Transcript: Where Should I Be Treated? Large Academic Institutions or Community Hospitals?

March 5, 2024

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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. Elizabeth Guancial. Dr. Guancial is a medical oncologist who was originally from Western New York and graduated from Hamilton College. She received her medical degree from Harvard Medical School in 2006, and was a Howard Hughes Medical scholar at the NIH, the National Institutes of Health between 2005 and 2006.

Dr. Guancial stayed in Boston to complete her medical training at Massachusetts General Hospital for internship residency, and Massachusetts General Hospital, Dana-Farber for fellowships in medical oncology and hematology. She sub-specialized in genital urinary medical oncology under the direction of her mentor, Dr. Jonathan Rosenberg, who is a member of the BCAN Scientific Advisory Board. She then joined the faculty of the Wilmot Cancer Institute at the University of Rochester in Rochester, New York from 2013 through 2018, before leaving to join Florida Cancer Specialists, FCS, at the Sarasota location in 2018. While FCS is a general community-based medical oncology practice, her focus is on genital urinary and gynecologic malignancies, and she remains active in clinical research. Dr. Guancial, thanks for joining our podcast.

Dr. Elizabeth Guancial:

Thank you so much for the invitation.

Rick Bangs:

So you’ve worked in both the academic and community settings and so I can’t think of anybody better to talk about today’s topic, which is bladder cancer care in both of those settings. So could you start by defining each of those settings and tell us how they might be different?

Dr. Elizabeth Guancial:

That’s a great question actually. So when I think of an academic medical center, I think of a three-pronged mission. First of all, is to teach. Academics, to me, refers to training the next generation. So teaching is really critical to that mission. The second piece is research, whether that is basic research, clinical research, translational research, trying to generate new knowledge. And then the third component is patient care. And so our colleagues who work in an academic setting are really trying to juggle all three of those, which can be difficult. Some choose to focus on one of those three missions more than the other, but the institution itself is really there to push all three forward. In a community setting, the difference, the priority is patient care. Day in and day out, that’s what physicians do, taking care of patients. Sometimes there are settings where research is part of that, and part of why I chose to join Florida Cancer Specialists is that research is part of our day-to-day mission.

And so for me, that was really important. But there are many excellent community practices where they don’t do clinical research for a variety of reasons. And then the third difference, I would say, is from a teaching perspective, some community practices have a teaching presence and others don’t. Florida Cancer Specialists, we do have a relationship with University of South Florida. I’m one of the faculty for the Palliative Care Fellowship program through our community hospital, Sarasota Memorial Hospital. So I do have a small component of teaching, but teaching and research are usually… not all community centers have it and it’s not the same priority as straightforward patient care, clinical care.

Rick Bangs:

Okay, got it. And we’re going to come back to the research component later on. So most bladder cancer patients get their care in a community setting. I don’t know what the exact number is, but why is that?

Dr. Elizabeth Guancial:

So many reasons. So I think the first thing to look at is there are so many more community practices than there are academic practices. I agree, I don’t have statistics at the top of my head, but some towns, for example, don’t have any academic centers in them, and it’s a number of hours until you get to the closest one. So just by numbers alone, there really aren’t enough academic centers to take care of all the patients in the country that have bladder cancer, nor are most patients able to travel, unless you have one right in your backyard, travel becomes a really big component of that. So from an ease of getting patients evaluated quickly, oftentimes, you turn to, who’s the closest physician, who does your primary care, for example, have a relationship with. You just presented with blood in your urine, the last thing they’re going to do is say, oh, let me figure out the closest academic medical center and get you over there.

Some patients have that benefit if they’re already part of that academic medical community, but most patients are treated in the community because that’s where their primary care physicians are based, and that’s where they’re able to get their care most quickly. I think the other reason though is complexity of patients. So when a patient is treated in an academic medical center, sometimes the care is siloed. Most people in academics have a specialty. Even within genital urinary oncology, there are some physicians who really focus on kidney or prostate. They may treat some bladder but it’s not their primary focus. When you add in patients that have multiple diagnoses, for example, thinking about what’s the biggest risk factor for bladder cancer, it’s tobacco. We all know tobacco carries with it a risk of multiple other cancers, head and neck, oral, esophageal, lung, kidney.

