Transcript of A Behind the Scenes Look: BCAN Interviews Host Rick Bangs

February 23, 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.

Mark Story:

Hi, I’m Mark Story, the temporary host of Bladder Cancer Matters, a podcast for, by and about the bladder cancer community. I am the director of communications and marketing at the Bladder Cancer Advocacy Network, where as many know it, BCAN. Today it is my distinct pleasure to turn the tables and offer you a conversation with Rick Bangs, the host of this podcast. Rick is also a survivor of muscle-invasive bladder cancer, the self-proclaimed proud owner of a two-thousand-and-six model-year neobladder, and Rick is also a prostate cancer survivor. He has worked as a patient advocate in a variety of roles including research advocacy, government lobbying, educational support, support groups, one-on-one support and fundraising. So now I get to say, I think what is going to be the best line of the podcast, welcome to the podcast, Rick.

Rick Bangs:

Thank you, Mark. Hopefully not the highlight of the whole thing.

Mark Story:

Well, these next few minutes will determine that.

Rick Bangs:

That’s right.

Mark Story:

I honestly think that this is going to be a fascinating opportunity for our listeners to learn more about you and the important work that you do. In addition, we’re also going to give you a little bit of a behind-the-scenes look at how we do our podcasts. So Rick, if you’re ready, we can get right to it.

Rick Bangs:

I was born ready. Let’s go.

Mark Story:

Okay, let’s do this thing. Much as I did, as you state at the top of every podcast, you’re a survivor of muscle-invasive bladder cancer, and the owner of a neobladder.

Rick Bangs:

Proud owner.

Mark Story:

Proud owner, yes. Proud owner of a neobladder. For our listeners, could you walk us through your bladder cancer journey kind of beginning with the initial symptoms that you had that caused you to go to a doctor in the first place?

Rick Bangs:

Sure. So was, it was the spring of 2005, and I was noticing some urgency and frequency. That would be the technical terms that would be used, and I did some Googling, of course, which is what everybody does. And so I concluded that maybe it had something to do with drinking too much orange juice or acidic things.

And so it was not one of those sudden and very significant changes, but was one of these that was kind of gradual. So I kind of limped along and I had my annual physical in January of the following year. And at that point, I talked to the doctor and I said, “Hey, I’ve got urgency and frequency.” And he said, you’re 48, your father had prostate cancer, and so that was what he kind of determined was happening. Which was fine until August when I noticed the just very faint tinges of orange at the end of my urine stream, and that was the point at which, because I had been dealing with this for over a year and I’d already seen a doctor or a primary care, that was the point at which I said there is something definitely wrong here. So I did not go back to the primary care and I made an appointment that day with a urologist

Mark Story:

Okay. And we worked together, so I know this, but for our listeners, you had an amazingly fast one month from diagnosis to radical cystectomy and that would blow anyone’s mind, but what happened in that month?

Rick Bangs:

Okay, so as I told you, I went to the urologist that day. That was in August. And as our listeners would probably recognize, I did not at the time, you don’t get a cystoscopy like that day. So it had to be scheduled. And it was like, he was booked out three or four weeks, which I guess is not that uncommon, and maybe it’s actually fast today, I don’t know. So I went back. Knowing what I know now, obviously I would’ve wanted this to happen faster, but nonetheless, at this point, I don’t know what’s going on. So I went in and he told me that I had a growth. That was how he described it, and so I knew what that meant. And so we did a TURB-T. This is in the community setting so I had my T U R B T and about, I think it was almost two weeks later, results came back.And surprisingly for him, and obviously shockingly for me, it was muscle invasive bladder cancer. So at this point, we’ve moved from a non-muscle invasive expectation to a muscle invasive, which has got a larger sense of urgency.

