Managing Side Effects of Bladder Cancer Treatments Webinar

Many procedures and treatments for bladder cancer take place in the bladder. Sometimes they can lead to potential side effects. The transurethral resection of the bladder tumor (TURBT) is essential to understanding the grade and stage of your tumor. Some experience bleeding or burning with urination after a TURBT. Intravesical therapies put treatments directly into the bladder to kill tumors in the urothelial lining. BCG and/or chemotherapy could trigger irritation, bleeding,  flu like symptoms and other common side effects. Urologist Kristen Scarpato, MD, MPH, from Vanderbilt University Medical Center explains how TURBT and intravesical therapies work, and why they possibly create common side effects. Dr. Scarpato shares tips on how you and your doctor can manage those common side effects.  

With Dr. Kristen Scarpato

Year: 2023

Part 1: Different Types of Procedures and Treatments in the Bladder

Transcript (PDF)

Part 2: Managing Side Effects of Procedures and Treatments in the Bladder from a Medical Perspective

Transcript (PDF)

Part 3: Questions & Resources on Managing Side Effects of Procedures and Treatments in the Bladder

Transcript (PDF)

Full Transcript of Managing Side Effects of Procedures and Treatments in the Bladder

Stephanie Chisolm:

I’d like to thank everybody for joining us this evening. My name is Stephanie Chisolm and I’m the Director of Education and Advocacy at the Bladder Cancer Advocacy Network. We’re really delighted to have you here to participate in tonight’s program on managing the side effects and procedures and treatments that go along with bladder cancer.

Many procedures and treatments for bladder cancer take place inside the bladder and sometimes they can lead to some side effects and we sometimes call them adverse events because sometimes they can be pretty terrible and hard to deal with, but Dr. Scarpato is going to talk about that.

So whether you’ve experienced a transurethral resection of your bladder tumor, or a TURBT, or if you’ve had medication put into your bladder known as intravesical therapy, those kinds of things can cause issues within your bladder and your urethra and many other areas. And so Dr. Scarpato is here. She does a lot of treatments for bladder cancer in the Vanderbilt area in Tennessee, and I’m sure she’s doing things for patients that come in elsewhere. Dr. Scarpato is an associate professor of urology and the program director for the urology residency program. So she does a lot of training for new doctors as they go through. And so Dr. Scarpato is going to explain how TURBTs and intravesical therapies work and why they can sometimes create side effects and what you can do to help mitigate any problems that you have with any of the treatments that you have for bladder cancer. So I’m going to turn it over to Dr. Scarpato. Thank you so much for joining us this evening. If you want to share your screen, go right ahead and I’m going to go on mute and turn off my camera.

Dr. Kristen Scarpato:

Great. Thank you Stephanie. I appreciate that introduction and I just want to say what a pleasure it is to be here today. I am a longtime member, supporter, collaborator with the Bladder Cancer Advocacy Network and it’s really special to be here tonight to talk about managing the effects of treatment for bladder cancer. As Stephanie said, there certainly are a number of different impacts on the bladder and the urethra and honestly the entire body, the pelvis systemically, that bladder cancer treatments may cause. And part of the journey for bladder cancer patients and their families is managing and mitigating these side effects of the treatments. Fortunately, many of the treatments are beneficial and cure the cancer, keep the cancer at bay, prevent recurrence and progression, but unfortunately it comes at the cost of some bladder symptoms or systemic symptoms that we need to work together to mitigate.

Dr. Kristen Scarpato:

So over the course of the next hour or so, we’re going to talk about the treatments for bladder cancer just briefly to set the stage for the discussion and really focus primarily on non-muscle invasive bladder cancer, the bladder cancer that requires frequent looks in the bladder, bladder scrapings, or TURBTs, and intravesical therapies. And then we’ll talk about briefly just muscle invasive bladder cancer as well. So not only are we going to talk about the physical side effects associated with bladder cancer management, but also there are emotional and psychological side effects that warrant mention and consideration of the implications of the therapy on caregivers, an important part of the bladder cancer journey. We’ll also go through some of the questions that were submitted ahead and any that you want to ask during the course of the webinar. And then I will highlight a couple of useful resources.

So as most of you are well familiar with the bladder is an organ that sits deep down in the pelvis. It stores the urine that drains down from the kidneys through the ureters and then ultimately is evacuated from the body through the urethra. There are several structures in the pelvis that are closely associated with the bladder that can experience symptoms too, like the prostate, in some cases the vagina, and really anywhere along the urinary tract can be impacted by bladder cancer. And so having an understanding of that anatomy can be important so you can understand the management and some of the symptoms or side effects you may experience with treatment.

Dr. Kristen Scarpato:

So before we talk about the side effects, we’re going to just briefly talk about the treatments.