So when I think about some of my complicated patients, if they were being treated in an academic medical center, they would probably have at least three hematologists oncologists. They’d have someone for their bladder cancer, someone for their lung cancer, someone for their anemia, because of-

Rick Bangs:

Oh, my.

Dr. Elizabeth Guancial:

… chronic kidney disease or what have you. And so it really makes it complicated for patients. So in my mind, for folks who have a lot of comorbidities who aren’t going to be healthy enough for clinical trials or don’t have the bandwidth to be able to travel to an academic center, that’s part of why they stay in the community. You can have one person managing all of those chronic issues as opposed to a much larger team.

Rick Bangs:

So you’ve just talked about one advantage, what are some other advantages to getting care in a community setting?

Dr. Elizabeth Guancial:

I think, in some ways, we’re able to deliver care more quickly. Not always. But when you don’t have as many patients, for example, you’re sometimes able to get that PET scan quicker, or you’re able to get that blood transfusion same day, for example. I always felt that University of Rochester did a great job of getting patients scheduled and moving through the machine, so to speak, but I was really surprised when I changed practice environments, and I was able to do things even quicker than I could before. Part of that is even though I come from a large practice, it has a very small feel. We have a handful of financial folks, we’ve got our charge nurse. Everybody knows everybody. And so when you have a patient where you really need to get them through everything as quickly as possible, and I’m in charge of all of it, frequently we’re able to do that.

The difficult piece though is when we’re now trying to interact with other specialists. So in an academic center, for example, let’s say you have a patient with bladder cancer who’s going through curative-intent trimodality therapy, they need their TURBT with their urologist, they need their weekly chemo with their medical oncologist, and they need their daily radiation with their radiation oncologist. All of those people, typically, in an academic setting, are working through the same center. The insurance is accepted by all of them because they’re all part of the same center. They probably have tumor boards on a weekly basis, where they’re interacting with each other.

So that, I think, can be easier to coordinate in an academic center because all of those specialties are on the same team. In the community setting, on the other hand, I don’t have urologist part of my practice, so if I want to move forward with chemo radiation but they need a repeat debulking TURBT beforehand, sometimes that takes a lot of extra work to coordinate in a timely fashion. So depending on the complexity of the care that someone needs for that one specific problem, sometimes academic centers may have a leg up on a community practice where you’re trying to pull people together from, for example, three different independent practices.

Rick Bangs:

So if I’m in the community and I want to find a community clinician, what should I look for?

Dr. Elizabeth Guancial:

There’s so many factors. I think the first factor is you want to see someone who can get you in quickly. You don’t want to have to wait six weeks to be evaluated. When you’re initially going through that first evaluation, I think time is of the essence. And so even though you may go online and you google somebody and you say, oh my gosh, that person looks fantastic, and then you call and it’s going to be a month and a half before you can get in, they’re not the right place to start. They may be good for a second opinion once you get your biopsy and your scans and all that done, but you want to get in quickly with someone, ideally, within a week or two. It can help, certainly, to rely on your primary care physician. They know all the players in the community, they know who they work with.

Sometimes they can reach out directly to the medical oncologist and say, “Hey, I’ve got a patient. I think this is really urgent. Can you get them in quickly?” So having someone who is local can sometimes facilitate those relationships. However, once you meet that physician, no matter where they are, whether they’re in academics or in the community, I think the next critical piece is you have to feel comfortable with them. They don’t have to be your best friend. You don’t have to want to go out to dinner with them, but you want to feel like, okay, they’ve reviewed your chart, they know what’s going on, they’re able to communicate effectively with you. You feel that you trust what their recommendations are.

You get the sense that they have your best interest at heart and they’re doing everything they can to move your care forward. It’s completely acceptable and appropriate to talk to that first, let’s say it is a community oncologist, about getting a second opinion at an academic site. And I would be frank about that. There’s nothing you have to hide. It’s not shameful. You’re not going behind somebody’s back, but you want to make sure that the reaction from that oncologist isn’t one of, well, why are you doing that? Don’t you trust what I’m telling you? That’s not a good sign because then-

Rick Bangs:

No, never.

Dr. Elizabeth Guancial:

Okay, maybe this isn’t going to be the right person long term for me. But I do say that letting that oncologist know if you are interested in a second opinion, because you want to try to coordinate it so that when you get to that academic site, they have all the information they’re going to need. Showing up with blood in your urine, it’s going to be more useful if we know where that’s coming from.

