Transcript of Spring 2023 Summit for Patients and Families Welcome

April 12, 2023

Andrea Maddox-Smith:

It’s not. It’s 11. It’s 11. That’s right. I’m still on East Coast time, I’ll say morning. Well, good morning. It is my distinct pleasure. First of all, let me introduce myself. My name is Andrea Maddox-Smith and I’m the CEO for the Bladder Cancer Advocacy Network. We’re very happy to have you out here this afternoon, so it is my distinct pleasure to welcome all of you to our eighth annual Bladder Cancer Summit for patients and families. We’ve got an amazing lineup of speakers. Speaker sessions and activities are sure to leave you feeling empowered and energized.

Now, as you may know, this is the first of two summits this year. We have another one in Nashville in the fall. More to follow on that. But I do have to tell you the reason for this summit is because you asked for it. We were typically doing a summit only once a year and then through our strategic planning session last year, we had volunteers involved with that and we were told we want more than one. We want one on the East Coast and one on the West Coast. So we at BCAN, we do listen. So I want you to know that. First off, let me give you a huge round of applause for our incredible patients, caregivers, and advocates heroes who have traveled from far and wide to be with us today. You guys are the backbone of our community and we are so grateful for your unwavering support and dedication.

For those of you who are here in person, I recognize that it’s an effort to fly anywhere these days. So, thank you for that. That long five hour flight with something else. I would also like to thank our corporate partners because of their generous support, this summit would not be possible. Thank you to our corporate partners. As always, I want to thank our medical and research professionals who work tirelessly to make better tomorrows for those in our bladder cancer community. Yay. Feel free. I am not only grateful that you are here in person, but we also would like to welcome those who are watching the summit via Zoom. Not everyone could travel this time around, so we are streaming in many different Zoom sessions this year.

I’m also happy to combine our in-person and our online audience to include many people as we can. So if you have not had a chance to meet everyone on the BCAN staff, only half of us are here today. So, I’d like to briefly tell you about who’s here. First and foremost, I’d like to think most of you would know our director of education and advocacy, Stephanie. Most of you know her. Stephanie and her team do a wonderful job of putting this together. And it’s not as though she has nothing else to do. But when we said to Stephanie last year, “Do you think you can do a second one?” “Yes, absolutely. Not a problem.” So you like to have that when you ask somebody can they do something else, she said it. We also have with us today our chief development officer, Rob Demske, standing in the back.

A few of the people I’m going to announce are not in the room because they are registered and we only have six of our 12 people here today. So, we’re playing many different roles. We have Bernadette Fitzsimmons, our volunteer and chapter manager. Trenny Stephens who many of you also have talked to, our executive assistant to myself and the office administrator. We have Mark Story in the back, our director of communications and marketing. And since the last time we met in the fall, we have welcomed Ivan Martinez, our new community engagement manager. Ivan’s standing in the back. So the staff that could not be here include Valerie Aldana, BCAN’s new senior research project manager, Joslyn Brown, our developing and marketing coordinator, Rebecca Johnson, our director of research, and Rebecca Yannopoulos, our senior development manager. Thank you.

Many of you are used to working with Morgan Stout as well. She’s Stephanie’s right hand and she has the best reason for not being here. Oh, I have to introduce Diane Quale who is our founder of BCAN. So you have to know her. You got here early. Good, okay. Diane’s my partner and I’m going to have you come up right after just to say a few words, if you don’t mind. You don’t mind, Stephanie? Okay. So Morgan is actually having a baby and when I say having a baby, she’s at the hospital right now. So, we are welcoming another BCAN staff member.

Audience:

[inaudible 00:07:01].

Andrea Maddox-Smith:

So as we kick off the summit, let’s remember the wise words of author and entrepreneur, Vivien Greene, “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Let’s dance together, learn together with bright light and love each other. This is going to be an unforgettable two days and we’re so excited to have you all with us. So, I’m going to change the program a little bit because I was going to introduce Stephanie. But before I introduce Stephanie, I want to introduce the woman who hired me. Diane Zipursky Quale who is the founder of Beacon. I’m so glad to see you.

Diane Zipursky Quale:

So, talk about good timing, I literally landed a half hour ago and rushed through the airport to get here. So thank you, Andrea. Hiring her was among the best decisions I’ve ever made in my life. I’d like to welcome you all here today. It’s a weird thing to say it’s so wonderful to see so many of you here because I’m really sorry that you’re all here. And I’m sure you all understand that I’m sorry that you need to be here, but I am so happy and thrilled that you have found BCAN. So let me just ask so I can get a sense of who’s in the room. How many here have been diagnosed with bladder cancer say in the last six months? Okay. And how many of you have had bladder cancer for more than two years? Okay, good. So we have a really good mix.

So as Andrea mentioned, I’m the co-founder of BCAN. It was about 23 years ago this spring that my late husband, John Quale, was first diagnosed with bladder cancer. So another show of hands, how many of you learned about bladder cancer for the first time when you were diagnosed? And 23 years ago, that was to be expected. It’s a little disappointing that it’s still happening in today’s world, but it is. So, our lives changed 23 years ago with that bladder cancer diagnosis and John was first diagnosed, they had to remove his kidneys. So, he was diagnosed with upper tract. But at that time, we didn’t know it was up tract. The doctor told me, “Your husband’s kidney’s going to need to be removed.” So being the type A personality I am, I did all the research I could on kidney cancer, even joined the Kidney Cancer Association. Only to find out about two weeks later, no, it wasn’t kidney cancer, it was transitional cell carcinoma in his ureter. So that was going to require his kidney to be removed.

So, fast forward many, many years, we had quite the experience with bladder cancer. After John had his kidney removed in the summer of 2000, in 2001, the bladder cancer came back. This time in his bladder with multiple tumors. And before he could even consider having BCG or even a radical cystectomy, they found that it had already metastasized to his liver. So he had very high grade, very aggressive disease. So, we started chemotherapy in May of 2001 and he had a unique response, really unique response. And after six months of chemotherapy, there was no more evidence of cancer. So, we were really quite relieved. But over the next seven years, bladder cancer, as all of you know, has this terrible habit of returning and it returned over and over again. And I can tell you I’m not going to go through our whole journey, but I can tell you any treatment that was out there from 2001 to 2008, my late husband had it. So our experience is quite varied.