Dr. Kristen Scarpato:

Most patients with bladder cancer are very familiar with a cystoscopy, which is a look in the bladder. That often is the first step prior to TURBT or transurethral resection of a bladder tumor. That can be something that happens once depending on the pathology report. It can be something that happens multiple times. And as you may imagine, each intervention, each invasive investigation of the bladder, whether it’s cystoscopy or TURBT, can lead to progressive symptoms over time. Intravesical therapy, that’s into the bladder therapies, either immunotherapy like BCG, which we’ll talk about, or intravesical chemotherapies that are effective but can certainly cause symptoms. For patients who don’t respond to intravesical therapies but have non-muscle invasive bladder cancer that keeps recurring and is at high risk for spread, sometimes we do what’s called a radical cystectomy and take out the bladder. That is one of the mainstays of treatment for patients who have muscle invasive bladder cancer.

And I didn’t put it here on this slide, but another consideration and something to discuss is that we’re now seeing more what’s called bladder preservation therapy for patients who have muscle invasive disease and that is keeping the bladder, doing a maximal bladder scraping or TURBT, and then offering chemotherapy systemically and radiation therapy to the bladder. As you might imagine, the surgery to scrape out the bladder tumor, the chemotherapy, and its systemic effects and then the impact of radiation can certainly be important for patients. And then the systemic therapies. So when we’re talking about non-muscle invasive bladder cancer, the primary systemic therapy that we refer to is pembrolizumab or immunotherapy for patients who have a type of disease called CIS or high grade disease that doesn’t respond to BCG therapy. So it’s not always in this circular fashion like I’ve set it up here, but oftentimes it is, and each of these treatments are important and can impact a patient’s symptoms.

You see the image here on the left shows the different stages of bladder cancer. What’s not shown or was maybe cut off here above TA is CIS, carcinoma in situ, that is cancer that is sitting in the lining of the bladder. It’s a high risk cancer that’s noninvasive but can still unfortunately progress and spread. Then there’s TA tumors which sit in the lining. T1, which grow deeper into the lining but not into the muscle. And then anything above T1 is muscle invasive or locally advanced. And so that’s T2 cancer, muscle invasive or above, and that requires more invasive therapies.

Dr. Kristen Scarpato:

Cystoscopy, there are two main types of cystoscopy, often flexible cystoscopy is what is performed in the office. So that’s when you come in as a patient for investigation either of gross hematuria or of known bladder cancer, and your nursing staff will place numbing jelly or lidocaine jelly into the urethra and pass this small scope into the urethra and bladder. Now I say small scope because it’s a relatively narrow caliber, but if it’s your urethra, it doesn’t always feel like a small scope and certainly can cause symptoms that we will talk about, first what they are and second of all, how to manage them. And then a rigid cystoscopy, and that’s almost never done in the office because as you can tell just from looking at this scope, it is a bigger caliber and it’s obviously stiff and would be quite uncomfortable to pass into the urethra to take a look in the bladder in an office setting. So those are the two main types of cystoscopy.

Dr. Kristen Scarpato:

Transurethral resection, or TURBT, that uses a resectoscope. So like the cystoscope, it is a rigid structure, but actually it’s bigger. It’s a bigger caliber scope and that definitely requires general anesthesia and that scope needs to be bigger because it has to accommodate our instruments to appropriately scrape and cauterize any areas of bladder cancer that we see. Now when we’re talking about TURBTs, there are a number of different ways to do the procedure. And so patients and families may hear things like monopolar, TURBT or bipolar TURBT. What I want to impart to you is that those different modalities don’t necessarily correlate with any difference in symptoms for patients, but they are both effective in terms of diagnosing and treating bladder cancer. The scope sizes for both of those are the same. The fluid that is used during the procedure is a little bit different, but that does not impact the side effects associated with a TURBT.

And then many of you may be familiar with white light versus blue light, and while those don’t necessarily correlate with a difference in symptoms for patients, the blue lights importantly requires that a catheter be placed in advance, typically in an awake patient prior to the procedure. And so blue light cystoscopy can be performed, excuse me, either in the clinic with a flexible scope or in the OR with the rigid scope, but typically patients are thoroughly counseled in advance that you need to come in before you would normally for your TURBT so that we can place a catheter in the bladder, put in a small volume of what’s called Cysview, and then allow that to dwell so that when we go back to the OR for the bladder scraping when we shine the blue lights, we’re able to more readily appreciate certain types of cancer which may translate into a more complete resection or identifying cancer that may not have been seen with the white light. So those are some terms that you may hear associated with TURBT.

Dr. Kristen Scarpato:

Intravesical therapies. This is not an exhaustive list, but it is some of the more common therapies that we use. And I just want to make a distinction about what some of the different terms you may hear related to the intravesical therapies are. There is immediate intravesical therapy and that’s also known as perioperative chemotherapy, and that is something that’s given typically on the day of surgery when you have your TURBT. When you’re still asleep, the urologist will place a catheter in the bladder and then instill medicine, in this case chemotherapy into the bladder one time. And we know that that can decrease the recurrence compared to patients who don’t have that. And that is more commonly done. We have great data to have that therapy for patients who have low grade bladder cancers and those two agents typically are gemcitabine, which is what we most commonly use and mitomycin, importantly not BCG.