Rick Bangs:

Exactly.

Dr. Elizabeth Guancial:

Or this is not a bladder example but it really struck me as good example here. So I recently saw a patient with ovarian cancer, and as I was walking her and her family up to the front desk, her daughter was shuffling papers and said, “Mom, we got to get going, we’ve got that radiation appointment today.” And I said, “Oh, I didn’t realize, are you seeing a radiation physician?” “Oh, yeah, no, we set up a second opinion.” And I said, “Radiation really does not have a role in this disease. Who recommended that you guys see a radiation doctor?” “Oh, well, we just saw it online, we thought it would be a good idea.”

I don’t know if it’s worth the money and effort for them to say, “Hey, there’s no role for this treatment in your disease.” But in any case, I think being transparent with that primary oncologist that you meet with, if you’re interested in a second opinion, by all means, do it. But you want to do it when it’s going to be most useful for you and the academic team. And that may mean go ahead and work on scheduling it but wait until you have all of that workup done so that at least they know what your stage is, for example, by the time you get there.

Rick Bangs:

Yeah. And they may want to reconsider the pathology or whatever based on what they know as opposed to… Right.

Dr. Elizabeth Guancial:

That’s a great point, Rick. Sometimes people think getting a second opinion is just hearing the opinion of what treatment is recommended, but behind the scenes, when you do get a second opinion, comes that critical pathology review. Oftentimes, I’ll tell my patients, I want you to be seen by so-and-so, but what I really want, I really want that second path opinion as well. And sometimes your team can have the option of requesting a second opinion on your pathology without the patient necessarily having to travel to X, Y, and Z sites. You could ask your path department to send it out and you could even specify where you’d like it to go.

Rick Bangs:

Yeah, because if you don’t know the correct diagnosis, you’re going to end up, potentially, going down the wrong treatment path.

Dr. Elizabeth Guancial:

1000%. I think especially with hemalignancies, for example, different types of lymphoma, that can be really critical. If it’s an unusual histology of a urothelial, what we think is a primary bladder cancer, again, that second opinion could change the diagnosis, which subsequently can change treatment. So really critical.

Rick Bangs:

Sure. So what do you personally like best about working in a community setting?

Dr. Elizabeth Guancial:

I love patient care. And so for me, that’s really what prompted me to start thinking more globally about what is my role in an academic center out of those three missions that I mentioned, what do I like the best? What do I think I’m the best at? And then is this maybe the right setting for that or could there be a setting that’s more appropriate? So my practice is, even though I do clinical research, I’m seeing patients every day. I really like that. I like it when we have patients who have multiple issues, like I mentioned before, maybe they have not just one but two cancers, and they have a hematology issue as well.

Not that I always enjoy the complexity but I really feel like I’m best serving that patient by trying to keep all these balls in the air, and as opposed to fragmented care where they’ve got a team of five different people trying to balance all of that. I like the patient centered aspect of it, for sure. And I love the variety. While genital urinary and gynecologic are the things that I focus on, those fields themselves have a very large breadth of diseases.

Rick Bangs:

Oh, yeah.

Dr. Elizabeth Guancial:

So I like that aspect of it as well.

Rick Bangs:

And what did you like best about working in an academic center?

Dr. Elizabeth Guancial:

My colleagues were so smart. My colleagues here are incredibly smart also, but I think the research aspect of it made them extremely inquisitive. And this is a big difference in community practice, our focus is getting the care that patients need as quickly as possible. And I’ll admit, there’s not a lot of… not that there’s downtime in academics, but in academic practices, I think there’s more built-in reading and thinking time.

We don’t have that as much. It’s more, you carve it out at night and on the weekends. Thankfully, in my community, we do have tumor boards, a lot, a lot of tumor boards, but that’s really difficult because how many hours per week can you spend in tumor boards? Right now, I could probably spend six to seven hours a week in tumor boards. No one has time for that. If I have a patient, I’ll present but otherwise, I’m there for the genital urinary and the gynecologic tumor boards. But in academics, I felt we had more multidisciplinary meetings. There were more face-to-face meetings, for example, between the basic scientists and the translational scientists and the clinicians trying to brainstorm and come up with projects that were meaningful that would make a significant impact on patient care. I don’t have that aspect where I am because we’re all community oncologists. So there’s pluses and minuses to every environment. And I think, for me, I made the right decision five years ago. I’m still very happy where I am.