So I did a bunch of outreach. I have friends in the medical field. My father, he had had a prostatectomy by one of the super surgeons. And so we did our homework and we decided that University of Michigan would be the right place to go. And I made an appointment and unfortunately the surgeon I went to was a super surgeon, but he did not do surgeries any longer. He did not do radical cystectomies. But he did do my re-staging TURB-T. So that’s the second TURB-T that I have. And the question that was hanging over us, so this is literally middle of October, and the question hanging over us was whether or not I should have chemo, and the decision was made that I did not need chemo. They had re-staged me as a stage one, and I scheduled my radical cystectomy on October 26. So literally it was 30 days from the time I found out I had bladder cancer till the time I found out that I had to have a radical cystectomy and was actually under the knife.

Mark Story:

So just a impromptu question. So in that month, you went from, “Okay, I think something’s maybe not great,” To, “Oh, by the way, you need this life altering surgery.”

Rick Bangs:

Oh, yeah.

Mark Story:

Many, I think, medical centers particularly, focus on the physical impact of being a bladder cancer patient, the diagnosis, the treatments, the surgery, but the flip side of that coin is the emotional and the psychological aspect. How did you cope with that going from one month diagnosis to having your bladder removed?

Rick Bangs:

Obviously it was a whirlwind because you can only imagine all the time and effort involved in getting all that work done because I had to have cystoscopy, I had to have the first TURB-T, second one, I’m going and getting second opinions because I didn’t just go to the University of Michigan. So logistically, it was all a blur. It was also obviously deeply troubling. It was, I would say, maybe the worst time of my life. And part of the challenge there is not just that you’ve got this horrible news that was completely unexpected, but you’re having to deal with the consequences of that, that the statistics don’t look good. At this point, I hadn’t had the radical cystectomy, and I like, I think, most patients, at this point you want your bladder to be removed because you’re assuming that it’s contaminated and could potentially progress to something worse. So it was not an easy time at all. I’d been recommended by some folks that I trusted that I should go to see a counselor, which I did, and somehow I managed to get myself to October 26th and have my radical cystectomy.

Mark Story:

Wow. Well, this happened in 2006. BCAN was founded in 2005, and at that point in oh six, BCAN still existed at John and Diane Quale’s kitchen table. Now at this time, were there resources available to you to learn about bladder cancer and I think almost more importantly, learn about radical cystectomies?

Rick Bangs:

I think the only information that I could find… I don’t know if I found BCAN at that point. I don’t know if it had a web presence yet, but I can tell you that the information that you can find was very technical. It was geared around kind of the clinical aspect of it, “We’re going to remove your bladder. If you’re a man, we’re going to remove your prostate and some other stuff. If you’re a woman, you’re going to have a hysterectomy. We’re going to remove some intestine.” So it was all very technical descriptions. What I couldn’t find at that point was anything that I could relate to from a daily living point of view because at this point, I have to make a decision. Do I get a neobladder? Do I get an ileal conduit? Those were the two choices I had. I really didn’t have any kind of criteria on which to base the decision. I couldn’t find any kind of information. There was just no patient information, and I have a tendency to ask a lot of questions, and I couldn’t find answers to my questions.

Mark Story:

That had to have been pretty frustrating because it’s such a life-altering decision. So if we fast forward a little bit, your radical cystectomy’s over, and you told me that you probably met Diane Quale, your co-founder, in 2009 or maybe 2010?

Rick Bangs:

June, 2009.

Mark Story:

June, 2009. Okay. Well, I guess you were introduced to BCAN then, and you have been a very important part of our organization since then. And I guess you’ve had a front row seat to our growth and expansion over the years. So could you tell me what was it like watching BCAN grow over the years? I think particularly from the perspective of somebody who just couldn’t find good information when you had to make that very troubling decision to have your bladder removed.

Rick Bangs:

So I would say it has been such a pleasure, it’s awe-inspiring and heartwarming to just watch BCAN mature. I mean I guess the closest analogy that I can think of, it’s like watching your favorite team, although you’re actually having some interaction with your favorite team, march to the Super Bowl or the World Series. It has just been such a pleasure. It brings a smile to my face just every time I think about where we were and where we are thanks to BCAN.

