Read the Full Video Transcript

Ashish Kamat: Hello, everybody, and welcome to UroToday's Bladder Cancer Center of Excellence. I'm Ashish Kamat, and I'm joined today by Professor Roger Li, who has been on this platform many times, spending a lot of time sharing his insights into novel therapies and trials.

And today, Roger, thank you for taking the time and spending it with us today, talking about something that's a little bit more near and dear to everybody's heart, that is taking care of patients with BCG-unresponsive disease, right? Striking a balance. How much is too much? How much is too much bladder cancer treatment? How much is too much surveillance? And essentially, this is a workshop and a plenary session that you led at the most recent BCAN Think Tank, which was in San Diego.

So the stage is yours.

Roger Li: Thanks so much, Ashish, again for giving me the platform to talk about this panel session, which was very instructive for me and very engaging for me, even though two of the patients who were on that panel were actually my patients over the years. But it's very nice to just hear their side of the story and to see how they deal with each and every step of their cancer journey.

So as you mentioned, we really wanted to talk about patients who have BCG-unresponsive, as well as muscle-invasive disease, to really understand what it is that made them make their decision on whether or not they go for a radical cystectomy or extirpative surgery, versus a bladder-sparing approach.

And we started off the session, obviously, with an introduction. And as you know, patients, when they're given the diagnosis of cancer, it can really feel very lonely. They're left by themselves, they don't know what the future holds, and they are really very fearful of what the future holds and what their lives are going to be.

And so as physicians, and also from this patient's perspective, they, as well as us, really try to pull a lot away from the literature to try to inform them of the percentages of potential treatments, the success rates, and whatnot. But ultimately, for the patient specifically, you're still not going to be able to give them a definite answer on whether or not a treatment's going to work, or what their outlook is going to look like going forward.

And so because of that unknown, their lives going forward through this cancer journey are really like an emotional roller coaster. With each diagnosis, with each CT scan, with each cystoscopy, patients have a lot of anxiety not knowing what is going to show up that may actually change their lives on a dime.

And really, I think, as physicians, our job is to provide them with some comfort and some guidance, knowing that we're not going to be able to know everything about what the future holds, but to provide them with the information so that they can be empowered to make their own decisions. And I think that's one of the things that really emerged from our discussion at the panel session.

So at the session, we had four different patient advocates: Ms. Joan Young, who had muscle-invasive disease and elected to have trimodality therapy; Mr. Bob Ceroti, who was actually one of my patients. He initially enrolled in the SWOG1602 trial but did not respond to BCG initially and elected to have a radical cystectomy after he recurred with T1 disease; Mr. Greg Kemp, who also had BCG-unresponsive disease, who elected to undergo two rounds of bladder-sparing therapies, first with the oncolytic virus cretostimogene plus pembrolizumab, and then went on to gemcitabine and docetaxel; and finally, Mr. Doug McLean, who's been seen by John Gore and the folks down at UCLA. He initially enrolled in the N-803 trial and then also went on to docetaxel and gemcitabine intravesically.

So all their stories really had a lot of different twists and turns. And it was very, very interesting to engage with them to understand the emotional part of their cancer journeys as well.

Ashish Kamat: Thanks, Roger. Again, I was there with you at the panel, and I remember Mr. Kemp actually coming up at the start and reminding me that he'd seen me briefly. I had actually sent him to you, right?

And it's just a few of these things that patients often remember, like just that brief encounter. And you brought several of those points up to the forefront when we had these patients there, and they were sharing their stories.

What were some of the pearls from the discussion that came up that could help inform us? And when I say us, I mean the global community, because the audience right now is across the world listening to this video cast, right? What are some of the pearls that the patients shared with us that should drive both the research and how we approach them in the clinic?

Roger Li: Yeah. So one of the things that really stood out to me was the fact that these patients, they took a lot of time to do a lot of research, and obviously they came to us as well for guidance. But no matter how much of the percentages and the research and the numbers we can discuss with them, ultimately if they were to make their own decisions, they would be fine with it.

And that's whether it be they make a decision to pursue bladder-sparing therapy, like Ms. Young did. So she was actually offered to have a radical cystectomy but didn't really like the fact that her body image was going to change, and just the invasive nature of the surgery. And so she elected to go online and actually research the pluses and minuses of trimodality therapy, and took it upon herself to actually switch physicians so that she could pursue trimodality therapy. She ended up having a great success story from that and couldn't be happier with her life today.