Rick Bangs:

So I’m going to go back just for a second. You mentioned tumor boards, so can you give the listeners, because not everybody may be familiar with the concept for tumor board.

Dr. Elizabeth Guancial:

Yes. That’s a great question. So one time, I told a patient, “We’re going to have your case reviewed at tumor board. I’ll be there, your radiation oncologist, your urologist.” And they said, “Great. When do I show up?” And I said, “Great point. So interestingly enough, the patient is not invited.” I said, “And it’s not that we don’t want you there, it’s just from a efficiency standpoint. The patient doesn’t need to present your story. That’s what I’m doing. I’m going to be your advocate there.” So a tumor board is a meeting where you have, generally, in genital urinary, let’s say, for bladder, you want to have five specialties present.

So like we said, it all starts with your pathology. And so my pathologists are there to show pictures of the slides and explain why do they think it is this… whatever diagnosis it is. Sometimes at tumor board, we will have a molecular pathologist. So if we’re thinking about the different DNA abnormalities that can promote tumors or sometimes guide management, we do have a molecular tumor board where they’re present. You want to have a radiologist, someone who can look over the imaging. And then you have the clinical team. So generally, the medical oncologist, urologist and radiation oncologist. And the tumor boards that I participate in are sponsored by our community county hospital, Sarasota Memorial Hospital.

And anyone can put cases on, anyone from the clinical team. Usually, the pathologist or the radiologist doesn’t. They’re usually the supporting staff. And then in addition, we have our pharmacist, for example, they may be present, patient advocates, genetic counselors. It’s a powerful meeting. And generally, the cases that I present are ones where I have a question, I want to definitely be sure of our pathology. There’s a radiology finding I’m not sure about. I want to make sure we’re approaching this case in a multidisciplinary matter, and we’re all agreeing on what we think the recommended treatment is. So it’s really powerful. The presentations themselves are usually brief, less than five minutes. So I always try to put in some work the night before to make sure I know what’s my question.

I want to make sure all of our imaging and our pathologists know what we’re looking at. Once a week, we run through, these are all the cases that we need to discuss. I should also say we usually have someone from our clinical trials department on as well. So Florida Cancer, unlike some community practices, we have a pretty robust clinical trials program. And the trials that we open currently are vetted by Sarah Cannon, which is an academic institution in Tennessee. So for example, if a pharmaceutical company is interested in having a trial open with us, they go through Sarah Cannon, their IRB reviews everything and they get it ironed out. And then it can be rolled out to some of the different satellite practices affiliated with them, which would include Florida Cancer Specialists. So we may have a clinical trials coordinator with that list of, all right, these are all the studies we have available, and as we’re presenting cases, we’re thinking aloud about, do I think this patient may be a good candidate? If yes, how should we proceed to see if they’re eligible?

Rick Bangs:

Excellent, excellent. So what are some situations where you would recommend somebody getting care in the community, seek out an academic center?

Dr. Elizabeth Guancial:

One example that comes to mind frequently in bladder cancer is what type of surgery is being considered? So for example, let’s say we have a pretty healthy younger patient who strongly desires to avoid a cystectomy, for example, and we’re maybe thinking about curative-intent chemoradiation, and there’s some disagreement about whether they would be a good candidate for that or not. If you’re deciding between radiation versus cystectomy, I think having an academic center always serve as the tiebreaker, in my mind, absolutely makes sense, because many academic centers are set up so that a patient with newly diagnosed muscle invasive bladder cancer can see all three specialties in the same visit. That’s how we did it at University of Rochester. So that’s really powerful for a patient and family to walk out of that visit having met with all three with some sense of consensus. So that’s a good example.

Another example is you have a patient who’s willing to have a cystectomy but really wants a neobladder. That’s a highly technical procedure, and not all community urologists may be comfortable doing it. So I think having patients evaluated for more specific surgical procedures like that. Another example, this from testicular cancer, but patients who require retroperitoneal lymph node dissections. Those are big surgeries. So having a patient get a second opinion for a surgical procedure, I think, makes sense. Another setting, different end of the spectrum, for example, patients who have advanced bladder cancer, where we’re considering clinical trial participation, especially for patients who are healthy, regardless of age, but if they’re healthy with limited comorbidities and they’re nearing the end of the standard of care options, absolutely, having them evaluated at an academic center.