Mark Story:

I always describe BCAN as being a community of patients, caregivers, and medical and research professionals, and I’m just so pleased… I’ve seen growth in the five years that I’ve been with BCAN, and I too am very proud of how the organization has grown and continue to serve people in our community. In that time from oh nine to the present, were there any particular milestones that happened where you kind of took a step back and said, “Wow, they have really grown.”?

Rick Bangs:

I think the answer is there was no one thing that was this huge delta that I could align with as an answer to your question, but I can tell you that… And part of the reason that that’s true is because the growth has been so organic and it’s just been consistent momentum. So things that as they would happen, I could look back and compare against would be things like the Think Tank attendance. So I started attending Think Tank in, I think it was 2010, and I have described it to people as 99 scary smart people and me in this room where they’re trying to solve the problem that is one of the most important problems to you personally. And so I watched going from a hundred people to, I don’t know, last year were we 300 or something?

Mark Story:

Like 315 people were at Think Tank last year.

Rick Bangs:

So every year when I would go to Think Tank, and I’ve not missed Think Tank since 2010, every year I would go and there were just more and more people there, which was always a good sign. There were always not just more people, but more disciplines in the room. And so if we think about where we would be today, obviously we’d have urologists or urologic oncologists, we’d have medical oncologists, but we’d have more radiation oncologists. I don’t even know how many radiation oncologists were at the 2010 meeting, but I’m sure it was less than a handful and may have been one. And so from a Think Tank point of view, I could see it. I can also tell you that it has been a real pleasure to watch some of the people on the BCAN staff, and these are people that you know.

So when Stephanie was one of the earlier ones when they carved out this role for Stephanie Chisholm and it had to do with education and all the amazing work that she’s done, and then Andrea Maddox-Smith coming on to man the helm and you coming on and the two Rebecca’s, the research lead as well as the walk lead, all this amazing, amazing staff.But when we talk about BCAN staff, I want to be very clear, we’re talking about roughly a dozen people. How many people are on the BCAN staff today?

Mark Story:

We are 14 people, and we were eight when I arrived five years ago.

Rick Bangs:

And I don’t know how many people were there when I found out about BCAN, but I know it was less than five. And so if we think about 14 people, it gets back to what you said about BCAN being, you didn’t use the word, but it’s part of the name, a network. And so I could go to any major city and go to the office of either the famous blue cancer or the famous pink cancer, and I pretty well could guarantee you that there’s probably 14 people or something approximating it in these major cities, and yet BCAN has 14 people for the whole thing. So amazing work gets done with a very small number of resources because it’s a network, because it relies on the members and the participants to kind of move it forward, and they do so quite willingly.

I can also tell you from my peers in the advocacy community, the research advocacy community, which is where I do most of my work, when I talk to them about some of the things that the BCAN has done, they’re in awe because BCAN has had a tendency to latch on to very progressive and important issues that some of our peers in other cancers, that’s what I’m talking about. I’m talking about people who work in research advocacy like myself. Most of them are volunteers, some of them are paid, but they’re working in other cancers and they’re in awe about the things that BCAN has done and continues to do. So I think it kind of sets the standard pretty high, which is a lovely place to be.

Mark Story:

Well, thank you for those kind words, Rick. And I will say that we definitely have a staff of 14 people, but our success is tied to the fact that we are volunteer-driven, and there’s so many doctors, patient advocates, I mean, you name it, people who give their time, talent and treasure to BCAN for absolutely nothing. They do it to volunteer and to be a part of our community and to help. And we are so grateful to both the individual and corporate donors who help fuel our success. But man, we’ve got some amazing volunteers out there who work really, really hard to help us carry out our mission, I would say. But actually, I’m glad you brought up your involvement with BCAN as well as patient advocacy because you have been a patient advocate for some time with BCAN, with a particular focus on bladder cancer research. So what I’d like to hear is from your perspective, what is a patient advocate and what has your work as a patient advocate entailed over the years?

