Facing a Radical Cystectomy? Your Urinary Diversion Decision Made Easier

June 30, 2026

Transcript

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 am 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. Divya Ajay. Dr. Ajay is a reconstructive urologist and an assistant attending at Memorial Sloan Kettering Cancer Center. She has both a master’s in public health and an MD and she did her fellowship in urinary tract and pelvic reconstructions at MD Anderson Cancer Center. Her clinical interests include urinary tract reconstruction, urinary diversions, urethral stricture disease, urinary incontinence, neuro-urology, and pelvic floor prolapse.

She is a surgeon scientist, actively involved in diverse clinical research areas, including developing patient decision aids, greening the operating rooms, and the treatment of genital urinary syndrome of menopause, which is called GUSM for short in cancer survivors. Dr. Ajay, thanks for joining our podcast.

Dr. Divya Ajay:

Yeah, thank you, Rick. It’s my pleasure to be here.

Rick Bangs:

We’re thrilled to have you. So I want to start with your role as a reconstructive urologist, which is a little bit different from the urologic oncologist. So how does it differ from that more common role that the bladder cancer patient would understand?

Dr. Divya Ajay:

So when we start urology training, we have the option of doing sort of different subspecialties and there are about six different ones, including people who specialize in pediatrics or sexual medicine. The ones, as you correctly pointed out with bladder cancer you would be most familiar with is a urological oncologist who would diagnose and treat patients with any urological cancers, kidney, bladder testes, et cetera. My specialty training has been in functional and reconstructive urology.

So I work more in improving patients’ quality of life and optimizing their urinary tract, whether that’s dealing with scar tissue that blocks urine going from the kidney to the bladder, bladder dysfunction, dealing with either the prostate or the pelvic floor or other areas that would make it inconvenient or difficult for patients to void or urinary incontinence, which makes it hard for people to hold urine back in. There’s a wide variety of different types of reconstructive urology as well, but that’s my specific interest.

Rick Bangs:

Okay. And so besides bladder cancer patients, who might you treat?

Dr. Divya Ajay:

Again, reconstructive urology is really wide and we treat a whole variety of patients. So I would see anyone who has a variety of things. So my specific job, if you look at what I do in a cancer center, there’s sort of three main functions. I first work in optimizing patients before their cancer treatment. So for example, if somebody is going to be getting radiation to the bladder or the prostate, we look at their urinary function and try to optimize it either in many different ways.

We also are involved in bladder cancer patients, for example, who are trying to choose bladder sparing opportunities. We would assess these patients, look at their urinary symptoms, look at the compliance or the pressure of the bladder to see whether they would actually be good candidates for bladder sparing because oftentimes patients who are getting a lot of BCG or have had multiple TURBTs, they may not have the capacity or the compliance to tolerate bladder radiation.

Intraoperatively, in some institutions like where I did my fellowship at MD Anderson, the cystectomy and the lymph node dissection is done by the oncologist and then the reconstruction portion, which is a diversion, was done by a reconstructive urologist. And that’s where my deep appreciation and interest in urinary diversion started. So intraoperatively, also reconstructive urologists could be part of your care in some ways. And of course, the majority, a big chunk of our work in cancer survivors is postoperatively.

After receiving treatment for any type of cancer, you can have a bunch of challenges in dealing with your new urinary life essentially. And we are working to help people adapt and thrive with those different changes and challenges that they’re dealing with. So whether that’s dealing with strictures or scar tissue in the ureter or urethra, dealing with incontinence, dealing with radiation related changes, et cetera.

You had asked me besides bladder cancer patients in my current role, probably the biggest group I see is prostate cancer patients. We also see a lot of cervical cancer patients and GYN cancers, colorectal cancers, anybody who has pelvic cancers essentially, but a whole variety of other patients who have urinary issues. If you look at a general reconstructive urologist out in the community, they would be seeing a whole variety of young and older patients with different types of urinary issues.

Rick Bangs:

And those folks would probably see people who’ve been in car accidents or other accidents, right?

Dr. Divya Ajay:

Sure. Trauma. Yeah. So gender reaffirming surgery, confirming surgery, it all falls under this big umbrella of reconstructive surgery.

Rick Bangs:

Wow. Okay. All right. So now as a surgeon, there are certain considerations you’re going to leverage when you’re presenting urinary diversion choices to a patient. So talk a little bit about what those considerations would be.

Dr. Divya Ajay:

There’s so much going on in a patient’s life when they receive a diagnosis of bladder cancer and sometimes I don’t know that people they’re still taken aback by the diagnosis itself. I don’t know that people truly appreciate what an impact the urinary diversion is going to end up having in their life. I think the two big things that are important is what the patient brings to the table with respect to their health and their cancer.

