Managing High-Risk NMIBC
Transcript: Cystectomy vs bladder-sparing options
James Catto, MD, MB, ChB, PhD, FRCS; Douglas Cappiello, MD; Camille Cappiello; Ashish Kamat, MD, MBBS, FACS
Podcast recorded November 2025. All transcripts are created from interview footage and directly reflect the content of the interview at the time. The content is that of the speaker and is not adjusted by Medthority.
- [Ashish] Hello, everybody, and welcome to "Expert Voices: Navigating Non-Muscle-Invasive Bladder Cancer." I'm Ashish Kamat, and it's a pleasure to welcome to the forum Professor Jim Catto, who really needs no introduction, a friend, a colleague, an expert in all things bladder cancer. And it's also a pleasure to welcome back to the forum Doug and Camille Cappiello, who joined us for a previous episode, really explaining to us the patient voice, and we're looking forward to having a discussion today. The topic of today's episode is weighing up cystectomy versus bladder-sparing treatments. And Jim, let me start off with you. You know, there's been a lot of recent attention to this question, right? But despite the recent attention or because of the recent attention, it's a perfect time to ask someone like yourself that has really been a champion of shared decision making and presenting all the data to patients, what clinical and patient-related factors do you consider when you're talking to a patient about cystectomy, bladder sparing, when to do what?
- [Jim] Thanks, Ashish, and thanks for the invitation. It's always a pleasure to be here. I have this conversation a lot, I suspect you do as well. I think the key issues for myself, I quite early on to lay down what are the likely pathways of both approaches. So bladder sparing, which I think, at the moment, would be BCG maintenance is the standard care but may change at some stage. So the concept of bladder sparing would be that you keep your bladder in place, but you'll be having multiple treatments and multiple checks over the next three years, and that would involve burden to and from hospital. But you don't get the downsides of surgery. So as we come to in a minute, some of the downsides would not be there, but it's not an easy road in some patients. It's lots of journeys, it's financially quite expensive and a lot of patients get bothersome urinary tract symptoms and upset, but it keeps your bladder in place. It avoids a major operation at the beginning, and it gives you a chance to let pathways evolve. And to a certain extent, it seems the most frequent and a sensible choice to start with because it gives you a bit of time to see how the cancer responds. And you know, one of things we talk about right at the beginning is that bladder cancer and high-risk, non-muscle-invasive bladder cancer can be a very unpredictable disease. So I'll outline that and then conversely, I'll then go to the cystectomy approach and explain how this is a much bigger operation upfront, but may be a more definitive approach. It could be overtreatment for some patients with high-risk, non-invasive disease, but in the long term, it is likely to be more definitive and have a better cancer cure, but have a greater impact on your quality of life. And I would briefly outline the kind of sexual side effect body measure issues, notwithstanding the short-term length of stay and complications from surgery. And I try and gauge from the patient what their mentality is. Are they thinking I want to do the least possible to keep this cancer under control and I, therefore, am driven by a kind of bladder-sparing approach, or am I hearing that they do not want to die cancer, they want to get this thing dealt with as quick as possible. And then we'll tackle that down the line and I'll sort of outline those issues. It's a rapidly emerging area as you know, or changing area as you know, and it could be that in a few years time, that discussion changes quite considerably, given that we now have more and more BCG on responsive treatments.
- [Ashish] So Jim, I'm glad you raised these points, right, because first off, it's very important that we ask the patient what matters to them. Some patients really will say, just take it out. I don't wanna deal with this cancer, I don't wanna risk it coming back. Life is of primary importance. Others will say, no, I want to do everything I can to hold onto my bladder. When you're faced with a patient that says to you that I wanna do everything I can to hold onto my bladder, but you know, based on the patient's disease characteristics, that's not really a safe option even though the short term, how do you sort of convince that patient or try to convince the patient that the conversation should be moving towards cystectomy, Jim?
- [Jim] Well, I mean, it's my job to advise them and give them the information to make the choice. It's their choice to make. So if I am very concerned, I mean, firstly, I still think this is less than a muscle-invasive tumor. So even if you think you've under staged it, it still could be T2a, for example. I would just move to earlier assessment. I'd be setting the discussion around, okay, you want to go for bladder preservation, but you know, we're gonna be back in this room in six weeks time after BCG, three months time after cystoscopy. And at that stage, if the cancer's come back, then you are really gonna be faced with the choice of having your bladder out or not. And you really need to start thinking about that and talk to your friends and family about the implications. So in answer to that, I would just set their expectations. They're likely to fail BCG treatment and they'll be back in their room quite quickly. What I wouldn't do is kick them down the line a long time. I do an early assessment or a prompt assessment at the right time.
