Webinar: Understanding Your Options Before Bladder Removal: A Guide to Urinary Diversion and Decision-Making

July 8, 2026

Description:

Facing bladder removal can feel overwhelming, especially when you’re asked to make a life-changing decision about urinary diversion in a matter of weeks. In this informative webinar, leading reconstructive urologist Dr. Divya Ajay explains the pros and cons of each urinary diversion option, introduces a groundbreaking patient decision tool designed to reduce regret and empower better choices, and answers the questions patients often don’t know to ask. You’ll also hear candid, inspiring stories from three bladder cancer survivors living full, active lives with different types of urinary diversions, offering practical advice, hope and reassurance for anyone preparing for a radical cystectomy or supporting a loved one through the journey.

Year: 2026

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Full Transcript of Webinar: Understanding Your Options Before Bladder Removal: A Guide to Urinary Diversion and Decision-Making

Patricia Rios:  

Welcome all of you to BCAN or the Bladder Cancer Advocacy Network, Patient Insight Webinar Series. I’m your host, Patricia Rios, director of education advocacy here at BCAN. And today’s webinar is on Understanding Your Options Before Bladder Removal: A Guide to Urinary Diversion and Decision-Making.

For people with bladder cancer who need their bladder removed or a radical cystectomy, choosing a new way for urine to leave the body called a urinary diversion is one of the most important decisions they will make. This life-changing choice can affect daily routine, sleep, body image, and overall quality of life. Yet many patients feel overwhelmed by the amount of information they receive and the limited time they have to make this decision.

To help navigate this important choice, we are joined by Dr. Divya Ajay, who will explain the different urinary diversion options, discuss key factors to consider when making a decision, and share practical tips to help patients feel informed and confident when talking with their healthcare team. She will also introduce a decision aid tool developed by her team at Memorial Sloan Kettering Cancer Center to help patients choose the option that best fits their needs, preference, and styles.

Following Dr. Ajay’s presentation, three BCAN patient advocates will share their personal experience living with the different types of urinary diversions. Their stories will provide valuable insight into the day-to-day realities of each option and the impact these choices can have on quality of life. So a little background on Dr. Ajay, before I turn over the screen to her. She is a reconstructive urologist and an assistant attending at Memorial Sloan Kettering Cancer Center. She earned her medical degree from Duke National University of Singapore Medical School, completed her urology residency at Duke University Medical Center and a master’s in public health from the University of North Carolina at Chapel Hill.

She went on to finish a fellowship in urinary tract and pelvic reconstruction at MD Anderson Cancer Center. And her current focus or research is on patient decision-making, treatment of voiding dysfunction, sustainable surgical practices, and genital urinary syndrome of menopause in cancer survivors and many more. She is the 2024 recipient of a BCAN Patient-Centered Clinical Research Award, which you will learn about later. And with that, I am going to stop my screen share and give Dr. Ajay a warm welcome for being here with us. Dr. Ajay, the screen is all your, and thank you so much for being with us today.

Dr. Divya Ajay:

Thank you so much, Patricia. Thank you so much for the invitation. I’m so looking forward to presenting and the conversation that’s going to follow. So thank you again for inviting me. I am going to talk to you a little bit about our project that was supported by the BCAN Patient-Centered Clinical Research Award and it is focused on helping patients make informed decisions about urinary diversions.

Dr. Divya Ajay:

So again, I cannot thank BCAN enough without whose support this work would absolutely not have been possible.

Dr. Divya Ajay:

So a little bit of a background, Patricia already gave you a beautiful introduction, but just to remind ourselves, patients with bladder cancer undergoing a radical cystectomy, which is the removal of the bladder, must not only cope with the stress of a cancer diagnosis, but also this important and vital structure. I have in my years as a urologist have noticed that nobody thinks about it until it starts to give you a problem and then it becomes the center of your life and the center of your focus. It changes how you’re drinking, how you’re eating and it’s just constantly in the middle of your attention.

The biggest thing here in this decision point is not only are you hit with this diagnosis of cancer, which is obviously a really big deal, but also now you have to decide on a new form of urinary diversion or a new way to pass urine, which is all big decisions. And this critical decision of a urinary diversion is going to be with you for the rest of your life and it’s going to change how you live in many ways. It’ll impact your quality of life.

Dr. Divya Ajay:

I’m sure most people on this call are comfortable with this anatomy, but just for us to review. The kidneys sort of sit all the way in the top and behind, they’re protected by your ribcage. They filter all the blood in your body and they produce urine, which is a waste product. The body’s trying to get rid of the urine and these little yellow tubes called your ureters drain the urine from the kidneys down to your bladder. And your bladder is just a holding station. It’s supposed to just be in the background, be very quiet and hold urine.

So unfortunately in situations when the bladder needs to be removed and in most of the situations with BCAN, it’s for cancer, but we also have to sometimes remove bladders because they’re nonfunctional or they’re becoming high pressure bladders, where they’re transmitting too much pressure to the kidneys. They’re putting the kidneys at risk. So there’s many reasons why somebody’s bladder would need to be removed, but bladder cancer by far, over 90, 95% is the most common reason why somebody’s bladder is removed. And in that surgery, radical cystectomy, the bladder is removed. The nearby lymph nodes or lymph pockets are removed. This is where cancer can potentially spread. And then sometimes, the uterus or other nearby organs, the prostate, et cetera, would also need to be removed. As I told you, the bladder is what’s holding your urine. So now we need to find a new way to either hold or get rid of the urine.

Dr. Divya Ajay:

So the three most common ways of this being done nowadays is an ileal conduit, a neobladder, or a continent cutaneous reservoir, which is known by many different names. So you’ll hear Jane later talk about her ileal conduit. She is a patient who has received this type of urinary diversion. And you can see here in the picture all the way in the left, the kidneys are again filtering all the blood, producing the urine and it goes into just one straight conduit. A straight piece of intestine that drains out into a pouch or a bag that’s on the outside collecting your urine and you empty the bag over a certain period of time.

You’ll hear Lydia talking about her neobladder and a neobladder is an internal structure that is created using your small bowel and it is constructed such that it represents an internal holding reservoir. It’s supposed to behave over time like a native bladder, but as Lydia will probably tell you, it does require a lot of training. You’re taking home essentially an infant bladder with you that needs to be trained to become an actual bladder.