But when we were going through this way back then, and as you can think back to the early two thousands, the internet was just kind of getting started and you had to be very careful about what you read on the internet. And I became the researcher because I didn’t want John to see what was on there because it was scary enough for me and I didn’t want him to be frightened by it. But it was after a few years that we just got really frustrated at the lack of treatment options for him, the lack of research into the disease, and really the lack of support and connection. We didn’t know anybody else who had bladder cancer. And when we started to read about the statistics and saw how common it was, we were just outraged. And that’s why we got BCAN started in 2005. We decided it was time for bladder cancer patients and their families to have a voice. And we knew that in the healthcare arena, when patients got together and raised their voices, that’s when you would see change happen.

And I’m incredibly proud of what BCAN has accomplished over the last 18 years. I didn’t have gray hair when we started. Actually, that’s not true. I did. It just didn’t look gray. But what I want to tell you all is having bladder cancer can be incredibly scary. As you all know, with your own experiences, it’s a rollercoaster ride. There are days that it’s great. Then there are times you’re waiting for the next scan and the anxiety is overwhelming. And then maybe you get a clear scan so that’s great. So you feel good again until you have to ride the rollercoaster again. Or maybe there are more tests or maybe there’s more treatments.

But what we learned to do and what was so important and I want to share with you is John felt really strongly, don’t let your cancer define you. You decide how to live well with this disease and there’s going to be a lot of programs and things for you over the next two days that will help you with that. And also everybody’s experience is different. So don’t compare yourself to anybody else. You find exactly what you need and you make it work for you. And also know that you are never alone. Reach out to your family, reach out to your friends, reach out to the people you’re going to meet over the next two days. It was really important to us when we started BCAN to create this community so that nobody would ever feel like they are alone.

And the last word I want to say is to speak specifically to the caregivers and family members out there because I have been one as well. And what I want to say to you is everything we talk about in these next two days and everything you learn, this is for you too. Helping someone, loving someone, caring for somebody who has cancer, I said I was going through everything that my husband was going through, just not some of the same physical things. But from an emotional standpoint, from a stressful standpoint, that’s your life too. So, please take everything you can from here and know that it’s for you as well. So, I’ll be around. I’m looking forward to meeting many of you and I know it’s going to be a great summit. Thanks for joining us.

Andrea Maddox-Smith:

Okay, we’re going to have Stephanie take the reins now. Thanks.

Stephanie Chisolm:

Okay. So I’m very excited that this room is full of wonderful new friends and a lot of old friends. It’s good to see everybody. Thank you for journeying to Phoenix. I thought Phoenix would be a good location this time of year. The weather’s nice and hopefully will stay nice while you’re here. So I am going to walk you through BCAN’s resources. Some of you may be familiar with some of the things that we offer and others of you are like for the first time I had no idea BCAN even existed. And then my doctor told me I should go to this meeting and now I’m here. So, this is what we’re going to be doing. And I did put some slides together for you. So what I would like to do is just start. Here’s the agenda. You’ve got this nice little agenda here that’s sort of how we’re going to roll.

We have all different sessions talking about the theme of thriving and surviving. And let me just give you a little background, first of all. I always tell people bladder cancer is kind of like an iceberg. And so the base of the iceberg is the widest part and that is the patients with non-muscle invasive bladder cancer. Raise your hand if you have a connection to non-muscle invasive bladder cancer. Okay. A smaller percentage, the part that’s where the waves are, where you can begin to see the iceberg is muscle invasive, where that bladder cancer has moved into the muscle layer and now it’s even more of a threat because in the muscle there’s your circulatory system, your lymphatic system, and it only takes one rogue cell to break away and go someplace else. And that’s where this is a problem. And then those patients who have either locally advanced or metastatic disease are really the smallest percentage, but that’s also a very serious complication because now you’re fighting urothelial carcinoma in other parts of your body. The cells are still bladder cancer, but they may be located elsewhere.

So, there’s a few not so fun facts. First of all, did you know bladder cancer is the sixth most common cancer in the United States? How many of you knew that? Okay, not everybody. So, it’s the sixth most common and nobody talks about it. You raised your hand if you’ve never known about bladder cancer until your diagnosis, well, that’s why because nobody talks about it. Bladder cancer has a very high rate of recurrence. The very things that caused your first tumor might also impact all the other cells of the urinary tract, the urothelial cells that line the renal pelvis in your kidney down through the ureters and your bladder. Those cells are all the same. And if something that you might have been exposed to caused mutations that unleash a cancer, then that’s very possible to come back. And so it has a very high rate of recurrence and as you all know, a very invasive surveillance to make sure that it doesn’t come back with cystoscopy going back into the bladder to look around and see if the cancer has come back. Wrong way. I didn’t mean to do that.

And it’s also known to be among the most expensive cancers to treat, in case you hadn’t noticed yet. Some of you probably already have noticed this. And what I think is unique is that 60% to 80% of all bladder cancers in the United States are treated in their community practices. How many of you’re being seen by your community-based doctor, not at a large hospital? And then we have a lot of speakers coming in from renowned institutions, like the Mayo Clinic and the university down in Tucson, University of Arizona and the cancer center in California. We have people coming in from all over that are representing and speaking with great knowledge because they’re involved in research and involved really with a lot of high risk bladder cancer. But we know that being treated in your community is really important. And to help raise awareness, we’re going to ask you to help us in your community by letting your doctors know about BCAN. They may not know. You might have found us completely by accident on a late night Google search. Who knows? But we want your help doing that.

But let me just talk a little bit. First, want to clarify for you, this theme for this meeting is thriving and surviving. What’s a survivor? I’ve had people ask me, I don’t know which one I’m supposed to pick when I register because I’m still getting treated. Am I a survivor? Or I got treated a long time ago, I haven’t had any evidence of disease for five years. I’m not a patient. Am I a patient? Am I a survivor? So, here’s a definition. A person who survives, especially a person remaining alive after an event in which others have died. Hello, that’s bladder cancer. You’re still alive, you’re a survivor. A person who copes well with difficulties in life. Did I say bladder cancer? That’s a difficulty in life. You’re coping, you’re coping well, you’re getting connected more now than you’ve ever been before because there’s over a hundred people in this room that know exactly what you’re going through. So, BCAN is adding to the term survivor people who are newly diagnosed, people who are currently receiving treatment, and people who are post-treatment and beyond with no evidence of disease. We call you all survivors.