- [Ashish] So that, you know, brings me to you now, Doug, when you are listening, and again, to remind the listeners, you went through this yourself and we heard about that in the previous episode, so you have a very personal perspective on this. What do you think patients need to understand most when they're facing the option of a cystectomy versus bladder sparing? How can we as your guide, your physician or, you know, provider, help you better understand what a cystectomy means?
- [Doug] Thank you for the question and nice being here today. You know, as someone who's gone through the procedure myself and who has spoken to dozens of patients who are facing this decision, I can tell you that patients are terrified at the thought of undergoing this major surgery. But I think it's most important that they know that while it's a long and difficult procedure, the vast majority of patients get through it successfully. Although complications are common in the first few weeks. In regard to quality of life, the best way for patients to understand it is to speak with other survivors who have undergone radical cystectomy. And fortunately, there are organizations like the Bladder Cancer Advocacy Network, BCAN, here in the United States and others overseas that help patients understand what to expect and what life is like post radical cystectomy. I recommend you refer your patients to BCAN Survivor to Survivor program, encourage them to join bladder cancer support groups and speak with fellow survivors. From my personal experience and when speaking with others who have undergone radical cystectomy, while it's a very difficult operation with a long recovery, most patients do very well and resume all their activities they did prior to surgery. In fact, I can't think of anyone who's undergone the surgery who regrets that decision. So really, life after radical cystectomy is not the bleak picture most people think about. In fact, in many ways, my quality of life is better now than it was just prior to surgery. And if people understand that, I think they'll be more open to the procedure.
- [Ashish] So Doug, you bring up a very interesting point, right? Because we, as a field, are always trying to find ways to prevent us or take away the need for us to recommend a radical cystectomy. Bladder sparing is at the forefront of... Well, a lot of research that we do, clinical trials, whether it's non-invasive or even a muscle-invasive disease, but since we're talking about non-invasive disease here, it's a perfect segue to talk about the CISTO Study, C-I-S-T-O Study, which was recently published by John Gore in JCO. For those that may not be familiar with it, this is essentially an observational study where patients that had tumors that recurred despite BCG and were facing bladder sparing with intravesical therapy versus radical cystectomy were essentially asked after appropriate counseling to fill out certain questionnaires and talk about outcomes. And what was surprising to many of us in some ways was that there really was no difference in patient-reported outcomes between radical cystectomy or bladder sparing when it came to social functioning, urinary health, physical functioning. And when it looked at factors that favored radical cystectomy, actually financially, patient felt better off, mentally, they felt better off, their physical functioning was better. The only places that favored bladder-sparing therapy was bowel health, as one might imagine in the short term, because of the resection of the bowel and sexual health, because, of course, the nerves do sometimes have to be sacrificed because of disease control. So with that background, I wanna ask both of you, and let me start with you, Jim, with this data that we have from CISTO, how does that now factor in to your counseling of patients?
- [Jim] Thanks, Ashish, and it's great. The CISTO data are great, really informative to the field, but they mirror some of the ones that we've found in the UK before. So I think we've known for a while that the quality of life after cystectomy for non-muscle invasive disease generally is pretty good. So 8 out 10 people have got the same quality of life. 1 in 10 have got better, but 1 in 10 have a worse quality of life through complications. So they probably just fundamentally confirm my biases really towards, well, biases towards surgery and cystectomy for cancer control, but also that it is still impactful, especially in sexual function and body image. So I think it helps me counsel better, it helps me think about targeting treatment to, you know, if you have a couple where sexual function's more important to them or it's very important to them, then I think you need to think long and hard about that. But it's also the beginning of a roadmap, as we get better agents in this space, it might be that we start thinking about that paradigm in a different way.
- [Ashish] And Doug, hearing this data, I mean, you know, you and I have talked and you're a big proponent of radical cystectomy being a very good choice that you made. How does this data, either A, reinforce your personal experience, or B, change what you were thinking about when you would advise patients in the advocacy group such as BCAN or World Bladder Cancer Patient Coalition?