In those cases, actually, I typically encourage that earlier, rather than waiting till someone’s on third line or fourth line therapy. Let’s think about that during the first line of treatment, for example, so that they have a relationship with that academic center, and in the future, should they progress or not be able to tolerate the therapy, there’s not a big lag time. Like I mentioned at the beginning, if it’s going to take six weeks to get into an academic center, for example, you don’t want to wait that long to start treatment, but it may be appropriate to do that consult early on so that if there is progression in the future, you already have a relationship and can reach out. Those are two examples where I think it does make sense.

Rick Bangs:

And I don’t think it ever hurts to get validation that the treatment you’re going to get-

Dr. Elizabeth Guancial:

Absolutely.

Rick Bangs:

… in the community is the right path.

Dr. Elizabeth Guancial:

For sure, for sure. In Florida, it’s a little unique, where I am, we have a large population of older patients, many of whom are snowbirds. And not infrequently I’ll hear something from the patient that goes along the lines of, I feel good about what we’re doing and I think I’m on the right path, but my kids back in Chicago keep saying, “You need to see an academic oncologist.” My kids in California say, “Why are you getting treated in this community practice? You need to be seen by somebody who’s at an academic center.” I have zero problem with that. And so I think it’s important for community practices to be able to identify who’s your go-to academic person. So for us in Sarasota, Moffitt, they have a wonderful genitourinary medical oncology and urology department. For me, that’s my go-to when I want to send someone either just for a second opinion, clinical trial enrollment, to be seen by a special, a urologic oncologist, that’s my go-to.

Rick Bangs:

And that makes perfect sense, perfect sense. So you mentioned this already but I want to probe a little bit deeper. So if I decide I want a neobladder and I’m in the community, how would I find somebody who’s got lots of experience?

Dr. Elizabeth Guancial:

So for most patients, once they have that diagnosis of bladder cancer, they have a urologist. And so I think just like how it’s appropriate to have a frank conversation with your medical oncologist, hey, I think I need a second opinion, asking your urologist, “I’m interested in doing a neobladder. I know these are pretty specialized. Is there someone in your group?” Oftentimes, urology practices, they could be on the large side. And they have some urologists who focus on general urologic issues, and then they have a smaller number who focus more on the urologic oncology surgeries. So you may have a general urologist make your diagnosis, do your cystoscopy and TURBT and say, “Yes, this is bladder cancer,” but then they may pass the baton, so to speak, and have you see one of their colleagues who does more of the cystectomies. I think when you do meet that person, saying, “I’m interested in exploring my options, how many neobladders have you had?

What’s your success rate? If this isn’t something you feel particularly comfortable with, is there an academic urologist within a two-hour drive that you can recommend and maybe place a referral?” I think that’s really fair. And like we said before, if your primary person, whether it’s your primary med onc or your primary urologist really seems to squirm about it, then maybe they’re not the right person for you. The other benefit of the neobladder conversation is that most patients who are motivated to seek out a neobladder are also motivated to do neoadjuvant therapy. And doing neoadjuvant chemo, not only is it appropriate in standard of care therapy, but it also buys you time to make these second opinions. So you have time to get to the academic center, get established, go through the pre-op workup. Those are decisions that should never be rushed. And so I do think, as long as you’re getting appropriate neoadjuvant chemotherapy, or participating in a trial, for example, you’ve got a couple of months to get those things worked out. So there’s time.

Rick Bangs:

Yes, because you’re working it in parallel, right?

Dr. Elizabeth Guancial:

Exactly. Yes. You don’t want to say, okay, three months of chemo and now. That’s not good. Don’t do that.

Rick Bangs:

Let me start looking now, no.

Dr. Elizabeth Guancial:

Yeah, no, we don’t like that. I like to get my patients back around cycle three, for example, you’re doing great on chemo, let’s start planning the second phase.

Rick Bangs:

All right, so how do I find a great surgeon or a great med onc or a great radiation oncologist? How do I find these great people in the community setting?

