctor, I’m at a point that with this bladder cancer scenario…” And at this point with Dr. Narayan, I’d already had four TURBTs. It was kind of like, “I’m really tired of that process. I’m really tired of that process.” Because after that, when we had the complications with the clogging and things of that nature, you’re walking around with a catheter for a month, it was like, “Okay, there’s got to be another solution here.”

And he laid it out to me that ultimately based on the size and things of that nature, he was very upfront with me, he goes, “I feel like our path is going to be that we’re probably going to have to remove your bladder.” And that was like, hmm, it wasn’t really expected to go that far, but on the other side of that corner, it was like, that’s when I wrapped in my mind that if we can get this thing out, then I can actually start a true recovery process. So I was like, “Okay, Doc, you are the one in charge. I’m going to follow your advice.” And that’s what we did.

Dr. Vikram Narayan:

And I think it’s important to provide a little bit of context. Before Bill saw me, he had seen several physicians, as we’ve already established, but he was dealing with really two separate cancers at that point. He had kidney cancer as well as bladder cancer. And so, we had to be really thoughtful in terms of how to sequence treatments and also get the best possible outcome for Bill.

The lung thing fortunately ended up being a red herring. We went down the path of just making sure that that wasn’t something else. And it turned out to fortunately be nothing to worry about. But when meeting Bill for the first time, the things that were going through my head were, “Okay, how can we strategize here in terms of what needs to be treated first and how and when?” And so, it was really important to line up all the pieces, including our multidisciplinary team, which really is just a fancy way of saying doctors in different specialties, essentially.

And Bill had had, he alluded to clot retention with prior TURBTs that he had had prior to seeing me. And so, there was necessarily some apprehension in redoing things that he had had previously done. But I felt it was very important for us to establish a baseline, so that we could come up with a plan that made the most sense.

Rick Bangs:

Yeah. My own history is, and I’ve talked to a number of doctors about this, it’s not unusual to do a re-staging TURBT, right?

Dr. Vikram Narayan:

That’s right.

Rick Bangs:

When you get a patient referred in. It may be surprising to some patients, but it makes sense to want to see it yourself and make sure you know what you need to know about that before you go into treatment. Right?

Dr. Vikram Narayan:

Yeah. The re-staging a TURBT is actually part of the cornerstone of bladder cancer management. I think one thing that even a lot of clinicians sometimes struggle to wrap their head around is this idea that the bladder is a notoriously difficult organ to stage. So, when we talk about staging, of course we’re trying to figure out where is the cancer? Where are the roots of the cancer? How advanced is it?

And you can imagine the bladder, it’s like a balloon, it empties and fills. And so, when you’re in surgery doing a TURBT, this bladder is emptying and filling. You’re controlling how much fluid is going in and out of it. And you’re also trying to very carefully do the surgery without perforating the bladder or causing any complications. So, getting good depth during that resection is actually quite challenging. And generally, there’ve been a number of studies that have looked at single TURBT versus multiple TURBTs. And in a third of the cases, in some series, doing that second, or what’s called a re-staging TURBT actually upstages your cancer. And so, not doing it potentially puts you at risk of getting insufficient treatment. So, it is definitely standard of care to repeat those assessments when meeting folks for the first time and diagnosing someone for the first time.

Rick Bangs:

Yeah. And that TURBT is an underappreciated procedure. I mean, there’s a lot of nuance there. You were talking about how deep you go and making sure you don’t go too far, but you want to make sure you get enough so you get the sample right.

Dr. Vikram Narayan:

Absolutely.

Bill Robertson:

But from my point of view, it actually put me more at ease with what was about to take place, because then I knew beyond a shadow of a doubt that Dr. Narayan knew it’s precisely what it was that he was going to be dealing with inside. So, to me, it was like, “Okay.” And like he said, a baseline.

And me being ex-military, a lot of times when we are trying to solve a problem, the first thing we do is go, “Okay, let’s go and have a look and see exactly what the heck’s going on before we actually come up with a plan.” Because if you don’t know, that unknown oftentimes is that one thing that can upset the cart. So, it actually did put me at ease that that he had told me that, “Hey, we want to go look, so that I can get a true look of where we are as of today.” Yeah.

Rick Bangs:

Yeah. And I had the same reaction. So, Dr. Narayan, so you talked about a multidisciplinary team. So, let’s talk about what disciplines are on this team and how do they collaborate?

