Treating Women with Bladder Cancer and a Community Approach to Navigating a Diagnosis - Jeannie Hoffman-Censits & Elizabeth Guancial

April 12, 2022

Alicia Morgans is joined by Jeannie Hoffman-Censits and Elizabeth Guancial to discuss the challenges women face navigating a bladder cancer diagnosis. In 2022, the American Cancer Society estimates more than 81,000 will be diagnosed with bladder cancer in the United States. Of those, 61,700 will be men, and 19,480 will be women. Drs. Morgans, Hoffman-Censits, and Guancial discuss the importance of multidisciplinary groups for treating women with bladder cancer along with the value of patient communities and resources like the Bladder Cancer Advocacy Network (BCAN) that provide a safe place for women with bladder cancer to seek information that may not be discussed in the clinic.


Jean Hoffman-Censits, MD, Assistant Professor of Oncology, Co-leader, Women’s Bladder Cancer Program, Greenberg Bladder Cancer Institute, Johns Hopkins University, Baltimore, MD

Elizabeth Guancial, MD, Medical Oncologist, Florida Cancer Specialists and Research Institute, Sarasota, FL

Alicia Morgans, MD, MPH, Genitourinary Medical Oncologist, Medical Director of Survivorship Program at Dana-Farber Cancer Institute, Boston, Massachusetts

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Alicia Morgans: Hi, my name is Alicia Morgans, and I'm a GU medical oncologist at Dana-Farber Cancer Institute. I'm so excited to be here today with two good friends and colleagues, Dr. Elizabeth Guancial, who is a medical oncologist, with a focus in genitourinary cancers, as well as GYN cancers at Florida Cancer Specialists and Research Institute in Sarasota, Florida, and also Dr. Jeannie Hoffman-Censits, who is a medical oncologist at Johns Hopkins and the co-director of the Women's Bladder Cancer Program at the Sidney Kimmel Cancer Center. Thank you so much both of you for being here with me today.

Jean Hoffman-Censits: Thanks, Alicia.

Alicia Morgans: Wonderful. So I wanted to talk with you both about what it's like to be a woman, physician, and researcher in genital urinary cancer care, with a particular focus, of course, on urothelial carcinoma. And why don't we start with you, Dr. Guancial. You've done a lot of research over your career, and now are working also in a clinic where you care for women, men, everybody who has urothelial carcinoma and other cancers as well, GYN, and of course general oncology as well. So can you tell us what it's like from your perspective?

Elizabeth Guancial: I think when I inherit a patient with, especially a woman, with bladder cancer, there is a big sigh of relief, quite honestly, because many of the physicians, they've had... So far, urology tends to be more male predominant physicians. So often they just relax a little bit and I think they feel... Hopefully, they're with someone who will be appropriately aggressive with their care, but also understanding the whole situation, including the barriers that may have taken them to get to that diagnosis. Frequently it's not a straightforward, clear cut type of thing. As far as community though, there do tend to be more male oncologists, which in fellowship, I don't think was the case. It seemed to be more 50/50. And I don't know the specific numbers, if more women tend to stay in academic practices or not, but there's a lot of male physicians in the area where I am.

I don't feel though that really interferes professionally at all. I've been fortunate. My colleagues are fantastic and they're really supportive, and that's both in medical oncology and surgical subspecialties as well. So I don't think there's a difference professionally, but our patients do notice the difference, I would say.

Alicia Morgans: Yeah, and I think that's so important because there may be just a different connection or bond that we can form with our patients that helps them in their process too. And Jeanie, I know you've been, of course as a woman oncologist, have been focused in urothelial carcinoma, but you've also been focused very specifically on trying to elevate understanding and the care of women with urothelial carcinoma. Can you speak to that a little bit?

Jean Hoffman-Censits: Sure. I mean, I think I echo Elizabeth's comments in terms of kind of from a professional life standpoint. This is just, I think a discipline that I was really interested in and excited in. When the three of us all started in GU oncology, there was very little in terms of new therapies like there are today. All these new therapies have been really FDA approved since about 2016. So it's really an exciting, really dynamic time to be in the field. But when we all started, that really wasn't the case. And that's what drew me to the field, and it just happened to be that, looking around, I was mostly, interacting with urologists, 90% of whom are male across the country, and kind of the same in terms of medical oncology, not too many female medical oncologists. But the desire and the drive was really just kind of led to where I am today in this career. But I think it's the same. I think it's that same kind of sigh of relief of a female patient seeing...

We actually have a female team at one of our Hopkins sites. I see patients with Dr. Armine Smith, who's a female genitourinary urologist. And that is a real unique team. And so I think because of that, over half of our practice is female at that site. And I think patients really do find out about us and seek us out because of that. But I think like our patients. I think a lot of us are sitting around conference tables or at talks and things like that, where we're a minority. And I think our patients feel the same way, and I think there's something that comes of that.

