Managing High-Risk NMIBC
Transcript: Alison Birtle on patient fears in NMIBC
Alison Birtle, FRCP, FRCR, MD, DipLCM; Melanie Costin; Ashish Kamat, MD, MBBS, FACS
Podcast recorded October 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 the podcast "Expert voices navigating non-muscle invasive bladder cancer." This podcast is titled "Conversations with patients: Recurrence in the bladder cancer journey and navigating psychological support." And it's my distinct honour and privilege to be joined by two true stalwarts of this topic, professor Alison Birtle and Melanie Costin. So, ladies welcome and thank you for joining us today. - [Alison] Yeah, it's a real pleasure. - Hello. - So, let me ask you, Melanie, first the question, right? So when you were first diagnosed with, or when you heard about the diagnosis of bladder cancer and you heard about the possibility of recurrence, what did that mean to you and how did you make sense of it over time? - [Melanie] With the thought of recurrence, your initial thoughts are when something comes back, that's pretty much it. Because you know, you're trying to deal with the fact that you have a cancer in the first place to think that it's gonna come back. And the fact that bladder cancer does come back so often, it's really, really scary. You go through all sorts of feelings, but mainly it is, well, I'll deal with what I've got at the moment if it comes back, there's probably not a lot I can do. - [Ashish] So that's interesting, Melanie, that you say that, because you know, of course when we talk about recurrence with non-muscle invasive bladder cancer, it's not the same as recurrence in, for example, metastatic disease, right? There are other options and there are other alternatives. And that's a perfect segue for me to ask you, Alison, when you are approaching a patient with early stage disease, non-muscle invasive bladder cancer, do you make a distinction between talking to them about recurrence in that arena versus when you're dealing with patients with metastatic disease?
I'm sure you do, but what distinction do you make? - [Alison] I think the really important thing is to distinguish between is to use the right language. So in advanced bladder cancer, we're often talking about disease control depending on the circumstance. But with earlier bladder cancer, with non-muscle invasive, then when we talk about recurrence, we're talking about things that aren't immediately life-threatening and patients just hear the word cancer and they think that they're going to be dead within a limited number of months irrespective of the situation. So what I have to do is sort of try and unpick that and explain that this isn't an immediately life-threatening cancer that we're hoping to be able to, for many of these patients, keep them alive and well with no sign of recurrence for as long as possible, and the cancer may never come back. And for some of them, if it does, there'll be other treatments that we can use. And those treatments will try and slow the rate at which the cancer might come back or it might change to become something that needs more intensive treatment. But it's about the language that we use in the first consultation's really important to get that right. Because, you know, understandably people think that if a cancer comes back, they will die. That that is then terminal. And of course for our patients with non-muscle invasive disease, that really isn't the case.
- [Ashish] Yeah, absolutely. I couldn't agree more. I think that first consultation with a patient where we sort of lay down the definitions, the expectations, what to expect, not just with our patients, but even their carers is very important. And Melanie, do you think that there's anything that if you had heard differently in the early phase of discussion, would you have made you less afraid, so to speak, of what to expect? - [Melanie] Definitely, because I didn't really get any explanation, when I had my diagnosis I was told that they wouldn't cure it, but they would try and treat it. So all you hear is okay, it's not gonna be cured, they're gonna try and treat it. That's all I was told. So at that point, with no explanation, I come home, and what's the first thing that you do? You try and find out for yourself. So the first thing you do is to go online and you find out all sorts of things that are not relevant to you at all. Some of them might be, but you don't understand anything at that stage. So I think it's really, really important to have a clear, well be honest, it's the honesty that people really do appreciate and that kind of thing will give you that reassurance that you need at the outset. Because if there's no explanations, then people will search for them themselves. - [Ashish] Yeah, no, and I really apologise on behalf of all of us that treat bladder cancer, that you were not given the appropriate counselling to begin with 'cause it really makes a big difference. It's teamwork, right? It's us taking care of patients, patients working with us to help us help them fight their disease. And you know, Doctor Birtle has been very vocal about giving patients all the tools and knowledge that empowers patients to be equal partners in this whole journey. I mean, in fact, it's very important. So Alison, let me ask you, when you are talking to patients about difficult decisions, right? Such as whether to do TMT or radical treatments such as radical cystectomy, how do you frame that discussion with the patient? And especially if we're talking about female patients, gender specific impacts and emotional effects? - [Alison] It's always going to depend Ashish on the stage of the cancer, isn't it? So, and also someone's priorities. So if we're looking at non-muscle invasive bladder cancer, it's going to depend on someone's level of functioning. In women, they often present later, and with this, you know, history of often ignored multiple urinary tract infections, which means that their bladder capacity might not be so good, they might have very irritable bladder symptoms.