Dr. Vikram Narayan:

Yeah. So, Rick, one of the things that Bill’s giving me a lot of credit here, which I of course, very much appreciate, but really I don’t work in a vacuum, of course. A lot of Bill’s success is actually attributable to the great people that work at Emory and its affiliated institutions. And there is a tremendous amount of intentional effort that goes into building that infrastructure to support patients like Bill.

So, we’ve talked about medical oncology already. I work closely with folks like Jacqueline Brown, who is a fantastic medical oncologist at Emory, as well as Bassel Nazha and Omer Kucuk, who Bill saw, and many others of course, but we also have a team of advanced practice providers. So, these are either PAs or nurse practitioners, both in our clinic and on the hospital floors. And they often comprise a really important part of the care team.

Another group of individuals that play a really, really big role are our residents. So, we’re a teaching hospital, and I think it’s important really to call that out because a lot of times patients will hear teaching hospital and think, “Gosh, am I a guinea pig?” Or, “Is somebody who doesn’t know what they’re doing, the one doing the surgery?” But in reality with bladder cancer, it is such a complex disease that you really need a team that includes residents. And the thing about residents and the way they add to the care of bladder cancer patients is they’ve got their eyes and ears open at all times.

So, one of the things that we talk about in healthcare settings is the Swiss cheese effect, where one person who’s supposed to be looking at something misses it, and then the person that’s supposed to be looking at things behind them, misses that. Well, when you have a team of residents that are helping take care of a patient along with APPs, what you have is you’ve got several layers of redundancy.

So, for example, when Bill comes to see me for a surgery, I’ve got a resident who’s double checking his urine culture. I have an APP who’s double checking his follow-up appointment. And all of those things together is what helps provide a good outcome. It is not just me alone. I couldn’t do it myself. You can imagine if I was just in the operating room focused on the surgery itself, well, when am I supposed to also make sure Bill’s got the appropriate medications he needs before and after his case? And so, that’s one of the reasons why a lot of advanced bladder cancer cases get centralized at academic centers is because there’s actually data that looks at this and shows better outcomes when they’re centralized at those sorts of referral centers.

We also, of course, have social workers and wound ostomy nurses. I’m sure Bill can attest to after his cystectomy, he worked really, really closely with several of our wound ostomy nurses to find and manage his conduit. We’ll talk a little bit about, I think, his diversion. I know we’ve spoken about that in the past and spoke at length about that at the summit.

Home health nursing is another group of individuals, and it’s super, super important to have home health nursing, especially after cystectomy, because sometimes after discharge is the most vulnerable time for patients. And readmission rates after the surgery are very high. And one of the things that contributes to that is sometimes lack of access to that in-home support. And so, of course, that’s another significant area of support that we work on.

I’d also be remiss if I didn’t call out the nursing staff and surgical techs who are experienced both in the operating room and on the floor. So, these are sometimes underappreciated individuals, but the reality is they see patients like Bill day in and day out. And so, they’re our first-line eyes and ears for when things are going wrong. So, one of the things that helps ensure good outcomes is if you’ve got a patient who had a cystectomy and they’re admitted to the floor, well, if that nurse has taken care of hundreds of cystectomy patients over the course of their career, as they often do at Emory, they will be able to recognize problems early and alert one of the members of the staff, that might not be picked up if it’s a procedure you only take care of once in a while.

And then lastly, of course, we’ve got a clinical research team. Clinical research is the bedrock of everything we do, and they also do a tremendous amount of work in screening and in guiding patients who are eligible for clinical trials to help them get the care that they need and advance the field of bladder cancer management.

Rick Bangs:

And you would include a radiation oncologist on your multidisciplinary teams normally, right?

Dr. Vikram Narayan:

Absolutely. Yeah. So, we do for muscle invasive bladder cancer, obviously every patient’s care is individualized, but one of the bladder-sparing approaches includes chemoradiation, and there’s also clinical trials that are looking at chemoradiation with or without other treatments. And so, I discuss radiation treatment with all of my patients, and we go over the pros and cons of each approach and individualize what’s best for that patient.

Rick Bangs:

Yeah. Now, Bill, what did you like or may be something you didn’t like about the team approach here?

Bill Robertson:

And I would definitely have to say to Dr. Narayan, I mean, that team that he has there. I mean, even when you start talking about the nurses on the floor, huge, huge difference at Emory versus when I was at the first care center, because at my first care center when I had that clogging and we had the surgery, and then they actually did put me up on their oncology floor. And after being there about two days where we actually did have an incident where we were starting to get clogged, and the nurse that was treating me, I actually had to walk that nurse through how to go about fixing the clog, because you still got the catheter in. And I was like, “No, you’re not going to be able to bring it through the small … You got to hook this syringe up on the large side and push water in, and it’s going to take two of you to pull it out.” And they were like, “We’ve never done this before.” And I was like, “How do you know?” I was like, “Because I’ve been through this.”

