Transcript: What to Expect with a Radical Cystectomy, Part 1

July 22, 2024

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Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for by and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it BCAN, producers of this podcast. This is part one of our three-part conversation.

I’m pleased to welcome today’s guest, Dr. Dr. Sia Daneshmand. Dr. Daneshmand is currently Professor of Urology and Medicine in the oncology space with clinical scholar designation and serves as director of urologic oncology, as well as the urologic oncology SUO Fellowship director at the University of Southern California USC in Los Angeles. His main clinical interests include bladder cancer, testicular cancer, and advanced kidney cancer. His main research interests focus on the use of pathways to improve outcomes following radical cystectomy, use of serum and molecular markers and new technologies in the diagnosis and management of bladder, and as well as functional outcomes following orthotopic urinary diversion.

He serves on the AUA Guidelines Panel for non-muscle invasive bladder cancer, and as chair of the bladder section of the SUO Clinical Trials Consortium. He’s on the scientific steering committee of several bladder cancer clinical trials and has led over a dozen clinical trials in bladder cancer. Dr. Daneshmand has been designated one of America’s top cancer doctors for the past 13 consecutive years. He was recently appointed as the chair of the SWOG Local Bladder Committee. He has presented over 500 abstracts at scientific meetings and has authored or co-authored over 400 peer reviewed articles, reviews, and book chapters. And he is also a member of the BCAN Scientific Advisory Board.

Dr. Daneshmand, thanks for joining our podcast today.

Dr. Sia Daneshmand:

Thanks, Rick. It’s a pleasure to be here.

Rick Bangs:

All right, so you and I both know that this thing called radical cystectomy is a major surgery, which significantly impacts patients and involves more than just the bladder. Before we start, what can patients expect from the surgery? And can you remind our listeners what this surgery involves?

Dr. Sia Daneshmand:

Sure, easy. I just had these discussions about an hour ago with two new patients.

It is a major surgery, Rick. You know. You went through it. It is a life-altering surgery, but also lifesaving surgery. I remind patients this is not something you’re doing electively just to improve your quality of life, but also the quantity. It’s meant to be a curative procedure and hopefully a one and done, although we do use systemic therapies and chemotherapy and others such therapies before or after to improve outcomes.

Yeah, what to expect before and after surgery? There’s not a whole lot before other than this new concept of pre-habilitation. We’re trying to get you ready for a big surgery, so eating healthy and trying to exercise as much as possible. And in many patients trying to lose some weight prior to surgery, healthy weight. Making sure you’re staying active. I tell them, “Imagine you’re going to be running a marathon. What do you do? You’re going to get ready for it.”

And then after surgery, I think there’s a lot of potential for ups and downs for the patient, including things like infections and fevers and fluid coming out of different places that is not supposed to. This is all new to the patient. For us, obviously we see this all the time. But for the patient it can be a very distressing situation and it’s all new to them. They’ve never seen anything like it if they haven’t had a family member go through anything like that. It is a bit harrowing at first, but I remind them that, look, you’ll get through this. Whatever complications arise, we can manage it. We can get you back on track. Hopefully in six to 12 weeks you’ll be back to relative normal, your new normal, depending on what type of urinary diversion you have.

Rick Bangs:

Sure, sure.

Let’s go through it in a little more detail, and we’ll walk through the before and then the hospital part and then the after. If I’ve just been diagnosed, I’ve talked to you, you’ve told me I have bladder cancer and I’ve actually chosen my diversion, what would be the first step? I’m assuming for many it’s going to be chemo or some clinical trial of some kind.

Dr. Sia Daneshmand:

Right. Yeah, if you have a muscle invasive bladder cancer and you’ve chosen surgery as your option rather than chemoradiation, yes, we do use chemotherapy before surgery to optimize outcomes.

The reason for that I tell them is because once the tumor cells have access to the bloodstream and the lymphatic system within the bladder, and that happens when you have muscle invasive disease, then the tumor cells may be circulating around the body. The chemotherapy is meant to address those cancer cells, potentially lymph nodes, before we get to the source of the cancer itself, the bladder. Oftentimes yes, it’s chemotherapy, and/or some clinical trials where immunotherapies are being tested in a prospective fashion to see if we can improve outcomes.

That process takes about two to three months to go through that treatment first, and they come to us second time after that. They’re seeing the medical oncologist at that point, getting the therapies. They come to us with new scans and another discussion. Because now it’s been a few months to talk about the surgery in a little bit more detail and go through the urinary diversion options, how we’re going to divert the urine and build urinary reconstruction for their bladder removal.

