Transcript of Bladder Cancer Matters Podcast Episode 7: The Future of Bladder Cancer Research with Diane Zipursky Quale and Rick Bangs

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This is a transcript of the Bladder Cancer Matters podcast in which host Rick Bangs in joined by BCAN co-founder Diane Zipursky Quale and they discuss new horizons in bladder cancer research.

Rick Bangs:

Welcome to a special Bladder Cancer Awareness Month episode of Bladder Cancer Matters.

Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances in bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Bangs the host of Bladder Cancer Matters a podcast for, by and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network or as many call it, BCAN, producers of this podcast. This podcast is sponsored by Merck and FerGene. I’m excited to have Diane Quale, my friend and the co-founder and director of BCAN as our guests today. Diane has done more than anyone I know to advance the cause of bladder cancer and create opportunities for collaboration and networking with key bladder cancer stakeholders. She has created what some would understand as the room where it happens from the musical Hamilton for the bladder cancer community. Diane, I’m so pleased to have you here today to talk about our article on future directions in bladder cancer research.

Diane Zipursky Quale:

Thanks for that lovely introduction, Rick. It’s always a pleasure to be with you and as you know, I never turn down an opportunity to talk about BCAN and bladder cancer, especially when it comes to bladder cancer research.

Rick Bangs:

Let’s start with a little bit of context. So your husband, your late husband, John was diagnosed in 2000 and I’m going to give our listeners a sense for the dramatic changes in bladder cancer by helping people understand where we were at the time of your husband’s diagnosis. So what was the state of bladder cancer at the turn of the century around 2000?

Diane Zipursky Quale:

I have to say, honestly, it was pretty dismal. When John was first diagnosed, we’d never even heard of the disease and certainly didn’t know anyone else who had it. So we were really surprised to find out how common it was that there were no real treatment options. And when John was diagnosed with metastatic disease in 2001, and he had chemotherapy. He had the combination of gemcitabine and cisplatin and at that time it had just recently been started to be used and never even was approved by the FDA for the treatment of bladder cancer. There were very limited trial options. Many clinical trials that had been opened at bladder cancer were closed because of lack of accrual. There was no patient voice. There was no patient advocacy. There was no general awareness about this disease and there was little research being done. Back at that time when we did some investigation in terms of funding from the National Cancer Institute, bladder cancer was at the bottom of the ladder.

Rick Bangs:

So you saw this and co-founded BCAN in 2005 with your husband, John. And that was a year before my diagnosis in 2006. So you saw these huge needs and meeting patient needs because you had actually lived through them on a personal level. So if we fast forward 10 years to 2010, what had changed in the decade since your husband’s diagnosis in 2000? What was new in 2010?

Diane Zipursky Quale:

BCAN came around in 2005. So everything changed, right? So we had started creating our bladder cancer community, and that was a big thing. We already had a very strong core group of bladder cancer survivors and their families who are engaged in our community. The first bladder cancer think tank was held in 2006. And so by 2010, we’d seen a lot more collaboration, a lot more focus on treating bladder cancer as a multidisciplinary disease, not just from a urological standpoint, but also from a medical oncology standpoint. We had partnered with Inspire for the first Bladder Cancer Online Community. So there was, I think, a little bit greater awareness. We had been creating the community, but in terms of advances in medical treatments, really not much had changed over the 10 years. There had been advances in the surgical treatment of bladder cancer.

And as you yourself know, your neobladders became more common. The surgical techniques for that were greatly improved. We saw a bit more happening in the area of bladder preservation, but we still didn’t have major pharma companies focused on new treatments for bladder cancer. We didn’t have any drug approvals, and we still had limited clinical trials available. And so opportunities for people who wanted to start a career in bladder cancer really worked to widespread. So Rick, you and I met, and I think it was in 2009 in Cleveland when BCAN was doing a patient forum and it was soon thereafter I reached out to you and asked you if you would be interested in being a patient advocate for one of the government funded cancer research organizations, Swag and help engage in bladder cancer clinical trials. And you said, “Yes,” and for that, I am ever grateful. What did you expect and what did you notice when he first got started?

Rick Bangs:

So I’m eternally grateful for the opportunity because it’s been one of the most rewarding experiences of my life, but I think I was a little naive. I had gone to the BCAN Forum in Cleveland and heard about the funding and how bladder cancer was underfunded. So I expected some of that, but what I guess what was surprising to me was that there weren’t a lot of great things in the pipeline. There were some great people working on some important questions, but I really didn’t see the cure for bladder cancer coming down the pike relatively quickly. And I was a little surprised that there was a trial that we were working on, that we were actually having trouble accruing patients for. And I reached out to you and worked with a Swag team and we actually turned that trial around and actually changed the standard of care. But it was really kind of a mystery to me why we could be underfunded and not be able to actually accrue patients for a trial. So that was my initial response.