And for them they may find that actually giving treatment that goes into the bladder giving BCG or something similar, that's actually gonna make their quality of life worse. But they're so scared of stopping treatment that patients hide their side effects from us because they're terrified if they stop, they're going to progress the following day. So the main thing I do in that first consultation or in follow-up is I talk about, and particularly if we're making choices between surgery and a bladder preserving treatment, whether that's intravesical treatment in non-muscle invasive disease, or whether that's trimodality treatment for muscle invasive disease, I need to find out where are their goals and priorities? So if their goal is to have a, sometimes people will say, I just wanna get rid of my bladder, I want it out. And then I find out is that because it's causing them symptoms or is it just because they're scared and they think surgery is the best or potentially the only option? If it's the latter, I have to unpick that and look at and say, well, there may be other treatments that are just as good for you. These are what they look like and these are what your expectations from that might be. If it's the former or if it's really that they've got dreadful symptoms and a small capacity bladder, then their quality of life is probably gonna be better served by having a cystectomy at that point, as long as people understand the implications of that. And of course, for women like myself and for Mel the thing is, it is a very different operation in women than it is in men because of the need for doing, you know, more removal of some of the pelvic organs and particularly things that affect sexual function in terms of taking out, you know, part of the vagina as well. And many of my patients do use the word, and these are, I have to say Ashish, they're never your patients obviously.
But often people come up with a word like mutilated or violated and it's the self-esteem. And I think sometimes it's the preparation ahead of surgery hasn't been well dealt with on that particular aspect, on the psychological and the psychosexual aspects by the person who was counselling them beforehand. And I think as a community, we need to work much better on that level of information giving. - [Ashish] Yeah, I couldn't agree more. You know, we did a global survey through the World Bladder Cancer Patient Coalition, and one of the things that really was appalling, not surprising, unfortunately, but appalling for us to confirm was that more than 75% of patients who had had a radical cystectomy had never been counselled on any bladder sparing option, and even as appalling was that the women who'd had a radical cystectomy, the vast majority had never been counselled on the sexual side effects, right? The functional, the sexual side effects, really disheartening and really a call to arms for us to do better. Melanie, listening to what Professor Birtle and I have just discussed, right? Could you share with us your insight into what all you from a patient perspective would want to hear from your physician at the first or maybe second or third meeting, right? Because at the first meeting you are hearing the diagnosis and what to expect, but at some point early on, how much information is too much information and how much information is just enough?
- [Melanie] I think it really does depend upon the treatment that they have planned or the idea that they're planning for you. Because for myself, I wasn't a candidate for bladder removal, even though I had two types of high grade and I was in a very poor situation at the time. I think obviously, you know, you've spoken to a lot of patients and it is in one ear and out of the other ear a lot of the time, so I think it's not, it's not a case of overwhelming people with facts, but they do want to know things. So the best thing to do really is to signpost people so that when they've left your office, that's the point they can really have a look at what's what and see what is, what might happen to them. And I really feel like this is the point that patient groups really come into their own because it was only from the patient groups that I got my information and it was peer to peer support that was the most helpful for me. And patient groups these days, they do lots of things. They have lots of explanations, you know, their own information booklets and it's done in a sort of language that people can take on when their brain is so full. Because honestly, it's very hard to understand things. You don't understand the terms, you don't understand what the future is.
