Webinar | Walking Through a Non-Muscle Invasive Bladder Cancer Diagnosis

December 17, 2024

Roughly 75% of bladder cancers are non-muscle invasive. For the newly diagnosed with non-muscle invasive bladder cancer (NMIBC), many questions come to mind as they navigate their treatment journey. In this webinar, Dr. Ava Saidian, a board-certified urologic oncologist at the University of Tennessee Health Science Center, helps us understand possible risk factors that may have contributed to a bladder cancer diagnosis and how NMIBC is treated. Dr. Saidian explains what you should understand about a NMIBC diagnosis and what questions to ask so you can be your best health advocate.

Year: 2024

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Walking Through a Non-Muscle Invasive Bladder Cancer Diagnosis. Part 1

Transcript (PDF)

Walking Through a Non-Muscle Invasive Bladder Cancer Diagnosis. Part 2

Transcript (PDF)

Walking Through a Non-Muscle Invasive Bladder Cancer Diagnosis. Part 3

Transcript (PDF)

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Full Transcript on Walking Through a Non-Muscle Invasive Bladder Cancer Diagnosis

Patricia Rios:

I would like to begin today’s presentation by thanking our sponsors of the Patient Insight Webinar Series, Merck and UroGen. And so, I’ll start by saying that, each year, over 80,000 Americans are diagnosed with bladder cancer. Roughly 75% of those are non-muscle invasive bladder cancer. For the newly diagnosed, many questions come to mind. This webinar, Walking Through a New Bladder Cancer Diagnosis, is designed to help you understand what is non-muscle invasive bladder cancer, the risk factors and the therapies available to treat this type of bladder cancer.

To help us with this, we have invited Dr. Ava Saidian, a urologic oncologist at the University of Tennessee Health Science Center in Memphis. She treats all urologic malignancies and specializes in bladder cancer, kidney cancer and testicular cancer among other things. Dr. Saidian earned her medical degree at the University of Kansas School of Medicine and completed her urology residency at the University of Alabama Birmingham. She completed a two-year Society of Urologic Oncology Accredited Fellowship at the University of California San Diego. She’s a recipient of Beacon’s 2022 Young Investigator Award and she’s a member of the Society of Urologic Oncology, American Urological Association and Society of Women in Urology.

With that, I want to welcome Dr. Saidian for joining us today and hand over the mic for her presentation.

Dr. Saidian:

Thank you. Thank you so much for having me today, it’s a privilege to be able to speak to you about non-muscle invasive bladder cancer. So, as Patricia mentioned, I did receive a YIA grant through BCAN and that’s my only disclosure. So, as she mentioned, we’re going to talk about some of the risk factors of bladder cancer then go into the different types, signs and symptoms and then the testing that goes into diagnosing bladder cancer as well as some of our first-line treatment options and then resources and tools.

Dr. Saidian:

So, you can divide the risk factors for bladder cancer into three different categories, behavioral, genetic and environmental.

Dr. Saidian:

So, behavioral, these are lifestyle choices or habits that we make that might increase our risk of developing bladder cancer. Smoking is the leading risk factor for bladder cancer. Cigarette smoke contains carcinogens that goes into our lungs and then into our bloodstream then that gets filtered by our kidneys and the urine that contains those carcinogens sits in our bladder and can damage the bladder cells. Diet and fluid intake, so diets that are low in fruits and vegetables and high in processed meats can increase your risk of bladder cancer as well as decreased fluid intake. It’s thought that, if you’re not drinking enough water or fluids and you’re not urinating often, so harmful things that your body’s trying to get rid of sit in your bladder for longer periods of time and can cause damage.

Chronic bladder infections and inflammation. So, recurrent urinary tract infections can lead to an increased risk of bladder cancer as well as exposure to certain chemicals in the workplace. So, people that work in dye manufacturing, petrochemicals and rubber production can be exposed to things that can increase their risk of bladder cancer.