And you’ll hear from Denver a little later, about his continent cutaneous reservoir. You may have heard this reservoir called different names, Indiana pouch, Miami pouch, the Mainz pouch. There’s many different ways to do this, but this is essentially another type of internal reservoir that instead of peeing through the urethra or the natural pathway, like Lydia’s neobladder is, Denver will talk to you about how he uses a catheter to actually place into this reservoir and he drains this through a little stoma, through an opening in his belly. That’s the picture all the way to the right. And these are all fairly complex constructions. It takes time for people to even wrap their head around, what is it that we are talking about?

Dr. Divya Ajay:

Why is this decision so hard? First of all, you just got hit with the big C word. A cancer diagnosis is one of the worst things people can receive. You’re grappling with that reality. Secondly, because of the cancer diagnosis and this urgency to have the bladder removed, the decision on what type of urinary diversion you need needs to be made quickly. There’s also the overwhelming pressure of the fact that there are going to be lifelong consequences from whatever urinary diversion you make. And you’re receiving just large amounts of information in a short period of time when maybe you’re really stressed out and are not necessarily in the best of mental state.

This is the bottom line is that there’s no single best urinary diversion. It’s not like everyone’s trying to get a Tesla or like a BMW. Each diversion comes with its own positives and negatives and you have to take the time to understand what might be best for you.

Dr. Divya Ajay:

So when I was in fellowship, I did another project where I was interviewing patients with diversions and I heard this theme over and over. It was a hard and scary decision. It came so quickly and it’s absolutely not what you want to hear and it’s not a decision you want to make. So it was something that was almost forced on you. You have to make this decision. It was a very stressful time and a lot of patients felt like somebody else made that decision for them, whether it was the medical team or other circumstances. This concept of things going fast and furious and not having the time to investigate a lot of resources.

When I talk to patients who’ve had their diversions done a long time ago, BCAN and these resources weren’t even around and they felt so cheated. They felt like they did not have the appropriate information. So we are working on this tool or we have worked on this urinary diversion decision aid tool essentially to help make people more confident and help them get all the information in one place, so that they can make better decisions.

Dr. Divya Ajay:

Because we know from data that patients who have after a urinary diversion can have decision regret, but patients who are well-informed have the least amount of decision regret, probably not a surprise.

In this recent survey of about 200 patients from five or six different countries, it was an online survey from a Belgium group and they felt that … Over 84% of patients felt they were well-informed, they were supported and they had this really great relationship with their healthcare team, but over 90% of patients reported some level of regret. And that’s really alarming to hear that and most of it was related to their urinary diversions. They reported regret with respect to physical and mental health, quality of life, sexual function, body image, sleep and daily activities. And these were patients who I might remind you, felt like they were well-informed going into this.

Dr. Divya Ajay:

There’s all these different tools to help patients. So a decision aid is something that is universally accepted to help patients make decisions. And looking at the data that’s out there, there are almost 50 in the prostate cancer realm, but only this one out of all of them in the bladder cancer and in the urinary diversion space. So we looked through this decision aid, we felt it was very good, but it was inadequately tested and we felt like we could do a little bit better.

Dr. Divya Ajay:

So we worked on essentially creating another decision aid and then testing it to make sure we were sort of happy with the way it was presented and patients were happy with the data that was presented in it.

Dr. Divya Ajay:

So we looked in this grant that we submitted to BCAN and was thankfully granted in 2024. We started off by looking at all the data that was out there. So all the literature, everybody who’s published on this, systematic reviews. Talking about decision regret, everything. We looked at guidelines on how decision aids are made and we put together a multidisciplinary steering committee. I will introduce you to them at the end of this presentation. Then we developed a first draft of this tool.

We took that draft and we went to about 45 different patients, caregivers, physicians, different people, and asked for structured feedback. Doing one-on-one interviews, doing surveys, doing live feedback sessions. And after taking all that feedback, after three rounds of feedback, we then created our final decision aid. We have now published that on our website and I’m going to share that with you. And after it was done, we also got feedback from patients who had …

So just to be clear, the first round of testing or feedback was given to us by patients who already had urinary divergence, who already have been through this drill, who know these things better than we do. The second round of testing was to truly get feedback. Like, “Is this usable? Is this worthy of being used?” And that’s called beta testing. And that was for patients through the Survivor 2 Survivor program, who have never had a urinary diversion.

Dr. Divya Ajay:

I cannot thank the BCAN volunteers and everybody who’s helped us with all of this feedback. So like I was telling you, about six to eight patients in each round and two caregivers in each round and eight physicians.

So we really did try to get BCAN volunteers from many different phases of life and different genders and different types of diversions represented. You can see here that there was a good mix, except for race. But remember, these were volunteers. So we didn’t really have a choice in necessarily making sure … We were trying our best to make sure that the feedback we were getting was from a very diverse population and the four caregivers as well.

As far as physicians are concerned, these are physicians both from the United States and from Canada. They are mostly cystectomists, who are involved in bladder removal surgery, but also a few reconstruction urologists, like me who work on reconstructing the bladder. Stoma nurses, who I’m sure a lot of you are familiar with, who support patients once they have a urinary diversion, gynecological oncologists. There might be some people on the call here who don’t have bladder cancer but have a gynecological cancer, who also end up getting urinary diversions. Medical oncologists, geriatricians, sex med expert, and experts in making decision aids essentially.

Dr. Divya Ajay:

So I’ll tell you our biggest takeaways are how historically different surgeons and clinicians think versus how patients think. The clinicians … And this is what has been published in the literature as well, very focused on, what is the cancer control here? Is this surgery technically feasible? What are the immediate postoperative complications? A lot of the hospitals get these metrics on 90-day complication rates. That is a huge up and center piece, when you’re talking to clinicians. They’re very concerned about that, as they should be. Nobody wants complications.

What are the surgical risks involved here? Is this patient’s kidney and liver and heart function good enough to undergo this type of surgery? So those were the things surgeons were very focused on and that’s what they really wanted us to focus on in the decision aid. Patients on the other hand, and I’m very grateful for everyone who volunteered their time to give us feedback, very different interests. Can I travel? Can I swim? Is this going to feel normal? Am I going to be able to have intercourse? And what does intimacy look like with a urinary diversion? What does aging with a diversion look and feel like? Am I going to feel independent? And huge emphasis on leakage, catheterizations, et cetera.

Dr. Divya Ajay:

Once we collected all our data, these were the main eight areas that the patients focused on. Some of these areas were absolutely not in the first few versions of the decision aid because it wasn’t something that was in the literature and it wasn’t something that most of other decision aids talk about. But huge emphasis on sleep and this is by … I would say sleep was brought up the most number of times by count. So sleep, intimacy, peer support, travel, body image, aging, catheterization. And then, where do I get these supplies? These are so foreign, these are so different and how much do they cost?