- [Doug] Yes, thank you. You know, when I was scheduled for my radical cystectomy in 2020 for my BCG unresponsive, high-risk, non-muscle invasive cancer, there were very few other choices other than radical cystectomy. So it was a clear and obvious decision for me. And of course, I was very risk averse and I didn't want any chance of progression if I could avoid it. But today, there are significant new options. The decision not as clear, you know, Dr. Kamat, the first time I ever saw you speak about bladder cancer was at the 2024 BCAN Think Tank meeting. And you probably recall you were the lead speaker at a session called When Is Too Much Bladder-Sparing Therapy. And with that presentation, you helped me understand the jargon behind the numbers. And this is what I think most patients really need to understand when facing this option. Patients are scared about having this surgery and they seek ways to preserve their bladders, but they also need to understand the risks in doing so. So to me, it boils down to just a few questions. What are the chances that I will demonstrate a complete response to this treatment? What is the overall recurrence rate in 12 months or 24 months, and what's the rate of progression to muscle-invasive bladder cancer? These numbers can be very confusing to patients and physicians need to help them understand the real-life implications regarding the various treatments. Now regarding the CISTO Study, to me, it's really just a confirmation of what many of us who have been through this procedure already know that radical cystectomy is not the end of life as we know it, and has many advantages over bladder-sparing therapy. For those of us who wanna minimize any risk of progression or the continued stress and anxiety associated with frequent surveillance and treatment. But there are patients who don't qualify or just refuse to have surgery without at least trying other bladder-sparing options. And that's okay as long as they understand the risks and benefits as clearly expressed to them by their physician.
- [Ashish] So Doug, I think we're a self-selected group here today on the podcast because what you're saying makes perfect sense to me, of course, but I will not infrequently, and then sometimes once a week meet a patient that has heard such horror stories about a radical cystectomy that they literally walk into my office and say, I would rather die than have that mutilating procedure called a radical cystectomy because I will be in bed for the rest of my life. I will have urine leaking all over the place and my quality of life will just be completely miserable. And then they turn to their family members and caregivers that are with them in the room and everyone is in agreement because that's what they've heard or seen or Googled or read. So Camille, I want to ask you, you know, again, as someone who has been in the profession but also now taking care of someone that's gone through bladder cancer, what is your perspective about the role that family members, caregivers, and others play in shaping the treatment decisions that our patients make?
- [Camille] Oh, thank you, Dr. Ashish. I just wanna say that caregivers play a significant role, you know, in carefully listening and helping the patients discern the most effective options for them. So when it comes to these types of situations, I think that, you know, really inclusivity of the caregiver, educational materials in making sure that both parties are clear and understand what the options are, 'cause oftentimes, caregivers can advocate for the patient. A lot of times the patient comes with tremendous fears and vulnerabilities and you know, they're physically exhausted and sometimes there can be confusion there. So I think the caregiver can help to ground the patient at times. But with that, it's important to understand the relationship of the caregiver and the patient because there can be, you know, areas of grey in there in how they present themselves at an appointment. So I would say that just really good education for both parties, avoid assumptions, you know, along the way and just to make sure that things are clearly presented. The caregiver also can act as an advocate for the patient as well. So sometimes, you know, you can get pertinent historical information from a caregiver that the patient may be unable to recall or if afraid to share, and so the dynamics of that relationship is also very important. So I think just their presence and a sense of feeling like they're an integral part of the team and to educate staff and to make sure that they're aware of who that key contact person might be and that they have permission, you know, to discuss patient care and clearance with HIPAA, you know, forms, et cetera. So that this way when the caregiver does have to step in, that they're again included as trusted confidants for the patient and the staff. And I would also say that what often gets forgotten from a caregiver perspective is the caregiver themselves and feeling supported. So to understand that it is a challenging and difficult journey for all of us and we're gonna move through it together. And again, I think really excellent educational materials in a language that the patient and the caregiver can understand. And then resources available, particularly local resources in the community is also very important.
- [Ashish] Yes, no, and an informed patient and an informed family I find are extremely critical when it comes to optimizing outcomes after any procedure, especially something as major as a radical cystectomy. Professor Catto, when you are counseling a patient and their family about cystectomy, could you share with us some of your educational tips and what you tell them as far as what to expect prior to surgery in the hospital, postoperative recovery, what's your sort of key points that you want our patients to know about?
