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Shilpa Gupta: Hello, everyone. I'm Dr. Shilpa Gupta, medical oncologist at the Cleveland Clinic. And it is my honor to be joined by Dr. Ashish Kamat from MD Anderson. He's the president of the International Bladder Cancer Group and a professor in urology at MD Anderson.

And I was fortunate to co-chair the Young-Onset Bladder Cancer session at the BCAN think tank meeting in August 2024 with Dr. Kamat, and we are here to discuss what steps we are taking to address this unmet need. Welcome, Ashish.

Ashish Kamat: Always a pleasure to be here. And wasn't it such a great session that we had at the think tank? Because this is something that you and I and, of course, the BCAN leadership has talked about for many years. And we're seeing more and more young patients getting bladder cancer, which, if it's one a year, that's one thing. But now it's almost—at least I'm sure your referral and mine is one a month. And that just deserves a whole separate discussion. So I'm glad we were able to do this.

Shilpa Gupta: Yes, absolutely. I think it was a long time coming. And every clinic day, I actually see someone yet less than 40 years old. And I remember you mentioned your youngest patient was a teenager, in fact.

So, as you know, Ashish, in the think tank meeting, we wanted to, first of all, brainstorm what is the definition of young-onset bladder cancer because nobody has really defined this category. And we were fortunate to have Dr. Benjamin Schlechter from Dana-Farber, who's really co-led the program on the young-onset colorectal cancer there. And there's a lot more research that has been done in the colon cancer world.

And it was interesting to see how they have set up that. And what would you say were some of the things we could adapt from their experience from the colorectal world? Because they've done a whole lot of work over the years.

Ashish Kamat: Yeah, I think it was very interesting to hear their perspectives on how they've evolved their thinking of this disease space. The one thing that struck us, though, was when we asked them how they came up with the definition, it was purely arbitrary. It was based on the age of screening.

And of course, for bladder cancer, we don't have any such age of screening. So it was more of a show of hands and a consensus. And I think not just at the meeting, but later on at one of the IBC offshoots, we did that, too. And most of us agreed that we have to pick a number, and it has to be some number that makes biological but also practical clinical sense.

So 50 seemed to be the cutoff. That's not to say if someone's 51, they're not young, right? But I think we decided we're going to choose 50 as the age to say, OK, if you're under 50, then it's young-onset bladder cancer or young-onset urothelial cancers, and to include everyone with upper tract as well.

And of course, if you're very young then that's a whole different thing. And we could always subcategorize. But 50 seems to be a good cutoff.

Shilpa Gupta: Right, and I agree that was the consensus, to be more broad rather than be restrictive. And then we can tease out very young and things from there. And I thought it was a very interesting perspective from the colon world and also how they were coming up with the risk factors in the teenagers now—sedentary lifestyle and this and that. I think it will become something we'll have to look into for our bladder cancer patients.

And our second speaker was Jeffrey Damrauer from UNC, who talked about the genomic landscape in general, not necessarily focusing on the young onset. And where do you think we are—are we there yet to talk about genomics in the young cancer patients yet, or there's a lot of work that we still need to tease out as to what there may be differences and how it will impact?

Ashish Kamat: Yeah, I think you and I share the same suspicion as many of our colleagues listening in, that there has got to be something different about the tumor genetic profile in young-onset bladder cancer, whether it's in the very young or the in-between or everybody. We don't know.

So there's a lot of work that needs to be done. I think—kudos to the group from Foundation Medicine, and you and I are both fortunate enough to collaborate with them, where there is some work that is going to be presented at GU ASCO coming up. So I think that's something to be tuned into.

But absolutely, I think—my suspicion is there is going to be something. Whether it's targetable or not remains to be seen.

Shilpa Gupta: Right. And I think we have so many resources now to tap into to look at the genomics globally, not just even in our databases, that we can really get this going. And then I think the most important aspect, Ashish, that you and I did was talk to our young patient advocates who are actually going through their journey.

And one of them actually was so kind to give us her time despite going through treatment for her metastatic disease. And do you want to share some of the challenges that you think these patients face? Especially as a surgeon, you have unique challenges with them. As a medical oncologist, we have unique challenges about fertility and talking about all these different things. What would your takeaway be?