I’m going to give you a few of the quotes from our anonymized patient interviews and they told us to be explicit about what sexual problems. Everybody says you may have sexual problems about this, but what sexual problems will you face? Is it about the ability to maintain an erection? Is it about vaginal length? Is it about having an orgasm? It’s also important to state differences between men and women, which again, we know … A lot of women have told us over and over that sexual function is not something that’s ever brought up and it’s not adequately discussed.

Patients told us that nobody mentioned urinary leakage about … And NB is neobladder. So this was an ileal conduit patient. Nobody had told this ileal conduit patient that the stoma could leak and of course, they had no idea about it, so that was a learning curve. Patients also told us that … Part of it is to know that … This is a big surgery and you’re going to have complications no matter what you do, you probably will. So you don’t know if you’re going to be that person that has the complication. It was very insightful to hear their perspective on that.

So this is the final decision aid. You can see on the right-hand side in the bottom, there’s a short URL. It’s msk.org\choose, C-H-O-O-S-E-urinary-diversion, U-R-I-N-A-R-Y-diversion, D-I-V-E-R-S-I-O-N. And that is a QR code. If you’re looking at this on your phone, it’s too bad, but if you’re looking at our screen, you could use that.

I just wanted to show you a few highlights. This is a long decision aid. We have really tried to get a lot of information here in one place for you. So the first few pages are glossary. We are using a lot of new terms here. We are very comfortable with a lot of these terms. So we use them all the time, but we don’t realize that this is brand new vocabulary for a lot of people. So we took the time to draw some images out. We draw some pictures out and show people, what is an intermittent catheter, versus what is an indwelling catheter? And like I said, there’s about two pages of that.

We talked, like I said, about the different types of diversions and gave you a thorough definition. It is at sixth grade reading language. A lot of people don’t like to read. We try to make it just very clear and use as few words as we possibly could, even though it is a lot of brand new information. We, like I said, took feedback from actual patients and put it out there. We are discussing what TSA screening and travel looks like, what your sleep schedule looks like with the different types of urinary diversion and really bringing your feedback from real patients here.

And then we went through multiple pages of complications and really breaking it down to … Is this a common complication? Is it a rare complication? How often can people expect this? We do touch upon some complications here that were actually not even listed in the literature, but it was something patients brought up over and over. So that was really interesting. Again, emphasizing greatly things that matter to patients, like sexual dysfunction.

This by far is my favorite part of the tool, which is what’s called GIST-based urinary diversion, which is listening to your gut. You can take all of this information, but what is it that your gut says? This part, I will specifically call out Lydia. She gave me feedback on how to describe this better, when you’re thinking about the different diversions and how your body is going to feel with the different types of diversions. I’m giving you a small part of a page that’s a whole page, that goes through what it is that are your true motivations and what really feels right as far as the diversion looks like.

So like I told you, the last part was we took this final decision aid and we took it to 12 physicians, who had never seen it. And thankfully everybody agreed that the information was correct and balanced and they rated it highly effective for clinical use and they believed that it would help them with their discussions. We also took it to 13 patients from around the country, who had never had a urinary diversion. This was the first time they were finding out about it and everybody said it was easy to read and educational. Most people felt that it provided the right amount of information.

I have learned that there’s no way to make everybody happy. Some people felt that it was too much information and some people still felt after 30 minutes of reading, that it was not enough information. I love that people were still interested and keen on going through more information, but 77% felt that it increased their confidence in making a decision and most people said they would recommend it to other people.

I mean, my take-home messages here is … The main thing that anybody who’s going through this very horrible decision, which I don’t wish on anyone, but you have to know is that there’s no single right urinary diversion. The rightness of that diversion is on you. How right is this for you? Every option has trade-offs and the best option really depends on your health, your cancer in some ways, your goals and your lifestyle. And it’s so important, we heard this over and over about how patients felt it was important to get caregivers involved and caregivers both in the decision-making process, but also in the postoperative process. We are trying to reduce regret. Regret is a misalignment of what your reality is and what your expectation is.

While we can keep working really hard clinically on changing your reality and giving you the very best surgery, if we don’t manage your expectations, then we are going to increase regret. So an informed patient is more likely to feel confident in their decision and hopefully have less decision regret.

This was a huge project and I could not have possibly done it on my own. So I want to thank our team. Sigrid Carisson is a researcher and she’s an expert in decision aids. She was the main mentor in this project. Alvin Goh is one of our urological oncologists and he’s a cystectomist. Jamie and Thomas are part of the MSK patient reported outcomes. So they were the ones who really brought the methodology on how to do this work and how to interview patients and how to extract all the correct information from the interviews.

Vashti is our wound ostomy nurse and Sandy is one of yours. She is the continent cutaneous diversion or Indiana pouch support group from BCAN. And two of our other urological oncologists, Dr. Bernie Bochner and Machele Donat spent a lot of time giving us feedback on this as well. So that’s all I have. And thank you again so much for having me. I really appreciate everybody listening in.

Patricia Rios:

Thank you, Dr. Ajay, for walking us through the tool and introducing us to it. I think something that you said really resonated about the more informed a patient is, the more confident they feel with that decision. And so what I did want to mention to our listeners today is to remind you of some of the options or resources that are available on the BCAN website, as you look to learn more about the different diversions. We have fact sheets and videos to better understand what those diversions include and entail.

With that, I would like to transition to the second part of this webinar, which is creating a space to hear from three BCAN patient advocates, who will share their personal experiences living with the different types of urinary diversions that you heard from Dr. Ajay. I would like to welcome Denver Mossing, Lydia Saravis and Jane Theoharides to the screen. I’m hoping they’re not having any video challenges. There you go. I see Denver, Lydia and Jane. Okay, awesome. Yes, everybody’s on.

Let me introduce each of them. You’ll hear from them individually. Denver, who is from Ohio, he has three grown children and four granddaughters. He currently serves as a deacon in the Ohio area. He was diagnosed in 2017 and after BCG failed him, he had an Indiana pouch and has been eight years, no evidence of disease since. So thank you, Denver. We’ll hear from Denver first, but after Denver, you’ll hear from Lydia who was diagnosed with bladder cancer in 2015 and within a few months she had her bladder removed and replaced with a neobladder diversion. She is the founder of the Neobladder Support Group that I think many of our community is familiar with. She’s also an S2S or Survivor 2 Survivor volunteer along with Denver. And Lydia is the 2024 Beacon of Hope Award recipient.