So where exactly the cancer is in, how the other organs in the body are working, including kidneys, lungs, heart, the bowel itself. And the other big thing is lifestyle. What is it that’s important to the patient? If indeed they are eligible for multiple types of urinary diversions, what part of the urinary diversion they’re willing to tolerate because there’s no perfect diversion, but what is acceptable and what is not acceptable to the patient.

Rick Bangs:

Excellent. Excellent. Okay. So now the crux of this podcast is about this very nice and comprehensive tool that you’ve created. This helps patients choose a urinary diversion. It’s a tool that I wish had existed at the time I was making my choice, though I think I would’ve made the same choice anyway. So what made you decide to create such a tool?

Dr. Divya Ajay:

It was from patients themselves. When I was at MD Anderson, I did a qualitative study where I interviewed patients as a fellow about urinary diversions and different aspects of their divergence. And during that study, although this wasn’t the focus of that study, I kept hearing this ongoing theme. It was hard. It was scary. It came so fast and furious and I didn’t have time to even digest what was going on.

I was just so overwhelmed with the neoadjuvant chemo. I was so tired. I didn’t have the energy to go through all the different resources there were and comprehend and understand what I was signing up for. And people repeatedly felt like even that there was not one place they could go to, although BCAN is a phenomenal resource and we heard that multiple times over and over, but kind of just a side by side comparison where they really had time to digest what it is that their new urinary life was going to look like.

So that was the main motivation. So I took that from fellowship and now in partnership with some of my colleagues here at Memorial Sloan Kettering, I was able to create this tool, which I’m very excited about.

Rick Bangs:

As am I. As am I. So talk a little bit about how you went about developing the tool and what were the major steps in your process? Who was involved? How did this come together?

Dr. Divya Ajay:

Yeah. So thankfully there are actually guidelines for this. There’s an international patient decision aid guideline that we sort of followed the process of how to develop this tool, the IPDAS. So we use that as a background format and then we put together a multidisciplinary steering committee. My committee, my main mentor, Sigrid Carlsson, she is an expert in decision aids and patient decision making.

Alvin Goh, who’s our cystectomist and neurological oncologist. We have two people on the steering committee from the MSK Patient Reported Outcomes Community Engagement and Language Core Facility, Thomas Atkinson and Jamie Gilliland, who have been instrumental in the methodology and making sure we are staying on track with doing the right things to make sure everybody’s voice is heard and we are getting an appropriately diverse group of participants, et cetera.

We have our very excellent wound ostomy nurse, Vashti Livingston, and of course you know Sandy very well who’s the chair of the Indiana Pouch Support Group and part of BCAN. So she’s our patient advocate. So this group of people were instrumental in after I developed the first few iterations of the decision made to keep giving me feedback on it and keep developing it through each stage.

The next few stages, the first stage was what’s called alpha testing. This is where we really took it out to 22 patients all from all BCAN volunteers actually who have previously had a urinary diversion for caregivers, so spouses or partners of these patients and 23 physicians who are from North America, so the United States and Canada. And we put our decision aid out in three different phases and got feedback and took their feedback and then changed the decision aid with this during committee’s help and then took it back out again for another round.

So based on everybody’s feedback, we were able to create this decision aid. And the last part of our testing was what’s called beta testing. So this time, we use patients who have never had a urinary diversion themselves but were in the neoadjuvant chemo phase of their treatment. So they were going to be having a urinary diversion and we presented them the decision aid. We also presented it to a new set of bladder cancer doctors and got their feedback on it. So yeah, we followed the guidelines and we were able to create this aid, which has now been both alpha and beta tested.

Rick Bangs:

Excellent, excellent. Sounds like a great process. I really appreciate the steps you took as well as the multidisciplinary aspects of the team. That’s terrific. So how often do patients actually regret their choice of a urinary diversion?

Dr. Divya Ajay:

Yeah, so that’s a really tricky question. I think about this a lot. I feel like you develop regret when your reality and your expectations don’t meet and we can be quite sort of reactionary in medicine where you’re like, “Okay, let me do things to change your reality.” But I think this tool is actually taking a step back and proactively managing expectations. You mentioned that you didn’t have anything of this sort when you made your decision.

And I’m hoping for future generations we produce not just this, but a lot of tools like this where people go in where they don’t feel like, “Oh, my life is going to be exactly the same as it was before.” But they are able to really understand what they’re signing up for. And our goal is for patients to have realistic expectations. We will continue to offer tools to improve your reality, but I think to reduce regret, I think if we manage people’s expectations before we start, we’re going to make much more progress there.

