Transcript: Surprising NMIBC lessons from CISTO
Stephanie Chisolm, PhD; Janet Kukreja, MD, MPH
Interview recorded June 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.
We put out a survey through Beacon's Patient Survey Network, the PSN, and we had over 1,400 people involved in that survey mechanism and really began to fine-tune what really were the critical issues that patients wanted to know. You know, which was a better treatment option? If you don't respond to BCG, is it better to take out your bladder or is it better to go with bladder-sparing treatment? It really helped to narrow it down in terms of the kinds of issues that were really at the forefront for the trial, like quality of life overall, your ability to physically function after treatment, emotionally, how you're gonna deal with life with or without a bladder, and even the uncertainty of having cancer come back. Certainly the key issues that are involved in cystectomy like urinary bladder and sexual and bowel health were really important in the conversations and in some of these different surveys that we did. And then ultimately looking at survival was a big deal.
- And I think most urologists can really help patients tailor their treatments to their values. And I think that this just really brought forward, you know, different patient values than maybe some people kind of saw from the outside. I think it's really, you know, easy to have one patient experience really colour a lot of our conversations, you know, especially with a very emotional experience. But I think this was really good at calling out that in general, maybe sometimes the way that people think about things is different and as a group and the perception is very different than what I think a lot of people thought it was gonna be.
- Another really important part that I just wanted to bring up was, in doing those initial surveys, one of the questions that came out was, would you be interested in being in a clinical trial where you were randomised in your treatment? And overwhelmingly, most patients said, "No, we wanna be able to choose." And that's where it really began to focus on what the patients really wanted. When they do a radical cystectomy, they take away some of the other organs in the pelvic area. So for men, that includes the prostate, seminal vesicles for women. It could include a shortening of the vagina, taking away the cervix and the uterus and the ovaries. So it's a really major surgery. So looking at it from that perspective, being able to handle, first of all, that really major surgery is such a critical piece. And the fact that some of those things have long-term implications in terms of sexual function and incontinence and bowel function. And I think a lot of patients are afraid of those things. If patients don't have a concern about their sexual function, maybe that does make that choice a little bit easier for them. As some patients have told me, well, that ship has already sailed. I'm not sexually active. I don't worry about that anymore. And so, you know, if that's not an issue, the couple of characteristics that seem to be concerning with having the radical cystectomy that were favouring maybe more of the bladder-sparing technologies that are out there, the different medical treatments. But overall, I think everybody was very surprised at the quality of life and the emotional and psychological feeling like they've done something very significant to tackle the cancer and get rid of it.
- The hypothesis was, patients would have worse quality of life after radical cystectomy compared to continue medical therapies, like intravesical treatments. It showed that a lot of things were fairly even after the patients had recovered from radical cystectomy. The emotional, psychological health was better, financial wellbeing was better, physical functioning was the same. The one thing that I think Stephanie mentioned was the sexual function part of it. And that was kind of a standout as something that I think that we can impact and take from this and alter in our practise. And, you know, there are several practises out there that have men's and women's sexual health providers. And I think it's a great opportunity for us to incorporate our specialised colleagues into the recovery and focusing on, all right, if radical cystectomy is going to be a very prominent treatment in this area of disease, let's focus on the things that we heard that we can improve for the future. It's interesting, like, when you talk to patients and you talk about, you know, studies and trials and stuff like that, sometimes depending on the patient, they have to have something framed in a certain way. So I do find that if I say a trial results and I kind of get like a little bit of a blank stare back, I try to rephrase it in a way that makes sense. And I think, you know, trying to phrase this like, "Hey, by the way, you know, we talked to a whole bunch of patients and actually, after the surgery, it seems like there are a few areas that patients do really well in that exceed that." And I think, you know, truthfully, I think patients sometimes don't understand the psychological, emotional wellbeing part. The financial part they definitely understand, right? When you say, "Hey, like, people felt financially better after having their bladder removed than continuing, you know, intravesical treatments or other stuff like that," that does resonate with a lot of patients. And I think we often forget about the cost piece of, you know, what this cancer treatment does to the pocketbook of patients.
- Well, you know what, I think that for a lot of patients who are on the fence, they don't know. They think, "Wow, that's such a big surgery. How am I going to live without my bladder?" They don't realise that you can live a pretty full life without a bladder. Understanding that the quality of their life can be good. And many of those differences that happen between, you know, the bladder-sparing technologies and then the bladder removal can be mitigated in the long term. And the survival rates are really good. And that I think they need to understand that life goes on. It's just maybe a little bit different, but it works very well, and it does help to treat the cancer and hopefully reduce the risk of it ever coming back or progressing.
- Yeah, and just to add to that, there's a small segment of patients that are quite miserable from their bladders. They all have a lot of urgency and frequency, not usually just after BCG, can happen after just BCG, but after repeated intravesical treatments, a lot of people have lower urinary tract symptoms. And after bladder removal, they're like, "Oh, my gosh, I can sleep through the night. This is actually really valuable to me."
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