Many of you are familiar with BCG. That is not something that we can give fresh post-op in a patient who has just had a bladder scraping because of the risks of immunotherapy in that setting. So there’s immediate, and then there’s what’s called adjuvant intravesical therapy, and that can be given in a number of different ways. If a patient’s going to have adjuvant chemotherapy, and the bladder, adjuvant therapy, it’s always first given as induction, and so many of you may be familiar with that. It is six weeks typically after your surgery and it’s once a week for six consecutive weeks. And then your urologist will look in your bladder after that to see your response. And depending on your risk stratification, then you may go on to get maintenance therapy, and that’s instead of six weeks in a row, it’s once weekly for three weeks, and that can be given out to three years.

And what I have listed here, the three, six, 12, 18 months, et cetera, that is the standard regimen that we use for maintenance therapy for BCG patients. But as we’re using more gemcitabine and other chemotherapeutic agents, oftentimes you’ll see that once a month for maintenance out for several months. So these are the commonly used adjuvant medications.

Dr. Kristen Scarpato:

For patients who are at high risk with non-muscle invasive bladder cancer or have failed intravesical therapy, then radical cystectomy is performed and that’s when we removed the bladder and the pelvic lymph nodes. And in a male we also removed the prostate and seminal vesicles. In females, historically, we always removed the female pelvic organs as well, although less commonly now.

We’re more commonly doing female pelvic organ sparing surgeries to improve quality of life afterwards, particularly in terms of sexual function. So once those organs come out, then we need a place for the urine to go. And there are many different types of diversions that are available. And I know recently the Bladder Cancer Advocacy Network just had a great webinar on types of urinary diversions, and so if you didn’t attend that one, you might want to check that out. But there are continent and incontinent diversions, so ones that are freely draining urine at all times into a bag and those that you may urinate relatively normally or pass a catheter when you want to empty out the diversion.

Dr. Kristen Scarpato:

Briefly, I’ll just mention bladder preservation and trimodal therapy. This is not for non-muscle invasive. This is for patients who have muscle invasive disease and it requires three things. Trimodal therapy, so removing all of the bladder tumor via TURBT or as much as possible, systemic chemotherapy, and then radiation therapy to the bladder and pelvis.

Dr. Kristen Scarpato:

What are the systemic therapies? Pembrolizumab is the only systemic therapy that we are currently using with any regularity for non-muscle invasive patients, and that’s for patients who don’t respond to BCG. And then the other therapies you see here are for patients who have muscle invasive bladder cancer and can be given before their surgery or trimodal therapy, or in the case of surgery, given after surgery. And so these certainly can have an impact on symptoms and the need for mitigation or management of these treatment side effects.

Dr. Kristen Scarpato:

So now let’s get into the side effects and management.

Dr. Kristen Scarpato:

Cystoscopy. It’s not just a cystoscopy and hopefully no one is ever saying, “Oh, it’s just a cystoscopy.” It certainly is an invasive and it certainly is uncomfortable and really can cause some significant side effects for some patients. This is why fortunately I think we’re seeing so much exploration when it comes to alternatives to cystoscopy, whether it’s urine based markers or imaging tests that can cut back on the number of invasive cystoscopic procedures that we need to do for patients who have bladder cancer and certainly making sure that we’re not unnecessarily performing cystoscopy in the evaluation of patients who don’t have that diagnosis yet. Most commonly, and this really is with any intravesical management of bladder cancer, whether it’s cystoscopy or catheterization or medications into the bladder, most commonly we’re seeing things like mild bleeding. So when the scope comes out for a couple of days, patients may notice blood in their urine. Shouldn’t be significant, but sometimes it can be significant and come along with clots and certainly we want to know about that.

Pain, so passing even the flexible scope into a urethra can irritate that very delicate lining of the urethra and the lining of the bladder, and that can come along with pain. And typically it’s short pain, so for a short amount of time, but not always. Sometimes patients experience pain for quite some time. Burning with urination. So as we’re gently scraping the lining of the urinary tract, when you are then going to empty your bladder and urine’s going to pass through the urethra, it can certainly burn. There’s a risk anytime we introduce any foreign body or foreign material into the body. Not only is your body saying, “What is this and why is this here,” but it introduces the risk of infection. And then over time, typically with the more procedures you have, but certainly anytime you have an invasive procedure, scar tissue can form and that scar tissue can make it challenging to urinate afterwards.

