Transcript of What is a Rare Bladder Cancer Tumor? with Dr. Philippe Spiess

January 29, 2024

Listen to the podcast

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 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.

I’m pleased to welcome today’s guest, Dr. Philippe Spiess. Dr. Spiess is a Genital Urinary Oncologist and the assistant Chief of Surgical Services at the Moffitt Cancer Center. A native of Canada, Dr. Spiess received a master’s in experimental urology surgery at McGill University in Montreal and his medical degree from the University of Toronto. Dr. Spiess’s research interests include novel therapies for advanced renal, bladder, and penile cancer. Dr. Spiess has published over 440 peer reviewed manuscripts and he’s edited five textbooks on urologic oncology. Dr. Spiess currently serves as the vice chair of the National Comprehensive Cancer Network panel on Bladder and penile cancer, and sits on several international editorial boards. He is also president of the Global Society of Rare Genital Urinary Tumors. Dr. Spies, thanks for joining our podcast today.

Dr. Philippe Spiess:

Thanks so much, Rick. It’s a pleasure to be here and thanks to BCAN for the invitation.

Rick Bangs:

It’s our pleasure. So I wanted to start because we’re going to focus on rare cancers. So what defines a cancer as being rare? And in other words, how rare is rare?

Dr. Philippe Spiess:

So that’s a really good question, Rick. I think it’s something which is somewhat surprising, but I think if you look at how it’s defined in terms of rare cancer, it goes by incidents. And it’s really any cancers that has an incidence of 40,000 cases or less on a yearly basis within the United States. And as a society, as the President of Global Society and someone who’s dedicated a lot of his research and clinical care to rare cancers, I think that it’s a definition that doesn’t take into account a multitude of issues, is rare cancers, yes, it’s based on incidents, but incidence is a relative term. What we know is obviously what may be rare in a given country or region may not be rare in another, and there’s a host of various cancers that could be defined.

But to us as a society, I think it also is defined by expertise, level of patient advocacy, resources, supports, clinical trials. All those things really need to take be taken into account when we define what is a rare cancer, because obviously we want to make sure that the resources are there for patients that ultimately are affected by these to be able to get the best quality care, and the resource and support of healthcare teams as well as their family members get the support they need.

Rick Bangs:

Yeah, because in a perfect world, we’d love to have a level playing field. Everybody gets a treatment and everybody gets good outcomes, but we’re not quite there yet.

So are we moving to a world in which we all have rare cancers? Because if you slice and dice people’s diagnoses, I mean, you could probably end up with 40,000 or less depending on how you slice and dice it.

Dr. Philippe Spiess:

That’s also a very, very good question. I think is a very insightful point that you brought up is, as we all know, as science, and medicine, and clinical care is improving, we’re not just defining cancers by histology, meaning do you have bladder cancer? Is this a conventional urothelial carcinoma or is this a severe histology? But we’re also looking at molecular profiling. We understand when we look at cancers under the microscope by our pathology teams, we’re only just getting an understanding of the types of cells that are there. Really to have a better appreciation on how we best care for our patients, we need to understand the specific genes that are mutated and how we target those specifically.

So yes, I do think we are moving to an era of medicine and clinical care where many cancers will such be unique and in variance, and the concept of precision oncology comes to mind where we should really treat the patient specific to the mutations of the cancers and uniqueness of the cancer that they have.

Rick Bangs:

Yeah. So not necessarily a bad thing that we move to this world because personalized medicine’s going to take us there probably.

What would we typically not know about a rare cancer? I can see challenges related to treatment and studying survivorship issues. So am I right? Are those the kinds of challenges, or what other challenges might there be?

Dr. Philippe Spiess:

Yes, absolutely. I think our Global Society of Rare Genitourinary Tumors, or as we call it the GSRGT as an abbreviation, where it really was founded, just because what we’re realizing is number one, many of the cancers that are defined as rare, most of the data that we get across the globe are coming from centers in Europe and the United States. Many parts of the world are underrepresented in research, in science, and in clinical care. And a lot of things come as a secondary endpoint of that, is the pathology, the accuracy of the diagnosis, many areas of the world, just because they don’t see many of these cancers, sometimes the diagnosis is not established. And as a consequence, are the patients necessarily getting the best quality care? That’s something that our society has been focused in, is educating pathologists, and having webinars and specific focus groups that can help promote and advance the fundamental knowledge in defining and characterizing these cancers.

