Transcript of “A Must Read – A Patient’s Guide to Bladder Cancer”

June 18, 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:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also 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, the producers of this podcast. I’m pleased to welcome today’s guest, Dr. Khurshid Guru. Dr. Guru has served as chair of the Department of Urology at Roswell Park Comprehensive Cancer Center in Buffalo, New York since 2017, in addition to serving as director of robotic surgery since 2005. Dr. Guru is one of the early fellowship-trained robotic surgeons as of 2004, and has performed over 3000 procedures pioneering the cystectomy program at Roswell Park. He leads the International Robotic Cystectomy Consortium. His experience in robot assisted surgery, especially his 600 robot-assisted in radical cystectomy, has been shared with over 400 surgeons from more than 15 countries.

He has authored and co-authored over 250 journal articles, abstract and book chapters, and he is also a member of the National Comprehensive Cancer Network, the NCCN, Bladder and Penile Cancer Panel. Dr. Guru, thank you for joining our podcast.

Dr. Khurshid Guru:

Oh, thank you so much for having me, Rick. It’s a pleasure. And the work you guys do at BCAN and the support patients get out of this whole exercise, I hear this all the time from my patients in my clinics.

Rick Bangs:

Oh, thank you, thank you. All right, so I want to talk about your book, which is A Patient’s Guide to Bladder Cancer, and writing a book… and particularly a book like this… is such a huge undertaking. So what were your goals with the book and who did you write the book for?

Dr. Khurshid Guru:

Well, I have been in practicing specifically bladder cancer care for the last two decades, and about a decade and a half in I kind of realized that there was a very specific way of people asking questions and some focus targets they all want to get out of it. It’s very different from what, Rick, we do for physicians or health providers. We are looking at it from a totally different angle and the patient and their family is looking at it from a totally different angle. And so I had this habit of every clinic for a little while going home and writing some interesting questions in a notebook and trying to make a list of these questions.

And after doing this for almost a decade, I sat down and made a laundry list of what really needs to happen so that when people hear me talk to them or speak to them about this whole exercise of an initial consultation or a follow-up, that they could go to a resource where they would rather instead of hearing me just speak and write into this format where they have a record of going back and looking at the notes. So this is where the idea of the book came in and I think patients needed a book. There are some good resources out there, nothing against them, I think they’re very good. It just was kind of my angle of how I dealt with my patients and how I responded to them.

Rick Bangs:

And that was over a decade’s worth of patients so that’s a lot of input as we can tell from the number of cystectomies you performed.

Dr. Khurshid Guru:

Yes.

Rick Bangs:

So if I go to Amazon and I look for your book, I see that you are the author, that’s what Amazon says. But I know, because I looked at the contributors section, and I know also from our discussion, that this was very much a team effort and I counted at least 19 different contributors including yourself. So who’s actually involved in your book and what disciplines did they represent?

Dr. Khurshid Guru:

That’s a great question because, as you know, for everything we do in this world it’s never one person’s effort, it’s always a whole village which takes this across. And when I came up with the initial idea of the book and all that, I realized that in every field from the person who talked to them about a stoma here or who talked to them about the anesthesia room, and a lot of people think that, well, I’m the surgeon and I’m the main player, but everybody is a main player in this game and this is about somebody’s life and we’ve got to put our best effort. So we got together, everybody who kind of did this. It also included some medical students. It included people who are specialists in nutrition, people who did social work stuff, people who did physical therapy, stoma care, medical oncologists and different surgeons. Because I focused on robotic surgery, so I had some open surgeons so I didn’t want it to be biased towards one field.

So yes, and the funny story about this is that Amazon wouldn’t accept more than one author as a primary author. So that was the thing. And honestly, we went to Amazon because it was an easy way to almost distribute the book globally because they publish and print, even though they own your rights, as you know. In clinical practice we don’t have the time to distribute and work all those little paperwork things, how to get the book across to patients. Right?