Dr. Saidian:

Some genetic risk factors. Having a family history does increase your predisposition potentially to having bladder cancer. It’s not like other cancers where, for example, if you have a BRCA mutation, you’re at very high risk of getting it from your parent or something like that but, having a family history, you are a little more pre-inclined to get bladder cancer. There are some inherited syndromes that are very rare but do exist such as Lynch syndrome and teratoma syndromes that increase the risk of bladder cancer. And then there are simply some genetic mutations that aren’t associated with syndromes that can increase your risk of bladder cancer.

Dr. Saidian:

And third, environmental exposure. So, chemical exposure similar to those ones that are found in certain industries, things that are like in dyes, paints and solvents, chronic long-term exposure to those can increase your risk of bladder cancer. Arsenic in drinking water and then radiation exposure, whether that’s environmental radiation like radon gas or radiation therapy, so treatment for other types of cancer especially cancers in the pelvis such as colorectal, cervical cancers that might receive radiation, those can also increase your risk of bladder cancer. And then there are certain drugs that chronic exposure to can increase your risk. Most of these are, excuse me, most of these are chemotherapeutic drugs, things that you aren’t necessarily taking daily but there are some out there that can increase your risk of bladder cancer.

Dr. Saidian:

Now, what are the different types of bladder cancer?

Dr. Saidian:

For the most part, we split them into two different classes, urothelial and non-urothelial. So, the urothelium, it’s the inside lining of your bladder. So, this epithelial lining that’s in this picture, that’s your urothelium and cancers that arise from that are urothelial carcinoma. And then, when you have cancer in your bladder that’s a different cell type than the urothelium, we consider those non-urothelial cancers.

Dr. Saidian:

So, urothelial carcinoma, the cancer that comes from the lining of your bladder is the most common type, about 90% of cases originates from the urothelium. We divide it into non-muscle invasive and muscle invasive urothelial carcinoma, we’ll get into what that means a little later. They can be papillary or flat so they can stick out like a cauliflower or they can cover the floor of your bladder like a shag carpet and then they can be low or high grade. So, when you have a urothelial carcinoma, a pathologist will look at it under a microscope and it’ll give it a grade, low or high. Low grade tumors tend to be less aggressive, they tend to not progress versus high grade or more aggressive, they tend to come back and progress into higher stages of disease.

Dr. Saidian:

Non-urothelial bladder cancers, these are very rare, they make up less than 10% of bladder cancers. The most common ones are squamous cell adenocarcinoma and small cell carcinoma. You’ll hear these types of bladder cancer described as variant histology. So, the histology varies from our classic ones, we call it a variant histology, they tend to be more aggressive and they usually require more aggressive treatment. Again, these are the minority of bladder cancer types.

Dr. Saidian:

So, signs and symptoms of bladder cancer. I understand a lot of people here with us today might already have a diagnosis of bladder cancer or know someone with bladder cancer but I think it’s really important to hammer these home because it’s good to know for yourself and also what to be aware of in terms of things that could be a sign of even a recurrence of your bladder cancer.

Dr. Saidian:

So, the most common symptom is hematuria, that’s blood in your urine, it occurs in about 80 to 90% of bladder cancer cases. There are two types of hematuria gross hematuria, which is when you can see the blood in your urine, or microscopic hematuria so that’s when your urine looks yellow but, under the microscope, we can see that there’s blood in it.

Other symptoms include frequent urination, pain or burning with urination or the urge to urinate. So, you get the urge to go and you have to go right away, you can’t hold it. Now, a lot of these, you might notice, overlap with the symptoms of a UTI so that’s important to keep in mind. If you have a UTI that just won’t go away or you keep getting frequent UTIs even after treatment with antibiotics, it’s important for you to be referred to a urologist or to be evaluated for bladder cancer to make sure that those symptoms aren’t a sign of bladder cancer.

Dr. Saidian:

So, once we’re suspicious of you potentially having bladder cancer or, in most cases, having blood in your urine, we need to evaluate all the structures involved in making urine because the blood can come, not only from your bladder or your urethra, but from your kidneys or your ureters which are these tubes that drain your kidneys or drain the urine from your kidneys into your bladder.