Alicia Morgans: I would agree. And I think in addition, of course, to that connection that we can have with our patients, I think that women bring a unique voice and perspective to the research community, which is, I think, really, really important. Some of that is the approach that we take, and another piece of that may be the questions that we ask. And I think just sticking with you for a moment, Jeanie, I mean, you've asked specific questions, you've tried to investigate women with urothelial carcinoma, as a specific population, to look for differences. Can you share a little bit of the work that you've done and maybe some of the insights that you've you've found?

Jean Hoffman-Censits: Yeah. I mean, I think from a personality perspective, I tend to be somebody who doesn't kind of go with a crowd. And so if everyone is interested in one perspective, I tend to say, "Yeah, but what about the outliers? What about the people who didn't respond? What about those folks?" And that's never as exciting in terms of when you're really thinking about what normally is "exciting," but still just as interesting and as important. And I think some of that really stem from having women not be the major population of patients that have urothelial cancer, but still incredibly important. We know that women tend to present later. We know that they tend to have worse prognosis. We know that they tend to have a certain kind of bladder cancer. But even though we know a lot of those things, we haven't really kind of changed our focus or changed how we treat patients.

I think awareness is incredibly important though, and think just reinforcing and bringing that awareness out is something we can continue to do that will help and move research along. We've done some things at the basic level, as well as kind of the retrospective chart review level. We're working on some studies with industry partners and things like that, but to date, nothing that I think is really changing standard of care, but definitely continuing to improve, I think, awareness about the differences between men and women with this disease.

Alicia Morgans: And I think that's fair. And I think that, of course, it's a work in progress, and I look forward to hearing some of the progress that you've made over time because you're continuing to make advances across the field, not just, of course, with women. But Elizabeth, I wanted to shift to you for just a second because I know that you, in addition, of course, to being a medical oncologist, also participate in community interaction to raise awareness in your area in Florida, and of course, beyond. And you were sharing earlier some of the work that you're doing with community engagement and some of the ways that you raise awareness among women that they need to be aware of urothelial carcinoma because it can be something that's overlooked, I think. And can you just share that anecdote and how you make those attempts?

Elizabeth Guancial: Sure. Yeah. So I had the honor of participating in a fundraising event last week for our local system, Sarasota Memorial Hospital, and the funds that were raised were going to be used for the genetics clinic. So it's exciting that were able to offer germline testing locally, because I think a lot of oncologists, we feel a little intimidated by sending off these assays. What am I going to find, variants? How do I test family? It's a lot. So the event was focused on gynecologic cancers like ovarian cancer and uterine and potential hereditary approaches to testing. And there was a question in the audience about bladder cancer. So I jumped on it and said, "Yes, there's a small minority of women who have Lynch syndrome and that may run in the family, but the biggest risk factor for bladder and kidney is actually tobacco." And people were quite surprised to hear that.

So it was a good platform to put that information out. These were all pretty well educated people who I know are going to go home and spread that to their family and their neighbors. And then the other point we talked about was microscopic hematuria, gross hematuria. Certainly, there's a long differential. It does not mean you have bladder cancer. But if it's not improving, being an advocate and asking to be seen by a urologist is important, just so that... We all know the earlier someone is diagnosed, typically the better the course goes, but also saying there's not really screening for it. This isn't a mammogram or a pap smear. So a lot of things that for those of us who are in the field, we kind of take for granted, but there's a lack of education despite bladder cancer being as common as it is.

And to that point, all of my new consults, they get a teacher booklet from BCAN as their parting favor. I say, "Read it or you'll get quizzed next visit." But pointing people towards the BCAN website. We all know [inaudible], we know what an amazing organization it is, but patients otherwise may not have heard of it. And the last thing I want my patients doing is Googling bladder cancer. So if you can send them home with a good website, it provides the information that we may not have time to talk about in [inaudible].

Alicia Morgans: I think that's a great segue. Jeanie, I'd love to hear about how you are trying to connect women with bladder cancer, because BCAN certainly does that and tries to bring the whole community together, but of course includes women. And because of course, bladder cancer is less common among women, and because waiting rooms in neurology clinic are often filled with more men than women, it's hard to find your people, I think sometimes, and it's hard to find that support, but I know you have worked to try to set up a virtual support network. Jeanie, can you share a little bit about that?

Jean Hoffman-Censits: Sure, sure. Before I talk about our in-house support network, absolutely echo Elizabeth's comments about the Bladder Cancer Advocacy Network. I tend to go virtual with them, Elizabeth, but the same. Every patient gets information about the BCAN website. And I talk about, there's a lot of scary places on the internet. This is a safe place that you can go where people like us and others across the country, we help contribute to the content on that website, Alicia, your great talk on immunotherapy, because people are always going to have questions, and their family's going to have questions, so I think that's a great place. And I think a lot of women do tend to be the information seekers and go to the internet. So that's a great place for them to go.