Rick Bangs:

I think this question of what is a patient advocate is an important one, and it’s one that as I’ve worked in variety of contexts outside of BCAN, even within BCAN, some clarification is always necessary. And so I’ve done some work under the National Cancer Institutes, a group called SWOG Cancer Research Network. So it’s publicly funded, so your tax dollars are funding these clinical trials. And so as I work with the researchers and the leadership, this question is really important. If I bring in a patient advocate, what am I really looking for? Because patient advocates do different things. And so, if I’m providing support or education or lobbying the government or building awareness, those are all advocacy roles, but that’s not the focus of a research advocate, and the research advocates are the voice of the patient across the clinical trial. They’re working arm in arm with the researchers and trying to make sure that important questions are getting answered, that information is going to be clear and available to patients in language that they can understand, that they are actually going to want to participate in these trials.

So that’s the answer to the first part of your question, which was about patient advocacy. The second part of your question is about things that I’ve done over the years and I really have enjoyed, and this was true in my corporate life, I really enjoy understanding the end-to-end process. So in the case of research advocacy, you start with what happens in the bench, in the lab and what’s called translational science to get from the lab to the clinic and treatments and interventions that result from that work, and then defining the standard of care because just because you have done this clinical research does not mean that the guideline changes or the standard of care, the usual care. And then beyond that, even if you’ve got the guideline set up, what actually happens when I go to the clinic, which might be called the pattern of practice, that might be completely different.

So I really have a kind of strong interest in understanding how all the pieces fit together and what the handoffs are between each of those steps along the way. I will also tell you, I have never said no to an ask on the patient advocacy side, even when I was asked to do things that were horribly scary.

Mark Story:

Wait a minute, you mean like hosting this podcast?

Rick Bangs:

Hosting the podcast or being at a SWOG meeting where there’s literally 800 people in the audience and you are making a presentation and worst of all, you are part of the open forum for people to ask you questions, these kind of things… I am not somebody who’s historically been… I was the kid whose knees were knocking, my voice was quaking, cracking. It was not pretty. And so I’ve taken on these things because I thought it was important that something happened and I felt like there were, whatever, 600, 700,000 bladder cancer survivors who would want that. So I would do these things. It’s like jumping out of the plane and parachuting. You make this leap of faith and you just do it. So that’s kind of background.

So I’ve already talked about the NCI and SWOG. I did some work for Movember in the prostate space where they wanted to stand up. They had a funding for a technology project, and I happen to have had some experience in information technology in my career, so happy to do that. I do work on the guidelines that I mentioned as part of the end-to-end, I work with the National Comprehensive Cancer Network, which is noted for establishing the standard of care or the guidelines. Done lots of things with BCAN over the years. I mean, shortly after I met Diane and started going to Think Tank and things, we were working on tip sheets. I mean literally one-pagers, or maybe it’s two sides of one page, two sides of a page explaining what is a radical cystectomy and what is an Indiana pouch or an ileal conduit or whatever.Worked on the earlier version of the clinical trials dashboard. We’ve done webinars.

I took on the Detroit Walk for Bladder Cancer. There was an early volunteer, his name was Larry Barron, and his twin sister had started the Detroit Walk and I showed up. I found out about it literally I think the day before, and there were literally 12 of us and I’m like, this is Detroit metropolitan area. And I knew doctors in that area because of the work that I had done, so I raised my hand and I said I’d be happy to lead that walk. And the first year we did it, I think there were 240 some odd people there.

Mark Story:

Holy smokes.

Rick Bangs:

And in part because I had reached out to the local institutions, the University of Michigan and Henry Ford and Karmanos and Michigan Institute of Urology. We all work together. I’ve done things for the FDA. I just gave a talk on drug shortages at the ASCO Genitourinary meeting, which I tried my best and I hopefully succeeded at representing the patient side and what BCAN has done and held that up as kind of a standard for other groups relative to that. And the last thing I’ll say is one of the things that I enjoy a lot is literally matchmaking. It’s like, if I know somebody who’s doing a piece of work and I know somebody else who’s interested in that same area, making sure they know one another because oftentimes they don’t. So kind of doing some matchmaking. So that’s kind of the universe of things that I’ve worked on very broadly.