Dr. Saidian:

So, the way that we evaluate your kidneys and your ureters is by using abdominal and pelvis imaging. Most of the time, this is a CT scan with contrast. If you can’t receive contrast because of your kidney function, then we can get an MRI. Now, the bladder and the urethra are hard to visualize on CT and MRI so we use what we call cystoscopy to evaluate your bladder and your urethra.

Dr. Saidian:

So, a cystoscope, cystoscopy is a medical procedure where we use a small camera that’s attached to this long, skinny tube to look inside your urethra and bladder. It is gently inserted to your urethra to examine it closely as well as your bladder. It’s done in the doctor’s office and we usually use some local anesthesia so that numbing medicine inside your urethra to help minimize any discomfort. It is a funny sensation because, as we put the scope in, it feels like you’re peeing but you’re not. Especially when the scope passes through your sphincter which is the muscle that keeps your bladder closed, there can be some discomfort there. The whole procedure takes usually less than five to 10 minutes, you can go home the same day, you can drive yourself there and back. You might have some mild discomfort with urinating for the rest of the day, especially some burning, that’s completely normal and, in my experience, that usually goes away within 24 hours. So, you’ve had some blood in your urine, you go into the office, you’ve had your cystoscopy and there’s a concerning lesion or your urologist sees a tumor.

Dr. Saidian:

So, what we do next is called a TURBT or a Transurethral Resection of Bladder Tumor. So, what we do is we use a resectoscope, that’s this instrument you see in this picture, this comes off of our cystoscope so we can see what we’re doing and it has a loop on here that uses cauteries, so a hot knife, and we resect the tumor or the suspicious tissue and send it off to the lab to be examined. We resect all the tumor that we can and then we cauterize any bleeding. The procedure usually takes about an hour, it can take longer if you have a lot of tumor or if there’s a lot of bleeding to control. Most people go home that same day and, depending on how much we had to resect, you may or may not go home with a catheter. And the catheter usually stays in for a few days, it lets your bladder rest while it heals up.

Dr. Saidian:

Just a brief note, when you have a TURBT, your urologist might recommend that you get chemotherapy at the time of your TURBT, this isn’t uncommon. Sometimes, after your resection is done, if there’s no concern that we’ve perforated your bladder or there’s no hole in your bladder, we might give you some chemotherapy in your bladder that just stays in there for about an hour. This works best for low-grade bladder cancer especially Ta which we’ll get into in a minute what Ta is. So, when your urologist looks in your bladder, we can’t tell you exactly if you have low or high grade or Ta or muscle invasive disease but we can get pretty good at delineating if we’re suspicious that it’s just a low-grade disease. And in that case, we might give you some chemotherapy in the operating room. So, if your urologist suggests doing that, that’s very common and we do it because it’s been shown to prevent recurrence especially in those low-grade diseases.

Dr. Saidian:

So, the purpose of that TURBT is, not only to remove tumor, but to also stage it. So, the staging is based on how deep the tumor invades into your bladder. So, if it’s just in this first cell layer, if those cells just look funky, we call that CIS or carcinoma in situ. The next stage is Ta so this is where there’s a morphologic abnormality as well within that first layer. T1 is the cancer has extended from that first layer of the urothelium into what we call the lamina propria which is this lighter pink layer of tissue, it’s the connective tissue that connects that urothelium to the muscle layer of your bladder. And then T2 and T3 are when the tumor’s gone into your muscle or the fat around your bladder. Now, those are then considered muscle invasive. So, for this talk, we’re focusing on just these non-muscle invasive stages of bladder cancer.

Dr. Saidian:

So, once we know what stage you are, we then will risk stratify you. So, based on the stage of your disease, we put you into a risk group, these are the risks of the disease coming back or progressing. The reason we do this is because the treatment that you’ll receive is based on what risk group you are. So, this is a really good question to ask your doctor. You might hear them say you have high grade, T1, blah, blah, blah, blah, blah but you ask them, “Hey, what risk group am I in?” because that’s what’s going to determine what treatment you’re going to receive.