So how do we manage these side effects with cystoscopy, whether it’s a flexible cystoscopy or a rigid cystoscopy in the operating room? Well, first in terms of managing the associated bladder symptoms, your urologist or your healthcare provider may recommend what we call some easier things, some lifestyle modifications. We know that hydration, so maintaining a good fluid status can help flush out any blood associated with the procedure. And so drinking plenty of fluids after having a cystoscopy can be important. We know that there are irritants that tend unfortunately to be things that we really enjoy, like coffee, like spicy foods, like any caffeinated beverage or sugary beverage or alcohol, glass of wine. Those things can irritate the bladder, so if you’ve recently had a procedure avoiding those can make recovery from the procedure easier. Urinating at regular intervals, and we encourage you not to hold your urine if you’ve had a procedure. Try and go to the bathroom every two, three or four hours to again help flush that out and don’t let your bladder get overdistended, which can make it become more sensitive and irritated over time.

In addition to the numbing jelly that we put in, the lidocaine jelly, there are certain medications that we regularly use to help limit the side effects associated with cystoscopy. A common one is peridium, and this is also called AZO over the counter. It’s available, but also we can write prescriptions for it. And important to know that this is a medication that can turn your tears orange, your urine orange, sometimes your stool orange. And what it does is it numbs up the lining of the urinary tract and can really help get you beyond the symptoms of the first couple of days. It is not a medication to take long term, but in the short term it is highly effective. Ditropan or more commonly now we’re using something called Trospium, because there are fewer cognitive side effects, that can help with spasm.

So when your bladder’s saying, “Hey, there’s something here that I’m not familiar with or shouldn’t be here, I’m going to try and get rid of it, and the way I’m going to try and get rid of it is by spasming,” which can be this short burst of really intense pain, then using those medications can be beneficial. But I only recommend those if you’re having those symptoms because they can cause dry eyes, dry mouth, blurry vision and constipation. And then certainly if there’s any concern for infection, we give antibiotics and send a urine culture. Some patients qualify for antibiotics at the time of their procedure, and so we want to make sure we’re practicing good antibiotic stewardship. But if you’re a patient who’s at risk for infection and your institution should be able to determine that, then we’ll give you antibiotics at the time of your cystoscopy. Rarely just after cystoscopy would patients require additional surgical procedures to help manage side effects.

But sometimes in extreme cases, if there’s significant scar tissue, then dilation may be necessary to help open up any scar tissue or if there’s really significant bladder squeezing, sometimes we can inject things into the bladder wall like Botox to help quiet those symptoms.

Dr. Kristen Scarpato:

TURBT. And again, those same symptoms you’ll see on many of these slides, certainly associated with bleeding. So when we’re removing tissue, we do cauterize that area, but there’s a scab that’s in your bladder and that scab can pop off and cause bleeding or there might just be irritation from passing that scope back and forth from the bladder through the urethra in and out, and that can cause some bleeding, pain and burning with urination. Every time we perform a TURBT, you’re going to get a single dose of antibiotics to help limit a urinary tract infection. The risk of scar tissue goes up because the scope is bigger, the procedure is more invasive, so we pay attention to that.

Particular to TURBT is a risk of perforation. So what is that? That’s making a hole in your bladder. If you have a hole in your bladder, certainly we wouldn’t put any medicines into the bladder, intravesical therapies in that setting, because that would be very dangerous. You could reabsorb and have systemic serious side effects related to that, but often it’s managed with prolonged catheterization to allow your bladder to heal. So needing to wear a catheter for quite some time and that’s uncomfortable and your bladder can scar down from the insult of having a hole made in it. Very rarely do we need to actually make an incision on your belly to repair that hole. If it’s at the top and there’s urine that’s able to get into your abdomen, that can make you quite sick. And so sometimes we have to make an incision to repair that, but not the common or not the norm fortunately. And then I put constipation here because several of you had sent in questions about constipation.

When you have general anesthesia and you have narcotic pain medicine associated at least the time of the procedure and you’re not in your normal active routine as you’re recovering, you can be prone to constipation. Additionally, there’s what I like to call crosstalk between the bladder and the bowel. And so if your bladder is not feeling well, it has been subject to cancer treatments and surgeries, then it might not function as well. And so then your bowel may say, “Hey, I’m not going to function as well either.” And that’s the nerves and the communication between the two can say, “All right, we’re in this together.” And so we have to manage those side effects. So how do we do this? Again, lifestyle modification. So staying hydrated to help flush out any of the blood and irritation that has occurred from the TURBT, having healthy regular toileting habits and avoiding those irritants.

We see the same medications used in this space. And then the additional procedures are things like wearing a catheter, as I said, and sometimes bladder irrigation. So if you have significant bleeding with clots afterwards, and I hope this hasn’t happened to you, but it’s not uncommon where a patient after a TURBT has to come in and be admitted for what we call continuous bladder irrigation. So that’s when we put in a larger catheter that has three ports on it and two of them, one is responsible for flushing in fluids, the other is responsible for flushing out and draining those fluids, and that helps clear any of the blood and debris from the bladder. And then after some amount of time you’ll be able to turn that off, we’ll make sure the bleeding has stopped and then the catheter can come out prior to you going home.

But that is something that we do see and need to manage after TURBT for some patients.