Rick Bangs:

Right, right. So very much a multidisciplinary approach, which we always recommend. So that’s wonderful.

Dr. Khurshid Guru:

100% yeah, and we also did this, once we finished this we had patients read through it and give us feedback and see if there was… even though the initial whole infrastructure of the book was made based on patient questions. I always say this to everybody, “The patient is king or queen, we just serve them,” and that’s what we try to do here.

Rick Bangs:

Wow, wow. That’s great. Very comprehensive patient input, which is always the goal. So clearly this is a massive effort. So how does a project like this get funded?

Dr. Khurshid Guru:

So we honestly just did a lot of this in our spare time. Where we had a lot of, which would cost a lot, is the whole design and the layout. A lot of it was done by me and our illustration team. We laid it out. We had regular meetings where we would draw it on the wall and basically look at it and say, “Okay, let’s walk through a patient’s life and see if this question makes sense.” And the way we wrote the answer, what would be the next question, do we think that this satisfied them? If not, what will be the leading question or what will be the track or the path we want them to go through? So that took a little bit, but majority of the design and the development funding came from our own alliance foundation, the Roswell Park Alliance Foundation, which is an internal funding source.

And then we just hopped it onto Amazon because we thought that it would be printed more at demand, even though it doesn’t financially bring anything to us, but it brings a big service to the people and patients around the world with their families kind of getting to know what’s written in there.

Rick Bangs:

So labor of love and very proactive. I love the proactivity here in terms of collecting the questions and then grabbing all this input and thinking about what’s next. So that’s wonderful. So talk a little bit, you’ve got this notebook full of questions, so how did the content… so now somebody’s got to figure out how to answer the question, what illustrations go along with that… how did that all happen?

Dr. Khurshid Guru:

So initially when we did this content, we took the questions and we divided them into a journey of… we did a storyboard where we looked at the journey of the book from the first time a patient is diagnosed and suddenly they’re in shock. And that’s why if you read a lot of textbooks for health providers the first chapter usually is about, oh, this is your bladder and this is the main organ. And our first chapter is why is this happening to me? Because you come into a state of shock like, oh my God, why is this happening to me? And then you look at, well, how many people around in this… and you know this… a lot of patients who get diagnosed with bladder cancer initially think that, oh my God, I’m the only one, and then they slowly realize they know a lot of people who have had this.

And that’s why we went second chapter was like going by the numbers. And then we went into like, okay, what does the bladder do and where is it located? And then how did they really figure out my diagnosis? How did they confirm it? So we basically went by the natural history of bladder cancer.

Rick Bangs:

I like that. I like that. All right, so how long did it take you and the team to pull the book together? You got a decade’s worth of questions in this notebook, how long did it take you to get from there to a published book?

Dr. Khurshid Guru:

That honestly was, I think that’s why you kept the question, because it’s a hard part to get the questions together but it’s even harder to write the answers and then make sure that they’re shaped very different. I’ll give you another funny story. When we wrote the book, and we have services in the institute which basically help us with anything we have edited. We have English writers and editors who basically can look at content. So I sent my book to them just out of curiosity and it came back completely marked and said, “We need to flip these chapters like this.” And I said, “No.” I said, “You are neither patients neither you take care of patients. This is not a literature book or an English class reading where you’re trying to teach somebody. This has to go by the whole gestalt that here’s a patient and what are they experiencing and what are the questions which pop up in their head? What are the worries they have? What are the hopes they have? What’s the aspiration of their families when they look at them?” I said, “This has to be merged in a way that we could present that view to them with all the medical knowledge simplified.”

Rick Bangs:

I love that. I love that.

Dr. Khurshid Guru:

Thank you.

Rick Bangs:

So what parts of the book did you and the team find hardest to write?