So, low risk bladder cancer is made up of low-grade disease, that’s Ta, so just in that first layer, less than three centimeters so small tumor and solitary. So, there’s just one low grade, small, not very invasive tumor. Intermediate risk is comprised of those low-grade tumors but they’re a little bit deeper, they might be a little bit bigger, three centimeters, or there’s multiple of them or it’s a tumor, a low-grade tumor that you had but it came back within a year. The intermediate risk group also involves high grade urothelial carcinoma but it’s high grade that’s not very deep, small and solitary. Then we have our high-risk group. So, high risk is high-grade urothelial carcinoma, that’s CIS, T1, large or multifocal and then there are some very high risk features that will change your treatment or it’ll make us approach your treatment in a more aggressive way because you’re at a much higher risk of the disease coming back.

Dr. Saidian:

So, before we jump into the specific therapies, there is a role for a repeat TURBT. So, you might think, okay, I went into surgery, my tumor was supposedly resected now my urologist is telling me I have to do it again? Yes, this is very, very common and it’s actually a really important part of our treatment for you. So, if for some reason, we were unable to get all the tumor the first time because there was too much or there’s too much bleeding or if there is a lot of tumor that are very large or in a lot of spots or if you have a high-grade T1 or a high-grade Ta that’s very large or there was no muscles in the specimen, we recommend that you go back for a repeat resection within two to six weeks of your last resection.

Dr. Saidian:

Now, this is very important because what we found is, if you have high-grade Ta disease and we go back into your bladder, 50% of the time, we’re going to find that there was more cancer there. Even if we couldn’t see it, when we resect the area where the tumor was, 50% of the time, there’s still disease there. Then 15% of the time, it will actually be upstaged so we’ll find that it was actually a higher-stage disease than we initially thought. Then I found on your first TURBT you have high-grade T1, when we go back in, about 50% of the time, we’ll find more disease again and, 30% of the time, you’ll be upstaged to muscle-invasive disease. Now, muscle-invasive disease, you’ll receive a completely different treatment paradigm that could potentially include having your bladder removed. So, you can imagine how …. You can imagine how important it is that we do this re-resection and make sure that we’ve accurately staged your bladder cancer.

Dr. Saidian:

Now, let’s get into some of the treatments. Like I mentioned before, the treatments are based on what risk group you’re in so that’s how we’ll go through these treatments.

Dr. Saidian:

In the low-risk group, so that’s the low-grade carcinoma that’s not very invasive, it’s small, there’s maybe just one tumor, our recommendation is that we just watch you. So, once you’ve had the tumor completely resected out and is for sure a low-risk classification, at three months after your surgery, we’ll do another scope in the office, make sure there’s no more tumor and again at 12 months. If you’ve been clear at that 12 months, then we’ll just do a cystoscopy once a year for five years and then, after that, only if there’s any concern of recurrence. So, if there is a sign of recurrence and you get another TURBT, then we start all over again with our timeline. So, if, at the three-month one, you have a tumor and we resect it again, then you start back over in the treatment paradigm. Okay?

Dr. Saidian:

So, excuse me. Next is the intermediate risk group so that’s the low-grade but larger, more invasive disease or high-grade but not very invasive. After your TURBT, we recommend intravesical therapy. So, that’s essentially immunotherapy or chemotherapy that we put into your bladder. Most commonly, our preferred regimen is BCG which we’ll get into the details of that a little later in this talk.

Dr. Saidian:

If you have intermediate disease, you will get a cystoscopy three times within that first year of your cancer diagnosis. So, at the three, six and twelve-month mark. If, at any of those cystoscopies we find a tumor, you’ll undergo a TURBT and then you’ll start that cycle over again at the three, six and twelve-month. For your second year, you’ll get a cystoscopy every six months and then annually up to five years and then as needed after that. Your urologist will also do something called urine cytology which is when we do the cystoscopy, we’ll collect some of the urine in your bladder and send it off for special testing. It looks at the cells in the urine to see if there are any that are concerning for cancer. So, we might not see the tumor when we do the cystoscope but there could be evidence of it there so that’s what that urine cytology is for.