You know, you're also worrying about your partner, the person that cares for you, how much you want them to know, how much they worry. It is just a ball of emotions and I think too much information in the office is not good, but no information is even worse. So for me personally, I think honesty and clarity and signposting somewhere that I could go back home and look up all the bits and pieces that I needed to look up. - [Ashish] Yeah, Mel, I think that's great insight because you know, we should use patient support groups more as a supplement and a compliment to the discussion that we have with patients rather than just, for example, telling a patient, oh, you have bladder cancer, now go online and look all this up, right? Because that is not the way to provide our patients with the best supporting information. But you've raised a very, sort of a subtle point when you were talking to me, and let me probe you a little bit. So as a patient, when you are thinking about the side effects and you're thinking about maybe stopping or changing treatment, for example, BCG, how did you work that thought process out in your mind? Did you feel like, and I don't wanna put words in your mouth, but did you feel that if you admitted to too many side effects, you would be depriving yourself of a treatment? - [Melanie] Yes, very much so. Actually, for me, the treatments, it wasn't very nice at all. You know, sometimes with a lot of people, the first one is okay, but then it sort of gets really nasty and you're at home, you're on your own and you're wondering what earth you're doing it for. And I personally found it absolutely awful, but I was nervous to tell my nurse how it was going because I thought if I moan too much, they're gonna say, oh, well, you know, we'll stop the treatment. And I know a lot of people are like this, that they just pretend it's a lot better than it is, rather than explaining what's really going on. But the problem is for me is that treatment did have to stop because of serious side effects in the end after six months.
And then everything really changed because at that point I still wasn't getting any improper information from my team. And as far as I knew, I had a treatment plan that was gonna go on for like two and a half years and then monitored forevermore and suddenly you aren't allowed to have the treatment because of a serious side effect. Then you really, it's so scary. You have a huge load of emotions. I was like scared and I was, I felt really sad, like, oh, no, that's it then. And I was really cross, I just thought, well what now? And there wasn't any explanation at all of what was gonna happen, what other treatments there were. Where the treatment stopping meant, that's it. Everything stops. So as much as you don't like the treatment or want it, you know, you've gotta have it. And when it stops, it changes everything. It isn't very nice at all. - [Ashish] Yeah. Alison, I mean again, you and I face this all the time when we have patients that come in from elsewhere that have been not given enough information and think that if you report a side effect that's the end of that road. They haven't been counselled on the fact that we can do things to help alleviate some of these side effects from medications. I know you have a very good way of explaining to patients what to expect, why not to withhold information. Could you share with us your dialogue as to how you approach that with a patient? - [Alison] So it's an extension really of how when we're talking about different treatment options. So, you can either... One extreme is somebody wanting the maximum possible treatment for their underlying cancer and being prepared to accept every single side effect going. The other extreme is somebody who is prioritising quality of life and doesn't want any side effects at all. But then of course what will then happen is that their cancer's going to be undertreated. So that's the way that I just start a discussion and say, and we have to work out where along that line, your priorities lie. I said, because what I can't do is run the risk of me giving you a treatment that I'm responsible for, that I want you to come out the of the other side of as the best version of you possible.
And I can't make that happen unless I know everything that's going on with you in terms of how this is affecting you, how it's affecting relationships as well, how it's affecting you physically and emotionally because there are different things that we can do to try and help support you through this. Whether it's signposting you to a patient information group, whether it's giving you medication for side effects, whether it's giving you a bit of a break, but you understand that actually, you know, you are not going to die of cancer during that break. Whether it's looking for different alternatives that might suit you better. And whether it's also about trying to look at the other aspects about, you know, I talk to my patients about diet and exercise and also we signpost them to some of the local resources about psychosexual health and psychological wellbeing as well. We're lucky to have some of those run by local charity groups within different areas in the UK. So I think the idea of just saying to a patient, you've got one treatment, this is what you're having, this is what you need, suck it up, is really, you know, I have one job to do and my job is to do that well. And part of being able to do that well is to be comfortable that I've explained all of the pros and cons of treatments and I know where my patients' priorities lie. - [Ashish] So Alison, let me probe you a little bit more on that because, you know, it used to be for non-muscle invasive bladder cancer, we really didn't have too many options. It was either BCG or ineffective intravesical chemo or radical cystectomy, but now we have multiple options.