Jane, who is our third patient advocate panelist is a retired public school teacher and is the founder of the Women’s Bladder Cancer Urostomy Support Group. She was diagnosed with bladder cancer in October 2020, when a CT scan done for another medical issue revealed a tumor in her bladder. And so I’m grateful that the three of them are here to share their journey, share their experience living with that diversion. And also, they will be available for the Q&A. And so after we hear from Denver, Lydia, and Jane, please stick around and feel free to enter your questions in the Q&A chat box. We’ll address those after their presentation. So without further ado, Denver, let’s hear from you first.

Denver Mossing:

Well, as she said, I’m Denver Mossing. I’d like to thank Dr. Ajay. What a wonderful presentation she gave us about decision-making. With my journey, I started in Toledo, Ohio with going to my urologist and he ended up doing a TURBT and found out that I did have cancer. We went through BCG, the six treatments there. Went through my second TURBT and cancer was still there and he was ready to do surgery right away. And I just needed a timeout to make my decision as to what was going to go on. And I decided to get a second opinion at a cancer hospital. So I went to the James at Ohio State and I met up with Dr. Pohar and he is just a wonderful, wonderful guy. And he said, “Let’s try maintenance.” We did three more BCG and we did the blue light cystoscopy at that point. And he said, “Boy, that looks really good.” And you’re getting your hopes up when you hear that.

And then the biopsies came back, cancer’s still there. It was very aggressive and it was moving down through my urethra. So he said, “We got to get your cancer out and remove the bladder.” I said, “Okay, how long of a waiting list?” He says, “I’ve got about two years out, but I’m bumping people to get you in.” So I had surgery within four to six weeks after the diagnosis with Dr. Pohar that it was still there. And he suggested the Indiana pouch at the time.

The neobladder was out of the question because not only the bladder had to be removed, but they had to remove my urethra as well because the cancer had spread to … I had bladder cancer in my prostate and it was moving that way. So went with the Indiana pouch and the hardest part about that is … With any of them, there is a learning curve and early on leakage and that and you’re dealing with that, but I am now eight years out. This July I will be eight years and leakage is not a problem. Sleep is not a problem. I sleep all night long and I drain approximately five times a day, six times a day and everything is going well.

No evidence of disease at this point and I want to keep it short, so we have time to get the question. That’s all I have to say right now.

Patricia Rios:

Thank you, Denver. Thank you for being with us and sharing your journey. We’ll go to Lydia next.

Lydia Saravis:

Thank you, Patricia. I’d like to thank BCAN, Patricia Rios and Allison Aitken for inviting me to participate in today’s discussion. I appreciate the opportunity to be a part of this webinar. Eleven years ago on my birthday, I saw a large quantity of blood in my urine. While I’m not in the habit of talking to myself, I do recall saying that’s not good out loud. After seeing my GYN and then my internist, I was ultimately diagnosed by a general urologist, who ordered a CT scan and did a cystoscopy.

After those tests clearly pointed to a bladder cancer diagnosis and the suggestion that my bladder would be removed, I was referred to a urologic oncologist at a local medical center. I was very fortunate because unbeknownst to me at the time … I was referred to one of the best urologic oncologists in the US, Dr. Sia Daneshmand. A leader in neobladder surgery, not only in volume but in successful outcomes.

When I first met with him, I thought I was heading for bladder removal than ileal conduit because that is the only diversion I had heard about and even then my knowledge about it was vague. The urologic oncologist told me that he had to do a TURBT first for a definitive diagnosis and then we would know the treatment path, but I was very focused on learning about the urinary diversion. It was at that initial meeting that he introduced me to the internal diversions.

After the TURBT, my diagnosis was stage one, high grade urothelial bladder cancer. Over 50% of my bladder was covered with large tumors. This diagnosis confirmed my bladder was going to be removed. At that time, I did not know about BCAN and the S2S program. I really wanted to talk to other women who had been through this process. I went on Inspire and met many wonderful women, who were willing to talk to me on the phone. I also asked to speak to my surgeon’s female patients.

It is overwhelming to be diagnosed with a lesser known cancer than be thrust into the world of urinary diversion. Being able to talk to women who had an internal diversion was so helpful and reassuring. It was a fundamental part of my decision process. It was this experience of finding support from others at such a difficult time that led to my starting the Neobladder Support Group. I was particularly interested in the internal diversions because I’m allergic to adhesive, which would have made the ileal conduit a difficult option for me. I really struggled with my choice between the two internal diversions. Both had their pros and cons and we don’t get a trial run.

After much discussion with other patients and my surgeon, I chose the neobladder. In the blur of a diagnosis and the impossible decision to be made, my silver lining was my surgeon. I asked him about a myriad of potential complications that I read about and he explained how they would be managed. His confidence and reassuring manner carried me through the few complications I did have. The first five years I was fully continent day and night. Around year six or seven, I would occasionally leak at night, typically if I drank a lot before bedtime.

I met with my pelvic floor physical therapist at my hospital and she gave me some exercises to do, which have helped. I do not catheterize to void and I attribute my excellent neo-function to my surgeon’s skill. Most neo-people are continent during the day and some will leak at night. There are a few variables that can contribute to leaking at night and there are some ways to manage nighttime incontinence. Some neo-people will use a catheter to empty. Many people in the pre-op space are very concerned about potentially having to use a catheter. Looking at cathing in the context of silver linings, it allows you to exit the restroom very quickly.

My suggestion is to talk to your surgeon about these possible outcomes. It is okay to ask about these issues and what your expectations should be. I think it’s also helpful to get a second opinion, which will provide a different perspective and perhaps a different set of expectations. BCAN does a great job of describing the diversions in their literature and through webinars such as this one. The patient listening who is considering their diversion choice will find a lot of information through BCAN to help them understand and refine their choice.

However, I have found that many people who learn about these options find it challenging to obtain an internal diversion. My suggestion is if an internal diversion interests you and your doctor has not suggested it, I would ask if it’s an option you can consider. If it is, ask for a referral to a surgeon who does many of these surgeries, experience matters. You can find urologic oncologists who do these surgeries at NCI hospitals. It is not uncommon for people to travel either in their state or to another state for these surgeries.

When you meet with the surgeon, bring a list of questions with you and if possible, a family member or friend. Four ears are better than two. Once you have the information about the different urinary diversions and their respective recovery pathway, you can make the decision of which diversion is right for you. After surgery, I wholeheartedly recommend finding a support group for your diversion. Along with camaraderie born of a shared experience, you will find support and tips for living well with your new diversion. In closing, I’d like to thank the Neobladder Support Group for their contributions as I was preparing my presentation.

