Sam Chang: Hi, my name is Sam Chang. I'm a urologic surgeon at Vanderbilt University Medical Center, and we are quite privileged to have Dr. Raveen Syan, who leads the Urogynecology and Female Urology Division at the University of Miami at the Desai Institute.

And there were presentations at the AUA, and she's done other presentations looking at, examining, and highlighting areas that urologic oncologists have honestly underappreciated, and have really not understood probably as well as we should have, and that's the impact of female pelvic disorders and issues and concerns, prior to and during therapy. And hopefully we can actually take the next steps to intervene and make a difference, and perhaps mitigate some of the side effects and consequences that we cause with the different types of therapies for women with bladder cancer. So Dr. Syan, thanks so much, and look forward to your presentation.

Raveen Syan: Thank you. So I'd like to begin by just creating some context. So the American Cancer Society acknowledges that there are quite a number of women who experience bladder cancer, a quarter of bladder cancers each year are female-based. As we know, radical cystectomy is a mainstay, and we talk about vaginal-sparing or not.

And then there's the large majority, the large bulk of those that are non-muscle invasive, and about half of those people do receive specific bladder treatments, intravesical therapies. Now, 20 to 40% of female bladder cancer survivors have these pelvic floor disorders, urinary issues, pain issues, bowel dysfunction. And it's known, we are not evaluating and studying this well in these women. And especially when it comes to the radical cystectomy, you can have issues with orgasms, dyspareunia. Even though you may be vaginal-sparing, you may still be unable to achieve vaginal intercourse without intervention.

And this is a quote from one of my patients. From intravesical therapy alone, it could be super significant. She said after she receives the therapy, "It's to the point where I cry. It's really, really painful. For a whole week, at least, I feel really tired."

And what's the real issue? The real issue is we're really having a gap in management of these women. So some of it is from the patient perspective. Patients don't know that there's options to treat, they're embarrassed, they have misconceptions. So for example, nearly a quarter of them believe that they cannot have sex after having intravesical therapy, because it can contaminate their partner. And then, of course, it comes to patient care-seeking attitudes. These are quotes from some of our focus groups of women asking these questions about, "How come you didn't talk about your issues before with your oncologist?" And they said they just feel bad. They feel uncomfortable speaking with a male, and they acknowledge that with a woman they feel less uncomfortable.

So urologic oncologists themselves acknowledge that they do not discuss sexual health outcomes commonly. So patients themselves say about half of them did not receive what they would consider adequate preoperative counseling on sexual health. And this was such an interesting survey that was conducted in the SUO group. And the providers who participated in the survey, over 50% of them reported that yes, they're not routinely counseling women about postoperative sexual issues. And they acknowledge they're less likely to counsel women versus males on the results on the sexual impacts following their procedures.

And again, pelvic floor disorders are very common. And what we have shown in a small study we did of patients who received intravesical therapy, of these 12 patients that we interviewed and assessed symptoms, five of them had no symptoms prior to the intravesical therapy, and seven did.

The seven who did had significant worsening of their symptoms. So if we can screen for these patients, we can better help manage their bladder symptoms while they're receiving the intravesical therapy and after. Now, this is another study we surveyed patients, and we asked them, "So those of you who have those significant pelvic core disorders, how would you have felt if you had received better pre-treatment counseling?" And those with more severe symptoms naturally wish they had received more counseling. Because it's true, we can really support women better when we know what the issues are.

Now what I find an important point to drive home, when we talk about prostatectomy for prostate cancer, patients receive a lot of counseling and options on the sexual impact. 87% of these programs that focus and specialize in this report having a penile rehab program. Certain institutes will actually send these patients to these programs preoperatively for assessment, and 86% of urologists have some sort of penile rehabilitation intervention for these patients. And these are studies that just show how many times we intervene and focus on sexual function in men following prostatectomy. There's over 609 studies that examine this.

Well, when we talk about it for women, there's no studies on the benefit of program care. There's only about 50 female sexual health programs in the country for patients, female patients undergoing cancer interventions. And the university is one of them. They have this great program that really inspired our focus on helping women specifically following bladder cancer.

So we know that there's an unmet need for taking care of these women. And as urologists, we should value sexual rehabilitation in women just as much as we do in men. So I think the simplest thing is to briefly screen. We want to assess for incontinence, pain, sexual function. It's ideal that we educate women on the impact of cancer care prior to receiving the cancer care.

So we should lean on these resources. BCAN, the Cancer Research of the UK, has these wonderful education materials that can help patients understand the impact, and then seek care therefore. And then just know us. Know your pelvic floor specialist, so you can refer to us. You're not going to have the ability to treat and manage these interventions on your own, and you shouldn't. That's why you should rely on your colleagues and turn to us to help.

So this is another important part, is implementing a pathway for treatment, just similar to penile rehabilitation programs. So this is our funded study, where we are examining the efficacy of creating a dedicated urogynecologic program for women with bladder cancer. And it can either be prior to treatment, during treatment, or post-treatment that we were enrolling these patients. We screen them in detail for the disorders, and then we treat them accordingly.