What does it mean to thrive? To grow or develop well or vigorously, to prosper, to flourish, to progress toward or realize a goal despite or because of circumstances. Did I say bladder cancer? That’s a circumstance. In spite of that, you’re still doing well, you’re still living, you’re still having moments of joy. That’s really important. So, that’s putting that thriving in survivorship together and that’s really the theme of this meeting today. So let me ask you first. Now this is my chance to get you to be physically active. We have attendees from 27 states that registered, 82 from Arizona, 26 from California, 20 from Colorado, and the rest from nearby states or further away. 94 of you considered yourselves as bladder cancer survivors. 45 are family members or caregivers. There are two friends of some of the survivors. Nine healthcare providers are registered for this meeting. You’ll hear them all later. There are six BCAN staff here.

So now I would like you to stand up if you fall in any of these categories. And what I’m asking you to do is to look around because there’s a paper on your table. It’s kind of like a little bingo thing. There’s no big prize. But what you’re going to be able to do is sit down at lunch, sit down at dinner, sit down at breakfast, and meet people. And as comfortable as you are, you could share email addresses. You are building a support network and that’s what that questionnaire on the paper on your desk is meant to do. So first of all, stand up if you are somehow connected to non-muscle invasive bladder cancer. Everybody stand up. Look around, see who else is in some way tied to non-muscle invasive at some point. All right, now sit down.

Audience:

Does non-muscle include a tumor being in the wall of the bladder?

Stephanie Chisolm:

Nope, that’s the next one. Sit down. Okay, now stand up again. Muscle invasive, if you have muscle invasive bladder cancer, stand up and look around. These are the people you would like to connect with today at some point. I’m going to give you lots of opportunities to do that. Now if you have a unique diagnosis known as upper tract urothelial carcinoma, it’s a little more rare, but it’s carcinoma that happens. The cancer happens in the ureters or the renal pelvis in the upper tract of the urinary system. Stand up. So see, it is rare. Now you two have got to meet later. If you have advanced or metastatic disease, please stand up. Excellent. Not excellent that you have it, but that you’re finding each other.

So, look to make connections. I appreciate that you are here. I know it’s really hard sometimes when you’re facing very serious diagnosis, but thank you for coming. Stand up now if you’re a family member or friend of a survivor, you’re a caring person, a carer. All right, now look around. This is the group you all need to connect with definitely because they’re the ones that you can talk to about this. This is going to be good. Make sure you know who you want to connect with because you want them to sign your little sheet.

Now stand up if you work for one of the sponsors of this program or industry sponsor because I would like to thank you all. Great. Thank you for doing that. Appreciate it. And throughout the day, these are the good guys. These are the people that help us do this and make this program free of charge to you. And they really do care. They really do want to know what is the lived experience of a person going through bladder cancer. So share, feel free to share with them. Okay, so here are our sponsors. They’re on the slides, they’re on the thing here. Everything is here. Thank them. That is wonderful. I appreciate it. And let me get going.

I changed my picture. I’ve used this kind of picture before. This is a scary journey, but I tried to make it a little bit more Arizona themed, so we got a lot of cactus. But walking out in the wilderness, I was just down in Tucson in the fall, we did Sabino Canyon. I stayed on the pavement. That’s just how I am. I’m from New York, I live in Maryland now. I don’t have critters like you guys have critters. I stay on the pavement where I can see what they are. This is a scary journey. It’s got a lot of potholes, a lot of slippery rocks, a lot of cacti that can stick you when you least expect it. And we have resources.

We have resources to help and that’s where I want you to take your phones now. Most of you I think have smartphones because there’s nobody that doesn’t have a smartphone. So, I want you to take out your phone because I’m going to show you what you’re going to be able to do in a minute. I’m going to walk you through the prickly journey with bladder cancer and show you how to navigate and learn. So, please take out your smartphones. Keep the ringers off, but I am going to encourage you to use your smartphones a few times in the next two days. Andrea listed everybody just so you know who you’re meeting and talking to throughout. I’m going to give you a quick flash.

I’m going to run through who’s here. You met Andrea already. I’m standing in front of you. You can’t avoid me. You met Rob briefly. Mark Story is sitting in the back and he is definitely the voice of the Bladder Cancer Advocacy Network. Trenny is the one who runs the organization logistically. She is the one who helped make this meeting together, so thank her, especially if you like the food because Trenny’s the one who picks all the menus, which is great. Bernadette, for those of you who are volunteers with us, you’re going to know Bernadette. So you’ll have plenty of time to talk to Bernadette at lunch and dinner and breaks and everything else. You can introduce yourselves to Ivan. This is his first summit. So, Ivan comes from a social work background and we’re really delighted. He is our manager for community engagement. So if you want to help your doctor have BCAN resources in the office, talk to Ivan. He’s the person to do that.

And then these are the people that didn’t make it to Phoenix this year. Morgan is, as Andrea pointed out, she’s pregnant and not able to come. Rebecca and Joslyn are so immersed in the walk season. For those of you who’ve never done a BCAN walk before, I’ll give you some information about that. But they weren’t able to come because it’s all walk all the time now. Spring is our busy season. And then Rebecca Johnson and Valerie Aldana are at home because they’re running our research program and we just announced some very significant research. So, follow us on Twitter and Facebook and you’ll learn all about that. And then I’m just delighted that Diane made it in on time to say a few words right at the beginning.

Our mission since 2005, has been really threefold. Education and support. We support and fund research to advance treatments. And then we raise awareness and we advocate on behalf of all bladder cancer, even on Federal Hill and in states. When there’s something that’s not fair to bladder cancer patients, BCAN wants to speak out, but this is something you can help us to do. And the first stop, and I’d like to say is open 24 hours a day, seven days a week is bcan.org. So if you take your camera right now and you take a picture on this little QR code with your smartphone camera, it’ll frame it in yellow I think on most phones. And then it actually, if you tap it opens on the website, if you’re hooked onto the Wi-Fi.