Patricia Rios:

Thank you, Lydia. And thank you for providing some of those tips with those who are listening. I do want to say … I mentioned that this webinar is being recorded and that was a question that was submitted by those who registered for this event. I say this because the tips you’ve provided will be part of recurring resource for those who are in the future have to be faced with this decision. So thank you so much to you and to the Neobladder Support Group for those tips. Last, but certainly not least, we’ll hear from Jane who will speak about her experience, journey and diversion. Go ahead, Jane.

Jane Theoharides:

And I’d like to thank Patricia and Allison for inviting me to participate in this webinar. I was diagnosed with micropapillary urothelial cancer in late October of 2020. It’s a rare and aggressive variant and my bladder was removed on December 30th of 2020. So I was about nine weeks from diagnosis to bladder removal and it was all during COVID. Almost six years later, I can say that my decision, excuse me, in choosing my urinary diversion was the right one for me. That’s most important, that the decision is the right one for you.

I’m going to take you through my reasoning of how I made my decision and why I felt an ileal conduit was the right decision for me and why I didn’t choose another diversion. It’s a really personal decision. My first thoughts focused on age. I turned 68 two weeks before my surgery. I was concerned about personal care as I aged. I decided a urostomy would be the easiest to care for if I needed help as I aged or if my health or a memory loss necessitated placement in a care facility.

My decision was also impacted because I had spent years watching and helping my parents and in-laws struggle with their health and aging. My next thoughts went to my emotional health. I’m an anxious person and I struggle with perfectionism. The recovery from surgery with an ileal conduit is shorter and simpler. I wasn’t sure how I would deal with training a neobladder. I get flustered really easily. I live two to three and a half hours depending on traffic from Boston and I was concerned about how many trips I would need to make for follow-up care. I felt the urostomy might require fewer trips to Boston.

My next concern in making my decision focused on the possibility of not achieving continence with a neobladder and maybe having to catheterize. These two possible situations really bothered me and I had read that men fare better with the neobladder than women. Was I strong enough to take this gamble? I decided I wasn’t. I was quite sure with an Indiana pouch I could not handle the catheterizing every four hours for the rest of my life and I was concerned about being able to put the catheter in my stoma. All my concerns led me to choose an illeal conduit for my urinary diversion.

Now I needed to examine, what’s life going to be like living with a urostomy? I was going to need to learn to change the pouching system, to pay attention to the peristomal skin, to be cautious of peristomal hernias, to be aware of symptoms of UTIs, and to be prepared for leaks. I wasn’t bothered with the idea of forever having a bag on my belly or concerned about touching or seeing my stoma. To me, she’s a part of me, from me and she gives me life, so I named her Zoe and to me, she’s a perfect little rosebud.

I was fortunate not to experience any complications immediately after surgery. No wound infection, no ileus, no readmittance for dehydration, no UTIs. And I can honestly say, any leak I’ve had was operator error, not snapping the seal correctly. At about 20 months, I did develop a peristomal hernia. My urologic oncologist referred me to a surgeon for evaluation and that was repaired in January of 2023 and so far so good.

At about 30 months, I developed a type of small bowel prolapse called an enterocele and that was repaired in August of 2023. Since then, I haven’t experienced any complications related to the urostomy. I do take MiraLAX daily to assist with bowels and a TheraCran One capsule to make my urine a little less hospitable to bacteria. By using a night bag, I get to sleep through the night and I no longer have to be concerned about public restrooms as I stand to empty the urostomy bag. I can drain into a jug while my husband’s driving down the highway. Into a disposable water bottle while I’m kayaking or behind a tree when I’m hiking.

I do need to always have supplies with me and to be sure my supply at home is sufficient to get me to the next order date. You cannot walk into a pharmacy and purchase these supplies. Being prepared and planning is a big part of living successfully with a urostomy and I’ve always been a planner. My life has a definite quality to it. I bike ride, kayak, hike. Do aerobic and strength classes at the Y and walk three miles a day. I’ve gotten to watch my grandsons grow from the ages of one in three to seven and nine. I travel both domestically and internationally. I’ve developed detailed lists for various activities and travel, so I’m always prepared.

What matters to one person may not be important to another. Figuring out what matters to you will help you make your decision about what urinary diversion is best for you.

Patricia Rios:

Thank you, Jane. And thank you for sharing your journey with us. Wow. Those were three really impactful stories and really practical tips also. I have a couple more questions for the three of you, but I think what we’re going to do, we’re going to go into the Q&A session. So I’ll save them for a little bit. So I see Dr. Ajay’s back on the screen and we have a few questions that were submitted via the chat. If more questions come to mind as we have this conversation to those who are listening, please feel free to enter them.

We also did receive some questions in advance, so I’m going to address those first and then we’ll go to the chat as well. So Dr. Ajay, there was a question by one of our participants who wanted to know, how many resections can you do before making a decision a bladder removal is needed?

Dr. Divya Ajay:

It really depends on the grade and the stage of the cancer and what has already been tried and what the patient’s response is. So it’s not about number of resections. It’s sort of what grade and stage the patient is at.

Patricia Rios:

Thank you for emphasizing that. When it comes to diversions, do you find that one may be most commonly used among women or say the gender may benefit more from a certain diversion? What are your thoughts on that, in terms of what you see?

Dr. Divya Ajay:

As you can see from our panelists. I will say there are certain medical criteria that you have to meet to be able to get an internal diversion that includes where the tumor is and that you have decent kidney and liver function to be able to tolerate. Because as you can imagine, the bladder is just a storage reservoir. It just holds urine. It doesn’t necessarily interact with urine. Bowel is not made that way. Bowel is made to interact with whatever goes through the bowel.

So bowel will actually take up urine, will actually absorb some urine. So if you’re coming in with kidney issues, you’re not going to be a great candidate for internal diversions. There is a list of other medical issues as well that we have to review, but it’s not a gender related fact. In the decision aid, we do talk about the … When you’re discussing the internal diversions, we talk about the neobladder and how there is a higher risk of what’s called hyper-continence or inability to empty your bladder completely. That is higher in women than men, largely because you’re using some of your own core strength to empty the bladder because the neobladder does not have an internal muscle like our natural detrusor muscle does have. And also with certain nerve sparing practices.

It is a little bit different in women than men. But outside of that, there isn’t a gender preference. It really is the patient’s preference and also what medical factors are involved in the decision-making.

Patricia Rios:

Okay, excellent. Thank you for explaining that. What about age? Does age also play a role?

Dr. Divya Ajay:

I mean, age is ultimately just a number. It depends on … I mean, I’ve seen 97-year-olds that we’ve done surgeries on and they’ve just done amazing and I’ve seen 50-year-olds who’ve had multiple cardiac bypasses. You’re not a good surgical candidate. So it is ultimately a number, but we do see that patients who are over maybe 75, 80 years of age or so. Their sphincter function, both anal sphincter and the urinary sphincter is a little bit weaker. It just depends on that conversation of making sure the patient’s expectations are appropriate.