And then on the flip side, Mr. Ceroti, he was very aggressive about therapy. So he was actually 83 years old at the time of his radical cystectomy. But even at that ripe age, he still didn't hesitate a bit about going through with surgery, just so that he could have the peace of mind of knowing that his cancer couldn't come back in his bladder anymore.

And I've asked him whether or not he had regretted that decision, knowing that there are a lot of bladder-sparing therapies that are novel and coming online that are also very efficacious. And he did not have any regret whatsoever because he did the research himself, he's happy with the surgical outcomes, and he's very happy with the fact that he doesn't have to think about bladder cancer five years out from the surgery.

So I think as long as the patients themselves take the time to really research their condition and also the potential therapies, and as long as they make the decisions themselves, I think that's the most important thing for them to have peace of mind.

Ashish Kamat: Yeah. I think that's a very important point because the key issue here is shared decision-making. And it's very important for people that are taking care of patients in general—here we're talking about bladder cancer—but in general, to help the patient understand the implications and the different treatment options, but also then guide the patient.

So that the decision is not essentially coming from us to them, or not even telling them, "Hey, go home and think about it, and just let us know," but actually a shared decision-making.

Because you highlight patients who came to the panel to share their stories. And usually what happens is, just like your reviews on Yelp or somewhere else, it's those that are happy who want to share their decisions. But there are many patients who are unhappy with the decisions they've made, and is it because they made the wrong decision from a cancer standpoint or a lifestyle standpoint? We'll never know.

So I think some of these nuggets that you shared highlight the fact that it's up to us to help patients make that decision, but clearly guide them. Because in bladder cancer, we do have the luxury of being able to try different treatments, and there's bladder-sparing and radical cystectomy, et cetera. But of course, we don't want patients losing their lives because somebody tells them, "Hey, I could do this," when it may not be the right thing.

Along those lines, did you take away from the panel anything about too much surveillance, too much treatment? "Hey, you as a community," and I mean now the research community, "Stop trying to sell us on 10% success rates or 15% numbers. We need things to change to where it's 50%, 60%, 70%." Any take-home messages from that perspective?

Roger Li: Yeah. So, you know very well, you gave a really great overview of just kind of the landscape of clinical trials in the BCG-unresponsive space. And it's really exciting to see all of these novel agents coming online, not only going through clinical trials, but also showing the efficacy so that they're being approved by the FDA.

And two of our patients here, Mr. Kemp and Mr. McLean, the fact that they still have their bladders intact years after developing BCG-unresponsive disease really is a testament to the different options that are available to our patients today.

But unfortunately, they did not ultimately gain a cure from their disease and had to go on to different treatments. And I asked them about just the anxiety that provoked, having to deal with a disease recurrence, even on a novel therapy. First off, even enrolling onto clinical trials, how anxious they are not knowing how effective the drug is actually going to be.

And they were very open with the fact that as long as they're well-informed, and as long as their physicians and the clinical investigators do a great job of monitoring their disease, that they would have no issues enrolling onto trials. Which is very refreshing to hear.

In fact, Mr. McLean actually commented on the fact that because he was a clinical trial patient, he actually got monitored even more intensely than had he not been on a clinical trial. So that was part of the reason for him to decide to enroll. So I think the monitoring, from their perspective, actually in some cases may be even more reassuring for them.

And then for Mr. Kemp, he also talked about just some of the toxicities that he had to deal with going through the different lines of treatment, how frustrating it was. But also at the end, listening to the urologists and conversing with them about his concerns, about their concerns, and weighing the positives and minuses of radical cystectomy versus continued surveillance. And ultimately coming to a decision that, hey, leaving the bladder intact still is worth the trouble.

And so I think there's just a myriad of voices here. But from all of their voices, I just really got the sense that as long as they make the decision, they're very confident in the current monitoring methods. Albeit that they know oftentimes their bladder cancers can be understaged, for instance, and that their diseases can be missed. They have a lot of trust in their physicians as well as in their clinical investigators.

Ashish Kamat: Great. Roger, once again, thank you for taking the time and sharing or summarizing the panel discussion that you led at Think Tank. It's a great message for folks to hear that patients really want shared decision-making.

And clearly, if the patient makes the decision, and it's the right decision, we have to guide them not to make the wrong decision. That's truly what gives them confidence in the fact that no matter what the outcome is, there is a sense of personal involvement, personal satisfaction, and a sense of ownership of their own healthcare. Which is really empowering both to the patients and their families.

So thanks for sharing your insights.

Roger Li: My pleasure.