Ashish Kamat: A warm welcome to everybody from the UroToday Studios. I'm Ashish Kamat. This is AUA 2026 and we're live in Washington, DC. And for me, this is a unique distinct pleasure to have with us, Gina Carithers, who's a dear friend, also the founder of UroToday and the person whom I look to as a guide in when I have difficult problems, including when we were talking about the bladder patient survey, which we just released here prior to the AUA this year. So Gina, first of all, thank you for joining us and tell us a little bit about why you agreed to moderate the session.

Gina Carithers: Thank you, Ashish. It's a pleasure to be here. And of course you've been a long friend and when you... Actually, the group came and asked me if I would consider being the moderator for the panel. This entire survey was around getting the urologist voices and the patient voices who are impacted or treating bladder cancer. And the fact that it was over 800 patients and 800 urologists who contributed to this, it tells you the significance, I think of the unmet need that we've experienced historically in bladder cancer and the interest in being able to capture the patients and hear what they have to say. And what was fascinating to me was this survey was not really around the challenges of bladder cancer.

Bladder cancer is the ninth most common cancer of the cancers around the world. It's significant, but it very rarely gets any voice. So for me to have the opportunity to be a part of getting that voice out, not just here locally, but then to also include the UroToday platform to be sure that patients and clinicians around the world could understand the unmet needs and some of the gaps that we see experienced by the survey. That was just a wonderful opportunity and there was no way with the work that I like to do that that would ever be anything that I would shy away from. So thank you.

Ashish Kamat: No, and I think it was great. And as obviously people know, UroToday has really been a staunch supporter of patients getting education out there and we partnered with the IBCG, which I'm fortunate enough to lead with BCAN, with the World Bladder Cancer Patient Coalition. And one of the earliest surveys that came out along these lines was the 2021 World Bladder Cancer Patient Coalition Survey that looked at more than 1400 patients across 45 countries. And then BCAN obviously had its new faces of bladder cancer that we featured on UroToday last year. But as you mentioned, this survey was unique in the sense that it not only asks questions of patients, but questions of the urologists that are taking care of the patients. And one of the things that surprised me, and I want to ask your opinion on this, was that the patients felt like they would be letting down their doctors if they complained about certain things bothering them. You made some excellent points during the panel about this, but share with our audience your take on that message.

Gina Carithers: Yeah. Thanks, Ashish. First of all, it was wonderful to see that clinicians and patients were asked about that, right? But I think inherently we forget that as patients, when we become patients, we feel a sense of we lose our voice. We no longer are experts or in control of our life. And so we look to the physician and we look to that relationship. We want to be sure that we don't injure that relationship, that we want a relationship that is trustful. And in fact, the patient said they in fact had that trust. And I think the physicians don't necessarily recognize the depth of that trust and the depth of the dependency the patients feel in that relationship. So I was not surprised that patients would feel like they didn't want the physicians to recognize that perhaps they were missing activities that were important for their daily lives or interactions with families or feeling comfortable in social events because you don't want your physician to feel like, "Oh my God. I'm doing this to you, right? I've created this situation for you."

So this mental health of the patient, I think patients take that on for themselves and patients take that responsibility, but also, they don't want to upset or really impose upon the clinician, the physician who they need and who they want to do well by and they want to have good outcomes. So they go along and they accept the challenges they're given and they don't feel like they want to burden their care provider with that information.

Ashish Kamat: Yeah. No, there's so much you said there that resonates with me because one of the things, obviously, when the patient trusts us to take care of them, that trust is a huge responsibility, right? It's a gift given to us, but it's a responsibility. I always say it essentially makes me want to find out more about the patient and empower them to ask more questions, not take that trust and just tell them what to do. Shared decision-making truly is not me sharing my decision, but actually having a discussion with the patient. And over the years, you've done a lot of work with physicians across the board in urology, not just bladder cancer. You've of course worked with patient advocacy groups and the Prostate Cancer Foundation. Just based on your vast experience, what are some of the sort of learning tools you might want to share with the young urologists and medical oncologists that are listening to this on UroToday?

Because we reached the whole world, not just North America, right? What would you tell them to do to help them better prepare themselves to take care of the human being that is the patient?

Gina Carithers: Yeah. Exactly. That's such a great question. And I think for young urologists or young physicians, they don't necessarily have that confidence, right? They don't take advantage of that trust. They may not even recognize that that trust is there. And so when the patient asks questions, the patient isn't challenging. And what the young physician can do is be comfortable in their own skin that this person across from them, or sometimes two people, if they have a caregiver with them, is on this journey and they want to please and they want to perform well, right? It's a really important thing. So if you're young, recognize that that patient, like if you see that patient as an individual human being and you're having coffee with them and you're talking about your disease, that you're talking about them and what's affecting their life.