Mark Story:

And that’s a lot of stuff. We are very grateful to the work that you have done and continue to do with us over the years. I like what you talked about from, I guess, the ensuring that the patient’s voices are heard. And I’d like to ask you, what is the value of incorporating patient feedback into all three of these, bladder cancer diagnosis treatment as well as surveillance? What do you think about that?

Rick Bangs:

I think it’s kind of a fundamental, and it’s something that we are constantly grappling with this as research advocates or patient advocates, is making sure that our research colleagues understand the answer to this question. And when I started, there wasn’t a lot of specificity. There were not a lot of standards, and there weren’t great answers to that question. I think today’s a very different scenario, but we’re still trying to improve this. So things that you would expect to happen as a result of having patients fully integrated as partners. You would expect there to be better results. In other words, you would expect that you could accrue the number of patients you need on a clinical study faster. You would expect that you wouldn’t have to close as many studies. You would expect that the studies themselves would be better and they would deliver better outcomes. You would expect that more critical issues would be studied, that it wouldn’t be just some kind of hypothetical, “Oh my gosh, isn’t that interesting, but what do I do with it?” Kind of question.

So I think this is a great question that we continue to need to reinforce. And the other thing I will suggest is that it’s a completely different lens that we look at things through than the doctors. And so I remind my peers as well as the researchers that I’m not here to out-doctor the doctor. I’m not here to out-statistic the statisticians. Those are different kind of lenses through which we look at things. I’m here to look at it from a patient and provide input that would be relevant to the patient experience and how this is being communicated and executed at the patient level.

Mark Story:

And so much of this cannot be designed and delivered in a vacuum. I agree that the patient voice in all of those is absolutely critical. Ask any patient what it’s like to have routine surveillance via cystoscopies, and I think you’ll get a pretty uniform opinion on that.

Rick Bangs:

Right, right. Yeah. And I do want to point out, I think the bladder cancer space, and it has to do with the history in that space. So in bladder cancer… And to this day, we’re very much underfunded as a cancer. And historically, you could imagine without something like BCAN in existence, it would’ve been much worse. So there’s this sense of camaraderie and collaboration that you don’t see in the other cancers. And literally, I work with my peers and I work in multi-cancer context too, and you just don’t see the same engagement of patients that you do in bladder cancer. You don’t see the same collaboration. There’s more competition. So it’s this wonderful space to work in and has lots and lots of opportunities.

Mark Story:

Well, great. Now as this part of the podcast, we get to super fun stuff. And for those of you listening, this is going to be the really behind the scenes stuff for Bladder Cancer Matters. As of the time that we record this, we have published more than 60, in fact, almost 65 episodes of Bladder Cancer Matters. And I will fully confess that we created this podcast not really knowing how to do one or even if anyone would listen. And if you don’t mind going back three plus years because we’re in season four, what was your experience producing and publishing our very first episode all the way back in 2021?

Rick Bangs:

It was terrifying.

Mark Story:

Yes, it was.

Rick Bangs:

Yeah. So I’d been asked a month before, Stephanie had reached out to me, Stephanie Chisholm, and had this idea and would I be interested in. Remember I said I’ve never said no. And I was like, this may be the first time I say no. Because I’m like, “Oh, I don’t know. I don’t think I’m talk show host material.” That’s kind of the way I looked at it, I’m not talk show host material. And we talked about it some more. And as I had mentioned before, I never said no to anything. So the first hurdle was getting over this belief that there’s just no way I could do it. And so, then we picked a topic and we had a researcher, it was Ashish Kamat. I know Ashish Kamat from the Think Tank and the numerous other meetings, and I hopefully have a good relationship with him. So that was all good. But it’s like, and you hear these stories about people like, when the camera starts rolling… Well, when that record light is on, I was frozen. It just was nerve wracking.