Rick Bangs:

Yeah, I think the challenge for me and for most people is understanding what living with one of these choices means. And I think that’s one of the strengths of your tool is that it helps people understand that not the mechanics and the surgical aspects, but what’s it going to be like to live with this diversion? What are some highlights from the, you’ve got a section that’s called Things to Think About. What are some of the highlights from that section and that help influence a choice?

Dr. Divya Ajay:

I like the way we presented this and this was an advice of an expert in decision making about how we compare some of the highlights of, we have it in two sections. One is health related issues, the other is lifestyle related issues. And in health related issues, we want patients immediately to know that while often this is a choice, sometimes urinary diversion may not be a choice based on what you are bringing to the table.

So if we highlight patients own where the cancer is, if the cancer is in the urethra or the bladder neck area, that is something that will give you pause and you may not be a candidate for the diversion that you have with neobladder. If you have Crohn’s disease or ulcerative colitis, you will need to pause there and talk to your surgeon a little bit more about what options you have because you may not be a great candidate for a diversion that requires a large amount of bowel like a neobladder or a continent cutaneous reservoir, kidney issues, liver issues, heart and lung issues.

And if you need a lot of help like toileting, bathing, moving from one place to the other, those are all things where you may benefit from an ileal conduit over some of the more involved urinary divergence. So the first part of this things to think about was medical issues. The second one, which I really enjoyed because this is what patients have essentially created was the lifestyle, and we talk in detail here and this was a patient suggestion.

We had just the medical one first and the patients were like, “How is this useful?” They really wanted to hear the lifestyle differences and of course, each of these boxes were also filled in and we were directed by patients on how to describe all of these things, but how is each diversion different when you’re trying to be intimate or you want to have intercourse? How is it different when you travel?

Absolutely not something I would’ve thought to include, but just making sure how to prepare when you travel or go through TSA. Very importantly, sleep schedule and then catheterizing and wearing an ostomy bag. I was very grateful for the patient’s input to open our eyes to this aspect of urinary divergence and really explicitly lay it out in our aid.

Rick Bangs:

Yeah. Those are such important questions and the medical question and maybe I think this is kind of universal, but even if you’ve chosen a neobladder, the surgeon doesn’t know what they’re going to find during the surgery. And so I was measured for a stoma and they knew exactly where they would have placed it in case the ileal conduit was the decision that had to be made by the surgeon during the surgery. But I love the patient considerations you just walked through because those are particularly important and influential. Okay. So you’ve got a section that’s called What to Expect During Each Stage of Recovery. So what are some highlights from that?

Dr. Divya Ajay:

Yeah. So this is actually four different pages and we go through when you just wake up as a surgeon, as a urological oncologist, they’re telling you so much that sometimes we don’t have the time or we don’t think about when a patient wakes up from surgery and they first look at their belly, what is it that they’re looking at? And sometimes it can scare people. I actually had this experience where I did a very simple ureteral reconstruction, a very simple case. It went absolutely smooth and I decided just to leave a drain in the patient just for one night and the patient woke up and we had not talked about that and talked about how there was going to be a train.

Rick Bangs:

Sure.

Dr. Divya Ajay:

And she got really scared and upset about it. And it made me realize in all this stuff I’m telling her about the healing process and how long things are going to take. And I forgot to just mention something really easy as when you wake up and you look down, what should you expect? So that’s what this page goes through. It’s like when you wake up, you’re going to have all these different tubes and you know what? They’re all normal.

It’s all expected. It’s exactly what we planned for. There’s nothing that’s gone wrong and you don’t need to be worried about any of it. We also reemphasized here that it’s very important to have this extraordinary support structure when you first come out of surgery and in your immediate postoperative period, whether that’s family or friends or even sometimes needing to go to a rehab facility, but this is not something if you can, you really want to have a village around you when you’re recovering from all of this.

And then we go through really in detail what life is like when you first go home in the first one to three months after surgery and what life can look like for each diversion at around the one-year mark, and I like it. It’s very detailed, especially for the neobladder group. I think we spell out very clearly what peeing and what voiding can look like and what resources you might want to use to help improve the way you void. And of course, for the other diversions as well, what type of supplies you might want to carry with you when you go to the doctor’s office or otherwise. Yeah, it’s very detailed and I hope people will benefit from it.

Rick Bangs:

No doubt, no doubt. Okay. So you already mentioned traveling TSA as kind of a surprise to you, but were there other surprises as you were determining these criteria?