I know at MSK … So after 75, they generally don’t offer radical prostatectomies for patients who have prostate cancer. And it’s the same thought process, is that if you’re looking for a neobladder, where the urine is coming out through your natural urethra. If your urinary sphincter is not that great, your chances of leaking and having other issues is going to be higher. That said, again, age is just a number and it really is a one-to-one discussion based on the patient’s health and their overall physical fitness and mental fitness.

Patricia Rios:

Okay, thank you. So it’s very important to have that conversation and have the assessment with the healthcare team. All right. I have a couple questions for Denver, Lydia, and Jane, and then we’ll take the questions that I see in the Q&A chat box. So Denver, Lydia, and Jane, is there a question you wish you had asked before surgery? Thinking about eight years ago or so, if you can think back, is there something that probably comes to mind?

Lydia Saravis:

I have to say that I asked a lot of questions. I may have been annoying, but I encourage people to ask as many questions as they feel they need to make a confident choice.

Patricia Rios:

Thanks, Lydia. Jane, you also had something to add.

Jane Theoharides:

I asked lots of questions about UTIs and peristomal hernias, but I was not aware of prolapse issues. And I’m not sure if they are more common in females, but I would definitely encourage women at least to ask questions about the possibility of prolapse and if anything can be done to help to prevent that.

Patricia Rios:

Great question. Denver, I think you also had your hand up.

Denver Mossing:

Yeah, I just wish that I had more time from the time of the true diagnosis after the last TURBT to when the surgery was, because I didn’t have any chance to do much research. So a tool like this would’ve been very helpful to be given out, not having a lot of time, but I wasn’t even aware of BCAN at the time of my surgery. So all of this came after and all my knowledge came after. I wish I had known more and knew more what questions to ask. When you’re hit with the big C, you don’t even know what to ask because that’s all you’re thinking about is, “I have cancer, I have cancer and this is going to take care of it, removing it. Okay, great.” You’re so overwhelmed with what’s going on, timing and any resources can help.

Patricia Rios:

Thank you, Denver. That’s why I think I like Lydia’s advice, if you can take somebody with you to those appointments, we encourage you to do that. There are resources available to help you and I know we have plenty at BCAN. Those of you on the screen are a great resource with the support groups you lead and also volunteers for S2S. I keep saying this, I’m going to go to the question in the chat, but Dr. Ajay, I just wanted to ask if you could explain prolapse and address that, if there’s any concerns or things that patients should consider.

Dr. Divya Ajay:

Sure. Prolapse is rare. We have studied this and it is more common, of course, in patients who don’t have organ sparing. So if you have organ sparing surgery, the uterus is held up by its own reference points. So the prolapse is rarer in patients who have spared their organs. So I would say it’s very challenging.

There’s also two different types of prolapse. There’s one type of … We call it prolapse, but it’s not really prolapse. It’s where the vagina is shortened. We take the vagina and we sew it to the tissues around the urethra, once the urethra is resected and that anastomosis essentially separates. So what you are seeing prolapsed is not really vaginal tissue. Vaginal tissue is actually very strong and firm and healthy. It has three layers to it and it can be repaired.

But this tissue that is the separation of the vagina to the periurethral tissue is more like a dehiscence and that’s what we see most commonly in post-cystectomy patients. It can be fairly mild, where there’s just a bulge and that dehiscence causes leakage, which is very bothersome because you have to start wearing a liner, or it can be very severe. In some very rare cases, we have actually seen more severe outcomes in that situation. Again, prolapse is not …

It is very rare. I would say maybe 6 to 10 a year among hundreds and hundreds of patients, and it’s also very difficult to fix. That said, there is more awareness of it. There’s more publications. So there are things that are being done intraoperatively. I’ll say one of my colleagues at MD Anderson is really propagating doing more organ sparing. The uterus doesn’t always need to be taken. So that’s another important conversation. Does the uterus have to be taken as part of the surgery? Maybe it doesn’t.

So that’s one preventative thing. There are also surgical techniques that you can do to support both the anastomosis, where the vagina and periurethral tissue is attached together. And also, if you come in with prolapse, things that can be done to buttress that area.

Patricia Rios:

Okay. Thank you. And Dr. Ajay, do you have any tips for patients to bring up that conversation around organ sparing, when they are having a conversation about the surgeries?

Dr. Divya Ajay:

Yeah, absolutely. This is mostly in women. So in organ sparing with respect to women. Not doing a prostatectomy in men is fairly rare nowadays because there’s a risk obviously of prostate cancer, which is another conversation. But coming back to the women conversation about organ sparing. It used to be the default, where we always felt like the urethra was part of the anterior vagina and the uterus was close enough to the bladder and why was it necessary? But now there’s more and more data that the uterus does not actually need to be taken.

The main source of issues like ovarian cancer are the fallopian tubes. And as long as you take the fallopian tubes, you don’t have to take the ovaries, you don’t have to take the uterus. I think having that conversation, what exactly is going to be done as part of the surgery and what needs to be done? Now we have all this great imaging with MRIs, that’ll actually tell you, is there an invasion? Is there any adjacent organ concerns? Most of the time you can get away with organ sparing and not have any problems.

Patricia Rios:

That’s definitely comforting to hear. One of our listeners today wants to know, how do you stop burning in the urethra?

Dr. Divya Ajay:

Yeah, this is tricky one because I don’t know if he’s had a cystectomy, or this is after a TURBT, after just the first resection, as everybody here knows that causes a lot of burning for multiple reasons. Number one, there was just a scope in the urethra. Number two, the inside lining of your bladder is like the inside lining of your mouth. It’s soft and mucosa. When we resect that, it’s replaced by scar tissue. So that replacement itself and that process of healing causes a lot of burning. A lot of times we associate burning in the urethra with urinary tract infections in rare cases, with sexually transmitted diseases or vaginitis. This is a man, I’m sorry. So that’s not an issue.

Other things are pelvic floor issues. Somebody had brought up going and seeing a pelvic floor physical therapist. That is a great option. In patients who are post-radiation, I don’t know if he’s had any radiation. You do a course of NSAIDs or anti-inflammatories, a course of steroids can sometimes help. Vaginal or rectal Valium can sometimes help, but I would start with understanding a little bit more about, when did the burning start, what caused it? And then other factors around his urination.