I’m not going to spend huge time. But I wanted to point this out because it’s in that handout I have on all the slides. I had that QR code, so you can get right there without having to fumble with how did she spell that URL? Because it’s complicated sometimes. So, this is how you can find all of these things. And you are more than welcome to do this, to take these, take pictures of them. You can access the QR code later when you go through your pictures. You also have it in print in front of you. Okay, any questions so far? I know most meetings tell you to put your phones away, but I’m telling you to keep them out. I got to press the advanced button.

So depending on your diagnosis, I actually developed web pages because when I get an email from a patient saying, “I don’t know what to do. I don’t know where to start. I’m so confused.” I try to walk them through. What I see it as is think about walking across the creek. You have stepping stones. You look for the rocks. And so I put together pages that are like that. That weave different resources of BCAN into the page. So if you are diagnosed with non-muscle invasive, you can scan this QR code. If you have muscle invasive disease, this code. If you have advanced or metastatic, this code. But you can find all those resources is a really great way to start. Think of it as like a map. How do you get through the huge library that BCAN has? So we keep that refreshed and updated periodically. So, these are great resources to know about.

One of the things that we have at bcan.org is our state map and it breaks it out by each state. So many of you are from Arizona, but if you’re from a different state, you can look up the statistics in your state. So, these numbers are the numbers of people predicted to have a diagnosis of bladder cancer in the state of Arizona this year alone. There’ll be 1,900 patients that are going to be diagnosed. These are the numbers overall in the United States. There’s going to be over 82,000 people diagnosed this year. There’s over 700,000 people in the United States walking around, hopefully thriving and surviving past their diagnosis. And we know that bladder cancer happens more frequently in men than in women. And when women are diagnosed, it’s often after many, many different delays in their diagnosis. So, they often have more advanced disease and worse outcomes, which is a bit of a challenge.

So, we have a lot of resources out at the sign-in table. We have some copies of our Bladder Cancer Basics, a print book. We’re about to release an ebook that’ll read a little bit like a Harry Potter newspaper so that the illustrations will come alive. And there’ll be little animations in there so that it explains complicated terms. We also have Tips for Caregivers that you can download as well, and many, many Get the Facts pages. So here’s how you can get to all of these things. So you can order a copy of Bladder Cancer Basics electronically or have a copy mailed to your house if we run out here. But you can also pick one up out here with this QR code.

Our Get the Facts pages were designed with the assistance of patients who gave us some questions they wished they had asked when they were diagnosed or before they went through the various treatments. And so they’re plain language, easy to read. We’re going to talk about the stress and anxiety of a bladder cancer diagnosis this afternoon with Dr. Shweta Kapoor from the Mayo Clinic. And I think one of the things you probably all remember back when you were first diagnosed was that all of a sudden your doctor said, “You have bladder cancer.” And did your ears buzz? Could you hear anything after the word cancer? Probably not. And your loved one is like, “Oh my God.” You move into hyper mode to start trying to learn as much as you can because you’re both shell-shocked by this. So, this plain language is nice and simple, easy. We get more complicated because I know that everybody learns on a different way. So, I like to think of the bcan.org website as the mirror ball of resources. Many, many facets, many different ways you can learn.

So, I’m going to walk you through them all right now. We have webinars. We have nationally and some internationally known experts in various aspects of bladder cancer that provide sessions for patients to talk about everything from treatments to surviving to prevention to understanding the environmental impact on bladder cancer when you look at the causes and risk factors. I think, Mark, we probably have 30 webinars that we transcribed, so there’s a written transcript and recorded video that you can look at 24 hours a day. When you have a question, look there first.

If you can’t talk to your doctor or another medical expert, go to BCAN because all of these things are leading experts. They’re vetted information. So, there’s tons of resources there. So you can access all of the videos that we have, including our treatment talk program where experts talk about a treatment and a couple of their patients join to explain how they made the decision to be on the treatment, or the questions they wish they had asked, or problems they might have had and how they solved them. These are all very unique programs that we do on a regular basis. So, definitely check out our videos.

If you’re an audio learner and if you want to listen in your car, download Bladder Cancer Matters podcast. Our host, Rick Bangs, is amazing. When Mark wanted to do the podcast along what three years ago, I said, “We need to have a credible person who is the voice of Bladder Cancer Advocacy Network.” And Rick Bangs was the first person that came to mind. He always starts the show by saying he’s a proud owner of a 2016 model neobladder. And he had his bladder removed because he had bladder cancer. And then he got very engaged, very involved. He’s on all of these research committees. He’s not a scientist, but he educated himself. And he can literally walk in both worlds, in the patient world and the medical world. He’s incredibly well respected in the medical research community and also in the patient community. And he’s really a wonderful moderator for Bladder Cancer Matters podcast. Subscribe, we got all kinds of great topics. Mark is always doing new stuff with Rick and they’ve got a really great library of podcasts that are available, including the written transcript if you prefer to read it.

Survivor to Survivor. Your doctor says, “These are your options for treatment.” How do I live without a bladder? If your doctor’s suggesting you remove your bladder, would it help to talk to somebody that has done that already? How do you know which urinary diversion is perhaps going to be the best one for your lifestyle? You want to talk to somebody. Maybe you don’t know what it’s like to go through BCG or to go through immunotherapy. You can find and connect with a volunteer on our Survivor to Survivor network. Bernadette coordinates, she’s an excellent matchmaker. She matches you by your diagnosis as closely as she can, and by your gender and age so that you’re going to find a friend who’s going to talk to you and they make a connection. If you’re interested in either being a volunteer or using our volunteers to find out more about how do you live with bladder cancer? I don’t know. I just got diagnosed. I have no clue. Get a Survivor to Survivor call and talk to Bernadette. She’s going to be here.