Dr. Khurshid Guru:

I think the hardest part was, as you know, this is medical content, the hardest was the whole journey of a patient and translating and kind of converting ourselves from this side of the table to the other side of the table and seeing it as a patient. So for example, a lot of times we would write a chapter and it looked like as if you opened a medical book and you read a medical book chapter. So we said, “Well, no. That’s not how it is.” When a patient gets pathology, they don’t say, “Oh, it is this layer, this layer.” We need to simplify it. So one great example I’ll give you is, which is one of my favorite examples is, if you have blood in the urine and how do we tell people what hematuria looks like? I don’t know if you remember, but there is a chapter on caring for the Foley catheter, it’s one of the commonest questions people have because it’s not a common thing. They’ve never seen this before.

And this question, to be honest with you, was in my mind since I was a resident 20 plus years back, the patient talking to you on the phone and trying to explain how the urine looks. And if you look at the book, I basically made a thing which said, clear water, slightly darker, fruit punch, and then it goes to ketchup. So that was the hardest part to do. I always felt that medical knowledge is so freely available, especially with all this Google and internet and everything else. The question is how do you basically translate it and make it completely palatable to the patient where they’re looking at it and saying, “Oh yeah, it makes sense to me.” And that was the hardest part to write.

Rick Bangs:

Right. Okay, so now we’re going to flip the question. What parts were easy to write?

Dr. Khurshid Guru:

Easy was the medical knowledge. For example, here is the pathology, bladder has this layers. Tumors, Ta is this, T1 is this, T2 is this. For us, because it’s something which is almost built into our system. Cystectomy involves these parts you remove. Those were the easier parts. The harder part was how do you look at a patient and tell them your prostate is… before it gets to the bladder the urine goes through the prostate. This might be very easy knowledge for health providers. It ain’t easy for the patient because they have to do so much imagination.

Rick Bangs:

Right, right, because they’re not familiar with the medical text and they may have forgotten some of the graphics they would’ve seen in biology or whatever.

Dr. Khurshid Guru:

Yeah, and this goes into a little bit more detail. For example… our illustrators were amazing, a lot of credit goes to them… they showed arrows. Even though like you and me know, oh, the kidney makes urine, it goes to the bladder and then you pee it out. But we had to do arrows because we knew some patients were like, “Okay, how does the kidney bring the urine? Okay, it’s here. Oh, there’s an opening, it’s called an orifice. Oh, okay.” They might talk to you about a tumor near the orifice, things like that.

Rick Bangs:

Okay, so you’ve mentioned the illustrations and there are a lot of illustrations in the book.

Dr. Khurshid Guru:

Yes.

Rick Bangs:

A lot of illustrations. I want to make that point very clear. All right, so how did you get all the illustrations? How did these get created and curated? How did that all come together?

Dr. Khurshid Guru:

I have a very good illustration program here in my department, and this is one of my research areas. We literally sat down almost every other day we would come with iterations and sometimes they would… I mean these are very talented people with a lot of qualifications so it’s not that you’re drawing for them and they don’t know what you’re drawing. They knew they did a start and then you would modify it based on your knowledge of, like stoma. Okay, the stoma hangs like this, the bag sits like this. They knew how to make a stoma. They knew how to take care of this. They knew how to illustrate it. The question was how do we add the nuances of what patients go through? So we felt the illustration, like they say a picture is worth a thousand words, right, so we basically focused on doing a lot of the work by illustrations.

Rick Bangs:

For somebody like myself who’s very visually oriented, it’s very helpful, very helpful. Okay, so now were there parts of the book that didn’t make it to the final version? Things that you omitted either that didn’t find a place after the notebook? What’s on the cutting room floor?

Dr. Khurshid Guru:

Well, I think this is the hardest part of any author or anybody who even writes a piece, is that where do you stop? How much depth do you want to really go into? For example, you may give details of the operation somewhat but what do we really tell them? You might find a patient in your office who is an engineer and he has studied every damn thing about the operation and will ask you every nuances. But 90% of patients don’t. So where do you make the book such that the engineer patient versus the completely uninformed patient both are happy with the content of the book? So that is where we cut the content. Now as you know better than me, that there’s a lot of books where you write your first edition and before you even publish your first you’re already thinking what would go different in the second version.