Rick Bangs:

I’m assuming during this window where you’re preparing me for the surgery I’m going to have a number of clinic visits, so roughly how many clinic visits would I have for both the treatment, which may be chemo or maybe it’s immunotherapy? For those purposes as well as other purposes, how many times am I going to be at the clinic?

Dr. Sia Daneshmand:

Yeah, this is labor-intensive. Good question.

It’s a lot of visits. You have your initial consultation with the urologist, you’ve already had a biopsy from a TURBT. You’ve had your post biopsy, where we tell you the results and lay out the plan of what we’re going to do. Then, we probably refer you to a medical oncologist. They’ll have a consultation there. There’ll be some undergoing chemotherapy, there’ll be some chemo teaching, that’s done. That’s another visit.

And then you actually get started with the chemotherapy. Now, the typical chemotherapy regimen is gemcitabine and cisplatin. They’re two drugs that are given intravenously. They’re typically given on day one and day eight of a 21-day cycle, so you’re actually getting the drugs once a week. And then the day 15 would be a break. The actual chemo visits are once a week for several hours at a chair. These are IV infusions and you get some hydration with IV fluids. Once a week for the three-month duration, typically we treat patients with four cycles of chemotherapy.

And then you come back. We get another visit for the CT scan for labs, and you come back to see us. We’re talking a good 15 to 20 visits in the first few months leading up to the surgery.

Rick Bangs:

What about a stoma nurse? Would I be meeting with a stoma nurse generally speaking? Is that common?

Dr. Sia Daneshmand:

Absolutely. Yeah, they’re highly invaluable to our process. These are nurses who specialize in all forms of urinary diversion. They talk to you about the different forms, the neobladder versus a continent cutaneous diversion, or Indiana pouch. We’ll talk about those a little bit later, I think, and/or a stoma. What does it mean to have a stoma or a urinary bag on the outside, and how does it collect?

Patients have lots of questions regarding how do I manage this urinary reconstruction that you’re going to do, so the nurses are very helpful in helping us to discuss these with the patients and actually show them both pictures and the devices themselves. What catheter do I use? What bag do I have? It’s very, very helpful to meet with an enterostomal therapy nurse prior to surgery.

I also have them meet with a nutritionist. There’s lots of questions about what can I eat before surgery or after surgery, and so we go through. Nutrition is very important both before but particularly after surgery to make sure you’re getting the caloric needs that you require to heal from this big surgery. If there’s weight issues, then we recommend healthy weight loss during the time while we’re waiting for surgery.

Smoking cessation is the other one. If a lot of the bladder cancer patients are smokers and so they still haven’t quite quit smoking, there’s smoking cessation discussions.

There’s a lot that goes into it. I also have them, if they’re having a neobladder, try to meet with our pelvic floor physical therapist prior to surgery to get an idea of what kind of exercises they’re going to be doing afterwards, like the pelvic floor exercises, often known as Kegel exercises, to regain their strength for their continence or their urinary control.

Rick Bangs:

What about practice sessions? In some cases I hear about patients practicing wearing a bag. I’ve heard some institutions have patients practice self-catheterizing if they’re going to get a neobladder. How typical of those kinds of things?

Dr. Sia Daneshmand:

That’s highly institution dependent. I think wearing a bag if you’re having an ileal conduit is a very good idea. It really gives you a sense of what’s going to happen. It really depends on the patient whether they want to go through that.

Honestly, I don’t have them catheterized before. I think it’s a little bit scary to patients, and also it’s not the same feeling. Because when you have your bladder and prostate for men in place and your catheterizing is a much different experience than when the bladder’s out and that there’s no prostate in place.

For women however, if they’re having neobladders, I think it is a good idea. Because up to a third of the patients, about 25% of 30% of patients, are unable to completely empty their neobladder, and so they do need to do self-catheterizations. I think it’s not a bad idea for women to do that ahead of time to see if I’m part of that 25 to 30%, how is that going to work? And so showing them this is how it’s done. Use it in and out catheter to empty their bladder.

Rick Bangs:

Okay, and what about pre-habilitation? As opposed to rehabilitation, pre-habilitation. Physical therapy, occupational therapy, any sexual function pre-habilitation. What’s the norm around those?

Dr. Sia Daneshmand:

Yeah, so it’s a hot area right now. Over the past several years, we’ve been really looking at trying to optimize the patient outcomes, and one of it is this idea of pre-hab.

Now, the problem is we can’t really undo years of unhealthy living in a one to two-month period prior to surgery. It’s difficult to make substantial changes to your overall health in a short period. However, any little bit helps. If you’re overweight, losing 10 to 15 pounds prior to surgery is going to help. Pre-habilitation in the form of exercise definitely helps with recovery. We do recommend it, and there are some specific clinical trials ongoing right now to see to what degree does this help.