Patricia Rios:

Excellent. Thank you. It’s a broad question, but you did a great job helping us think through that and the conversations that we should be having with our providers. So the next question is from another listener who is saying that they had urinary retention for four years and their doctor does not know what’s causing it and has been using intermittent catheters to empty the bladder three times. Considering this information, is neobladder still an option? Are there other things that this individual should consider? Specifically they’re considering neobladder.

Dr. Divya Ajay:

Sure. Yeah. Again, there’s a lot of things that need to be discussed from a one-to-one basis here, to understand the details of the case. When you think of somebody not emptying the bladder, think of a car trying to leave the driveway. Is it that the driveway is really clogged with a lot of stuff and the car can’t get out? Or is it that the engine of the car is not functioning? If it is an issue with the driveway, I would be careful with a neobladder because a neobladder is giving you a new space to hold urine, but that driveway still needs to be completely functional and normal in order for you to get the urine out.

If it’s a problem with the engine, then essentially we’re replacing that engine. So there should not be an issue with it. Again, the cautionary advice with the neobladder, you’re taking home this brand new organ. You have to train it. You have to learn how to pee, which is a whole different way of urinating than how you urinate beforehand. So you have to be prepared to do the work to train that organ.

Patricia Rios:

Thank you. There’s a question about recovery time and I would love to hear from Dr. Ajay what you see in clinic in terms of recovery for patients over time. But I also would like to hear from our patient advocates in terms of how long it took you to … What that recovery window looked like. So we’ll start perhaps with you, Dr. Ajay, and then we’ll hear Denver, Lydia, and Jane in that order.

Dr. Divya Ajay:

Sure. Yeah. We asked patients when we were interviewing them and what we got was about six weeks to about three months for the ileal conduit. And with the neobladder, again, the recovery for the patient really depended on how much time it took them to train the internal reservoir. So that was anywhere between six weeks to six months or so.

Patricia Rios:

And Denver, what was your experience like?

Denver Mossing:

Yeah. With the Indiana pouch, my surgery was a little more extensive because I did have to have the urethra removed. So my recovery time actually wasn’t as bad. I probably was at home and out of work for three months. And after that time, I did go back to work and I was retaining for three to four hours at that point. So I was doing really well.

Patricia Rios:

Thank you, Denver. Lydia.

Lydia Saravis:

Yeah, thanks. If I could want to specify a little bit of what that training means. It’s a process where you’re … After the surgery and after my Foley catheter was removed, I had zero control. So I was wearing a pad, but I was given instructions to do exercises and little by little over time I was able to hold for a little bit longer before having to go to the bathroom. And what that process means is that as I was able to retain more urine for longer periods of time, the bladder could stretch a little bit. So it was sort of like a yin-yang.

As you held a little bit longer and the bladder stretched a little bit, you were able to go longer between bathroom visits. And that process does vary widely between people and I agree with Dr. Ajay’s timeline. For me, my daytime continence came by six weeks and my nighttime by four months, but I was very vigilant about my exercises. I think that made a big difference. The bigger challenge for me in my recovery, which took much longer was fatigue. And that was just a function of adjusting after the surgery and just how it impacted me personally.

Oftentimes people are told it’s a year and in my case it was, in terms of getting my full stamina back, but my continence came I think in a reasonable amount of time. As far as going back to work, I do have some people in my group who went back to work part-time at two months, but seems more the regular experience, the typical experience is people go back to work after three months.

Patricia Rios:

Thanks, Lydia and Jane.

Jane Theoharides:

I would say it was probably about three months for me because it was the winter and it was also COVID. So it wasn’t like you could go out to a coffee shop. We didn’t go anywhere. We were super careful. So I would say probably three months. And I think the biggest thing for me is to realize that recovery is not linear. I mean, in the hospital I was just sailing along and everything was wonderful. I mean, I was told by several doctors, I was the most aggressive post-op person as far as walking and everything. But then I came home and there were like little blips.

There were days that I would be down and I would be really fatigued and depression was very real for me. So just remember that recovery is not linear. Just because you’re going right along full forced and everything looks great that it’s not going to … Maybe for you it’ll stay that way, but for me it didn’t.

Patricia Rios:

Thank you, Jane. We have a few more questions, so I appreciate everyone staying a little extra here with us. Dr. Ajay, can you speak a little bit about other treatments that are used to treat the bladder? For example, you mentioned radiation, there’s a question here about radiation as well. What role does it play in treatment for bladder cancer?

Dr. Divya Ajay:

Yeah, absolutely. At their latest ASCO meeting, there’s a lot of interest now in bladder preservation options. So radiation and also just observation. So you can do EV-Pembro or one of the new treatment options and then just wait to see how things go. I think there’s a lot of data that’s still pending and we are asking these questions and we are investigating and it’s a really interesting space.

The radiation in particular, I’m … I think we need to just proceed with caution. I think there’s a lot of enthusiasm to preserve people’s bladders. However, sometimes, like I told you, the bladder. We don’t think about it until it starts giving us problems. The bladder does play an important role. It has a very unique property that almost no other organ in the body has, which is compliance, which is this ability to hold and hold and hold without pushing urine up towards the kidney or pushing urine down to the urethra. And once you resect some of that mucosa or the tumor within the bladder, patients can lose compliance. BCG and other treatments further lose compliance.

So in patients who have urinary leakage or any concern for upper tract damage, radiating their bladder is really not a good option at all. It’s something we need to move with great caution. One of my roles as a reconstructive urologist nowadays has been to perform what’s called urodynamics testing and other testing for patients who are going to be preserving their bladder, to make sure the bladder is healthy enough to actually preserve because not only are we dealing with cancer, we are also dealing with function.

So while it is very exciting and cancer-free survival and stuff like that is promising, I think people just need to think very carefully about the function of the bladder as well.

Patricia Rios:

Thank you. And thank you for addressing the bladder preservation as a emerging sort of theme in the space. There is a question about the role that … In this case, neobladder and its role in sexual intercourse, Dr. Ajay, I don’t know if you have some information to share and then I also welcome our patient advocates, anything to add that has been identified as a priority by our patients. Also, how do they have the conversation with their surgeon as they’re also having conversations about the diversion and the importance this is for them?

Dr. Divya Ajay:

Yeah, this is a very important conversation and we have asked patients over and over again and they feel like they were not adequately maybe counseled on this. More women than men, but this is definitely something that needs to be addressed. In men, it is all about what kind of erectile function you come in with and how much of the nerve sparing technique can be performed based on the cancer. Like Denver was saying, if you have cancer in the prostate as well and the prostate needs to be taken with wide margins, then the nerves going towards the penis are not going to be able to be spared as well in which your natural erections are not going to be that great.