So yes, there’s a lot of content and there’s… between you and me because you know this field very well, you’ve kind of lived through this… since the book came out there has been a lot of changes in medical management of chemotherapy. One thing which has lacked in this book is advanced bladder cancer. And it was deliberate because we didn’t think that we needed to make an encyclopedia. We felt that we needed to take care of one portion well and maybe come with another version which has two volumes, one is localized and one is advanced.

Rick Bangs:

Okay, that makes sense. So let’s talk a little bit more about if you were writing this book in 2024, what would you add to it? What would be in a sequel or an update?

Dr. Khurshid Guru:

Well, 2024, there’s a few things which have become very obvious. We have the trimodality therapy for bladder preservation has come forward with a lot of studies. The management of upper tract is weak in our book. We don’t focus a lot on clinical trials and why they’re important. I think that chapter is obviously missed. And there are new medical managements, new immunotherapy, chemotherapy, explaining that in a simplified fashion for the patients would be really ideal for the next version. This is almost five years out. I think maybe in a year I will take the energy to basically take this book apart and come up with… And by the way, I’ve also done this, Rick, I have taken comments from my patients who have read the book. And a lot of them would come in and say, “Oh, I read it and it was fantastic.” And the only question I ever ask them is, “So what’s wrong with the book?” So I have put in a few thoughts together that what needs to be added.

Obviously some are very simple things you go, “Duh, I shouldn’t have missed that one in the past issue.” And some are like, “Oh yeah, that’s a really cool thing to do.” So not there yet, but I think in another year or so, yes. By the way, Rick, in fact I came out with the prostate one this year.

Rick Bangs:

Oh, okay.

Dr. Khurshid Guru:

Yes, so we came out with the prostate one this year. That took me, I started that right before Covid and then it slowed down because we were too busy in Covid and focus was different, and we just released it this year. It’s done very well. And some of the lessons I learned from the bladder book, which patients had told me, I made sure that they were taken care of in the prostate book. So that’s kind of the story.

Rick Bangs:

And the landscape since this book has been published has changed a lot.

Dr. Khurshid Guru:

God, yes.

Rick Bangs:

Right? And that’s a good problem to have.

Dr. Khurshid Guru:

Hey, let me tell you, if you and me you are writing a book which is the size of a booklet with five pages and somebody gets a little capsule or a gene test when they’re a kid and they never get bladder cancer, I think you and me both would be happy.

Rick Bangs:

Right, exactly right. Exactly right. Okay, I want to talk a little bit about women in the book because they tend to get underrepresented in the literature and in studies. And it looks to me like you made a very conscious effort, a deliberate effort, to better integrate women into the book. The diagrams and graphics, they tend to be both male and female. So why is that and how did you make that possible?

Dr. Khurshid Guru:

Well, my team, all the ladies are the best illustrators I have. So I bet you even if I missed something they have made sure that we had a fair balance, and we did a fair balance because you know and I know that in women bladder cancer could have a worser prognosis because they’re detected late and their symptoms are totally kind of missed. There is also literature that you correctly mentioned that people don’t focus on that aspect of our social and our gender thing. But we tried. I think we could do better than this, but we have done okay. But I think we could do better.

Rick Bangs:

Yeah, I mean think it’s good… it was a very strong starting point and a nice standard for other people to emulate.

Dr. Khurshid Guru:

Thank you.

Rick Bangs:

So hopefully that happens, including the section on sexual function, I thought that was very nice to see in a book like this.