Diane Zipursky Quale:

Yeah. Well, things have certainly changed since that time, have they not?

Rick Bangs:

Oh, yes. And so let’s talk about that. Let’s jump ahead another 10 years. So, let’s jump ahead to the today. What’s changed in the past 10 years?

Diane Zipursky Quale:

Well, I mean, it’s very exciting. It’s changed in every way. The bladder cancer community has grown greatly from BCAN standpoint, certainly in terms of the number of patients and family members we’ve been able to reach. From the research side, certainly the number of physicians and basic scientists who are engaged in bladder cancer research has greatly increased. We’ve seen, thankfully, great interest on behalf of pharma companies and biotech companies who are actively engaged in clinical trials for new drugs. There’s been this explosion. I mean, starting in 2016 where we hadn’t had a new bladder cancer treatment approval in like 30 years. And over since 2016, we’ve had what, eight or nine approved in this short time. So it’s really, really exciting and it’s exciting to see. I mean, I know, Rick, you’ve seen this because you attend a lot of the same medical conferences.

I do like the oncology meetings and the urology meetings. And I remember when I first started going back 15, 16 years ago, there’d be very few presentations on bladder cancer and the room would be small or not very much filled with people listening to the presentations. And now there are dozens of presentations on bladder cancer and in many cases it’s standing room only in these huge exhibition halls. And for me, that’s one of the most exciting things to see. Finally, I think the bladder cancer is getting the type of attention that it deserves. There’s a lot more to be done as we both know, but it’s been going in the right direction and that’s terrific. I know, Rick, that you’ve been involved, in addition to Swag, with several different cancer research organizations. And how about you? What would you say are some of the biggest changes or differences over the last 10 years?

Rick Bangs:

I think you’ve pointed out there’s so many better options and better outcomes because of some of this work that’s been done. And that’s incredibly exciting to see. And then I notice a lot more interest as you’ve pointed out in bladder cancer. There’s more projects. So I’m busier in the work that I do and that’s a good thing. I think there’s more excitement in terms of the work that’s being done or the work that is being talked about in the pipeline. There are more stakeholders involved, more interaction between stakeholders like pharma and so forth. And there’s just more engagement of patients and more patient centricity, even though I think the bladder cancer space has always been really nicely collaborative. I just see more of that.

Diane Zipursky Quale:

Yeah and I think one of the things that’s been so rewarding for me is to see the focus on really treating bladder cancer as a multidisciplinary disease. It’s no longer just seen as a neurological disease in the area of surgeons. And I think that’s really important when it comes to focusing on the patient needs and focusing on quality of life and not always being so quick to come to the conclusion that the only option a patient has is removal of his or her bladder.

Rick Bangs:

Yeah, absolutely. The whole concept of bladder preservation required other stakeholders to be involved and we’re really lucky that some of those people are involved, their radiation oncologists and the medical oncologist working toward bladder preservation, which I think we’d all be in favor of.

Diane Zipursky Quale: Yes.

Rick Bangs: So, here we are. It’s 2021. So we’ve got some large voids in our scientific knowledge and yet some exciting possibilities.

Diane Zipursky Quale: Yeah. I don’t have a medical degree. I probably should have said that at the outset, right? Full disclosure. I am not a doctor nor do I play one on TV or on a podcast.

Rick Bangs: Both of us.

Diane Zipursky Quale:

Both of us. Right, right. But one of the things that I have learned over the last 20 years is that the more that we know about bladder cancer, the more that we increase our understanding, the more we realize that there’s so much more that we need to know. And it’s one of the things that makes it both exciting and yet certainly frustrating from a patient and advocate standpoint is that kind of challenge. But it’s really wonderful. I think that in the bladder cancer space, you and I, and the whole patient advocate community really has an important place at the table in defining research priorities. Where do we go next? And I think that the medical and research community does listen to us and recognize that really the most important thing when you think about where we should go next, and what do we need to know is, we need to focus on what the patients need most of all.

Rick Bangs:

So, let’s talk about what we need and future directions and talk specifically about the article. So I was asked by one of our researcher friends. He was editing a special issue. It’s going to be devoted to bladder cancer. It was going to have several articles, actually 14 articles and he asked for some patient advocate future prognostication. What do we think the future direction of bladder cancer research is? And you were kind enough to accept.