Systemic therapy, for example, pembrolizumab was approved in the United States, there's others that are systemic and intravesical. So a whole range of options and more coming down the path. How do you factor these, multiple treatments when you are talking to a patient that presents in your office? Do you give them all the options upfront? Do you tell them what you think is the best and let them choose based on your recommendation? How do you approach that? - [Alison] Well, to be honest, it's pretty easy for me because we haven't got anything extra approved at the moment in England. So we're still with BCG, with all of its, you know, all of its difficulties with access and its difficulties with tolerability in non-muscle invasive bladder cancer. But I'm hopeful that we may have, you know yourself, there's a plethora of options, many of which are from phase two studies, small but approved by the FDA with different quality of life and different endpoints in those studies. And we have at least one current, well-designed phase three study that's published its results with a couple more on the horizon imminently. And if I had access to all of those, bearing in mind that they all come alongside BCG, what I'm going to say to somebody is that this is potentially more toxicity, but potentially reducing your risk of recurrence and then talk to them. So say with some of the systemic treatments using sasanlimab in addition to BCG from the CREST study, say, look, these are what the potential side effects might be.
And these are, you know, usually very manageable as an oncologist we've been giving these sorts of drugs in more advanced bladder cancer and other tumour types now for over a decade in other tumour types. And so we know how to manage them, but about 10% of patients do get side effects over and above what you might get with BCG and realistically you're not gonna avoid BCG. But it does give us an option to try and build on the results of BCG. I think it's an evolving field at the moment 'cause I don't think all things are not equal in the world of non-muscle invasive bladder cancer. When we look at the data we've got, even though treatments are approved, some are based on much smaller studies and less well-designed studies than others. So although we have a plethora of options, I think the other thing is what's somebody's bladder function like? What are the rest of their comorbidities? Are there reasons why you might choose one treatment rather than another? It's a bit of a minefield. And then we have to add into the fact that if you are giving, say a combination of intravesical treatment and systemic treatment, those are gonna be given in different places by different people in the vast majority of hospitals. So there's quite a lot of logistics and things to work out as well. Now that's not to say it's not possible, but I think as a community we have to work together to see how best oncology and urologists can work out a pathway before any patients go through it. Because what you don't want to do is make it so hard that your patient just says, well, you know, I'm not gonna do that because there's too many things that could go wrong.
- [Ashish] Melanie, I'm gonna ask you a question to build right off on that and then let me give you a little bit of background. So, you know, there are treatments like BCG, which is once a week, and then you do maintenance every six to 12 weeks, three weekly installations. There are other drugs that may not be quite as good but will require you to come to the office, say only once every three months. And then of course, as Professor Birtle mentioned, there's the supercharged treatment where you give BCG plus something, you get a little better efficacy, but it's a lot more involved and intense for the patient. So how do you factor or as from a patient perspective, how would you factor in life, work, family, all of those aspects, when it comes to selecting the intensity of treatment versus the efficacy? What's the trade off there in your mind?
- [Melanie] Yeah. So firstly, when I heard that there were so many treatments, my eyes was popping out here. So, Alison confirmed the fact that the reason we stick with BCG a lot of the times is because we know there isn't anything else. So when you start thinking about options, it can be really difficult to make an option. Sometimes it's great to have choices, it really is, and we all want them. But actually making a choice is extremely difficult. So for me, I tend to, I get a lot of peer support. I see what other people are doing and see what their outcomes are and you know, you sort of put trust in people that have been there beforehand. But I also do think about life in general. It's not just the person having the treatment, if you have someone caring for you, it's about them as well. And you know, treatment can get really expensive. Not the cost of the treatment, but the actual doing it because there's a lot of going backwards and forwards to the hospital. We don't all live nearby. Huge parking costs cost me a fortune just going in and out, one week I had to take blood tests in every single day, which is fine, but you know, the pathology was so far away that my parking bill was gone up into the next bracket, so I was practically charging down the corridor. It's really small things that you would think, why are people worrying about things like this? But over time it builds up and you do start thinking as well when your quality of life starts changing. I've actually taken the odd break to go on a holiday, I can't say that I enjoyed the holiday 'cause the whole time I was thinking, oh, God, have I done the right thing taking this break?