Dr. Kristen Scarpato:

Now we’re going to spend a couple minutes here talking about intravesical therapies and there are two broad categories here. They are intravesical chemotherapy, and then immunotherapy. And while many of them have the same risks of bleeding, pain, burning with urination, there are differences in some other aspects of them because they work in different ways. And so when a patient is getting intravesical therapy, we start with again lifestyle modifications and making sure you’re maintaining healthy bladder habits. We’re utilizing many of those same medications including something I didn’t mention before, non-steroidal anti-inflammatory.

So that’s Advil, Aleve, medications that can limit the inflammation anywhere in your body including in your bladder. And if there’s signs of infection, antibiotics. And then things to limit ongoing inflammation may include interrupting therapy or reducing the dose of the therapy. And that’s particularly true with BCG. And as many of you know, there’s been a BCG shortage and we have been reducing the dose of BCG to one-half or one-third because of that. And there’s mixed data on how that may impact the side effects, but that is certainly something that works for some patients. Bladder irrigations. Bladder irrigations in this case are not the ones that I talked about before to get rid of clots, but we can actually create a mixture that can calm the lining of the bladder.

And so every institution I imagine is different, but here what we use is a combination of Marcaine, which is a narcotic or a numbing medicine, a steroid, Solu-Cortef, bicarbonate, which is something that will make the urine less acidic, and then heparin. So we can put that into the bladder and that can have a calming effect for patients who have significant irritation related to the intravesical therapies that we put in there. And that’s something that we use for patients who have benign disease with overactive bladder. You see Botox here on this slide. For patients who really have developed scar tissue and significant urgency and frequency and overactive bladder, we can put in Botox again just like we do for patients who have benign disease but have a hyperactive bladder. Pelvic floor physical therapy. I am so impressed and grateful for the colleagues we have in pelvic floor physical therapy.They can do wonders for patients who have pelvic pain and bladder irritation related to therapies. And so collaborating with them has been very helpful. And then sometimes you just need to change the treatment. Not every treatment is going to work or function or jive with every patient, and so we have to change it up, particularly if there are significant side effects.

Dr. Kristen Scarpato:

So this is really a technical slide here and I just want to highlight that these are some of the agents that we use, mitomycin, gemcitabine, doxorubicin, docetaxel and valrubicin are all medicines we can put directly into the bladder as monotherapy or one agent. And more recently we’ve been combining agents, for instance, gemcitabine and docetaxel. And all of these you see LUTS, that stands for Lower Urinary Tract Symptoms. All of these agents are going to cause that and cause pain and cause hematuria, but each of them have other much, much less common, rare side effects that can be associated with them as well. And so anytime you’re experiencing symptoms related to your therapy that give you pause, I hope that you feel comfortable and I hope that you’re able to reach out to your urologist and your care team and say, “Hey, I have this rash,” or, “Hey, I have noticed shortness of breath,” or, “My skin is really burning here,” and we can evaluate further and make sure that there are appropriate therapies for that.

Dr. Kristen Scarpato:

I think one of the most important things about intravesical therapy is managing expectations. And so I just wanted to show this short video to highlight what we give to our patients here that is not totally comprehensive, but it does introduce the process and possible side effects. Here we’re going to talk a little bit about BCG that can impact patients. Because whether you’re starting intravesical therapy or you’re taking a trip to someplace new or you’re learning a new anything, there are going to be questions and expectations are important. And understanding what may happen to you, knowing what to look out for, that can really impact the experience during your treatment. If you know you’re going to have burning or you know might see blood in your urine, you might be less alarmed, might experience less bother than if no one ever told you, “Oh gosh, you’re going to see blood in your urine,” or, “You might have constipation after your therapy.” And so thorough counseling of expectations is really important. I’m going to show this brief video.

Video Sound:

Really what we’re going to start with is talking about the process. So you’ll come into our clinic, we’ll have you leave a urine sample, you’ll go back to the waiting room. We need to check your urine to make sure you don’t have any signs of infection. Once we see that you don’t have a urinary tract infection, then we’ll mix your treatment. Once the treatment is mixed, we’ll get you back to your room and we’ll have you undressed from the waist down. Once you’re settled in the room, the nurse will come in and she will place the catheter into your bladder. We’ll drain your bladder completely so you won’t have any urine in your bladder. And then I’ll come in and I will put the treatment into your bladder. Then the catheter comes out and we’re all done. After your first treatment, we have you get cleaned up and have you sit for about 10 or 15 minutes just to make sure we don’t have any reactions that we’re not expecting. For the rest of your treatments, it’ll be the same process but you won’t have to wait for those 15 minutes.

Some things to tell us before we start your treatments or before we give your treatments, we need to know if you’re on any antibiotics for any reason, if you’re having any signs or symptoms of a urinary tract infection, fevers, chills, burning with urination, any of those things. We also need to know if you have any trouble ever holding your urine. Do you leak urine? Are you incontinent? Do you have to wear pads? Do you have to wear Depends? Those are all really important things for us to know before giving your treatment. After you get your treatment, like I said, “You’ll get cleaned up, you’ll be good to go.” You need to hold the treatment in your bladder for two hours. After two hours you can void, use the restroom. You need to put two cups of bleach into the toilet, let it sit for 15 minutes and then you can flush the toilet.