And at the end of the day, also what we are really realizing is best level evidence being applied related to the treatment of these cancers is not necessarily diversely being applied and being offered to patients across the globe. So really making sure that the voice of patients, that they have a resource where they can ask those questions related to making sure they understand what is their best treatment, where can they get that treatment if they’re not in centers clearly within the United States or in Europe. And really we’ve worked to try to invest and engage many leaders and experts across the globe so that we help promote and offer those resources to patients.

And last but certainly not least clinical trials. We clearly know clinical trials are being conducted across the globe in these areas, but many parts of the world don’t have the infrastructure and the resource to do clinical trials, nevertheless, even less so in the rare cancer space.

Rick Bangs:

So you already hinted a little bit at this, but rare cancers may vary geographically. Could you explain that?

Dr. Philippe Spiess:

Yeah, so we just wrote an article a few months ago, but it’s interesting. We were talking to colleagues in India, for example, and they were bringing to our attention that prostate cancer, for example, is something they rarely see in India, versus testicular cancer, penile cancer, those are much more frequent. We see that as well across South America.

So I think it’s important to understand that really brings up challenges related to necessarily making sure patients are getting the best quality care in many parts of the world. But also we need to take advantage to understand from areas of the world where they do see many of these cases, that we learn from their experience, maybe some other research and education that they’ve done, and vice versa, that we integrate them in clinical trial concepts so that we can make sure we’re moving forward the needle in terms of improving the quality and standard of care we offer patients.

Rick Bangs:

Okay. So we talked a little bit about clinical trials and access, but if I’ve got a rare cancer, am I as likely to have a clinical trial? Might I be eliminated because I’ve got the rare cancer? How does clinical trials work from a rare cancer point of view?

Dr. Philippe Spiess:

So currently, I would say it oftentimes is a significant challenge is oftentimes if you have an unusual variant of a certain tumor or if you, for example have a rare cancer, oftentimes you may not necessarily have a clinical trial readily available to you in your region, potentially your state, or even nationally. And I think of areas like, for example, penile cancer, and head and neck cancers are the perfect example, is oftentimes rare squamous cell carcinomas or various histologies are put into these basket trials. Basket trials, as you know Rick, is where just because certain cancers are rare, we clump them all together if there are the same histological entity.

There’s strength in doing that is obviously. It gives us an opportunity to answer clinical questions, research questions. But I think the great challenge, and I would say lack of understanding we have is does that ultimately fundamentally something of which clearly improves the care for these rare cancers? Meaning if we see a new agent that may be effective for a certain type of squamous cell carcinoma, does it necessarily mean it’s going to work for another type of squamous cell carcinoma?

So there’s inherent challenges when you do basket trials. It is clearly one way of addressing that need, but obviously the ideal concept is that we offer global trials in these various spaces so we can do these studies.

Rick Bangs:

So I want to transition specifically to bladder cancer. And the broad scope of bladder cancer, and upper tract is considered part of the bladder cancer family. Is upper tract carcinoma, is that a rare GU cancer?

Dr. Philippe Spiess:

It is. It is defined as a rare GU cancer just by the incidents that we see. And it’s interesting because obviously I practice at a cancer center like many of my colleagues, and I’m sure many of the patients within BCAN have had their care at center such as this. But I often will see one or two upper tract cancers on a weekly basis. And because of that, we’ve been able to participate in large trials.

But we know as a general rule, upper tract cancers are fairly rare. We know that what may apply in terms of certain systemic treatments, or even if you take a look at the genetic level at these cancers, they’re different than bladder cancer related to the genetic mutations that you have, efficacy of certain treatments. And sometimes you have to be very cautious to look at bladder cancer and say, “Well, if this works in bladder cancer, it’s going to work for upper tract.” They are different entities altogether.

Rick Bangs:

Yeah, I think BCG would be a great example of something, because we’re talking about the ureters versus the bladder, so you can’t put BCG easily into a ureter because it’s not something that’s an open vessel.