Part of the challenge for me personally is when I write, if I’m writing a journal article, I’m a perfectionist, so I do tons of editing, and if I get through with tons of editing today and I see the same document tomorrow, it’s still going to get edited. So I think that’s part of the challenge is that I’m always thinking, “Oh my gosh, I just said the wrong thing. I should have said that. That was the wrong word.” So that was part of it. And then as I already alluded to earlier, I was the kid whose knees were knocking and voice was quaking and shaking, and so it was horribly frightening. And when you and I regrouped, this is my recollection anyway, and we had a debrief, we decided that, you know what, maybe some coaching would make sense because I could maybe learn something from somebody who coaches people in podcasts. So we did that, and for me, it turned the corner.

Now, I’m not saying it’s not still terrifying when the recording starts because it still is, but it’s nowhere near as severe as it was because she helped me kind of understand how best to do something that sounds pretty obvious, but it’s like, well, how do you make these transitions between… You’ve put the question out there and then you get the response and what are you doing while the response is happening and how do you get to that next question? So she was very, very helpful, and I owe her a debt of gratitude.

Mark Story:

Well, I think that just to, I guess, add on to what you said, it was terrifying for me publishing the episode not knowing if anyone would listen, not knowing if anyone would download it. Ironically enough, that episode was called ‘What’s Up with BCG?’ And that was still one of our most popular episodes in terms of downloads. So we knew we were onto something and sixty-some episodes later, here we are. And over that time, over that last three-plus years, are there any episodes that stand out in your mind or that you think of, I guess, as you’re looking back about recording and producing these podcasts?

Rick Bangs:

I talked about matchmaking earlier, so I love bringing, I call them my friends, they’re my research colleagues, they’re people who are working in bladder cancer day in, day out on the healthcare side, and so I love bringing my friends and exposing them to other people. I like doing that. So that’s kind of the central theme. We’ve had some ability to kind of pivot pretty quickly on some very important issues and get the word out relatively quickly. So COVID for example, we did podcasts on COVID when, I mean, people were looking for information, both in general but specific to the bladder cancer context, and we’ve always made that the focus. And so we could turn that around pretty quickly, and we did. The same thing held true for the drug shortages.

We’ve talked about BCG more than once and how to deal with the shortage, but there were platinum drug shortages last spring, and we were able to provide some insight to patients as to how to work through that, and hopefully we never have another severe shortage, but we’re still dealing with the BCG shortage and so I have to be practical about it and say, not sure that’s going to… We’re be dealing with these shortages. So I’ve really loved bringing current information and those episodes stick out. Love talking to survivors. Those are always fun experiences, and I think really insightful for patients because as we talked about earlier, when I was diagnosed, I had no opportunity to talk to anybody to get any information, and so hearing it firsthand makes a huge difference.

Mark Story:

It does. It truly does. Now, I have a question for you that can either serve as an outlet for your complaints or for you relating things to our listeners, but could you give us an idea of the work that goes in, that you put in to preparing to record an episode? Because the podcasts sound very conversational and they truly are, but a lot of work goes into that. So would you mind giving us an idea of what that work looks like?

Rick Bangs:

Sure. So I think the first thing to understand is you got to have a topic, right? And so we try to pull in current, and call them current events in the bladder cancer community, try to bring in those topics and long-standing topics that maybe haven’t had the audience that they could have had. So topic curation, you and I have a discussion about that at the end of every year, not that we aren’t curating topics in between time. So we’ve got several dozen topics that are in the queue. So topic curation is kind of important. The next step is probably the easiest step is once we’ve figured out the topics, finding a handful of topics to send invites on. And the good news is between the people I know and have interacted with over the years and the people that BCAN knows, I don’t think we’ve fallen short in finding contact information for anybody that we wanted.And we’ve been incredibly lucky, I think, in that we have not, to my knowledge, I don’t think we’ve been turned down very often at all.