And our Survivor to Survivors are amazing, but they are not equipped for the stress and handling the distress that can accompany a bladder cancer diagnosis. So, we are really thrilled that BCAN has been able to partner with Cancer Care. They have a call center based in New York. They’re open during business hours Monday through Friday. And if you have an issue about the stress and anxiety or even looking for financial resources to help you with treatment, you can call 833-ASK-4-BCA. Basically ask for bladder cancer advocacy. That’s what we’re all about. And speak to one of their licensed clinical social workers. They can help you find resources here in Arizona, in California, in Texas, wherever you might be from, and help you better understand how to manage the stress and anxiety. So, definitely feel free to give them a call. I didn’t put a QR code because it’s a phone number, but it’s in your page.

Okey-doke. We have four chapters so far. It’s a lot of work to have a chapter and chapters are really an opportunity to connect with people. We don’t really have any chapters in Arizona, but we do have… Where’s Karen? Karen Gross is the head of our BCAN chapter in San Diego. And chapters are a great way to get people together to really talk about your disease and do things collectively as a community. They have meetings together. They get together to run a walk, which is really an amazing awareness event. And again, it brings some camaraderie. You’re not alone. So, talk to Karen if you’re interested in chapter stuff because she’s here, sitting right down there. They help support BCAN. They do fundraising for BCAN. A walk is a very significant fundraiser for the Bladder Cancer Advocacy Network. I’ll talk about that in just a second.

We do advocacy. And if you have interest in government and issues, we are getting ready to do a Hill visit. We have patients coming in from around the country to talk about research funding through the Congressionally Mandated Department of Defense Peer Reviewed Cancer Program. I know that’s a big mouthful, but they have $130 million set aside for this program. And BCAN wants a piece of that pie. And we need to do more to raise awareness about this. And we would love to be what we call a permanent line item on that list so we are never going to lose our slot. Right now Congress gets to decide what diseases go on that list. And so we are really doing our best. We have a webinar coming up for researchers to help encourage them because we need to have really good proposals presented so they can be funded.

Last year they funded 6.8 million worth of research through that program. That’s a lot of money, and it’s stuff that’s really high risk, high reward, and it’s really intended to help a very special, unique population. There needs to be in the research proposals, a piece that’s connected to our military, our current active duty serving military and our veteran population. Raise your hand if you’re a veteran. So our veteran population, bladder cancer is the fourth most common cancer in that population, in case you didn’t know that. So we’re going to be on the Hill and we will have ways for you to send a message to your representatives from the safety and comfort of your home via email or call or you could write a letter and we’ll be sending that out in some of our future publications that you’ll be getting from Mark.

And then May is Bladder Cancer Awareness Month. You’re going to see a lot about that because people are not aware there are risk factors for bladder cancer. Firefighters, any firefighters in this group? Aha. Firefighters are exposed to chemicals in the smoke and then chemical residue that’s left on their clothes that they in some cases bring home. And then that equipment that they have at home for volunteer firemen might be something that can contaminate other people in the house. These are carcinogens that are in burned equipment, things that they face on a regular basis in the job. Our military also is at great risk. People who have chemicals in their water are at greater risk. These are all risk factors. We want to raise awareness of bladder cancer, the early signs of bladder cancer. Shout out if you had a early sign of bladder cancer that you can name. Name one.

Audience:

Blood in your urine.

Stephanie Chisolm:

Blood in your urine. If it’s gross hematuria, it’s not just gross because ew, I have blood in my urine. It’s gross because there’s a lot of it, like in a gross of blood in your urine. It’s called hematuria. It can also be microscopic, something you can’t see with your eye. But when you go to the doctor’s office and you pee in the cup and they put the little dip stick in, they’re looking for blood. Urine is not supposed to have blood in it.

There are some patients that I have spoken to who said the doctor came back and said, “Guess what, Jim? You have urine in your blood. That’s gross hematuria.” And then others are like, “I saw on my chart that I had some blood in my urine. My doctor didn’t say anything about it.” But because they had a bladder cancer diagnosis years ago, they brought it to the attention of their surgeon who went back in and took a look. And sure enough, even after 20 years, firefighter, Tony Stefani, whose story is listed on our website, had a recurrence after 20 years of no evidence of disease. Again, you got to pay attention. You got to keep up with your own health. Blood in your urine is one sign. What else?

Audience:

Lower back pain.

Stephanie Chisolm:

Sometimes lower back pain. Absolutely. Or flank pain along the side. If you have maybe some issues in the upper tract.

Audience:

UTIs.

Stephanie Chisolm:

UTIs, recurrent UTIs could be a sign. Urgency, frequency. I’m going to just tell you that’s part of getting old too. So, how do you know? But you put it all together and bingo, there’s a whole little combination. So especially the blood in your urine, when in doubt, check it out. Go to a doctor and find out what the source is. It could be nothing. It could be something. You wouldn’t know. And raising awareness in everybody is a really good way to maybe save somebody’s life by getting them into care soon.

So if you’re interested in helping BCAN, tomorrow morning we’re going to do a volunteer breakfast where you can sign up to help out and do stuff and we’ll be talking to you. And Ivan will be the one to help with helping share BCAN resources. So, talk to Ivan because we are very happy to send a package, a starter pack of our bladder cancer basics and other information to your doctor or send it to you and you can bring it to your doctor. It means more if it comes from you than if we just randomly mail it. So if you want to help us get the word out to that 60% to 80% of patients who are seen in their communities, we need to know where they’re going and where you’re going. So, let us know. That would be wonderful.

We also do a lot in the science. We have a clinical trials dashboard, which allows you to search for open clinical trials in bladder cancer. A clinical trial, a lot of people think of, well, it’s a last resort. They have plenty of things they can do. But it shouldn’t always be considered a last resort. A clinical trial gives you an opportunity to get a possible new treatment and also to be very closely monitored. And you can find clinical trials on our dashboard. And this is how you get to our clinical trials dashboard. And you can sort by your diagnosis and then you can put in your state and find all the clinical trials that are going on in your state. But if you live in Arizona in the winter and you summer in Miami, you could also put in Florida and you could find the clinical trials that are there because maybe you have a condo on the beach. You could live there in the winter if you were in a clinical trial. So you could find clinical trials anywhere.