Dr. Elizabeth Guancial:

So I think starting with your primary care physician and saying, “Whom have you had a good relationship with?” That’s a good place to start. Second good place to start would be BCAN. I know, at one point, there was talk about coming up with a listing of physicians, community physicians included, who had a particular interest in bladder cancer. I think being treated by a physician who’s particularly interested in your diagnosis engenders itself to a physician who’s enthusiastic and keeping up with standard of care and what’s going to be the next wave, calling when you… most oncologists do not have solo practices anymore. Most cities have at least a couple of oncology practices, but when you call to make that initial appointment, it’s fair to say, “I have bladder cancer, do you have physicians that specifically focus on this cancer, or are they truly a generalist that sees everything?”

If the practice says, “Yes, actually, we’ve got Dr. Guancial and she focuses on bladder cancer,” that’s probably a good starting point. If they say, “No, our model is a general model, we don’t subspecialize in anything,” then I think it kicks over to that other priority of being seen quickly. It’s okay to take that appointment. The first oncologist you meet with does not necessarily have to be the one that sees you through the whole course of your treatment. But then when you meet with that oncologist, say, “I’d really like to have a second opinion with someone who focuses on this,” and that may be best with a academic oncologist. Many of my patients who do seek a second opinion at Moffitt, for example, they don’t get their treatment there. They may go, they agree with what we’re talking about, or maybe they make a suggestion and we change it.

But then most patients would actively choose to be treated in the community because of convenience. You have to get on a highway and drive an hour and a half and pay all these tolls and then struggle to find parking. I mean, there’s a lot that goes along with this, or someone who’s actively going through treatment where I don’t want them driving the day of treatment. Let’s say they had an infusion reaction, it’s going to be hard maybe in some cases to find a neighbor or a family member to drive you an hour each way. So it’s okay to have that academic person looking over everything, but then a patient can still feel comfortable doing their treatment in the community, for example. It doesn’t have to be a one or the other. They can collaboratively work together.

Rick Bangs:

Oh, I think this is such great advice. So you mentioned clinical trials and you talked specifically about your institution of CS, how available are clinical trials generally in the community setting? And where they’re not available, how would I go about getting a referral?

Dr. Elizabeth Guancial:

I don’t know percentage-wise how many community practices offer, let’s say, phase three clinical trials. But I would say a good rule of thumb is the larger the practice, the more likely they are to have it. So one example would be US Oncology, very large practice located throughout the United States. They’re big. They have clinical trials. In order to offer clinical trials, you need a bandwidth. You need a certain number of patients who are actually going to participate because trials are really costly to open. You’re not going to open a trial if you might enroll one patient per year, and it’s just a general metastatic bladder cancer population, for example. So I think larger practices are more likely to have them. Another thing to look out for, and this is drawing on an example from my time at University of Rochester, there was the academic practice at Wilmot Cancer Institute, but then the University of Rochester was affiliated with a number of satellite, a number of community satellite practices.

And that’s a nice hybrid environment, because for a patient, the office may be 20 minutes away in your smaller town, but yet those community oncologists partner with academic physicians. And so sometimes that’s a nice way where you get the benefit of both, but with that hometown, not necessarily having to travel. Sometimes those satellite practices may offer the trials that the academic… the mothership, so to speak, may have. And I think, also, it’s certainly a fair question when you’re calling a center to set up that initial appointment, do you have clinical trials? If you’ve got four community practices in town, they’re all part of a different organization, it’s fair to call all four and find out which one has trials, and then if you want to decide to go there first, that may be a good way to go about it.

Rick Bangs:

And the clinical trial question is valid no matter what the diagnosis is, because-

Dr. Elizabeth Guancial:

Correct.

Rick Bangs:

… we know these clinical trials across the landscape.

Dr. Elizabeth Guancial:

They do, they do. I will say, I think there’s more… with patients who have advanced disease, that’s sometimes where the urgency of a clinical trial is even greater because we may have limited options. But for patients who maybe have a new diagnosis and they’re going through neoadjuvant therapy for stage 2 bladder, if you have the opportunity to participate in a trial, that’s icing on the cake to me. That’s even better. But especially for the advanced patients where we may not have infinite systemic options, that’s where the trial component becomes even more critical, I think.

Rick Bangs:

So that would be stage 2, T2 and higher, although we’re seeing a lot more activity in the stage 1, the T1.