You’ll repeat that same process every time you use the restroom for the first eight hours after your treatment. This is important because we want to make sure we kill any of the treatment before Let’s say someone else comes to use the restroom. If we haven’t cleaned out or killed the treatment essentially, then that puts that next person at risk for getting a treatment that they don’t need. Some common side effects after your treatment that most people experience at some point along the way. Burning with urination, maybe you may even see a little blood in your urine. That’s all okay. Frequency, urgency, feeling like you have to run back and forth to the bathroom. A lot of patients will experience a low-grade flu-like symptoms. So a low-grade fever, maybe some fatigue, lethargy. This can last from the first 24 to 72 hours.  The best things that we can recommend for this, staying well hydrated and Tylenol and rest. And like I said, after those first 24 to 72 hours, people seem to do just fine.

Another very common side effect that we certainly need to know about is if you’re not able to hold the treatment for two hours. If you find that you’re only holding it for an hour or 45 minutes, important for you to tell us that because there are some tricks and things that we can do to help you to hold the treatment longer. Now, more severe side effects that either requires calling us or a trip to the emergency room. These things are rare, but of course you need to know. Something we call BCG sepsis where you’d get really sick, very high fevers, chills, lethargy, those things, happens in less than one of 1% of patients getting this treatment, but that means calling us and/or a trip to the emergency room.

Untreated urinary tract infections. Urinary tract infections are very common during the treatment. It’s not going to mess up your bladder cancer treatment, but we might need you to take a week off, treat the infection and then get back on tract. If a urinary tract infection goes untreated, people can get really sick really quick. And lastly, high fevers. So yes, a low-grade fever is normal, 101 and below all normal. 102 and above, that’s a high-grade fever and something we or the emergency room needs to know about. We hope that this helped to clarify some expectations as you start this process and we’ll take the best care possible of you while you’re undergoing these treatments.

Dr. Kristen Scarpato:

Okay, so we give that to all patients who are undergoing intravesical therapy here to clarify expectations and of course we have an in-depth conversation when you’re in the office beforehand. But it is challenging to remember everything. I think it’s a lot of new information, a lot of scary information. And having a resource that you can view multiple times and show to other people can be very helpful. A lot of questions about BCG. BCG really has been the standard of care and the best treatment option for patients who have high risk non-muscle invasive bladder cancer. BCG is inactive cow tuberculosis, essentially, it is immunotherapy, it’s not chemotherapy and it works by harnessing your body’s own immune system to fight off, recognize, prevent cancer recurrence, and in the case of BCG, progression. And while it works better than every other medication we’ve had to date, it can be challenging to tolerate and it has historically been associated with a lot of treatment related side effects.

So therefore a lot of questions about BCG. When we’re thinking about the side effects of BCG and how to manage them, the things that are important are the degree of symptoms and then the duration of symptoms. And you saw in that video some conversation about that. But generally there are three classes or three grades. Grade one is moderate symptoms. So this is either mild or moderate bothersome urinary symptoms, urgency, frequency, some mild hematuria and a low grade fever. And the time course here is less than 48 hours. So most patients who are getting BCG have this, they experience this. Some don’t and tolerate it just fine. Others have these symptoms. And what your doctor may do in this situation is to send a urine culture to rule out infection but then start some of those medicines that we talked about, anticholinergics or the peridium medicine, analgesics like Tylenol or like non-steroidal anti-inflammatories. And that’s the norm for most patients getting BCG experience this at some point during their therapy.

Dr. Kristen Scarpato:

A higher grade, so more severe symptoms that last longer can be also indicative of a urinary tract infection. And so we would check a urine culture but also because of the low risk of this progressing to other parts of the body, we investigate other parts of the body. So things like a chest X-ray may be ordered or liver function tests. How do we manage these more severe symptoms associated with BCG? This is when we can see dose reduction to one-half or one third and of course treating urinary tract infections and then pre-treating patients. And honestly, this is not something that I have seen much at all, but using one of the BCG drugs in advance of treatment to see if that improves tolerability, especially if the BCG is working.

Dr. Kristen Scarpato:

And then the most severe are these allergic reactions or immune reactions that require more significant therapy and hospitalization. And there is a very rare but significant possibility of what’s called BCG sepsis or BCG-osis and it occurs in about a half a percent of patients. But if there’s any indication that the patient is becoming systemically sick like that, then we stop BCG. The patient’s admitted to the ICU for ongoing care and we use these BCG drugs, the tuberculosis drugs to help mitigate, treat, prevent the infection from getting worse. Often in these patients we’ll use steroids to limit the side effects here.