Diane Zipursky Quale:

Well, I’m not sure I’ve ever said no to you, Rick. But at the same time it was really a wonderful opportunity and actually a lot of fun for me to work with you on this and really think about, “Okay, what is it that the bladder cancer patient needs? Where are the priorities? We’ve seen what’s happened and the tremendous growth of the last 10 years. So how can we influence the coming years and make sure that we keep the patient and the patient voice in terms of what is needed front and center.” And that’s really become… I mean, it’s not a hard sell to our medical researchers who really do seek out the input of the advocate voice.

Rick Bangs:

Yeah. We’re really lucky in that regard and I think we’ve actually gotten luckier over time and built a lot of credibility, which I think is important. They really want to hear what we have to say. And they’re very generous in giving us a place at the table. I think they’re more generous perhaps than some of their counterparts, which is a nice place for us to be.

Diane Zipursky Quale:

Yeah. And I think one of the things that BCAN has been so successful at is you and I are not the only patient advocates whose opinions are being sought. And we at BCAN have a whole cadre of very well-trained and experienced research advocates who can get a seat at many of the tables. And I think that’s really important as we move forward. And BCAN is very committed to continuing to increase that voice and the number of people who feel comfortable in this environment, really speaking up and providing that perspective on research priorities, but also in clinical trials and every other thing that is going on.

Rick Bangs:

Yeah. I think it’s so important to develop that pipeline of patient advocates and I think BCAN’s done a great job in that respect, so. I thank you for that. So, much like the podcast in the article, we started talking about where bladder cancer has been, and we talked about where we are now, and then you and I laid out seven priorities and then some supporting priorities under those seven. So I thought it might be interesting for our listeners to hear about each of the priorities. So let’s start with the first one, prevention of disease.

Diane Zipursky Quale:

Yeah. That’s an obvious one, right? If we could prevent bladder cancer we could all go home and be very happy because we wouldn’t have to worry about finding treatments for disease, if we could just make sure the disease never happened. I know that’s a bit Pollyanna, but when we talk about it with respect to bladder cancer, I think we need to do a better job in finding more effective smoking cessation programs. Smoking is one of the primary causes of bladder cancer and I know years and years and billions of dollars have gone into try to get people to stop smoking. Not to start in the first place, but also stop smoking. I think we need to focus on getting more effective smoking cessation programs in place and this means, not just with urologists, but with primary care physicians. And we also need to have an improved understanding of the environmental impacts on bladder cancer.

There are many exposures to toxins in our environment that we know have a link to bladder cancer, but we don’t understand it well enough. And we haven’t found a way yet how to protect people from these exposures or when they are exposed, to effectively screen them so that we could perhaps get earlier diagnosis of the disease if we had these better screening tools. And I think that moves to the second of the priorities we had, Rick, which was on improved diagnostics.

Rick Bangs:

Right? So there we talked about making sure we found it as early as possible if we have to live with bladder cancer as a disease. Find it early as possible, understand what type of bladder cancer this really is and have good ability to forecast. If I know the type of bladder cancer specifically, a patient has, be able to identify exactly which treatments work and which treatments don’t. So do I need chemotherapy or should I go right to surgery on things like that? And last but not least, and this came up in the first time I ever met you was making sure that pathology is correct. I think as patients, we don’t understand that pathology is both an art and a science and getting the right diagnosis is so important to having the right treatment plan and outcomes.

Diane Zipursky Quale:

Absolutely. And I think that along those same lines, if somebody asked me what’s one of the primary lessons I’ve learned about medicine and research over the last 20 years, and I would say that it is an art, not a science. And there are oftentimes there’s not one right answer, but we need to work towards getting more information and getting closer to that right answer every time as well. And that moves to another one of our priorities, which was getting a better understanding of the different variants of bladder cancer and how it affects all the different subgroups. I mean, as cancer research has advanced and we seek the need for personalized medicine, I think what that means is that everybody’s cancer is different and you have an n-of-1 when it comes to treating cancer. And with respect to bladder cancer, we have the most common type is what we refer to as your urothelial cancer.

But there are also these other paths of bladder cancer. For example, people might be familiar with the term micropapillary or small cell or squamous. And oftentimes when someone’s diagnosed with bladder cancer, it’s not just strictly with this urothelial cancer. It might be a mixture with some other types as well. And we need a better understanding of the differences of these different subgroups, so that, again, as you said before, we can give the patient the right treatment for their kind of cancer. And similarly, we’ve known all along that bladder cancer is much more common in men than in women, but women have a worst prognosis and are often diagnosed at a later stage. And we still don’t understand what’s behind and underneath the biological differences between men and women and bladder cancer. And I think it’s really important that we tackle that issue. And similarly, we know that African-Americans have a worse prognosis than Caucasians, and yet we don’t understand why. And I think it’s time now for us to focus on that as well.