Dr. Khurshid Guru:

Like you said when you were mentioning about a lot of things have changed, one of the things that I remember even when I trained 20 years back, it used to be such a radical operation and you wouldn’t dare to talk to your professor about sexual function and quality of life issues. Today, I tell you, it’s kind of equally on my mind when I see a patient as much as is cancer control. I want to make sure that their quality of life stays as close to what they would be with the bladder in.

Rick Bangs:

Right, absolutely.

Dr. Khurshid Guru:

And this is, thank God, longevity, the treatment options, all these have made all these patients and survivors live longer and get close to quality of life. So it’s very critical for them to understand that, hey, you know what, we have options.

Rick Bangs:

Right, right, and thank goodness we do.

Dr. Khurshid Guru:

Yes, 100%.

Rick Bangs:

Right. Okay, so if you were to write a chapter perhaps and talk about the future of bladder cancer, what’s not here today but we might see in the next five or 10 years, what would you include in your chapter?

Dr. Khurshid Guru:

Well, technically robotic surgery has done a lot of advanced, kind of fine-tuned some things, but I think it all depends on the surgeon. Some open surgeons are phenomenal. A lot of my mentors and friends do a great job. I think the future would be basically an earlier cure before we take the bladder out so that people don’t need the bladder out, number one. Number two would be that genetically we work up this way early so that we prevent them to get to getting into a bladder cancer situation. Prevention is better than cure. I initially would never think that would happen, but I think we are getting there slowly but definitely. The third thing I would basically say is a lot of quality of life options for a lot of survivors to return back and get their quality of life. And if more and more we go from ERAS to sexual dysfunction to incontinence to neobladder creation, all these things are things which bring patients back.

And it’s normally human, right, once your cancer is out at the next visit you come in people will ask you these questions and say, “How do I get back as close to as what I was before surgery?”

Rick Bangs:

Right, right. Yeah, because the first priority is I want to live. And once we’ve kind of got that at least directionally under control, these other things come into play.

Dr. Khurshid Guru:

Yes, 100%. I mean, inspiration of this book has been the patient. And like I say, again, the summary of this whole program, this project, and in a lot of ways our work, is I again say this patient is king or queen. Everything is there to serve them. And hopefully science is making strides where we will have to do the least and they’re on autopilot and whatever we have to do we have the resources and people like you who are there to stand up for them.

Rick Bangs:

Yeah, we try, we try.

Dr. Khurshid Guru:

Absolutely.

Rick Bangs:

Any final thoughts?

Dr. Khurshid Guru:

Well, my final message, obviously the book is available on Amazon but I’m not more focused on the book right now. What I’m focused on is to my colleagues, health providers, that patient education is very critical and times are different and we don’t get to spend a lot of time with electronic medical records, our documentation, the number of patients we see, the financial toxicity of our institutions. I think it’s always well spent time in writing or publishing a patient education material because it makes all the sense to make the patient better in terms of understanding and knowing informed consent and an informed view of everything what’s happening with them.

Rick Bangs:

Yeah, and it also scales the work that you do. Because if you’ve documented it other patients can benefit from it, so that’s a wonderful result as well.

Dr. Khurshid Guru:

Absolutely right.

Rick Bangs:

So Dr. Guru, I want to thank you for sharing details about your work in bladder cancer and talking about your amazing book, A Patient’s Guide to Bladder Cancer.

Dr. Khurshid Guru:

I’m grateful. Thank you.

Rick Bangs:

If you’d more information on bladder cancer, please visit the BCAN website, www.bcan.org. In case people wanted to get in touch with you, could you share an email address or a Twitter handle or any other information you’d like people to have?

Dr. Khurshid Guru:

So it’s @khurshidguru on Twitter, or they could just email me at khurshid.guru@roswellpark one word, R-O-S-W-E-L-L-P-A-R-K.org. Thank you.

Rick Bangs:

Okay, great. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Be sure to like, comment and subscribe to this podcast so we have your feedback. Thank you for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Dr. Guru.

Dr. Khurshid Guru:

It’s a 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, 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 bcan.org.