Dr. Philippe Spiess:

Very true. You hit on something as intra, intrarenal, or intracavitary type of treatments, BCG, mitomycin, gemcitabine. Clearly we know it’s really challenging to get those agents to stay in the upper urinary tracts. Oftentimes, whether you do it percutaneously, you put it with a ureteral stent. The challenge is the lining in that area where the cancer is being impacted. Is it necessarily getting the exposure to these agents to have the efficacy of the treatments, versus bladder cancer, clearly we can leave those agents in for the duration of several hours for optimal treatment.

Rick Bangs:

Right, right. Okay. So now within the bladder itself, what bladder cancers would fall into the rare cancer category?

Dr. Philippe Spiess:

So there are many histological entities. You think of things like plasmacytoid, micro papillary, those are clearly very unique histological entities, which a small cell of the bladder. Those are clearly cancers that behave in a very different manner than conventional urothelial carcinoma. And I think it is very important to have your pathology, particularly if it’s a high grade tumor or being reviewed, making sure that those potential histological variants are identified. Because oftentimes this may indicate that this treatment may not necessarily respond to, as you mentioned, BCG, or may be a cancer where systemic treatment may be something you may clearly need to do before you consider surgical management. And so as we all know, the optimal treatment fundamentally is based on establishing the correct diagnosis and making sure exactly we understand the types of cancers we’re treating.

Rick Bangs:

Yeah, because everything hinges off that, knowing exactly what the diagnosis is, drives exactly what the treatment should be.

So you mentioned three kinds of rare bladder cancers. Those were, I believe, all very aggressive forms of bladder cancer. So do the rare bladder cancers tend to be more aggressive?

Dr. Philippe Spiess:

They tend to be. They tend to. And unfortunately the pattern of disease progression is sometimes somewhat different. The perfect example that we often talk about, and I know many of the listeners probably have heard of this, is plasmacytoid. I would say plasmacytoid. Whenever we see that histological entity identified, we very meticulously assess what we suspect is the clinical stage of this patient. The classic thing with plasmacytoid is it is very challenging sometimes to identify whether the patient may have a spread of the cancer within the peritoneum. And sometimes you may have deposits, which you may not even pick up on imaging studies. So oftentimes you want to make sure you clinically stage patients and you treat them aggressively, but do so in a very time sensitive manner.

Rick Bangs:

Okay. So if I’ve been diagnosed with a rare bladder cancer, accurately diagnosed, what challenges and opportunities might I have?

Dr. Philippe Spiess:

Number one is really making sure you’re being treated at a center where you know the experts are there and have an understanding that this is something unique that needs to be treated. And as you mentioned, it ultimately starts with having the pathological classification. I often tell people high grade or invasive bladder cancer should be seen in a multidisciplinary fashion. I think that the days that these patients are only being seen by a surgeon, or by a medical oncologist, or a radiation oncologist, is really very few and far between. You want to really make sure you’re getting that personalized approach where you’re getting experts in all these specialties that are coming in, and weighing in, and really identifying what is going to be your best treatments.

And at the end of the day, I think it’s important that we give options to patients so they understand the benefits, the drawbacks, the risks, and that they’re able to decide. But it’s important that we give choices to patients, educating them and informing them related to the pros and cons, and what the benefits and potential drawbacks are going to be of these treatments.

Rick Bangs:

Yeah, that makes perfect sense. So I want to talk a little bit about the Global Society of Rare Genital Urinary Tumors, the GSRGT. Tell us a little bit about that.

Dr. Philippe Spiess:

So I’ve been very privileged. It’s a society we founded three years ago. One of my good friends who is a thought leader in genitourinary oncology, professor Andrea Necchi, who’s at San Raffaele in Milan, who’s done some really great work in bladder cancer, developing innovative treatment approaches for advanced disease. Both him and I have been research collaborators for many, many years.

And what we realized is there was really a lack of resources for patients and for healthcare professionals dedicated to rare cancers. And we thought there’s an opportunity here to get expertise from across the globe to work together in improving the quality of care for patients, elevating the level of patient advocacy for patients, and really as a mission developing projects and the ability to promote clinical trials across this space. And it’s really been heartwarming, Rick, is that it’s really been embraced from a number of colleagues across the globe.

We’ve been able to do a number of clinical studies, which honestly would’ve never been possible in the rare cancer space, answering questions that basically would be unanswerable if dedicated centers haven’t been able to work together to put a lot of their data and understand ultimately how we best treat patients. And I would say on the educational space, it’s given us opportunities to develop webinars in all these various cancers for pathologists, for urologists, for medical oncologists, for a number of multitude of people who are interested in this area.