Rick Bangs:

Absolutely. And not forget our upper tract friends.

Diane Zipursky Quale:

Absolutely, yes.

Rick Bangs:

Right. Because they’re part of bladder cancer, so.

Diane Zipursky Quale:

Yes. In fact, my late husband was first diagnosed with upper tract disease. That’s where it first appeared. So yes, it’s incredibly important.

Rick Bangs:

Yep. Okay. So the next recommendation had to do with safer and more effective therapies. One of the obvious things here was to make sure we have alternatives to BCG. Certainly wouldn’t want to have shortages like we’ve had over the last decade. Make sure we have some alternatives, be they different strains of BCG or completely different alternatives to BCG, much as it is quite effective for many bladder cancer survivors. We talked earlier about bladder preservation and having more emphasis and focus on that and also making sure that we account for the fact that therapies that cross a number of categories tend to do better. So having combination therapies for advanced disease, whether it’s immunotherapy and chemotherapy and radiation therapy and/or something else, some combinations. Those combinations tend to be more effective.

Diane Zipursky Quale: Yeah, and I would, again, circle back to what we’ve talked about just a few minutes ago and the need to really be able to… You and I put an emphasis on improving our ability to really stratify patients, to put them into the appropriate categories for recurrence and invasion, and really make sure that each patient go back to [inaudible 00:22:07] being personalized medicine, right. Each patient getting the most effective treatment for their type of disease. And I think that’s really crucial. We also highlighted the need to continue to provide advances in survivorship care and always to improve the quality of life. Finding the right treatment is really important, but if the treatments are so toxic or difficult that living with the side effects is really horrible, then the balancing is all off. And I think as we talked about before, one of the great changes that we’ve seen over the last 10 years is really more focused on the patient need and listening to what patients need to improve their quality of life.

Rick Bangs: Yeah, absolutely. Absolutely. And so to accomplish these recommendations to be successful, we propose some overarching recommendations that would apply universally. So the first one had to do with improved access to clinical trials, and there obviously would want to account for the financial burden that you’ve already mentioned, but we also want to think about any of the logistical burden. So if I have to go and every day for three weeks solid for treatment, [crosstalk 00:25:58] right and work through that, we want to make sure that we’re not having these disparities between different races or ethnicities or gender, making sure that it’s an even playing field for everybody. And equally as importantly in, it’s always been everybody’s future vision.

So that really means understanding and trying to alleviate side effects of treatments, understanding the long-term impacts of treatments, especially for people who’ve undergone removal of their bladder. And what does that mean in the long run? And someone like you, who’s been living with his neobladder for 15 years now, what does that mean? And what’s it going to look like 25 years from now? We also understand that our new immunotherapy treatments, when they are successful for people are so successful, but they come with a host of potential long-term side effects. And I think we need to make sure we have an understanding of those and a way to alleviate those. We also don’t want to forget our caregivers. And I certainly speak from personal experience about this. And I often say that a caregiver also can be deemed as a survivor.

The impact on our lives of our loved ones having bladder cancer is so significant. It’s almost the same, except that we don’t have many of the physical side effects of treatment as our loved ones do. But we really need to focus on how we can make sure we support those caregivers because by supporting the caregivers, the caregivers can then support the patient and it’s a win-win for everybody. And I don’t think this is just a need in bladder cancer, I think. All cancers need to make sure there’s an increased focus on the needs of the caregivers. And I think also this is true for many cancers. It’s certainly true for bladder cancer. Bladder cancer continues to have the highest per patient cost of any cancer and perhaps it’s in large part because bladder cancer will be a lifelong disease because of its high recurrence rate.

But we have to make sure that we find ways, effective countermeasures, so that people are not facing great financial distress because of the cost of their bladder cancer treatments. And that’s certainly something that’s coming more into play as we see the higher cost associated with some of the new and exciting treatments that are being approved.