Mark Story:

No, I don’t think so.

Rick Bangs:

Yeah. The next item is one, I don’t know what your thoughts are, but it’s one that I have been surprised at how difficult it is, and that’s scheduling, Mark. Scheduling. And a part of it is the nature of the people that we engage. They’re very busy people. But doing the scheduling has been much more complicated and more work than I think any of us would’ve expected. From time to time, we have little technical issues, but fortunately those are not the norm. And we have gotten through… I mean, I certainly have much better, when they used to call it audio visual, they’re more kind of the IT skills. I’ve learned a lot over the last three years around that. So once the invite goes out and we’ve gotten through the scheduling, we have two calls. One is a planning call, which we try to fence in and scope out the specific topics for the call.

And I take that information, I may come with a very rough discussion guide, or I may just come up with a list of things, touch points, if you will, and we hash that out. I send out a draft discussion guide and I leave it in the hands of the guest to shape that because I’m not the one that has to answer the question and I want to make sure that they’re getting a question that is… First of all, I don’t want a yes or no answer, I want something that they feel is interesting and they’re passionate about, and so they take a look and return a revision to that, and then we record. We usually allow for an hour. Once in a while we spill over. We sometimes had to break episodes into parts, but we just go and have a recording session, and those have tended to go really well. We remind people that if they go down a rabbit hole, if they don’t like the answer they just gave, no one ever knows because it’s going to be edited out anyway.

Mark Story:

The magic of editing.

Rick Bangs:

Yeah. And people tend to be a little more comfortable with that. And then we finish the recording, I always send a thank you note directly to each one because I don’t take for granted these relationships and their time commitment. Then you find a hole in the schedule, an appropriate place to publish and communicate through social media and other contexts, and then we’re, I think, at the end of a single life cycle, unless I’ve missed something, and I’m sure I probably have missed some activities that you do on the production side.

Mark Story:

Not really. I think you’ve really described very well the work that goes into producing a podcast. But I will say from my perspective, and I’m not normally behind a mic, but that for me, truly, it’s a labor of love in getting these amazing guests on, fantastic perspectives and sharing what they have to say with the bladder cancer community. I mean, it’s just truly a labor of love for me, and I get very excited whenever I publish an episode because I know that there’s new information out there that will hopefully help people in the bladder cancer community.

With that said, I am going to come to the favorite topic, which is the last one. And Rick, I’d like to know, as you well know, if we go back to the beginning of the podcast, you talked about being diagnosed in 2006, and as we’re recording this, it’s 2024, but the way in which bladder cancer is treated has changed pretty dramatically since you were initially diagnosed. So I’m going to ask you to look into the Rick Bangs’ crystal ball a little bit and tell me what you see or what you would like to see in the future of bladder cancer diagnosis and treatment.

Rick Bangs:

So I just want to make one statement around where things were because I think it’s important context. So at the time of my diagnosis, there were three people at the MD Anderson, at MD Anderson Cancer Center, that kind of described the landscape as the landscape of bladder cancer as people have been stranded on a shallow plateau for a generation, and that was literally true when I started. And so we’re in a much, much better place. And as always, cure is the goal, but I think we’ve got to be pragmatic. We have a much deeper understanding today than we did when I was diagnosed, and I think that’s generally true of cancers. So when we talk about cure, we need to talk about cure as plural because it’s not just one thing, and I think we’re much more knowledgeable about the types of things, the number of things there are. And I suspect in another 10 or 15 years, we will discover that we were somewhat naive on that number of things and how to deal with them.

From a future point of view, I think there’s some broad themes. One is, and this has always been the case, and it’s getting closer to being reality, which is, you want to make sure that the right treatment goes to the right patient at the right time. This whole concept of precision medicine, some of that concept is literally about knowing who should have chemo, who should go right to radical cystectomy. That’s part of that. So I would expect to see, and I am seeing, more activity in that space, and I’m really excited about that because you don’t want to go through chemo if it’s not going to do anything for you, as an example. I think there’s a much better comprehension of the collateral damage around treatment, and so I would expect to see more non-intrusive diagnosis, for example, and treatment.