And so opening that conversation up as an individual and not some number, not a number of, "Oh, this is my third patient today, this is the time I have, and I just need to make sure I give them all the information so they don't leave without anything, so that they can be comfortable making a decision." Instead of taking that approach, take the approach of step back, "Oh, you're an individual. We're having coffee. Let's talk about this. Let's talk about what are your important goals of therapy? How do you feel about the journey you're on? What does cancer mean to you and are you able to talk with your family and your friends about this? Have you been able to become comfortable with some of the knowledge I've been sharing?"

It's a conversation. It's a dialogue and if you're young and you're comfortable with that, then I think it goes miles for the patient to be comfortable back. And we live in an era where social media and technology is all too frequent. So I see today many patients that use MyChart to get the information. It's not a conversation between the patient and the physician and it's not a dialogue and the questions don't get asked and now they're in ChatGPT, asking ChatGPT, "What if?" So the patient, the young physician has a huge opportunity to take the opportunity and say, "Okay, let me bring you along with you. I'm with you on this journey and let me bring along my knowledge and your needs and let's put the two together to get the best possible outcome."

Ashish Kamat: You mentioned MyChart and then got my blood boiling a little bit because that is a pet peeve of mine, right? Institutions for whatever reason, and I'm not blaming any institution, but they're forcing physicians and patients to use MyChart, not pick up the phone, not have a conversation. Everything has to be electronic through MyChart. And text messaging doesn't get that across. Chart messages doesn't get that across. So I tell all my residents, fellows, any young person that's willing to listen, ask at the end of your conversation, "Anything else? Anything else you want to share with me?" And that not only opens up the patient who share information about their journey with us, but it actually helps us deliver better care, right? Compliance issues. I mean, I have had patients miss appointments because they didn't want to miss a cruise rather than share with us that, "Oh, can I have an appointment next week?" Because they didn't want to burden the system.

So I absolutely agree with you. People have to build this into their system very early on. We could chat about this forever, but I'm going to ask you one last question. Well, before I do that, I want to say one thing, happy birthday. Today's your birthday. Yeah. So it's a special day all around.

Gina Carithers: Thank you.

Ashish Kamat: We have you here today for the first time. It's your birthday. Happy birthday.

Gina Carithers: Thank you.

Ashish Kamat: But the work that you did in moderating the entire panel, because we had Alex Filicevas. We had Meri-Margaret Deoudes. We had Margo. I was there as well. And listening to everybody talk, what would your overarching impression and message be as far as patient advocacy in the US and globally today?

Gina Carithers: So I was really... I'm honored that I had the opportunity to moderate the panel and Margo is a patient who was able to share her experience of being diagnosed and going through the loss of her bladder during the pandemic, a time that reshaped, I think for so many people around the globe the sense of community and recognizing the need for valuing our personal time. And here was this incredibly strong woman who recognized in the conversation how far we've come. I thought that was really incredible. She reflected back on the 2021 survey and the work that the Bladder Cancer... BCAN, the Bladder Cancer Advocacy Network.

And the advocates, what was super, I think, refreshing for me to recognize is that these two advocacy groups, one global, one very US-centric, their entire sense of value is creating resources that are tools that support the patient through their journey and they bring forward key opinion leaders and the voices of the science, but more importantly, they create a platform of exchange that irrespective of where the patients live and all the cultural barriers and potential language barriers, that there's a real plethora of resources to help them at an individual level navigate.

And then you heard Margo in one of our closing pieces recognize how far we've come. So while today we have so much more in terms of treatments that are available, we're not just left with cisplatin, we're not just left with removing the bladder. We're hearing that patients want to save their bladder. We understand that the differences in non-muscle-invasive disease and muscle-invasive bladder cancer, that the patient experiences these two kind of very distinct disease states very similarly. For the patient, that's not so important. And I think I was really struck by the fact that the advocate organizations create resources and tools and they're not stopping. They only want to get better, reach further and create more value for the men and women with bladder cancer. And I saw that you, as a clinician, share that view and that having voices of physicians around the globe come and be able to be better equipped, to not just offer treatments, but to really recognize that is an individual and we can support that individual through these journeys. So it was wonderful.

Ashish Kamat: So well said. So well said. Gina, thank you for taking the time. It was a great pleasure.

Gina Carithers: Thank you, Ashish. It's always a pleasure to be with my friend, Ashish Kamat. Thank you.