Ashish Kamat: Yeah, I think it's always critical to focus on what's important to our patients. And patient-centric care really ends up being the best care, I think, because oftentimes, you and I, we may think we know what the patient wants after having treated thousands of patients. But things are evolving.

And to hear from both the patients about what's important to them, what's important when, for example, she was going through pregnancy issues, and listening back to the whole journey of the decision between a neobladder or not, and lifestyle changes, fertility—all of that brings to the forefront several clinical points and questions that we always have to keep in mind.

And I think you and I do this in the clinic anyways. But we have to make these research questions, right? Because if you feel, for example, that cisplatin might not be appropriate for someone who's young and may want to do dancing and piano down the road, I think that's right. But we have to ask the patients: is that something they want to trade off between cure and time and things like that? And same thing for me—I assume that a young patient would want the neobladder. But I've had many young patients tell me they don't want a neobladder, they don't want to mess with it. And I have to understand and not try to force them to have something just because I think it would be good for them.

So listening to the patients—and obviously, we don't have time to go into all the details that they shared with us. But I think that was really, really important. And moving forward, I know that in the project and the working group that we have going on through BCAN, through IBCG, any other organization that wants to join, we are always going to make it a point to have a patient advocate as an integral part of that group.

Shilpa Gupta: Absolutely. That's why we do what we do, Ashish. And I think—I was really excited to see the momentum that we set forward. Right after the meeting, we had all these people who were interested in becoming part of our working group for the next steps. And we already have had two or three meetings, as you know. We've come up with the age cutoff of 50, and there's a lot of brainstorming going on.

And, in fact, for our next year's think tank, which we are seeing the changing face of bladder cancer, this will be even a bigger session where we'll have more input and progress. And Stephanie Chisholm has actually now, with our input from our working group, designed really a very comprehensive survey for patients, which we plan to roll out to understand what their unique challenges are.

And, Ashish, I know you've done work with the World Bladder Cancer Coalition if you want to share some aspects of how these things are kind of very important to get the patient's voice out there.

Ashish Kamat: Yeah, no, thanks for asking. And thanks again for reminding our audience about the work that's going on. But I think sometimes we look at what's happening in North America, and we don't necessarily pay attention to what's happening in other parts of the world. But bladder cancer is truly a global disease, right? And this survey that we put out through the World Bladder Cancer Patient Coalition targeted 45 countries and patients and carers in those countries to understand what's important to people on a global scale.

And that was very important. And it's been published. It's freely available to anybody that wants to look at it. And what it's done, it's highlighted certain key aspects that we can focus on to improve care for bladder cancer, one simple thing being, for example, you were part of this effort that we did in Chile, where we talked about the bladder cancer guidelines and helped them with their guidelines at the Ministry of Health.

What's important in Chile, where you may not have access to a few drugs, is completely different than what's important in North America, for example. So I think similar to that, with the young-onset bladder cancer survey, which will initially focus on North America, but I hope we can get the insight and input from other countries, because we might learn so much when it comes to etiology, management, other things, that we can then translate not just to North America, but truly to a global audience.

Shilpa Gupta: Yeah, absolutely. And I think our vision with that survey is not to restrict it to young patients. It is for everybody. And then we can tease out. So we're not doing redundant efforts for, for example, very old patients, if that's a category we want to look at.

So I think this is really great that we had this inaugural session this year. And now we are going big with the momentum and hope to make a difference in this huge area of unmet need. And thank you for partnering with me on this, Ashish.

Ashish Kamat: Oh, it's always a pleasure, Shilpa. And I just want to make a plea to anyone listening in. If you have a special interest in this field, if you have a database that exists, if you've done work already and we just haven't had the opportunity to acknowledge you, please reach out to us. You can reach out to us through UroToday or BCAN or IBCG or directly to me or Shilpa. I'm volunteering Shilpa. But I think you certainly—please reach out to us.

Shilpa Gupta: Thank you. Have a great day, Ashish.

Ashish Kamat: You, too.