So today we have cystoscopy, we have TURB-T, we have radical cystectomy, hopefully, and we’re already seeing a shift in this direction, and hopefully it starts building more of a momentum around non-intrusive kinds of possibilities. We are also much more aware, and fortunately COVID made us even more aware, that not everybody can get to the treatment that they should be getting, and that there are obstacles. There are obstacles in terms of distance. If you think about the American people, not everybody lives in a metropolitan area, and so getting an appropriate treatment, getting a clinical trial is not easy, it’s, in some cases, literally impossible, so we’re understanding that better. We’re better, I think, today, and I hope that trend continues, in terms of asking about clinical trials or trying to ensure that patients get the standard of care, but we still got a lot of work to do.

The pattern of practice or what patients are actually getting deviates from the standard of care, the usual care or the guideline treatment, way too often, and there’s all kinds of bad outcomes as a result of that, so I think we’re going to see some great work there. We’ve got to do a better job in the advocacy area. We’ve got to do a better job of diversity of research advocates, patient advocates who do research and the study teams themselves. And so most of my peers, and this won’t be surprising to anybody, I don’t think, but most of my peer group in the research advocacy space are white female breast cancer survivors from higher socioeconomic groups. And they’re wonderful people, I love all those people, but the challenge is that other voices are not being heard and they’re important voices. And the same holds true from a bladder cancer perspective. If you look at the kinds of work that’s being done across cancer.

So if I’ve got a study and there’s more than one cancer that qualifies, bladder cancer is not always at the table. And so I’m hoping that we’re going to see more inclusion of bladder cancer in these multi-cancer studies, and as well as having the researchers from bladder cancer part of the teams that are doing this work because I think we are so underrepresented in terms of that work. I don’t care how you slice and dice it, we’re just not at the table. We have our own challenges in terms of being underfunded specifically for bladder cancer, but we are way behind the curve relative to these multi-cancer, pan-cancer kind of things. And the last thing I would say is that we’re increasingly seeing cancer having the same component in different organs.

And so we’ve got these mutations that are not specific to bladder cancer. You would see it in bladder cancer and some other cancers. So it’s crossing cancers. We’re now at the point where, as we define each of these organ cancers, breast, prostate, bladder, lung, we’re seeing things that are consistent across these mutations. And so I think it’s going to be more and more important for advocates and advocacy groups to start addressing that and partnering in creating coalitions because I don’t think we are going to be able to succeed if we continue to be very siloed from a disease point of view. So those are my high level thoughts on where the future of bladder cancer is going to go.

Mark Story:

Well, thank you for those. Those are very valuable perspectives, and I think particularly from someone who has involuntarily been in the bladder cancer space since 2006. Those are really valuable thoughts, Rick. I appreciate that. And I lied. I said I had the anchor question, but I have one more question for you.

Rick Bangs:

Oh, no.

Mark Story:

What has it been like being the one answering the questions versus asking the questions?

Rick Bangs:

Well, I have to tell you, it’s terrifying to be on either side of the mic, but as the answerer, you feel like you have a little more control, but you also feel like the spotlight is shining on you for a lot longer. So I’m still soaking on this, but either side is somewhat terrifying.

Mark Story:

I concur. Having posted my first episode, I concur. Well, thank you, Rick, and thank you so much for being our guest today. That’s all the time we have today for my fascinating conversation with Rick Bangs, who is the esteemed host of Bladder Cancer Matters, and we invite you to tune in to past and future episodes of Bladder Cancer Matters, and we also encourage you to subscribe, like, and comment wherever you get your podcasts. So thank you everyone for listening, and thanks again, Rick.

Rick Bangs:

You are very welcome. It’s been my pleasure.

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 BCAN.org.