Dr. Elizabeth Guancial:

We are. Yep. And I think with the ongoing BCG shortage, that space is also really important. You may have stage 1 disease but you have BCG refractory disease. Well, then a clinical trial really would be the best next step for you. And again, fair to ask the urology practice where you’re being treated, do you have any trials for BCG refractory disease? If not, where do you think is the closest center that may? One other point, Rick, I just want to go back to when we were talking about second opinions at academic sites. This is kind of stating the obvious, but sometimes patients are thrown off by this, the more second opinions you request, the more complicated life gets, for example.

And I don’t think the average patient does this, but I’ve definitely had overachievers who make life so much more difficult for themselves. So if you’re going to seek… you’ve got your community team and then you go to an academic center, and then you say, well, that was helpful. So if some is good, more is better. I’m going to get three more academic opinions. And now you are sending yourself down a rabbit hole, because I mean, you know this, Rick, you know all the players, people have different opinions. And sometimes the questions we’re asking, there’s not a right or wrong. So you may find yourself in a setting of five different opinions with five different suggestions, and now you’re lost at sea. You have no idea what you want to do. And often, in those cases, interestingly enough, it comes back to that original community oncologist who says, “We need to have a sit down. You’ve got five options, which one makes the most sense for you? Which one’s the most practical? Which one do you think you can actually follow through on?”

And so I get this sometimes for patients who have a new diagnosis of curable prostate cancer, well, they’ve talked about prostate removal with a urologist, then they went and did a radiation appointment, then they did a proton appointment, then they did a brachytherapy appointment, and at the end of the day, I mean, they’ve taken 20 steps back because they can’t even make a decision. So the bottom line is always appropriate to get a second opinion, but I would be very, very careful before getting a third and a fourth and a fifth opinion. What are you actually asking? If you’re going that far, probably, the second opinion didn’t resonate with you, you didn’t like the person, okay, well, then maybe a third makes sense. But being careful, don’t overdo it.

Rick Bangs:

Building a portfolio is going to take a lot of time, which time also plays against you.

Dr. Elizabeth Guancial:

Time’s important. 1000%.

Rick Bangs:

So when should I look beyond the community setting?

Dr. Elizabeth Guancial:

I think if there is a specialized procedure that you need, special surgery, like we talked about with neobladder, someone maybe, for example, has had radiation in the past. Maybe they had radiation 25 years ago for prostate cancer. Now they have a new diagnosis of bladder. They’re told they’re not a surgical candidate. That’s complicated. Getting an academic opinion in that situation may be helpful. A patient, for example, who, like we’ve said, is nearing the end of standard of care options, maybe they’re at a community-based practice that doesn’t have clinical trials available, absolutely then, seeking out an academic opinion, that would make sense.

Rick Bangs:

Any final thoughts?

Dr. Elizabeth Guancial:

I love these questions. I mean, these are really practical questions, and I think are important.

Rick Bangs:

And they’re real, aren’t they?

Dr. Elizabeth Guancial:

They’re real. And it helps to demystify what is the difference between an academic center and a community center. And often, the underlying question is, well, which one’s better? There’s no right answer there. It depends on your situation. You could have the best physician in the community, which it just may not be a good fit personality-wise. And you can have a wonderful physician and academic center, but if you don’t feel like you connect with them, that’s not a good fit either. So there is no one size fits all. Patients need to be honest with themselves. Do I feel comfortable with the team? If not, why? And then be very deliberate in terms of seeking out either a second opinion or jumping, I’m not going to continue with that first person, I’m going to switch to someone else.

Rick Bangs:

This has been so helpful, I think. Dr. Guancial, I want to thank you for giving us an insider’s view of caring for bladder cancer in the community setting, where most of bladder cancer patients are getting their care. If you’d like more information on bladder cancer, please visit the BCAN website, www.B-C-A-N.org. In case people would like to get in touch with you, could you share an email address or a Twitter handle so that people can reach out?

Dr. Elizabeth Guancial:

Absolutely. Yes. So we have a specific department which helps to field emails and then will forward them to me. So the best way to reach me would be using the following email address, it’s capital FCScommunications@FLCancer.com. So that’s fCScommunications@FLCancer.com.

Rick Bangs:

And that’s communications plural?

Dr. Elizabeth Guancial:

Yes, yep, communications.

Rick Bangs:

Okay, great. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1888-901-2226. That’s all the time we have today. Be sure to like, 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. Guancial.

Dr. Elizabeth Guancial:

My pleasure. Thank you for the invitation.

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, advance 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.