And we’ve worked with a lot of patient advocacy groups. We’ve written a few educational resources and worked as well with, for example, the seminars in nursing oncology and developing a resource for patients who are impacted rare cancers. And it’s really incredible to see how every year we’re able to do a number of various research projects and elevate the quality of care that patients are being developed.

And I will tell you, I think much like science and in research, I think although we’ve achieved some by doing some retrospective and some gathering some data, I think we’re really where we want to go is we want to be able to develop global clinical trials in the rare cancer space and really be able to promote it and offer it to patients across the globe. And I think there is a great opportunity here, is clearly by getting the expertise and by getting clinicians and scientists across the globe to embark on this, I think it becomes very appealing to industry and to potential sponsors to want to do these types of trials with us.

Rick Bangs:

Yeah, because it amplifies that voice, because not all speaking individually, you speak collectively. This is just so wonderful.

So I think you said about three years ago that the society was created. Talk a little bit about the representation within the society. You mentioned Dr. Necchi, but talk about the disciplines that are in, what kinds of people are in the society?

Dr. Philippe Spiess:

The society’s broken down into three specific areas. One is education, and there’s a component for healthcare, and for patient and patient advocacy resources. That has been something with Professor Ben Ayres, and LSU and our institution have been leading. And they’ve done a bunch of journal clubs and really tumor boards to try to present cases to colleagues who may not necessarily see these types of cases. And we have some podcasts where we’re excited we’re going to be launching with BackTable Urology this year.

Rick Bangs:

Oh, great.

Dr. Philippe Spiess:

So that’s very exciting. And I think one of the major areas is obviously a research in science. And there’s a number of subcommittees on the various disease sites on variant histologies. Roger Lee has been doing some exceptional work at our institution in this space with Jeff Frost. And then we obviously have penile testicular urethral cancers. We have a few, I would say white papers we’re developing in these areas, which I think is going to help standardize a little bit of best level evidence and quality care. I think those are going to be critical as hopefully those are going to help elevate the level of care patients are getting.

And the third piece is obviously we want to work to develop some philanthropic opportunities to make sure that we’re able to develop meetings and scientific gatherings for people who are dedicated to this space. We’re excited. We’re going to be having a meeting in early March of 2024 in Tampa dedicated to variant histologies of bladder cancer. Professor Ashish Kamat has been a really wonderful resource, and Shilpa Gupta as well. And we’re excited this meeting is going to be taking place, and really focused to this area. And we’ve had some industry interest to want to work with us in this space, and develop what I would say best level evidence, and develop a framework on how we could do clinical trials in the variant histology space, and really start moving the needle a little bit as an area of focus for future trials.

Rick Bangs:

Very exciting. Very exciting. So you mentioned a little bit about patient efficacy. I wonder if you could elaborate a little bit more on how the voice of the patients represented within the society.

Dr. Philippe Spiess:

First of all, Rick, you’ve been an incredible advocate. And I know a lot of the readers know this, but not only in bladder cancer, but having worked with you for many years on NCCN. It’s incredible what you do in making and raising awareness. So thanks for all you do.

And I’m excited as well that I think we need to do more in the rare cancer space. We’ve been talking obviously in penile testicular urethral cancers, is there’s organizations in Europe that are dedicated to this like Orchid. But in North America, it’s very frustrating to see there is really a limited amount of patient advocacy dedicated to this. And we’ve partnered with Orchid doing that, but there’s no question, I think our society has a great need to help elevate this in terms of providing a resource for what patients and families who are identified with this diagnosis to go to a resource where they can know a little bit more.

Our website has now launched, and has now relaunched a few months ago to provide resources for patients and families impacted with this. But I definitely think we’re excited to hopefully continue to partner with you and others that are dedicated to rare cancer space to continue to elevate this because I think there’s a huge unmet need right now related to that.

I think patient advocacy for us is something that we really think that it’s critical. We do this through scientific journals, research, but also through offering webinars and resources online as much as through various scientific venues. And so we’re working on a bunch of various webinars this upcoming year to try to develop resources and educational sessions specific for patients and families. And we’re excited that this is going to be launching as well as a global initiative.