But when I started... I see patients at our main site in Baltimore, and then also down in Washington DC at Sibley Hospital, which is a Hopkins site as well. And there with Armine Smith, I think they have a really robust patient and family supportive services department there, and just kind of getting to know everybody as a new person and a new place, introducing myself, telling people what I do, and then explaining to them, why a women's bladder cancer program? Why is this important? Why is this interesting? It was so compelling to the social workers and to the other supportive folks who kind of help us make these platforms. And so something that was an every six month platform, which pre-COVID started in person, became this very popular event on Zoom, women only talking about what it's like to be a woman, have bladder cancer, kind of a free discussion.

So there's a monthly discussion with social work. That's kind of absent clinical input. There's no clinicians on that one. I think just people have freedom to have discussions. And then tied in with that are quarterly education sessions where we bring in other kind of supportive care folks. We just had one with... We have a rehabilitation specialists who trained at MD Anderson, so really very interested and understands some of the special problems our patients have. We talk about integrative medicine, we talk about survivorship, Alicia, like some of the work that you do, and really just hear from the patients their feedback about what they're interested in, what they want to hear about next, and then we do our best to design it. So that's been a really successful program. And I think one of the benefits of everyone getting used to virtual platforms is we can see how these things can continue, I think, in perpetuity and include more patients from all over the country.

Elizabeth Guancial: That's great.

Alicia Morgans: Absolutely. And we'll have to make sure that we advertise that link or the opportunity for patients to get involved, because like you said, they're all over the country, perhaps even in other parts of the world, where they may want to just hear from other women about what the experience is like and how they can work through certain challenges. So as we wrap up, I'd love to hear from both of you kind of parting thoughts for the audience. As a woman in oncology and as someone who really pays special care to these women with bladder cancer, what would your message be, Dr. Guancial?

Elizabeth Guancial: One of the big things I was able to do here in Sarasota, since arriving about three and a half years ago, was starting a multidisciplinary tumor board. And it's a little challenging outside of the academic environment because we're not a multi-specialty group, we don't have urologists, we don't have our own radiation oncologist. But I think for those of us who treat bladder cancer, I can't think of a more multidisciplinary tumor, to be honest with you. Our patients get better care when we're working together. So we were able to do it using... Initially, it was in person, and then COVID. Now it's online. We have better attendance since people don't physically have to be in the same place. And it's been a great forum to get out new drug approvals, talk about clinical trials that we're opening, really kind of hash out who's a good chemo radiation versus neoadjuvant surgery.

So I would say for people in the community, that's one of the downsides. It's more difficult to do those types of multidisciplinary forums, but it's definitely worth it. And our patients are so happy when you say, "I presented your case, your follow up, and everyone was so glad to hear you're doing well." It really helps to bring some of the benefit of the academic center locally to people who otherwise may not be able to take advantage of it. So multidisciplinary care is huge for bladder cancer, and we need to keep pushing that.

Alicia Morgans: Great. Wonderful message. Thank you. And Dr. Hoffman-Censits?

Jean Hoffman-Censits: Yeah. I think some of the themes that we talked about earlier, especially when you consider women being diagnosed with bladder cancer, and then just imagine them sitting in a urology practice that's going to be majority men, in the waiting room, as well as the practitioners. We recognize both for that population of patients and some of the other populations that we see with more rare subtypes of urothelial cancer like upper tract disease, it's incredibly isolating. So try and search on the internet to find your disease and you can't find it. So that's one of the things that we have tried to do is just provide information on our internal website, provide patients information with great websites like BCAN, I think does a good job as well, and just to kind of remind patients that they're not alone.

And I think that's another kind of relief that I see, where when patients come in for their new patient appointment, for me to say, "I know what you have. We have other patients like you in the practice. We know what to do. And now you know who to call and what to do when you need help." I mean, there's just that kind of feeling of relief when someone may have had a very circuitous route to a new diagnosis, as many women with bladder cancer to have had. So even though it might not be good news at the end of that line, at least understanding what they have and that maybe they're finally with a team that knows other people like them, I think is somewhat comforting. And so we try and continue to do what we can, in a HIPAA compliant way, to bring those patients together.

Elizabeth Guancial: Good point.

Alicia Morgans: Absolutely. Absolutely. So certainly working together both as multidisciplinary groups of clinicians and as communities of patients. And the entire bladder cancer community, I think, is the way to go forward. And there certainly is a lot of hope in this disease, not a small part of it based on the work that the two of you continue to do. So thank you so much for your efforts on every level, and thank you for your time today.

Elizabeth Guancial: Thank you too.

Jean Hoffman-Censits: Thank you.