That said, there are medications like Viagra, Cialis, Levitra. There’s injection therapy that men can give themselves. And then of course, there are penile prosthesis. Like a breast implant, you can actually get an implant inside the penis that you can give yourself an erection.

In women, while the nerve sparing is important, a lot of it for intimate intercourse is length of the vagina. And that goes back to what I was saying with organ sparing techniques. When the vagina and the uterus … The vagina length is essentially spared, you could just go back to having intercourse just like you were. My colleague, Bernie Bochner, who’s one of our big cystectomist here, did a study on quality of life in patients with urinary diversions. We found the patients with … Female patients with neobladders had the fastest recovery, as far as sexual health was concerned among the different groups because they by far had more vaginal length and more sparing of the organs.

That said, even if you have a short vagina, you can start using dilators and you can start using vaginal estrogen and other techniques to help the vagina be able to have intercourse. The clitoris is generally spared if there’s a nerve sparing technique, but that is again, a conversation to have. Like, “Can I have a nerve sparing technique? Where is my cancer? How is this resection going to be done?” Those are things we need to ask upfront.

Patricia Rios:

Those are excellent points. And because it’s so important, that will be a topic at our Patient Summit in August. If you are not able to join us, we will be recording. So thank you. One last question before we do closing thoughts. And the last question … I mean, I think Lydia kinda touched on this, but Dr. Ajay, I would love to hear your thoughts on, how do patients evaluate if a surgeon is skilled enough to deliver optimal results and what does that mean for the specific diversion? What tips would you give patients as they are looking to see who and where? So any thoughts you can share with us would be super valuable.

Dr. Divya Ajay:

Yeah, this is a very tricky thing in healthcare. My son is getting ear tubes and I don’t know how to evaluate who is good and who does how many and how good they are at that. So I think I agree with everything has been said so far, is go to the Survivor 2 Survivor, ask other people who they used. Look at BCAN’s website, look at the big urology conferences, who are the big academic urologists? In general, I will say if you’re having an internal diversion that is in general more commonly done in big academic centers. And if you’re going to a private practice or … that’s generally, they can be extremely skilled, but the internal diversions require a bigger team and that sort of big team is generally more available in big cities, big academic centers.

So take that and then think about, who are the people who are speaking at conferences about these things? Who are the people who are writing papers and publishing in this area and who are the people who are getting good feedback from other patients? As far as what their skill level is and what the individual patient outcomes are, that’s actually very hard to find. That information is hard to find.

Patricia Rios:

But those are very practical tips, so we greatly appreciate that, Dr. Ajay. We are way over time, so I am grateful to all of you and our listeners for staying with us for this much needed conversation. What I would like to do is I would like to ask our panelists today to share some closing thoughts. And so what would be the takeaway that you would like patients to remember as they listen to this webinar? And what we can do is start with … Let’s see, Denver, Lydia, Jane, and we’ll close with you, Dr. Ajay, if that’s okay.

Denver Mossing:

I think that all of us would say that our diversion is wonderful. We’re glad we have it and we are alive and kicking. I tell people all the time, the Indiana pouch is the best thing there is and I’m sure that everybody says that about their diversion. That being said, the importance of having a great doctor, which I did and knowing what they’re doing is huge and I’m so glad I found Dr. Pohar when I did. But life goes on and life is very good. No limitations whatsoever in what I do and it’s wonderful.

And I would recommend if you’re going to make the decision, make the one that’s right for you, what feels best. This tool that they’ve come up with is wonderful and thank you to BCAN for being there for everybody. And Patricia and Allison, thank you for everything you guys have done.

Patricia Rios:

Thank you, Denver. Lydia.

Lydia Saravis:

Wow. So much covered today. I want to thank Dr. Ajay for covering everything so adeptly and for Denver and Jane as well. I feel like I dodged a bullet. I feel like the luckiest person. Yes, I had bladder cancer, but yes, I had access to this amazing surgery and I had a really good outcome. Life goes on. Life is good. I’m not limited in any way. It is a very tricky decision to make. I know I struggled myself quite a bit.

I tell people who are trying to figure this out, ask your surgeon, “How many of these surgeries have you done? How do your patients do, especially for women?” The feedback I’ve gotten is that most doctors are pretty honest with their answers. I just say ask questions. Don’t hesitate to get the answers you need, so that you’re comfortable with your choice, but there is good life after diversion surgery, definitely.

Patricia Rios:

Thank you, Lydia. And Jane, your mics on mute, but we’re ready for you.

Jane Theoharides:

I’d say talk to as many people as you can that have the different diversions. Do your research and really figure out what matters to you because you’re the one that’s going to live with it. Talk to your spouse. And I think the document that Dr. Ajay developed is wonderful. Sandy sent it to me and I read it. I’ve read it three or four times. I’ve passed it on to a bunch of people and even being six years, just about six years out, it was valuable to me to read it. It reinforced the decision that I made. That I made the best decision for me. And thank you everyone for today. It was great.

Dr. Divya Ajay:

Yeah. Thank you so much again, Patricia and Allison. It was so nice to meet Denver, see Lydia again and meet Jane and Zoe. It’s nice to interact with all of you and hear live that you’re doing so well and thriving. We see patients less frequently as they go out and we see patients more frequently immediately after surgery. And sometimes when people are struggling, it’s nice to know that a few years down the line they’re going to be thriving as you are.

The next step with our project, which I’m so excited about is to take this and make it into an interactive AI tool, where essentially you can interact with this information slightly differently because the feedback we’re getting is people are really not into downloading and reading bunches of paper and they want little TikTok videos or little short pieces of information. I’m really excited about that project, where … Dr. Bochner is really involved with that and we’re trying to develop these AI avatars that can talk to you and provide you with good information because there’s a lot of bad information out there too.

So stick with BCAN, stick with these good places that give you proper information. And we need to keep collecting data. We need to keep thinking about outcomes. We need to keep asking the difficult questions. And I like that all of you are so involved and interested in doing that and I would love to keep doing that with you.

Patricia Rios:

That was wonderful. Thank you, Dr. Ajay. Thank you, Denver, Jane, Lydia for joining us today. Dr. Ajay, a huge thanks to you and to the team for developing such a very useful tool. I know that will be the gift that keeps on giving, so we will be making sure that every patient that contacts us, especially with our S2S program, gets a copy and is able to use that to help them with their decision. And to those of you who are listening today, we hope you found the webinar useful, know that we are here to support you and there’s resources. We’re looking forward to what’s to come, 2.0 of the tool and how we can continue to use that.