Dr. Saidian:

Then our high-risk group so these are the patients with high-grade CIS or invasive disease that’s large or anything with high-risk features. So, if you have just the high-risk without any high-risk features, we’ll recommend that you get intravesical chemotherapy. If you have any of these high-risk features, so you’ve already failed therapy, you have any of those variant histologies, invasion into the lymphovascular system or involvement of your prostate, currently, cystectomy is preferred that’s because we know that your disease is going to progress to be muscle invasive and so what we’re trying to do is just get rid of it before it gets to a point where it’s progressed through and outside your bladder.

Now, myself and I know a lot of urologists, we are open to doing intravesical chemotherapy for patients with some very high-risk features if they’re not a cystectomy candidate or if they want to hold off on cystectomy, which is understandable, it’s a very high-risk procedure so we will sometimes try to do the bladder chemotherapy. However, if you have any recurrence, at that point, then we really do recommend that you get a cystectomy.

Dr. Saidian:

And then I’m just going to briefly mention this other treatment paradigm. So, if you have high-risk disease and you’ve tried BCG or you’ve failed BCG, there are some other treatment options. A lot of these have recently been FDA approved so you might see a lot of ads or commercials for them or pamphlets in your urologist’s office which is why I want to mention them. So, currently, these are only FDA approved, these bottom three for patients who have failed therapy or have specific features in their recurrence. So, they’re pembrolizumab or KEYTRUDA which you might’ve seen a lot of commercials for, nadofaragene or NAI plus BCG. Again, these are not necessarily first-line therapies and they’re for people who have failed initial therapy but they are becoming more popular and you might hear them talk about which is why I wanted to mention them.

Dr. Saidian:

For the high-risk group, as you can imagine, our follow-up is a little bit more aggressive. For the first two years after your initial resection, you’ll get a cystoscopy every three months and then every six months for five years and then once a year up to 10 years. So, on top of that, we’ll also image your upper tract, so your kidney and your ureter, every one to two years to make sure that there’s no disease up in your bladder or ureters.

Dr. Saidian:

Okay, so intravesical chemotherapy. So, as you can recall, for intermediate and higher risk, this is our first-line option is putting therapy into your bladder to treat the bladder cancer.

Dr. Saidian:

Currently, the preferred regimen for intermediate and high-risk patients is what we call BCG. So, BCG is Bacillus Calmette-Guerin, it is a live attenuated strain of Mycobacterium bovis. So, mycobacterium is bacteria that can cause tuberculosis, this is an attenuated strain so it’s like a vaccine. We put it in your bladder, they’re not 100% sure how it works but it’s been hypothesized that it, not only has a direct effect on killing the tumor cells, but it also stimulates the immune system to fight against the tumor spells by infecting the cancer cells, inducing an immune response and then having antitumor effects.

Dr. Saidian:

So, when you get BCG, because it is a live attenuated strain that works by using the immune system, your urologist will usually check your urine to make sure you don’t have an active infection before getting the therapy. And on that note, we typically try not to use it in patients who are immune suppressed whether they’re a transplant patient or they have any other diseases that suppress their immune system or are on drugs that suppress your immune system for things like lupus or autoimmune disease. This is because it’s been found that the BCG doesn’t work as well in those patients which makes sense if it uses your immune system to fight the cancer.

So, once we know you’re a good candidate for it, you’ll go into the office and a catheter will be placed, the drug is then inserted through the catheter into your bladder, it’s usually about only a 50 to a hundred CC’s depending on the dose. The BCG is held in your bladder for about one and a half to two hours. Depending on how the office runs it, how your physician administers it, most of the time, you don’t have to stay in the office while you get it, you can go home, you can urinate it into your toilet, we just recommend that no one else uses that toilet until there’s been at least three flushes and there’s been a cup of bleach poured into the bowl. Also, the catheter does not have to stay in your bladder those whole two hours either.