- [Jim] Thanks, Ashish. Again, I try and empower the patient, their family, and their loved ones. But I also try and be informative and realistic. So we basically talk through the process. So we will point them in the direction of patient-driven literature. So in the UK, we have Fight Bladder Cancer, which is similar to BCAN. So it's a patient grassroots up organization that has a lot of really good information that's written by patients for patients. So we'll point them in that field. I really believe in prehab, so getting fit for surgery. So our talk at length about getting yourself fit. And I'll ask patients to walk for an hour twice a day and try and get out of breath whilst they're doing that. And explain to them how the more nimble they are before the operation, the more physically fit they are, then the quicker we can get them outta bed. And the quicker we get them out bed, the quicker we get them home. Our length of stay in Sheffield is about five to seven days. So I'll say you have about five to seven days of, and 8 out 10 people will go through that, a major problem. And then I'll say that, but we know it takes three months to get over the operation. So we've got data from iROC where we gave everyone a fitness tracker and it took about three months to get back to the same step counts per day as it did beforehand. So I'll point that it, you know, get fit for your operation. You're gonna be in hospital for five to seven days, there's a 20% chance that'll be longer, but after that, it's gonna take you 6 to 12 weeks to get over this. So just, you know, be realistic, make sure you've prepared at home, make sure you've got food and you've got loved ones who can help with that, but don't become a patient, you know, be empowered in this process. - [Ashish] Yeah, very important point. I think that's absolutely right on target. But Jim, you know, we are sometimes faced with patients who would like to have a radical cystectomy, would like to proceed with having a bladder taken out, but are not candidates, right? Either because of comorbidities or other things. Now, how do you counsel the patient on the reverse? How do you reassure them in some ways saying, well, yes, you would like to have your bladder taken out, but for you, I think we have bladder-sparing options, what's your reverse sort of education there?
- [Jim] Well, my reverse education there is that bladder preservation has been around a long time. BCG, which is what we have in the UK at the moment as the standard care. It's effective. You know, we know from the recent randomized trials that it's very effective if it's adhered to and done in a controlled fashion and we're gonna monitor you safely. So you know, we are gonna watch for things happening and you know, if it's that you are not fit enough for something that's reversible, perhaps we have a year to try and get yourself fitter for this. Perhaps have a year to try and either lose weight, get your blood pressure under control, improve your diabetes, improve your exercise tolerance. But you know, we have to monitor you carefully and watch you carefully, and you are in safe hands. And you know, statistically, the odds are in your favor. As we heard from Doug, progression to invasion is the key driver here. And that happens in about 25 to 30% of patients. So conversely, it doesn't happen in 70% of patients, certainly in the first few years. So, you know, the odds are in your favor, but you do need careful monitoring and maybe use this window to try and get yourself hitter so that surgery or radiotherapy will be an option for down the line.
- [Ashish] You know, this is such an important topic. We could continue to talk forever, but obviously, we can't. And in the interest of time, let me give each one of you, there are three of you here. Let me give the lady first, Camille, the option and the opportunity for a closing statement, and then let's do Doug and then Jim. So Camille, you first.
- [Camille] Well, first of all, I would like to say thank you, and I am just honored to even be able to have a conversation with both Dr. Kamat and Dr. Catto. And in closing statements, I would just like to say that patients and caregivers who are supported, who are given proper materials to walk the journey with their doctors and with excellent communication and access to their care, I feel, will have a much more successful outcome. To understand that it won't be an easy road as Dr. Catto noted, and that they're not alone, that they do walk the journey together, that they'll come through it and that, you know, we're all in it together. Thank you.
- [Doug] And I'd like to echo everything Camille said and just give one piece of advice to healthcare professionals to effectively communicate with patients navigating this area is to try to put yourselves in the shoes of your patient, understand their fears and anxieties, their risk tolerance, their priorities, their goals. Be empathetic to these factors when educating or advising them. And make sure to include caregivers in the discussion. And if you can do this, it will truly help build trust and confidence and make the entire experience better for everyone. - [Jim] And my final words would be that neither choice is wrong or right. It's working out as Doug and Camille have said, what's the right choice for you?
And then as the health professional, making sure you put a safe environment around the patient. So you either do the cystectomy to the best of the team's ability and you have a good outcome or you monitor their bladder really carefully having these treatments so that you can pick up the worsening disease in a very timely fashion. - [Ashish] This was wonderful. Educational for me as well, and a really wonderful discussion. Thank you each and every one of you for taking the time and joining us and thank you to Medthority for allowing us to have such an important episode of the podcast. - [Camille] Thank you. - [Doug] Thank you.
Developed by EPG Health. This content has been developed independently of the sponsor, Pfizer, which has had no editorial input into the content. EPG Health received funding from the sponsor to help provide healthcare professional members with access to the highest quality medical and scientific information, education and associated relevant content. This content is intended for healthcare professionals only.
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