And clinical trials are unique in that they have inclusion criteria. So, you have to have certain characteristics in your diagnosis to be considered to be in a clinical trial because what they’re doing is really testing whether something works better than other things. They also have, unfortunately, a lot of exclusion criteria. So, that’s kind of like the strainer for your pasta. They’re the things that are keeping people out of a clinical trial. So, sometimes it’s hard to get into a clinical trial. But if you’re at all interested in finding out, look at these clinical trials. And then they give a principal investigator or other point of contact where you can reach out and see, could I be eligible for this trial? And they would find out. So, these are options.

BCAN also funds research. We have Young Investigator Awards. When Diana and John Quale got BCAN started, there was no career path to be known as a key opinion leader in bladder cancer. There were very few of them out there. And so they realized they needed to grow their own. And so they started with our young investigator program many, many years ago. And what I think is I get so excited by it. So some of our early young investigators, these are early career scientists and clinical scientists, people that do clinical practice but also do science are now known as the leaders in bladder cancer research, both the clinical side and the scientific side.

And so I think that’s really exciting and something that Diane should be very proud of, I hope she is, because some of these folks really are considered world global experts in bladder cancer. And we give away money. This year it’ll be $75,000 grants to early career investigators to get an idea started. So they can start their, what they call a CV, a curriculum vitae. Some of these doctors that are out there in our space in the bladder cancer expert community have resumes that are 50, 60 pages long because they list every publication that they ever had. And there’s a lot of them. They’re doing great work. We’re making change by growing these doctors and getting them on board with BCAN.

We just announced our first Career Development Award to bridge that young investigator to a more seasoned investigator. To give them what they need to help establish their labs at these big institutions so they can be in a better position to say, “I want my own lab and I want to be able to do this because I’ve been doing this research,” which is exciting. And we have our Innovation Award, which is a two year award, which supports the research that other companies might not be interested in because it’s what we call high risk. But if it’s successful, high reward. And it’s a really good investment in something that has a really good idea. And all of this runs through our scientific review group where they are leading experts and they’re critiquing all of these. So, we don’t just sit around saying, “Well, that one sounds like a good idea.” We actually have experts who weigh in and they score and we discuss. And then the best proposals win these awards.

We just announced our very first Translational Clinical Trial Award. We gave two awards away. We had $3 million that was a gift from one of our board members to do this. And we’re really excited that there are two clinical trials that are going to be launched as a result of that. And then the earliest way I think of this, I love to garden and I think of this as spreading little seeds. At our scientific meeting every summer, we are now coming up on our 18th Think Tank, which is our scientific meeting. We’re going to be doing it in Washington DC. We offer travel fellowships to promising fellows who really want to get into the bladder cancer space. And they’re named in honor of Diane’s husband, John Quale, which I think is just a wonderful way to keep him present all the time. And it’s just really rewarding to see over the years, these people that we gave $1,000 to so they could come to our meeting 10 years ago are now on our panel for planning this meeting. And they’re chairing different sessions and they’re leading and they’re a respected voice in the community.

So, truly the vision that the Quales had at the beginning was clearly there’s nothing going on, we’re going to have to do it ourselves. And that’s really what they’ve done. And I think if you had any sense, and I know that our fall newsletter will probably be focused on research Right, Mark? And we usually put a timeline in there. And over the years, there’s nothing, nothing, nothing, nothing. And then all of a sudden, about five or six years ago with the advent and approvals of the immunotherapies, all of a sudden there were more treatment options. And now we have a lovely dilemma of how do you sequence treatments? Which one should you do first? That’s a nice problem to have because before we only said, “Well, if chemotherapy doesn’t work with this advanced disease, go get your affairs in order.” I was like, “Well, that’s not fair. We need to have options.” And we do now. And I like to think that some of those options are because BCAN was engaged and encouraging and pushing and making sure that people put bladder cancer first.

If you like research and you like sharing your story, you might consider volunteering to be part of our research advocate program. We have a patient research advocate program. This QR code will take you to the survey that goes to me, I’m the only one that gets that, to be able to match you when some of our pharma partners want to understand the lived experience of bladder cancer. They want to know who’s taken what medications and they convene advisory boards, panels over Zoom, where you can sit and share your experience. Some of our patient research advocates have gone and applied to be reviewers in that CDMRP that I mentioned earlier, research program reviewing million dollar grants for the government to put that patient perspective.

Patient reported outcomes and patient perspective is more important than ever because our pharmacy partners know that. The government knows that. You can build a great clinical trial, but if you make it scientifically perfect and it’s onerous for a patient to participate, they have to travel too far or too many times to a big institution to get a scan or to do all these other things, they’re not going to stick it out. And so you can build a beautiful trial scientifically and not have it do what it needs to do. So if companies and researchers, independent researchers are smart, they check first with the people they’re trying to engage, and that’s what BCAN can help do. If you’re interested in being a patient research advocate, those are some of the things that we do.

So there’s a lot of opportunities to get engaged. We’ll talk more as we go through. And speaking of research, one of the sessions that we’re going to be doing this year at our Think Tank is we have a Survivorship Task Force helping BCAN understand what we need to be doing to build better resources for patients. And I’m not sure if this one is on your handout because I think I added this after the fact, but I would love for you to be part of the survey that we’re doing to get patients perspective on what they want out of survivorship resources.

There are some places that have a dedicated survivorship program. Once you go beyond treatment, now what are you supposed to do? Because you still have this in the back of your mind. It’s still there. How do you live well beyond that? So please take a minute and complete that survey and I’ll put it in the evaluation when we send it out later on as well so that you have a chance to complete that. So, please do that. I appreciate it. I’ll give you all a second to take a picture. Let me check the time. Ooh, I’m coming close and it’s good thing I’m almost to the end of my slides and then we’ll open it up for questions and then we have lunch.

You got that? Okay. Coming up, Ask the Experts. Talking about our young investigators, Diane does this amazing program in May where we ask the experts about bladder cancer, about what’s new, what’s exciting. We have a panel tomorrow featuring some leading experts in bladder cancer to find out what gets them excited about going to work every day because there are advances in bladder cancer. But we also have the online program and it’s a huge fundraiser for us too. And it’s a great chance to talk to people like Dr. Tracy Rose, who won our Young Investigator Award a few years ago. And then Dr. Phil Abbosh who wanted what, 10 years ago I think. Pardon? Oh, Tracy was… Oh, seriously. I just, for some reason. Anyway, these two are amazing young researchers, leaders in their field, incredibly respected, doing some very cool work, having other very cool researchers working in their labs. So, I encourage you to join us. Free, sign up, you can do that. That’s in your paper.