But at Emory, it was just the scenarios that they were … I mean, the nurses that were coming into the room at that point, they would recognize if things weren’t going according to the norm that things were supposed to be going, and then they would start to react before the problem actually became a problem. And then I would be sitting there going, “Is everything okay?” “Yeah, don’t worry about it. We got it. We got it. We got it.” “Okay. If they say it’s okay, then I’m not going to worry about it.”

But as you begin to go through the process and you start talking with the different nurses or the different physicians that came in through the process, it’s like I told you, I knew then that I was at the right place. Without a doubt, I knew then, because like I said, when we first went in dealing with the lung, and the physician came in the next day to do the follow-up, and he told me, “We’ve gotten the results and it’s benign.” And he had told me, he goes, “I know you feel like as if, well, if it was benign, why would we…” But the only way they could know was that they had to go look.

Rick Bangs:

Right.

Bill Robertson:

And so to me, it was like, okay, I’m just going through the process. And then the next attack was with the kidney. And quite naturally, once again, when Dr. Narayan and the team came in, he had told me that, “Yeah, we were hoping that it was going to be a scenario that he could go in and remove that infected part of the kidney. But it was so great that he had to actually take the entire kidney.”

But before going in, he had told me that that was one of the possibilities that could happen was that we may have to take the whole kidney. So, I was prepared for that. So, it didn’t come as a shock. But that team that he’s got there is just phenomenal. I mean, phenomenal.

Rick Bangs:

That’s awesome. That makes such a huge difference. So, Dr. Narayan, are there any benefits we haven’t talked to, to patients of having a care team? And what kind of feedback do you get from your patients on the care team?

Dr. Vikram Narayan:

Yeah. I mean, Bill’s story is very common. I do think that I should mention that, as you can hopefully surmise from listening to the conversation, there’s a lot of moving parts. And so, sometimes there are missed handoffs and setbacks that occur. But again, this is why we try and have as many redundancies built in, to mitigate the human element that sometimes gets introduced.

So, Bill obviously had a terrific experience, but I do hear from some patients who did have a setback here or a setback there. But I still consider the system to be working well when it’s caught early or I hear about it early so that we can address it. So, I think that’s the main benefit. And I think that, in terms of the types of feedback that we hear from patients, we really constantly get compliments about our wound ostomy nurses and our floor nurses. And it’s a constant highlight for me and just really a joy to hear when I’m in clinic. It just makes the day go by a little bit better. And really, it’s a huge testament to their hard work and really their care for our patients.

Rick Bangs:

Yeah, they’re so critical in the process. So, Bill, I want you to think back to the point where you believed a radical cystectomy was going to be the right decision for you. What factored into your decision and what was part of the conversation you had on that?

Bill Robertson:

Well, we were at the point, as I said earlier, that I had already had four TURBTs at this stage of the game. And so, when me and Dr. Narayan, we had sat down and had that discussion, I was like, “Okay, so what’s…” And he had told me, he says, “Well, we could keep going at this with the TURBT.” He says, “But based on where you are,” he says, “I would give it about two years and we’ll be back at square one again.

Because he explained to me, he goes, “There’s just no way that I can guarantee you that I’ve got all of it out.” And he explained it. He was just like, “Just a microscopic drop of that cancer being left behind in the bladder,” he says, “that’s the seed for it to start all over again.” And he was like, “And based on the size, you’re looking at three to five more TURBTs that before we can say, ‘Okay, I’ll see you in six months.'” And I was like, “No, I want to get off this path. Yeah, I want off this path. Let’s just take it out and then we go from there.” And that was the conversation that we had. And he was just like, “Okay, that’s what we’re going to do.” And that’s what we did. And I’m grateful for it. I’m grateful for it.

Rick Bangs:

Right. You wanted off the TURBT merry-go-round?

Bill Robertson:

Yeah. I wanted off that little … This hamster was tied of that wheel, let’s put it that way.

Rick Bangs:

That’s all the time we have today for part one of my fascinating conversation with Dr. Narayan and Bill. We invite you to tune in and listen to parts two and 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, advance 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 B-C-A-N.O-R-G.