Dr. Divya Ajay:

We think about the first few months of a patient’s life and then we are not necessarily thinking of this person as they get older and they go through different phases of their life. And one thing a few different patients brought up was how to work with urinary divergence as you get older. As a reconstructive urologist, that’s something I see quite a bit.

There are patients who are 30, 40 years out from their diagnosis and now have dementia or have different issues where they are not able to manage their own diversions. So I like that we took some time to kind of investigate that, which was something our ostomy nurse also did reaching out to different nursing homes and seeing what other new updated policies are, what are people comfortable doing for patients with diversions?

What are they not comfortable? And we kind of delve into that a little bit. Also emphasizing that by far in a lot of hospital situations, the patient with the urinary diversion will know more about the urinary diversion than most medical providers that come in contact with that patient. I’m sure a lot of urologists will tell you stories about how they have had to advocate and educate other teams on this urinary diversion because it’s not something other medical staff and doctors and other providers are familiar with.

So we emphasize how you need to be a advocate for yourself and how you need to learn as much about this diversion as humanly possible. We do talk a lot about intimacy and intercourse as well. So that is also, I think hopefully will be helpful for patients. Yeah.

Rick Bangs:

Oh, no question on that either. Okay. So how would you characterize some of the differences between what men focus on versus what women focus on?

Dr. Divya Ajay:

Yeah, there certainly is an overlap, but we do see some trends. Men will often ask more questions about incontinence, erectile function and their kind of daily physical life. One important thing that we have learned through multiple avenues of research is that women definitely feel like their sexual health is not prioritized and is not discussed as thoroughly as men.

My partner, Dr. Bernie Bochner, has published his data on quality of life after urinary diversions and more recently, he parsed out just the data in women and he found very strong signals that even in patients who have a continent diversion and patients who have an incontinent diversion, women seem to fare worse with sexual health and emotional functioning. So this is a huge area we do need to focus on and we need to pay more attention to.

So we did call this out in our tool and specifically describing to women that if they do have an anterior exam, that means they had the hysterectomy in addition to the cystectomy, that they should expect some shortening of their vaginal canal and they should speak with their physicians specifically about how that could affect their sexual health. There’s a consciousness effort here. I think this is an ongoing issue that needs a lot more resources, but this is something we did try specifically to focus on.

Rick Bangs:

Excellent, excellent. So what are some of the biggest surprises for patients choosing a neobladder and the follow-up question would be for those choosing an ileal conduit?

Dr. Divya Ajay:

Sure. So I think for neobladder patients, again, if we don’t as doctors do a good job of managing expectations, patients can walk away thinking, “Oh, I’m going to wake up and it’s going to feel just like a normal bladder.” And initially, as you very well know, Rick, a neobladder has to be trained to become a bladder and that is like going back to being a toddler and going back to being a baby essentially.

So that bladder needs to learn a new voiding technique. You have to understand the nighttime leakage issues, possibly needing to catheterize, which is a smaller percentage of patients, but dealing with infections, dealing with a variety of things that your native bladder potentially did not have and therefore surprises patients how much work and training that neobladder requires. And I’m sure you could probably add more to that as well.

Rick Bangs:

Yeah. No, I think you’re exactly right. You’re exactly right. And I remember when they removed the catheter and they wanted me to void and I’m like, “Well, how do I urinate now? I don’t know how to do that because that had not been explained to me.” And I’m like, “Well, okay, I’m here, but maybe I’ve got some, but how do I do this?”

Dr. Divya Ajay:

Yeah, exactly. So we do go through that in the what to expect, how peeing sometimes becomes a slight variation of pooping or passing gas where you’re essentially relaxing your pelvic floor and then trying to use your belly muscles to push the urine out because the neobladder, as you pointed out, Rick, does not have its own way of pushing urine out like your native bladder did.

For conduit patients, I think people are often very nervous about what they can and cannot do with this external stoma bag. And people are really surprised to hear that you can still go scuba diving, you can go swimming, you can essentially go back to having an uninterrupted life. You can certainly go back to having intercourse. There’s so many things that people get nervous about that you don’t have to be nervous about because the stoma is, there are ways to manage it and find ways to adapt your life to it.

Rick Bangs:

Excellent. Excellent. Okay. So you got a section that’s got common questions and I found it had some very interesting and helpful information. So choose some of your favorite points and share them with us.

Dr. Divya Ajay:

A couple of patients, not something I had thought about, but a couple of patients brought up this issue with bladder transplant, which is like a brand new thing. You must have read the New York Times article on it. And we talk a little bit more about why that is not a possibility at this time because a lot of transplants are still under research and if you have cancer, you actually have to wait five years before you can get any organ transplant because the transplant medications can weaken your immune system.