And then walk, we’ll give you a chance to sign up for a walk tomorrow as well. But you can certainly do that now. We have a virtual walk that takes place on May 6th and then we have a walk in San Diego. I don’t know what the date is for… It’s May 6th too, all the same time. And you can follow us and tweet about it and help raise awareness. So you can get that, it’s on your paper. And then we do, actually, I love to say this. We have a couple of groupies. There are some of you that follow us and it’s good. We welcome you. I am putting together the agenda for Nashville, Tennessee, October 27th and 28th now, where we’re going to build another regional network. But if you feel like coming to Nashville in the fall, the weather’s going to be nice. That’s why we picked it. And it’s easy in, easy out. So you’ll see some invites coming. Are there questions? Yes.

Audience:

So, there’s a high rate of recurrence. I’m wondering if that’s true [inaudible 01:00:31].

Stephanie Chisolm:

The question was I said that there was a high rate of recurrence even if the bladder’s removed, it can happen. It’s not as high generally, but that’s why they do regular monitoring. And as time goes on, they tend to space out that monitoring a little bit more. But bladder removal… I use a lot of analogies. So very often, sometimes you have chemotherapy beforehand to catch any cells that might have gone beyond, but not always. And then they remove the bladder and that does hopefully take care of the problem. But one of our doctors did a great presentation not too long ago and what I think is most fascinating, a one millimeter, which is a very tiny tumor, has hundreds of thousands of cells in it. You can’t possibly know that they’re all gone. And there are patients who think that they beat this. Bladder cancer is not one of those cancers that you can say with a hundred percent, I’m good. I don’t have to worry about it anymore.

I don’t say that to scare you. I say that just to keep it on your radar. You shouldn’t lose sleep over it. But if your doctor’s suggesting you go for a scan, go, don’t skip it. Just know that you need to just get checked once in a while and go talk to your doctor about it. It does reduce your risk by taking out your bladder, if that’s what your doctor’s recommending. But that’s not a hundred percent guarantee that you’ll live to an old age and die from something else. That’s not it. You have to keep communication with your doctor. And when they say, “Come back for scans,” follow up with them because they know what they’re doing. Was there another question here? Yep.

Audience:

In my case, I have blood tests every two weeks and I’ve been doing immunotherapy for four months now. Even after doing all that, I still have the high rate of recurrence.

Stephanie Chisolm:

Well, yes, this, somebody in the front has immunotherapy and is going for blood tests every two weeks. It’s more to monitor for other things probably. The blood test is not monitoring for bladder cancer. It’s more what is the impact? Because immunotherapy does have side effects that you have to stay on top of. They’re manageable, but you have to be aware of them.

Audience:

[inaudible 01:03:26].

Stephanie Chisolm:

I wasn’t planning to talk about this, but I can. Immunotherapy is something that’s given systemically. So it means it goes throughout your whole system and it activates your own immune system to fight off the cancer. What that does is it also takes out some of the defenses for other things. So there are potential side effects from immunotherapy that you should be aware of. So a common cold might be a common cold. It might not be. I had a case of diarrhea after my immunotherapy. Was it something? Tell your doctor. They’re the ones that will determine if it was something or not. You don’t know. Oh, it was just a cold or just a little diarrhea. It must have been something I ate. You have to communicate with your doctor because it is a very serious and beneficial treatment, but it does come with side effects.

Audience:

I thought BCG was immunotherapy and now I’m hearing immunotherapy is systemic. [inaudible 01:04:37].

Stephanie Chisolm:

BCG is what we call intravesical therapy. It means they put it into your bladder. And this weakened form of the tuberculosis virus activates locally because it’s bathing and touching the tumor, which is why they make you hold it for two hours, which is never an easy thing to do. And sometimes they make you roll around and get it in the nooks and crannies, not always. But it’s local because it’s treating the cancer that’s right there on the urothelial lining of the bladder. Systemic immunotherapy is given with an infusion into your bloodstream. It goes throughout your whole body.

BCG can be irritating and it impacts the ureters sometimes and then the urethra. It can be challenging for patients to have that local thing, but it typically stays there because the lining of your bladder is made to keep the yucky stuff in there until you void it out in the toilet. It’s not made for stuff to go back into your bloodstream. But if you have cancer that’s gone to the muscle or beyond, the possibility that a crazy cell has gone off on its own is there. So, immunotherapy is systemic. It treats all over in the whole body. It’s much more… I would say it’s more serious immunotherapy and the side effects are more potentially hazardous that you have to be aware of.

Audience:

So, it’s for more advanced stages?

Stephanie Chisolm:

Typically. They are working on research. I know time is up. Thank you.

Speaker 5:

No, question from online.

Stephanie Chisolm:

Oh, we have a question?

Speaker 5:

Yeah. I’m sorry to interrupt this.

Stephanie Chisolm:

Thank you.

Speaker 5:

And this is perhaps a tad bit medical, but Robert asks, “What is the relationship between bladder cancer and upper tract disease?”

Stephanie Chisolm:

Oh, it’s a very good question. I’m going to try to explain it in a way that is not too technical. Your bladder is lined with urothelial cells. They’re meant to keep all the nasty stuff that I just mentioned in your bladder. And the ureters that connect to the kidneys where urine is formed also have those cells. And the kidneys themselves have all these nice little micro capillaries where all the urine gets filtered out, all the waste gets filtered into the urine, and then it sits in the renal pelvis, which is the base of the kidney. And that is urothelial cells. So, the whole thing are all urothelial cells. They can have urothelial carcinoma cancer in them that is specific to those cells. So if the cancer is found in the ureters, the little tubes that go from the kidneys and pump the urine down all the time to the bladder where you hold it, or in the renal pelvis of the kidneys, then that is what we know as upper tract disease.