But sometimes you do make those crazy decisions just because you want a bit of a rest. So I think for me, a gap between treatments, you know, if there was something that it was stretched out, it would give you time to not only physically recover a bit in between, but also mentally, you know, the thought of going in and backwards and forwards and always feeling like a hospital person is not really for me. So there's a lot of things to think about - [Ashish] Yeah, that's very appropriate. Yes Alison, go ahead. - [Alison] I'm just saying, I agree exactly with what Mel was saying because when we talk about cost, we just think about the drug costs and reimbursement, but actually it's the cost of the patient in terms of time off work, caregiver responsibilities, travel time, parking, all of those bits. So for something where perhaps, as you said, you described it as the supercharge version, which is adding in more visits, different, different departments and things, it's trading off that fairly modest benefit with all of those things on the other side in terms of extra visits.
And that's where they, I think we pay lip service to the term shared decision making very much at our peril because it has to be, you find out then, what is someone's priorities? Will they accept potentially a small trade off in terms of efficacy? Bearing in mind we are not talking about, a treatment that's going to be making somebody who wouldn't have lived live for longer. These are patients who've got, in the main, they've got, you know, good life expectancies, we wanna minimise side effects and turn out at the end of treatment the best possible holistic version of them that we can get. And so it's about finding out, where someone's priorities lie, will they accept lots of side effects and inconvenience for a small extra benefit, or are they right at the other end of that and go, do you know what? I don't think it's worth it. And that's where we have to talk to our patients and their caregivers. - [Ashish] Yeah, I couldn't have said it better. I could not have said it better. Melanie, during your journey, were you offered for stuff preemptively any sort of psychological support? And if not, did you have to seek it out on your own? What was your journey there, and what would you recommend to patients and us treating physicians?
- [Melanie] Yeah, so, no, I wasn't offered any psychological support. You do find that people concentrate on the disease and making you better, but they don't actually realise that the mental health side of things is extremely important. And you know, hearing Alison, it is just perfect because patient's values and daily lives are part of the treatment decision really. And to get the kind of the help, the mental health support for, I would actually say that finding a forum of other people was the best support for me because I could talk about things and when somebody said, oh, yes, this happened to me or whatever, it didn't make me feel physically better, but it made me feel so much more mentally better. You saw that other people have been through something and can get through it is so important. And you can chat about all the silly little things that you wouldn't want to talk to, one of the healthcare professionals about, day-to-day living over here, particularly in the area I'm in, I can obviously speak for getting any kind of counselling is really, really difficult. And it would be time consuming as well. You wouldn't get it straight away you'd have to wait for quite a long time. So, when you have a support group, you are not isolated. It's a really lonely illness, bladder cancer, and you're not isolated and you can pick up all these kind of coping tools for those really hard days. It's immediate. Immediate help, it's free, it's deeply understanding, you know, people really understand they're on these forums because they want to be there. And so for me that was is what I would recommend to anybody else and I really would, I really mean that, it's really meant everything and the people have the time for you.
You obviously you would like to get the professional help, but actually there's not really the time for that because there's so much, you know, with it is all hospital based and medical based that there isn't really a great deal of time to spend thinking about the mental health side of things, but there isn't a lot to offer either. So no, there wasn't any, not any professional help, but what I got was really, it worked for me. - [Ashish] You know, that's very important for us to hear. And podcasts such as these are clearly very, very important for folks to disseminate what we are talking about. You know, we could talk about this forever, but we will have to close. I'm gonna give both of you one final question and please answer it in the following manner. So Alison, I'm gonna ask you if you have one piece of advice to offer to patients, what would that be?
And then Melanie, you can close with your advice to physicians. So Alison, first you advice to patients. - [Alison] Have as good a relationship as possible and please tell us about side effects and share what matters to you and your concerns. Because if I don't know any of that, I can't help. - [Ashish] Very, very important advice, and Melanie. - [Melanie] Well of course I don't just have one piece, but I will give you one piece of advice and I know it's been covered, but you know, don't just listen to the medical symptoms and think about those, but listen to what the person is really scared about underneath and people are not gonna remember everything that you tell them, but they will remember how you've made them feel and if they feel safe and confident and mainly if they feel heard. - [Ashish] That's true of a partnership in life and in medicine. So, very well said. Thank you both of you for taking the time and joining us in this podcast and we'll see you soon. - [Alison] Thanks ever so much, bye-bye.
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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