But there’s lots of different activities going on in terms of apps and reminders and physical therapists and people who can meet. For the motivated patient, I would say absolutely. Do everything you can to make yourself as healthy as possible going into this surgery. Your recovery will be easier, and certainly hopefully you’ll come out stronger and your continence will be better.

We did do a small study, Rick, a few years back, where we looked at patients who saw our pelvic floor physical therapies before and after and saw that their return to continence was faster if they had seen the pelvic floor physical therapist. It was a small study, but we perhaps should revisit that and make it a bigger study to show that these things actually do matter.

You mentioned sexual function. A very important part of the discussion as well. That’s done at consultation as well. For men, we have a numerical score value we have just because it’s a little bit more objective with erections and erectile function. We discuss what’s going to happen afterwards, whether we’re going to do a nerve sparing, operation sparing or saving those nerves that control erectile function afterwards and what penile rehabilitation looks like. That means the use of oral medications such as Viagra, Cialis, or penile vacuum erection devices or injection therapy, and ultimately possibly a penile prosthesis if nothing is working. We get into a lot of detail.

With women, certainly a lot more interest and desire for female sexual function preservation as well. That’s coming to the conversation as well. There are newer techniques with our surgeries. We’re doing female organ preservation. The traditional surgery for bladder cancer in women involves removing the bladder, the uterus, tubes and ovaries, and part of the vagina because the bladder sits on top of the vagina. We used to routinely remove that part of it thinking we want to make sure we don’t leave any cancer behind.

But nowadays, we’re being a little bit more selective. Not everyone needs their uterus and tubes and ovaries removed. In fact, very women need their ovaries removed. Certainly we can preserve those parts that don’t need to be removed and perhaps improve functional outcomes with neobladders. We’re doing that. We’re actively researching this. We’re looking at the functional outcomes in women are undergoing orthotopic neobladder reconstruction showing that when you preserve those organs, the continence outcomes are better.

Rick Bangs:

Okay, so a lot going on and a lot of improvement over the last few years. Really-

Dr. Sia Daneshmand:

Yeah, you mentioned the 2006 model and we’re in 2024, Rick. We got to make some improvements.

Rick Bangs:

Yeah, yeah, no, really nice improvements.

Okay, let’s go back to nutrition for just a second. After my treatment, is there anything… I heard you talk about weight and then potentially managing weight, and we all know that there’s a very short time window. But are there any changes I should make to my diet? Is the nutritionist likely to recommend any changes to my diet between end of treatment and my surgery?

Dr. Sia Daneshmand:

Typically, not a whole lot. It’s going to be more about calorie management, and it’s obviously individualized. We’re not going to be prescribing a particular diet that’s good for cancer care or good for surgery, but rather, oh, I see you’re taking a lot of carbohydrates. Maybe you can cut down on this and have this instead just to be able to lose that weight. It’s a little bit more about weight management preoperatively.

Postoperatively, it’s almost quite the opposite because everyone’s losing their appetite and not taking enough calories. And so we would be recommending high protein, small volume, more frequent meals. The nutritionist goes over what’s easily digestible after surgery versus not. We don’t want to be hitting you with large Cobb salads after surgery.

Rick Bangs:

Yeah, thank you very much.

Dr. Sia Daneshmand:

Big flank steaks. Concentrating on the high protein stuff like eggs and some dairy products if you can tolerate it and things like that.

But they’re really valuable resource for us to help patients help in the recovery process.

Rick Bangs:

Yeah, I think that’s phenomenal.

All right, so I’m in the home stretch. My surgery is in a very few short days, and I distinctly remember… Again, I have the 2006 model. I hear the 2024 model has a lot of improvements. You’ve already mentioned a number of them. I remember doing something that was very similar to the colonoscopy I’d had before, so I remember doing a liquid diet and then I remember some laxatives and there was a full purging. You mentioned nutritional drinks.

I think there’s something called ERAS, and it’s not Taylor Swift. E-R-A-S. Okay, so can you talk a little bit about that and how it’s changed the dynamic?

Dr. Sia Daneshmand:

Absolutely, yeah. One of our favorite topics here. We were one of the pioneers in the beginning of these ERAS pathways for bladder cancer. ERAS stands for enhanced recovery after surgery. It’s not just for urology, but it’s for all surgeries. How can we make these outcomes better? There are a number of things, so it’s all evidence-based, basically.