Dr. Kristen Scarpato:

So in the last few slides here, I wanted to talk about side effects that you might not immediately think about. We’re so focused, we as physicians and sometimes patients and caregivers on the physical side effects that we’re not thinking about the emotional and psychological side effects which are real. And I would say particularly for bladder cancer patients, your families. This is really a special patient population and one that we, I would say fortunately get to spend a lot of time together and it’s a long-term relationship, but unfortunately, that’s because of the close surveillance and the amount of interventions that often bladder cancer patients need. And so managing the emotional and psychological side effects are really important.

Not only the initial diagnosis of, “Hey, there’s cancer,” but also you have a cancer that has a high rate of recurrence, particularly when we’re talking about non-muscle invasive bladder cancer. And even if it’s non-muscle invasive, hey, guess what? There’s a chance of progression. And while we have these great therapies, they might really impact your quality of life in terms of your urinary and sexual function. It may impact your body image. And also importantly, there’s a financial toxicity that can cause significant emotional and psychological stress. And so what are the mitigating factors here? I think we’re learning more about this and we’re focusing more on this and realizing the importance of it, but asking questions, communicating fully with your care team, asking questions to the community, managing expectations. “Hey, you have bladder cancer, but here’s your staging. Here’s the treatment that we think you’re going to need. Here are the side effects that you may have.”

And then talking about your concerns and feelings not only with friends and family and loved ones and your doctor, but sometimes with a psychologist or a support group. And in some instances, particularly if you’re feeling really stressed or anxious about it, at least temporarily taking advantage of medications if you need them. So these side effects are important and should not be put by the wayside as you’re focusing on the physical side effects of treatment and the diagnosis.

Dr. Kristen Scarpato:

And then along with that, the caregivers. So the caregivers are such a part of this journey and we can’t forget about them. Caregivers need a safe space to discuss the stresses and challenges and rewards of caring for loved ones.

Dr. Kristen Scarpato:

So here are some of the questions and throughout the presentation I’ve interspersed some of these, but resectoscopes are not small for everyone. There is little to no discussion of sequelae in these cases and I’m really glad that somebody pointed this out because resectoscopes are not small. And even as someone who’s been doing this for quite some time, I appreciate that. They’re not small and no case is small and I hope that no one ever says to you, “Oh, it’s just a little TURBT.” It’s not. So the sequelae of passing a large scope through a small channel, whether you’re a female or a male, can be dramatic and can cause some of those side effects that we talked about.

Not only just pain from passing the scope, but also scar tissue, irritation, bleeding, burning. And so I certainly agree with this comment and we really do try and place things without pushing. We try and use as much lubrication or gel as possible to help facilitate a smooth transfer into an out of the urethra. But even in males too, the tip of the penis, or the urethral meatus, can become irritated and scarred with the passing of these catheters. And so unfortunately in some patients over time that that scar tissue can lead to the need for the urethra to be dilated or opened up. So how can I avoid constipation after cystoscopy? And the best thing, again, staying hydrated, eating fiber and stool softeners, especially in the setting of anesthesia or narcotic pain medicines and then remaining active. So when we’re inactive, that helps our bowels get a little sleepy.

And so those are the best things to do. In some cases you may need a suppository to help move things along or a MiraLax type medication. What are the challenges with resection of TURBT for a stage one large multifocal tumor? Well, we’re often doing this procedure the vast majority of the time with a rigid scope and you saw a picture of that scope. But the bladder is a sphere, right? It’s like a balloon. And so we’re using a rigid instrument to try and access all areas of a balloon. And so managing your bladder’s fullness and your distension of the bladder wall so that we can access all areas is challenging. Some bladders are really tall, some bladders are really short. We want to balance getting muscle, which is a quality metric with not perforating or making a hole in your bladder.

And there certainly is a learning curve associated with doing a TURBT. And now we are seeing more published about the importance of quality in TURBT and what makes quality. So I think having experience in volume of these procedures can be challenging for some depending on your practice setting. Having the right equipment can be a challenge. And then the volume of tumor, it’s not something that we want to spend hours and hours doing. So sometimes you need to come back for an additional procedure or even a third procedure. And the reason for that is we would do it for hours of course, but as we’re pushing fluids into your bladder, you may reabsorb some of that and that can cause problems throughout your body. So our challenges are to do the highest quality resection for you for the best outcomes and limit the side effects.

But the patients, for those of you who have T1 disease, that’s a high risk disease and we want to prevent spread and remove all of the tumor. And so really focusing on quality and careful resection is important, getting muscle in the specimen.

TURBT caused my bladder to swell and press down on my vagina, which caused stabbing pains. Why? It’s hard to say, but my thought with this particular question is that maybe the bladder is not being emptied fully because it’s not functioning as well or maybe there’s some evidence of retention after the TURBT. And so the bladder’s full, and as you might recall from one of the earlier pictures, or you can go back and check it out, but the bladder and the vagina sit right next to one another and share a wall. And so if your bladder’s full or there’s irritation of the bladder wall that is right next to the vaginal wall, there can be stabbing pains associated with that. So I think it’s just that close proximity and potentially bladder not emptying as fully as it should be or even constipation playing a role here as well.

