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Welcome. As we explore throughout this program, biomarker-guided approaches are increasingly influencing care decisions in muscle invasive bladder cancer, but it's equally important to understand how these decisions, tests, and conversations are experienced by patients and caregivers. We're pleased to welcome Joy, who is joining us from Bladder Cancer Advocacy Network, or also known as BCAN. Joy brings the patient voice into this discussion and represents individuals and families navigating diagnosis, treatment, and follow-up care. Joy, thank you so much for being here with us and for sharing your perspective today. No problem. Thank you for having me. So to start, can you briefly share your connection to bladder cancer and your connection with the bladder Cancer Advocacy Network? Um, sure. Um, I was diagnosed with muscle invasive bladder cancer in June of 2024. Um, at 54 years old, I had no risk factors. Um, I was a non-smoker, never had any, um, contact, you know, occupational contact with dyes or anything like that. So I'm in very good health otherwise. Um. I, in early 2024, I visited my primary care physician because I thought I had a UTI, um, but I did not have an infection, um, and so after seeing some microscopic blood and some past results, she suggested I go to a urologist. Um, so I made an appointment and like any specialist, it takes a while to get in and before that visit, I actually passed a blood clot. Um, so, um, then I waited, it was probably another 3 weeks before, um, that urologist visit came up, and so I knew I'm, I might need to be concerned at that point. Um, and, and when I got in, it, it was obvious that she was on, um, on go method, so she started, um, doing the, the scope, the CT scan, the tumor removal, all happened within a few weeks of that visit. Um, she was able to confirm that the cancer was an invasive, um, muscle, you know, bladder cancer. Um, and having no knowledge about bladder cancer, um, I, I did what everybody does, and I went to research on the internet. Um, so I started researching medical sites and looking for a good book, um, you know, by a doctor, and, um, I thought, well, every group, every cancer has a group. Um, so I searched and that's how I found, um, the Bladder Cancer Advocacy Network, uh, or Beacon. Um, and their website was a great resource for me. Um, I attended a, a few virtual female support groups, just basically not even participating but able to listen in on that, and it was very helpful to see somebody that who had gone through what I was getting ready to experience. So, um, I also attended a, uh, they have, uh, summits, so I went to the Fall summit and now I'm a survivor to survivor, uh, volunteer. So if someone is diagnosed, they can reach out to Beacon and be connected with the right person, um, to help kind of walk them through the experience. Thank you for sharing that background, Joy. It, it's kind of really helpful for our audience to understand the perspectives you're bringing today and the experiences you hear from patients and families. So, when bladder cancer becomes muscle invasive, patients are often faced with complex and time-sensitive decisions as you've mentioned as well. Uh, from a patient perspective, what felt most overwhelming and unclear at that stage? Um, by the time I was diagnosed, um, it was muscle invasive, so, That actually eliminated some of the decision-making for me. Um, I've had other bladder cancer, uh, survivors say to me that, well, I, you know, I, you didn't have the choice, so that was, you know, obviously it was very, um, very serious, and, and that's true, but also I think it was, it's probably more stressful to have that decision with the, uh, decision-making with the physician. Um, as far as, you know, does the, can we preserve the bladder or does it, you know, when do we remove it, um, So I think that is, in my eyes was probably more stressful for someone else. Um, so by the time, um, you know, that all happened for me, um, and my doctors agreed that, you know, I would, I would need a, a particular path, I think the most complex decision for me was personally what type of urinary di uh diversion method I would choose. Um, that was stressful, um, for me, so, Um, other things, you know, are, were things that I just had no choice on, but the decision that I was about to make was going to alter the rest of my life and how I would, you know, function as far as the bladder goes, so, um, You know, some surgeries were either easier than others, um, some, the recovery time was longer, so I was healthy otherwise, I chose to do the neo bladder personally, um, which has worked out very well for me. I've been very fortunate, but that decision was stressful because it, I knew it was permanent and would change my lifestyle. Thank you and what you covered really highlights how much information and as you mentioned, different methods patients are trying to process in a short period of time, often while also dealing with the fear and, you know, uncertainty and um as you also highlight the decisions that are gonna stay with you for the rest of your life. Um, how do patients typically feel when waiting for results or hearing about a molecular or blood-based tests after surgery, especially when imaging imaging may still look normal? Um, you know, I, when my physician, um, spoke to me about the blood work, I was excited that there was a circulating tumor DNA test, that a tool, there was something like that tool that could be used. I didn't even know it existed, um, and my oncologist explained, um, how he would monitor the blood work after surgery to try to catch anything as soon as possible. Um, After my surgery, I did have, personally, I had a pos positive margin um that it was of concern and so some of the pathology wasn't crystal clear um and so even though they were able to tell that the chemo worked, um, with, you know, they, they still weren't quite sure if they had gotten everything. So within two months after my surgery, I had the blood work done. And of course, um, like any CT scan or any other test, you know, you're you're anxious, of course, but the blood monitoring to me feels like something proactive that I'm doing. So we're trying to catch it before you can even see it on the scan and, and make sure it's clean and then if it is clean, that's even more assuring because it's, you know, um, again, I, I don't know, I just think like In a, in a way, it's more reassuring to have that information than to not. So it feels very proactive and when you're waiting, it feels like you're waiting for a grade that you're waiting to receive in college, like, did I pass or is there more work to do? And what you've just described really also underscores the emotional weight that testing, monitoring can carry, and as you also said, even when there are no visible sign of the disease just yet. Uh, when treatment or surveillance decisions are being discussed, what would you say helps patients feel included and confident that their values and preferences are being considered? Um, that's a great question. Um, I, I have a team of doctors and nurse practitioners that, that I feel very blessed to have handling my care. They listen. Um, I've had several questions and they've answered every one. I've never felt like there was any question that I couldn't, um, ask or, um, you know, and they've, they've told me the risk involved and provided me realistic timelines. So I think that helped me to be very mentally prepared for all of it, um. I didn't have a real, you know, I didn't feel like I had control over the decision on the bladder removal, but what I did have control of was who I chose to be my medical team. So, um, I wanted doctors that would listen, um, that would answer my questions, um, and understand also that I would, you know, need second opinions. Um, just to feel confident in the overall plan, so I think it helps to build that trust and, and therefore reduce the stress. Um, so some patients want more information like myself or maybe they don't, they don't want as much, but just feeling confident that the treatment decisions, um, you know, there's a lot of communication between the parties involved, I think that's key. Mhm. And it sounds like emphasis really is here on the communication and inclusion and the importance shared decision making uh has on patient-centered care.