By the way, we joke about the 2006 model, but the surgery itself, the reconstructed bladder, is almost identical. We’ve made very little changes to the surgery because that part of it was, I think, perfected in the late ’90s and 2000s. We’ve made very, very few changes to how we do the surgery, but it’s what we do around the surgery that’s important. Rest assured you’ve got a good model and it’s going to last you forever.

Rick Bangs:

Thank you. Thank you.

Dr. Sia Daneshmand:

Yeah, these ERAS protocols have really changed the way we manage. Like you said, we used to do these bowel preps thinking the bowel has to be clean. Makes perfect sense, right? When we open the bowel, we don’t want all this stuff in it from digested food and stuff. But it turns out it’s completely counterintuitive. That actually cleaning out the bowels, you’re getting rid of good bacteria as well. You are becoming dehydrated from the diarrhea that happens, and you’re coming into surgery a little bit malnutrition. We are doing exactly the opposite right now, which is no bowel prep, eat whatever you want all the way up to surgery, all the way up to six hours before surgery. By the way, we’re going to give you a nutritional drink right before. We’re going to carbohydrate load you.

Because what happens after surgery and any stress on the body is the body uses up glucose very, very quickly. The liver can only store so much, and so we want to load up the glucose in your body by doing these nutritional drinks. There’s one called Impact that we use that’s given five days prior to surgery and a few days after. In fact, we had a clinical trial that you’re well aware of, Rick, to see whether we can improve outcomes even further by adding a component called L-arginine in one of these drinks. One of our colleagues in nutrition in Kansas has run a wonderful clinical trial comparing two different drinks prior to surgery, and we’ll see what those results show.

But other studies have shown that these drinks make a difference pre-surgery to carbohydrate load the patient. Because postop, like I said, they’re using up their glycogen and glucose storage very quickly. And so we want to load the body up with that.

And then postoperatively, I bet you were not eating for at least a day or two and-

Rick Bangs:

More than that.

Dr. Sia Daneshmand:

Yeah, very gingerly waiting for the patient’s bowels to move and making sure the bowel anastomosis, the connection we make between the intestines, heal. But again, we can’t complete departure. ERAS means enhanced recovery, so we’re feeding the patients the next day. In fact, we’re giving them liquids. That connection that we make, the bowel anastomosis we call it, we don’t need to wait for that to heal. It’s a stapled anastomosis. That thing is pretty tight, and it’s going to handle anything liquid going through it.

We start out with liquids the night of surgery, and believe it or not, patients get a regular diet with toast and jam and scrambled eggs on day one. Again, the idea is that we don’t want to be depriving the body of caloric intake in the first few days after surgery when the body’s trying to heal and is using up so many calories and nutritional needs. You get depleted very, very quickly. Especially in the elderly who are immunocompromised already, they don’t have a good nutrition, and so that’s the idea. They’re not eating a ton because your appetite is low after surgery, and that goes on for a while. But we try to optimize all those things.

Rick Bangs:

I think I remember being told that muscle gets depleted before fat, which is very disappointing to me.

Dr. Sia Daneshmand:

Exactly, yeah.

Rick Bangs:

I assume that’s true.

Dr. Sia Daneshmand:

That’s absolutely true. That’s why you see people who have surgery and you see them back later and like, oh my goodness, your temples are sinking in. That’s not fat in your temples, that’s your muscle. And so there’s a lot of muscle wasting that happens.

Exactly, so that’s why we get you up out from bed. We want you to be walking after surgery. We want you to be active because we want these muscles activated. We don’t want any atrophy going on.

Rick Bangs:

I remember being told 15 to 20 pounds was the norm for people back in my day, so how much weight would somebody lose today?

Dr. Sia Daneshmand:

No, it’s still similar, Rick. Because the appetite is down, so patients may be healing a little bit faster but still the appetite is down. We see the same 10 to 20 pound weight loss after surgery.

Now, in some patients, it’s a welcome weight loss. But I always tell them, “Look, yes, it might look good, but we want to lose the right calories.” Like you said, we don’t want to lose the protein and the muscle mass, so we want to be losing fat and not muscle. Eating those protein drinks afterwards, the Impact, the small volume meals. Those are super important.

Yeah, still happening. It’s because we’re messing with the intestines. We’re using a segment of the intestine to reconstruct the urinary tract. There’s physiological changes that occur in the body that lead to this decreased appetite, decrease oral intake, and things like that. Everything settles down around three months or so.

Rick Bangs:

That’s all the time we have today for part one of my fascinating conversation with Dr. Sia Daneshmand about radical cystectomy. We invite you to tune in and listen to parts two and three of this episode wherever you get your podcasts.

Speaker 1:

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