Do you have any recommendations to manage urethral damage that causes pain, frequency and urgency? I think the best thing here is prevention and hopefully, and I’m sure your urologists are being careful and trying to do all the things to mitigate urethral damage, but when it does happen, trying to make sure that you’re on the right medications to limit that burning and that pain, and again, maintaining healthy bladder habits so that you’re emptying regularly and not developing what we call dysfunctional voiding habits. There are medications that we briefly alluded to before too, that can help limit that pain frequency and urgency. So the peridium, the trospium, ditropan and constipation medicines.

Dr. Kristen Scarpato:

So a number of questions from y’all about BCG. What are the long-term side effects of BCG and chemo and how long should they last? What can be done to alleviate them? This is a great question and fortunately most of the side effects with intravesical therapies last during the therapy and then may persist for several weeks, maybe months afterwards.

But in the long term it is a rare patient who develops significant scar tissue in the bladder or refractory urinary symptoms, so symptoms that just don’t respond to anything. But we would start with oral medications. If that doesn’t work then we actually can use other medications like rectal Valium, so something that might relieve and improve some of the stress, “relax” is the word I’m looking for, some of the stress and pain and cramping down in the pelvis. We can do those bladder installations like I talked about that have that combination of Marcaine and a steroid and a medication that causes lower acidity in the bladder, and then Botox. Very rarely would a patient’s bladder really be de-functionalized or not useful after these therapies and require more aggressive surgery.

This is a great question. Does the side effect indicate the BCG effectiveness? And I’d like to think that it does. I don’t know that we have great evidence that shows that. But given that BCG harnesses your own immune system, it makes sense that you might think that if you’re having a lot of symptoms, that means your body’s generating a lot of response to this. And anecdotally I have seen that in some patients, but is there any great evidence that I know of that says if you have more severe symptoms, then you have a better response? Not necessarily. That may just mean that you have more severe symptoms, unfortunately.

If BCG treatment results in bladder lesions, what is the next step? And that’s a patient who’s BCG unresponsive. Fortunately, we do have other agents that can be used in that scenario now like pembrolizumab, like nadofaragene firadenovec, which was most recently approved. And we’re seeing more use of the combination of gem-doce, gemcitabine and docetaxel. So I think one of the positives that came out of the BCG shortage is that we started investigating other agents for patients with high risk and other combinations and we’re seeing a pretty good response. And so it’s possible that there will be many alternatives for patients who either don’t want, can’t get BCG. And then there’s bladder removal.

What are the best installation drugs or combinations to treat BCG cystitis? I think we’ve highlighted some of that already.

What are the lesser known immune system side effects of BCG? And I think these are some of the immune side effects and someone asked previously about red eyes associated with treatment and conjunctivitis has been associated with BCG, which can be immune mediated. So local steroid treatment to the eyes maybe something that helps their writer’s syndrome. Other arthritis type side effects can be seen with BCG.

And so any of these itises or immune mediated responses can occur and we treat them depending on what the particular response is, but oftentimes it’s with a steroid or something that’s going to decrease the immune response to the BCG. The differences between BCG and chemotherapy side effects I think we’ve spoken about as well.

Dr. Kristen Scarpato:

There are many resources available to you and I think the best resource is the Bladder Cancer Advocacy Network. Really just provides a forum, provides community, provides science, provides research support, and so utilizing the Bladder Cancer Advocacy Network in addition to your urologist and your urology team, I like the Urology Care Foundation, which I listed the website there, a lot of helpful information on mitigating side effects, and then your local and national support groups.

So I’m going to stop there.

Stephanie Chisolm:

Dr. Scarpato, I do think there’s three takeaway points. First of all, always talk to your doctor. Don’t think that anything is insignificant. If you don’t tell your doctor, they won’t know how to help you. And so I think that they’ll let you know if it’s not something to worry about. But if you’re just sitting there laying awake, worrying about something, not knowing if it’s normal or not, speak to your doctor. And if not the doctor, then maybe they have a physician’s assistant or nurse practitioner in the office that will also spend some time talking to you. So that’s first takeaway.

Second, thank you so much. We did not pay Dr. Scarpato to sing our praises, but she definitely knows the resources that BCAN offers. Look to There are a ton of answers even in the middle of the night. We’re open 24 hours a day, seven days a week online.

And then the third is you talked a little bit about some of the psychosocial aspects, the stress of dealing with this. I’m not sure if everybody knows, but BCAN launched a partnership with CancerCare in January, and if you call 833 A-S-K, number four BCA, 833-ASK-4-BCA, you can talk to a whole team of licensed clinical oncology social workers, and they will help you find resources in your own community.

I want to thank everybody for joining us. Dr. Scarpato, again, our greatest thanks. We do appreciate it.