Meri-Margaret Deoudes: Thank you. So glad to be here. Welcome to DC.
Ashish Kamat: Well, thank you so much. We chatted last time about something very important, obviously the new faces of bladder cancer work that BCAN is doing. And you've always, again, been a pleasure to chat with because we talk about things that really matter, which is the patients, the humans behind the people that are suffering from the disease. And here right before AUA 2026, we had the event at the National Press Club, the Bladder Burden Survey, which of course BCAN, WBC, IBCG partnered with and had the support of J&J, which is really great to do it. We had a panel discussion, which again, thank you for participating. It was lovely. But I'd like to dig a little deeper and find out from you when you read about the bladder burden survey, with the context of course, the BCAN survey and the WBC survey before that, what stood out to you?
Meri-Margaret Deoudes: Yeah, I think it's a great question. I mean, I think the bottom line is we're making progress in some areas. We're certainly making progress in terms of informing our patients and understanding the mechanics of the disease. So that's really good news. I think we're still falling behind in a couple places, which was quite honestly, not necessarily surprising, but validated some of the other surveys that we've done. So for example, we mentioned this also on the panel, but for a woman experiencing bladder cancer, it's a very different journey for them. As you well know, often a delayed diagnosis with worse outcomes, but just the general anticipation and understanding what that care looks like, being in an unfamiliar setting, going to the urologist, et cetera, that's something that I think we need to do more work on.
It's no surprise that we're still hearing people concerned about talking about bladder cancer because it's below the belt. They're embarrassed. First of all, that they have cancer, they're worried about continence issues and other factors that really impact their life. So their mental health is strained. They're not as willing to go out as much as maybe they wanted to and missing those life events. And unfortunately, the data's consistent across all three. So I think we still have work to do in terms of how we can as a community wrap our arms around patients and help them feel more comfortable, understand that journey and move their lives forward and understand that there can be better todays and more tomorrows.
Ashish Kamat: That's a great summary. And you made some really excellent points on the panel. Folks that were there, they were able to listen to you and the entire panel was great. We had, of course, Margo, who is a survivor, on the panel as well. But something that you said really stood out to me. And what you said, you talked about the trust issues and it goes both ways. So share with our listening audience because a lot of our listening audience are young urologists and young medical oncologists who are actually getting into the field. Your message to them, maybe some training that they could do or self-reflection on how to build that rapport and trust with the patient.
Meri-Margaret Deoudes: Yeah. And so that's also really important and I understand. So as I said before, I'm the daughter of physician. I know how taxing it is in some ways for you all. You're trying to get a lot of stuff done and do it in a setting that's comfortable for you while still moving to the next appointment. So I think there's an opportunity to step back a little bit as providers and understand that any cancer diagnosis is a cancer diagnosis. And one of the survey findings was that unfortunately patients are told they have a good cancer, "You have the good cancer." I really think we just need to move away from that. I know there are good intentions there. The message might be that it's a chronic treatable disease in some cases depending on the diagnosis, but telling anyone they have a good cancer probably is not really the right bedside manner, shall we say.
And then the second thing I would say, one of the things we're working on, as I know you're super aware of and very cognizant of is when you talk about them in treatment and their therapy is not working, you don't say that they failed the treatment. The treatment failed them. And I think it goes back to your earlier point. You're really humanizing the person who's sitting across from you. And I know that you all have that in mind, but our language is so important, especially when the drain and the emotional stress already of a cancer diagnosis and the decision tree that's coming forward for them is really hard. Again, just stepping back and remembering what it's like to maybe be on the other side of those messages.
Ashish Kamat: Yeah. Those are critical points because for example, the word superficial bladder cancer, that used to be used a lot in the past. And kudos to Mark Soloway for actually championing this and then saying there's no such thing as superficial for the patient, we have to call it what it is. And the same thing, there's no good cancer for the patient. So I think we have to really recognize that. The other thing you touched upon is what we are obviously working on along with you and others is the language of respect.
Meri-Margaret Deoudes: Yeah.
Ashish Kamat: Because if you look at the abstracts, publications, there's a lot of language that goes in there that if you're reading as a patient, it seems disrespectful. There's no disrespect meant.
Meri-Margaret Deoudes: Intended, no.
Ashish Kamat: But I think it's very important for organizations such as the AUA, ASCO, others to actually have maybe a mechanism where they could look at the abstracts and say, "Hey, maybe change the wording of this. So if a patient is reading it, they don't feel like they're being disrespected." Because the mental health aspect was really something that it didn't surprise me, but it disappointed me a little bit when I saw that a full third of patients are actually missing important life events because they were too afraid to tell their doctor and they felt they were letting their doctor down. Any thoughts about how we can empower patients to not feel like they're letting the healthcare provider down by sharing this with them?
Meri-Margaret Deoudes: Yeah, it's so tricky because we want to trust our doctor. That's the way we've chosen them on purpose. Many of us are people pleasers. We don't want to disappoint the physician, but I think to your point, creating the space to say, "I know this is a difficult journey," or, "This can be difficult at times. Let's take a second to think about that and perhaps provide some resources." In our survey, actually, 90% of patients said they wanted more resources. And the other thing we talked about, which you mentioned as well is that there are different discussions along the treatment path. So this initial meeting, you might have a different discussion and know that the patient has a lot going on. So that's not the time from a trust building standpoint that you're going to talk to them about all the resources or maybe push them into, "Hey, maybe you should talk to somebody from a mental health standpoint." But as you get to know the patients, I think that becomes more and more visible.
And another thing that you and I both agreed on is it's not just the patient, it's also taking the advice or the input of the caregiver who's also at the appointment. I think you've really provided that space where you're inviting the family in, which can be tricky, let's admit, but then you can ask them, "Is there anything else you want to tell me about your loved one and what their journey is like?" Because sometimes our population is older and that generation isn't really comfortable talking about how they're really feeling or that they're struggling. They have to be the strong person in the family and so there's not a lot of space for that. But inviting that caregiver to provide that information to you might make it a little bit different as a physician to help coach that person and give them the support that they need.
Ashish Kamat: Yeah, very well said, because it is really teamwork. It's obviously us, the patient, but the patient has their own team. They have their own coaches, their own sponsors, their own supporters and people that will cheer them through not just the treatment, but also remembering to come to that next journey, maybe not booking a cruise at the same time that they're having their scans. The number of times I have patients where the wife will tell me, "Yeah, he forgets. I'm the only one that remembers." But if we don't involve them in the care of the patient, it would be very hard. Meri-Margaret, it's always a pleasure chatting with you. In closing, what's your one message you want to share with the audience?
Meri-Margaret Deoudes: I would just say that it's an exciting time in some ways for our bladder cancer patients with more therapies coming online. But to your earlier point, I think it just falls back on us in the community, between the advocacy organizations, the providers to continue to think about what that journey looks like as it's a very complicated, complex disease and we're just going to continue to need to really work together and be sensitive to some of the data that's coming out from our patient population and making sure that we're supporting them all along the way and encouraging us to continue to work together with resources and making maybe those visits a little bit more constructive instead of coming in with Dr. Google's advice or ChatGPT's advice, some resources like BCANs that really can help them guide the way for their journey and maximize those appointments.
Ashish Kamat: Absolutely. I think I tell all my patients all the time, "Listen, use ChatGPT and others for other things, but go to BCAN if you're actually one true advice." Yeah. So thank you for saying that.
Meri-Margaret Deoudes: Thank you. Thank you for spreading the word for us.