Rick Bangs:

Awesome. That’s absolutely terrific. So I went out to the GSRGT site and I saw this statement and it really caught my eye, so I’m going to read this statement. So it said, “Among the primary goals of the Global Society of Rare Genital Urinary Tumors, according to Dr. Spiess, is to bring together experts from both low and high income countries to develop treatment guidelines that can meet the needs of diverse cultural patient populations and geographic areas, and provide consistent care for patients in every country.”

So I’m wondering if you could elaborate a little on this because I think it’s something that our listeners would be interested in.

Dr. Philippe Spiess:

Yeah, so it is really something we take to heart, is that we clearly see in many parts of the world, and I’ve been privileged to have done some research and collaboration with people in South America, people in India, for example, where they see a number of various cancers. But the challenging and frustrating things they have is they don’t have access necessarily to the best level evidence or clinical resources related to various trials or various best level evidence in how they should get their care.

And we’ve had some really great partners we’ve developed now in India who are very committed to working with us. One of them, professor Gagan Prakash is at Tata Memorial, one of the busiest cancer centers in India. And he’s really committed in promoting many of our, I would say, fundamental goals to elevate the quality of care in some of these, unfortunately lower income countries where clearly they see a number of patients with these types of cancers. But as we all know, the only way you’re going to impact parts of the world, which we may not necessarily be practicing in, is to partner with dedicated colleagues and resources, where clearly are boots on the ground, and could promote the mission and really elevate the quality of care.

So I think we’re excited about this, no question. I think this is going to be continued to be, I would say, a challenging situation. Because as we all know, a lot of clinical, and surgical, and multidisciplinary care requires funding, requires resources. But I think the first and foremost is working with infrastructure of dedicated colleagues and resources that may be in healthcare systems, but potentially patients may not be aware that they’re readily available to care for them.

So I think that we’re excited about partnerships. We’re always looking for future partnerships. I’ve had a number of people across the globe, including parts of Africa for example, who are very interested in working with us. And we’re definitely very committed. So to all the readers out there, if you know of parts of the world where there may be a need or a resource which would want to partner with the Global Society, please feel free to reach out to myself through Rick or through directly through my Twitter page.

Rick Bangs:

Excellent. So many opportunities and challenges here, but it’s so exciting that you guys are actually addressing this. This is really fantastic. So as we wrap up, any final thoughts?

Dr. Philippe Spiess:

Well, first of all, I think dedicating a podcast to this is very meaningful. I want to thank you, Rick, personally, and I want to thank BCAN. I think the fact that this is getting and raising awareness of this is critical. And I’m really, really excited that you’ve allowed us to be part of this, and share our goals, our missions, the challenges that are currently lay ahead, and how we could address those. And definitely look forward to working with you, BCAN, and obviously all organizations in promoting and advancing the care of our patients and our families. They very much deserve it, and we’re very much committed to doing that.

Rick Bangs:

Excellent, excellent. Well, we’re here to help. So Dr. Spiess, I want to thank you for helping us understand these rare degenerative urinary cancers, particularly the rare bladder cancers, and the challenges and opportunities we have in this space.

If you’d like more information on bladder cancer, please visit the BCAN website, www.bcan.org.

In case people wanted to get in touch with you, could you share that Twitter or X handle that you mentioned?

Dr. Philippe Spiess:

Sure. So my personal Twitter X handle is @SpiessPhilippe. And our society Twitter page is @Gtumors. And looking forward to hopefully hearing from all of you. Thanks again for the time. And Rick, thanks for all you do. You’re an incredible resource. And I appreciate you as a friend, as well as an incredible collaborator and contributor to the NCCN and other initiatives.

Rick Bangs:

Always my pleasure. Always my pleasure. Would you mention the website as well, because people might be interested in taking a peek at that?

Dr. Philippe Spiess:

Yeah, absolutely. So our website is www.gsrgt.com. It is definitely a great resource. We’re always continually updating the website. And definitely if there’s things that you feel the website should include or develop, please reach out to me again through my Twitter handle or just contact me at any point. I’d love to hear from you and learn from you in terms of what you think is critically unmet needs.

Rick Bangs:

Okay, great. Listeners, pay attention. He’s looking for feedback.

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. Be sure to comment and subscribe to this podcast so we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Dr. Spies.

Dr. Philippe Spiess:

Thanks 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.