Diane Zipursky Quale:

Exactly, exactly. And so unless we really make it easier… And I would say part of the standard of care and any patient treatment plan should include the access to clinical trials. People just need to know much more about it and we just need it to make it easy to do. I remember all those years ago with my late husband when I was trying to get him into a clinical trial, and this would have been in 2008 and it was one of the most frustrating experiences in our entire cancer journey. And here I considered myself to be knowledgeable and educated. So I thought of, “Wow, this is difficult for me.” Imagine what it is for people who haven’t had the access that I do. So I think it’s absolutely critical that we focus on that. And again, I think that’s an issue that we share with many other cancer types, but my particular focus is [inaudible 00:27:55] on bladder cancer. Yeah.

Rick Bangs:

Right. Right.

Diane Zipursky Quale:

Yeah. And the last thing that, again, is you said that that sort of underlies all that we talked about. One of the things, and we’ve mentioned this already is the need for the collaboration, for the partnership, not just multidisciplinary so that the urologists and the medical oncologists and the radiation oncologists are all playing in the same sandbox and that any bladder cancer patient has this team of professionals who are looking at the best possible treatment plan. It’s also really important that institutions collaborate with one another, that we don’t have competing priorities and that the resources are shared and used most effectively. And I think also in the bladder cancer area, it’s really important that we collaborate, not just in the major cancer centers in the academic community, but that we bring in the community practices for those collaborations as well, because we know that’s where the majority of bladder cancer patients are seen.

And so it’s really the opportunities become very exciting. We’ve seen a lot that’s happened recently in team science with these really dream teams getting together and tackling some of the most important issues. And I think that’s what we need to continue to see so that we can see major advancements in the years to come.

Rick Bangs:

Yeah, we definitely need to include our community members in the teams and make sure that the clinical trials are available to patients in the community setting and that we’re also delivering these cutting edge treatments to them as well.

Diane Zipursky Quale:

Absolutely.

Rick Bangs:

So in closing, you and I both urged as always to keep the needs of the patient front and center. And I think I speak for both of us when I say that we really appreciate being asked to contribute and how positive a sign that is for the patient voice.

Diane Zipursky Quale:

Absolutely. And I think it’s one of the things that makes… you mentioned this as well, too, Rick it’s one of the things that makes the bladder cancer community so special. And from the beginning, BCAN has had this really strong relationship with the medical professionals who are focused on bladder cancer. And I think that bond has only grown over the last 16 years. And I think it’s really what has allowed us to make the advances and seeing the great changes that we have seen. And I think it just is a really… it’s such a hopeful time for our community and I think that with all the great minds and resources that are being put to the research in this area and recognizing that the professionals are putting the patient voice first, that we really will see tremendous advancements. Hopefully we can talk again in 10 years and we can say, “Wow, look at where we are now.”

Rick Bangs:

Wouldn’t that be great? Wouldn’t that be great?

Diane Zipursky Quale:

Actually, what I hope for in 10 years, Rick, is there are even more people. It’s not you and I having this discussion, but it’s our younger generation having this discussion about all the changes that have happened in bladder cancer and what we can see for the next 20 years as well.

Rick Bangs:

Wouldn’t that be awesome.

Diane Zipursky Quale:

Yeah.

Rick Bangs:

So Diane, I want to thank you so much. I know our listeners will appreciate understanding the past, the present and the future direction of bladder cancer research. We talked about the stagnant paths and some of the advances that have been made in the past decade, which are so exciting. And then all these amazing possibilities that we have that are going to require funding and researchers in 2021. And of course the increasing respect for the voice of the patient.

Diane Zipursky Quale:

It’s been a pleasure, Rick. I’m glad we’ve had this opportunity to talk and I hope that people who are listening might be interested in getting involved as well.

Rick Bangs:

All right. So let me give him some options to do that.

Diane Zipursky Quale:

Wonderful.

Rick Bangs:

So if people want to learn about advocacy and volunteer opportunities including working with researchers, they can check the BCAN.org website. That’s B-C-A-N.org, or they can contact BCAN directly. If they’d like to participate in the May 26 interactive session that Diane will be moderating and pose questions about bladder cancer to two experts who also happen to have been funded by BCAN’s Young Investigator Award, they can sign up by going to BCAN.org/ask. And if they’d like to join the Virtual Walk for Bladder Cancer, which is primarily held on Saturday, May 11th, or they want to donate to BCAN, they can go to BCAN.org/walk. And last but not least, if they would like a copy of the paper that we co-authored, Future Directions in Bladder Cancer Treatment and Research, The Patient Advocates Perspective, they can go to BCAN.org/paper for a copy through May 29th.

Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at +1 888-901-2226. That’s all the time we have today. Thank you for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Diane.

Diane Zipursky Quale:

Thank you, Rick.

Voice over: Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit BCAN.org.