And what we found is it was super common. More than half of patients had overactive bladder symptoms. These, again, are women who are either prior to treatment, during treatment, or after treatment for bladder cancer. 50% have stress incontinence, and 74% have underlying sexual dysfunction. And the stress related to these issues was moderate to high. This is patient-reported stress.

So what we looked at is Urinary Distress Index. This is a measure of urinary bother. You can think of it as overactive bladder. So it's pretty significant. Over nearly 50% of people, as I've mentioned, have these symptoms, and it's significantly worse in patients with stress incontinence. When we look at urinary, pelvic, and defecatory bother, these questionnaires, again, about a quarter of patients had impact. Now, the biggest area of need was sexual dysfunction and bother. And what we saw is the majority, the great majority of women had sexual dysfunction and bother.

So after we did the enrollment, this is where we were. This is how we improved urinary bother. We greatly decreased patient's symptoms. We almost eliminated this type of bother when we look at the perspective of this questionnaire. And the impact of sexual function was enormous. We were able to bring patients from the majority of them having issues to the minority.

And this is some quotes we received from our patients after they were part of the pathway, six months later. Patient one said, "It was all positive. I have changed for the better." Patient two said she wished she had enrolled earlier on. Patient three commented, "I think every survivor can and should do it." So this study's ongoing, but it's very encouraging results. And the big secret is it's simply referring all female bladder cancer patients to a urogynecologist, and it's just giving patients the care that exists and, really, that they deserve.

So in summary, pelvic floor disorders are very common. They're undertreated, and they can significantly impact quality of life. Screening is essential, and just refer to us. Refer to your specialists to help support these women and improve their quality of life. Thank you.

Sam Chang: Dr. Syan, eye-opening results, obviously recognition of the problem, but then the interventions, the fact that, to me, the most impactful slide, all the slides are great, but the most impactful is when you see those arrows and the curve showing significant kind of improvement, in that three-month time period, of all three different types of domain. Obviously the sexual function is incredible, but then the issues regarding the stress associated with it, as well as overactive bladder ... I mean very, very impactful.

As urological oncologists, hopefully we'll better recognize this as an issue. The idea of referral, many places we don't have as big an effort or may not have the capacity. What are your recommendations, if practicing urologists don't have urogyn or female pelvic specialists, what are your thoughts? Recruit would be great, but then otherwise, next steps, are there any interventions that we can do if we don't have that resource?

Raveen Syan: I think the simplest intervention, if you don't have colleagues that you can turn to support, is pelvic floor physical therapists. These are the areas where patients receive the greatest improvement. It can be challenging. So the way that we help refer patients at the University of Miami is I have a dot phrase. I have a list of all the pelvic floor specialists who are certified. I tell women they're always women, because often women are deterred, unless they know it's a woman who will be doing pelvic floor interventions. And then I just give them a copy of their referral, and I really let them decide how meaningful it is for them to pursue it, and then the ball's in their court.

It does take knowing your pelvic floor physical therapists. Another cheat that I do is in that list, I give the website where patients can search for licensed pelvic floor physical therapists, so that they can identify people closer to them that I may not be familiar with. I think that's the simplest thing. And those therapists can take over a lot of the counseling on lifestyle managements of incontinence, irritative symptoms, and then absolutely the pelvic floor pain, and discomfort, and sexual issues.

Sam Chang: As you were presenting the comparison between men that are being evaluated, treated, and then helped along their course with penile rehab, those types of things, vis-a-vis women with bladder cancer, the disparity is enormous. And the idea of how basically everybody gets, from a male perspective, an AUA symptom score, an IPSS, those types of things prior to radiation therapy or surgery, those types of things, that under-appreciation of women, either with intravesical therapy and/or other interventions I think is huge. Give me some thoughts regarding that.

Raveen Syan: I think it's awareness. I think that it feels very straightforward to think about erectile dysfunction in men, because we're literally cutting into the nerves, and it has always felt like a very natural thing to worry about sexual function in men.

I think that we just need to remember that women can struggle with this too. I think what's the best thing about for women is it's quite easy to intervene. You can really easily help women, and you don't need a rehabilitation program. You just need to get the care and the treatment. So I think if we can just recognize that women are significantly impacted, and know that there are easy treatments out there, every woman should get that referral just to have that conversation.

Sam Chang: Dr. Syan, thank you so much for your contributions highlighting a key aspect that we have really should have done decades ago, centuries ago, in all honesty, but really look forward to the results as your trial continues to accrue more patients. We see interventions that we can hopefully take across the country, across the world in terms of evaluating, understanding, and appropriately treating. So thanks very much. Look forward, if you would allow urologic gynecologists to ask more questions in the future.

Raveen Syan: Of course.

Sam Chang: Look forward to spending some more time with you, and thanks again for everything.

Raveen Syan: Thank you.