Dr. Saidian:

So, since BCG is based on an immune response, we have to give you an induction course of BCG. So, you’ll get one therapy weekly for six weeks and that’s to ensure that there’s been an immunological response. So, basically, we’re hitting your bladder and that cancer with that BCG again and again and again to make sure that we’ve kicked off that immune response. After your induction BCG, you are now six weeks through induction which has usually started about six weeks out from your last resection. So, now you’re three months out from your resection and, as you remember, on most of the protocols, you’re going to get a cystoscopy at three months. So, after you finish your induction, you’ll get a cystoscopy, we’ll make sure there’s no more tumor there and then we’ll move on to what we call our maintenance BCG.

Dr. Saidian:

So, maintenance BCG is you get BCG weekly for three weeks at 3, 6, 12, 18, 24, 30 and 36-month intervals.

Now, if you have intermediate risk bladder cancer, we usually only do maintenance for a year versus high risk, you’ll be on that maintenance protocol for three years. You’ll be getting cystoscopies in between those maintenance sessions to ensure that you don’t have any recurrence of your disease. If you do, it’s like I mentioned earlier, we start back at the beginning of the timeline with a resection and you then start the whole process over again.

Dr. Saidian:

Now, for a very long time, there has been a BCG shortage. It’s a very long story why different factories, supply chain, blah, blah, blah but this has been going on way before COVID. So, because there’s been a BCG shortage, a lot of really smart people have come together and put out consensus statements on how BCG should be used and what we can use in the absence of BCG. So, it is usually prioritized with patients with high-grade T1 and CIS because those are the patients that are at the highest risk of recurrence and there are some alternative options that are intravesical chemotherapies.

So, gemcitabine and docetaxel, this is the one that I would say most contemporary urologists and urologic oncologists are using. It’s currently the treatment of choice in the BRIDGE Trial which is a huge trial. It’s actually a really well-designed trial that’s going to compare gem/doce directly to BCG. And we haven’t really had any trials that have compared any drug directly to BCG so we’re all very excited to see what the outcomes of that trial are. But even though the results haven’t matured or come out yet, this is what a lot of us are using gem/doce in the absence of BCG.

Other options are mitomycin which is another chemotherapy, gemcitabine alone or even split-dose BCG. So, you can use a half vial or even a third vial and there have been some studies that it can be just as effective as the full dose. However, for example, at one of the hospitals I work at, we have zero BCG so it’s not even an option to do a split dose so that’s why we’ve been using the gemcitabine/docetaxel.

So, other than it working to prevent the cancer to come back or recur or progress, the other thing that’s going to be most important to the patient is the side effects.

Dr. Saidian:

So, what are the side effects of BCG? Well, as you can imagine, we’re causing a local immune reaction in your bladder so the most common thing people get is an inflammatory cystitis. So, basically, a really irritated bladder, it might almost feel like you have a UTI, burning with urination, things like that. More rarely, it can be very severe to the point where people cannot tolerate the BCG and we have to choose a different treatment option. You can get some systemic side effects of the immune response. So, your body’s kicking up ready to fight so you might feel similar symptoms to when you have a flu like muscle aches, things like that. You can even have a fever.

Now, there is a such thing as BCG sepsis which is where BCG somehow got into your bloodstream and is now causing you to become septic. This is very, very rare but it can be very serious and requires treatment and monitoring. So, even though the fever can be just a response of your immune system kicking into gear, I do tell all my patients, if they do have any fever, that they do need to be seen in the emergency room just to make sure we’re not dealing with anything more serious.

Dr. Saidian:

So, these are some of the other chemotherapy options, I mentioned some of these. I did add epirubicin and doxorubicin because those are chemotherapy agents that have been around longer or used longer so we do have more data on them. And however, like I mentioned, most contemporary urologic oncologists aren’t really using the epirubicin and doxorubicin anymore, we’re using gemcitabine and docetaxel.

Dr. Saidian:

A lot of people still use mitomycin and it is very good and very effective, however, mitomycin can have some very serious side effects especially if you have a hole in your bladder from the tumor being resected, that’s actually an absolute contraindication. If there’s even the slightest concern that you might have a bladder perforation, we cannot use mitomycin because it can cause some severe reactions. Gemcitabine and docetaxel, they have similar local responses. So, urgency, frequency are the most common ones so basically bladder irritation. There can be some pain with urination and blood in the urine as well.