It’s a little more challenging to treat because we can all hold our bladder, some more longer than others, but you hold your bladder. But the kidneys are always making the urine and it’s always just moving it down through the ureters. So, it’s really hard to keep treatment up against where a tumor might be in that upper tract. And so they sometimes have to use other kinds of treatments. There’s a treatment that has been approved that puts the medication in as a liquid and then it goes up in the upper tract. And then it forms a gel and it holds it there for a while, which lets it sit on that tumor and work its magic. But it’s more challenging. And that’s where sometimes people do have to have a nephrectomy. They have their kidneys removed. And a nephroureterectomy, this is a good Scrabble word by the way, lot of letters in there. But nephroureterectomy is when they take out the kidney and the ureter on one side. But again, it’s all urothelial carcinoma, but we commonly call it bladder cancer. Did that explain it? Okay.

Audience:

[inaudible 01:09:24].

Stephanie Chisolm:

Yeah. Upper tract disease. Got to speak loud.

Andrea Maddox-Smith:

[inaudible 01:09:29] it’s thinner wall. The ureter’s thin, that renal pelvis is thin. So, in a bladder [inaudible 01:09:37] bladder wall. So even though it’s lined with urothelial cells, it’s going to take a lot more, you’re going to have [inaudible 01:09:45]. Ureters or the renal pelvis being so thin, it’s more prone to [inaudible 01:09:59], not necessarily through the bladder.

Stephanie Chisolm:

So for those who are online, couldn’t hear that. The ureters and the renal pelvis, the lining of the urethral cells and the urothelial cells is thinner there than it is in the bladder. So when they go in and they remove a tumor with a TURBT, a transurethral resection of a bladder tumor, they can go in and scrape out that tumor. And in many cases, that’s all they have to do. And maybe they just keep going back whenever a tumor comes. But if a tumor is considered high grade, when they do the pathology report and they look at those cells and they say that is some angry looking cells there, then they know it’s very likely to be more aggressive. The cells do look different under the microscope. The pathologist is the one that actually is going to suggest, “Hey, this is something that needs to really be addressed because these cells are very aggressive.”

High grade urothelial carcinoma has a greater risk of being invasive and spreading. So when they can’t clean it out, because the lining in the ureters and the renal pelvis is thinner, that is also another potential problem. Whereas with bladder cancer in the bladder, they can usually keep cleaning it out. So any other big questions before we break for lunch?

Audience:

[inaudible 01:11:29].

Stephanie Chisolm:

The upper tract is often discovered because of flank pain. If it’s impacting your kidneys, your kidneys are found back here on the side. And so some people will have flank pain. They also may have blood in their urine and the doctor goes in with a cystoscope to look around and they can go in with a ureteroscope further up into the ureters if they don’t see anything in the bladder. And that’s how they can find it. Yep. Sean.

Audience:

Would you mind asking [inaudible 01:12:02] bladders removed to stand again so I could contact-

Stephanie Chisolm:

Okay. Those of you who have had your bladders removed and have a urinary diversion, could you all stand again just so y’all can find each other? Because we’re about to break for lunch. Okay. Look around. Make sure you make those connections. You don’t have to always sit with your caregiver. You can mix it up. Caregivers could sit together too. This is a chance. We have that paper sign as many people up as you can, find out who traveled to come here, who had the same diagnosis that you do. These are important things. So find out, share information, make relationships. One last question.

Audience:

During this summit, will we have an opportunity to speak [inaudible 01:12:54]? Will we be given the opportunity to speak with them one on one or are they just doing a presentation?

Stephanie Chisolm:

I know that Dr. Kapoor, who’s coming is going to have to go pick up her little one from daycare, so she’s not going to be able to stay afterwards. But the other doctors will be around. But again, it’s really hard for any of our presenters to speak about your particular medical condition because they don’t have the big picture. But what I want you to think about are, Hey, I’m going to write these questions down because when I go back to my doctor, I heard at the summit that there’s this and then there’s that. Bring that up to your doctor because they have your complete record. They know you, they know your body. It’s a little bit hard for doctors to just randomly say, “Oh, well this is what you should do,” because-

Audience:

[inaudible 01:13:48].

Stephanie Chisolm:

Okay, well then you can corner them at the end. Then they’ll know. They’ll recognize you.

Audience:

[inaudible 01:13:57].

Stephanie Chisolm:

Okay, perfect. So one last question. I said that before.

Audience:

[inaudible 01:14:02]

Stephanie Chisolm:

Ah, there was a question about the BCG shortage. In case somebody didn’t know, there’s been a global shortage of BCG that’s put into the bladder to help provide local immunotherapy. And this is something that Merck has been working to try to resolve for a few years. They’re still a few years off. They’re building a new plant right next to the old plant so they can share the employees and they can do both. But they’re still a few years away. We’d love to see them move faster, but we’re doing our best to keep encouraging them to do that. But this is a global shortage. The TICE strain of BCG is the one that was approved for use here in the United States. That’s the one the FDA evaluated and said is safe for use and is effective. And we know that. So they had to scramble with the shortage and figure out, well, just how much do they have to use?

And so they found that they could use a one-third dose of this BCG. But in order to not waste it, you have to have three patients in a row in exam rooms to get the one-third dose at the same time. Sometimes it’s wasted because somebody doesn’t show up for their treatment for whatever reason. But when they defrost the BCG and activate it, then they can effectively use the one-third dose. But there are even some big hospitals that are challenged with getting enough BCG. Other countries have now approved a few other strains, but the FDA is still in evaluation mode on some of those. So, we still only have BCG as an option. Some doctors can use combinations of different chemotherapy very effectively, but BCG is still gold standard. It’s still the best thing that we have.

So, now we are going to break for lunch. After lunch, we have a very tasty presentation that is going to inspire you to go home and cook. And tonight we actually have recipes that are going to be from our presenters that are delicious and nutritious and really lovely. So, lunch is outside. It’s going to be boxed lunches. There’s drinks and everything outside. Encourage you, you can get back in and mix up with different people. Take your sign-in sheet, put it in your notebook, and get as many people contact as you can because this is your opportunity to connect. And I thank you all for being here and meet people. That’s it.