We talked a little bit more about swimming, which is a very common thing that people ask and patients brought up. We talked about intimacy and intercourse. We talked about just we have a big session on sleeping. How do you have to adapt your life in order to get a good night’s sleep, which is super important when you’re recovering from this enormous surgery and just in general, managing urinary tract infections, aging with your diversion, how to get supplies, how to order supplies, and of course the resources.

The resources section, a lot of these are from patients, but it’s by far one of my favorite sections. We go through how your gut changes and how a beautiful write-up on how patients can have more changes in their bowel habits. And that’s again, not something that is necessarily talked about very freely doing pelvic floor exercises. And while I live in New York City and we have a lot of pelvic floor resources, someone in a more remote place may not have access to a fantastic pelvic floor physical therapist.

So we offer some virtual pelvic floor options, not my first choice, but at least to have that option, sex educators, virtual ostomy nursing. Again, if you end up needing an ostomy nurse and your hospital does not have great resources, where can you get a virtual ostomy nurse? And then of course the BCAN. The BCAN survivor to survivor program was by far one of the most highly rated resources that were talked about over and over again. And we just highlight that in our tool.

Rick Bangs:

Excellent. Excellent. So I’m guessing there’s a podcast that could be added to the resources section and an upcoming webinar, which we’re going to talk about at the conclusion of this. So the resources keep expanding, don’t they?

Dr. Divya Ajay:

That’s right.

Rick Bangs:

All right. What were some of the common questions you would hear from your patients before your tool existed?

Dr. Divya Ajay:

When we first meet patients who are undergoing this whole treatment, their whole focus is on, “How do I get rid of this cancer? How do I become cancer free? How do I live my best life?” And to be honest, they are not super impressed by any of the diversion options that we present to them.

Rick Bangs:

It’s not original equipment, so.

Dr. Divya Ajay:

They’re not.

Rick Bangs:

Yeah.

Dr. Divya Ajay:

And it is something hopefully in our lifetime, people see options that are closer to just going back to “where you were before you started” but this is what we have right now and we can work with you to optimize your life around these. So I think we’ve covered some of the concerns that people have, but I think it’s just also an overwhelming amount of information to wake up after this major bladder cancer surgery and go home with a brand new organ. So I think that’s sort of what people were focused on and correctly and hopefully the stool will help them learn about this new organ that they’re taking home.

Rick Bangs:

I have no doubts on that. All right. Any final thoughts?

Dr. Divya Ajay:

Yeah. Like you have also said the diversion is sort of one of the most personal and consequential decisions that a bladder cancer patient can make. And I’m hoping this tool helps people feel less overwhelmed and more empowered to have just like thorough and meaningful conversations with their physicians. Yeah, I hope people will use it. It’s currently housed in two formats. If you are looking at it on your phone, you can go online at msk.org/choose-urinary-diversion, so msk.org/choose-urinary-diversion.

And that should take you to the website and you can look at that on your phone. And then if you’re looking at it on a computer, I would go to the same website, but there is a PDF that you can actually download and print and that reads more like a booklet. It just lays things out a little bit differently than the website. So it’s easier to read if you’re somebody like me who likes to hold some paper and read it. So again, msk.org/choose-urinary-diversion. It’s in our patient education page.

Rick Bangs:

Excellent. Excellent. Dr. Ajay, I want to thank you for debriefing us on your tool that helps patients determine which urinary diversion may be best for them.

Dr. Divya Ajay:

Thank you. Thank you so much for having me.

Rick Bangs:

Oh, my pleasure. If you’d like more information on bladder cancer, please visit the BCAN website, www.bcan.org. Okay. So you’ve shared the URL or the website for finding the tool, but you’ve also got a webinar that’s upcoming for those who are listening to this before June 25th at 4:00 PM Eastern, that’s June 25th of 2026. So people can go to the www.bcan.org/webinars page and they can register for that before June 25th, and then for posterity that recording of your webinar on this very topic will be there for them as well.

Dr. Divya Ajay:

Yeah. Thank you.

Rick Bangs:

In case people wanted to get in touch with you, could you share a Twitter handle or any other information that you’d like people to have?

Dr. Divya Ajay:

Sure. Yeah. My Twitter handle is my first name, which is @divyaajay_uro. I’m happy to connect in any way. You can also email me. I’m Ajay, [email protected]. So yeah, it was a pleasure to speaking to you and I hope people will use this tool and it’ll be helpful.

Rick Bangs:

Oh, I have no doubt about that. 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. Please like, comment, and subscribe 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. Ajay.

Dr. Divya Ajay:

Thank you, Rick.

Voice over:

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