Dr. Saidian:

So, I think an important thing to think about as a urologist for our patients is how can we make this more tolerable. Because if you can’t tolerate these therapies, then we have to talk about being more aggressive and being more aggressive sometimes will mean having to remove your bladder or having to receive more aggressive therapies which we’d like to avoid. So, I have a couple little tips and tricks that I’ve learned from all my amazing mentors who trained me. So, for one, preventing skin contact. A lot of these might not be labelled as irritative to the skin, however, they are chemotherapeutic agents in the end so I tell all my patients, after they urinate it out, to clean themselves very well, make sure there’s none left on their body anywhere especially women in the vagina around the labia, make sure you wash your hands very, very well.

For women especially, you can imagine, because the urethra is up behind our labia that it can become very irritated. So, women who are good candidates for them, I recommend that they start a topical estrogen. This helps make that tissue a lot healthier, a lot more durable especially because, if you have bladder cancer, you probably already have some irritation with urinating, pain with intercourse, vaginal pain or dryness so topical estrogen can really help with all of that. So, if you think that this might be something you’re interested in, I would definitely talk about getting on it with your urologist.

Some other things, men, we counsel for you to avoid penetrative intercourse for about a week. For women, there’s no good data on receptive intercourse so most people recommend a week as well but we don’t really have good data on it. Some offices will take the catheter out in between your chemotherapy so we’ll put in, for example, the gemcitabine, take the catheter out and put another one in to put your docetaxel in. So, if you don’t want to sit there with a catheter, you don’t have to. However, if you are nervous about being able to hold the chemotherapy in because you just don’t think you can tolerate it, you think you’re going to pee or leak out on yourself, then we can leave the catheter in. So, based on your urologist office’s protocols, you should talk to them about what can be done to make it so that you are able to keep the chemo as long as possible so it’s most effective but also stay comfortable.

And then, also, you can ask your doctor about taking a bladder spasm medication. So, basically a medication that calms your bladder down and it keeps it from reacting to the chemo being in there. You can take that before your appointment and this can help a lot of patients tolerate the chemotherapy for a longer period of time which is better for your treatment.

Dr. Saidian:

Okay, some resources and tools.

So, I am biased by this great organization but, hands down, probably one of the best places for resources is the BCAN website. Whether it is finding a urologist, learning more about your treatment, finding other people, support groups, it really has everything you need in one place. All of these webinars are recorded and put up there, it’s really got a plethora of information as well as information about local events, our big meetings, things like that. There are also a lot of other great websites out there, American Cancer Society, the AUA and the American Bladder Cancer Society. I like to emphasize these specific websites because Google can be a very dangerous place, there’s a lot of misinformation out there, there’s a lot of anecdotal evidence. So, someone’s uncle’s friend who had this horrible experience which can falsely taint your experience. So, I just want everyone to have accurate information and that’s why I always direct my patients to these websites.

Dr. Saidian:

Also, BCAN has a great mobile app. If you just go into the app store and type in bladder cancer, I think this is the first one that pops up. So, it’s nice because you can read about different things in the palm of your hand, lots of different resources and then lots of access to support.

And then, speaking of support, I think your bladder cancer journey, even though it might not look like what other people’s cancer journey looks like, say, people who have muscle-invasive cancer, for example, they have to get their bladder removed, they have to get the chemotherapy that you see in the movies with the IV and losing the hair but, having non-muscle-invasive bladder cancer, it can be a huge burden. You’re seeing your urologist every couple of weeks at minimum, you’re getting chemotherapy instilled into your body once a week for weeks at a time, you’re going to and from the doctor, you can have symptoms that are very bothersome every day. So, I think it’s really important that you find support for yourself whether that’s a bladder cancer support group of other patients going through a similar thing or even mental health support.

I think the mental health aspect of it is just as important as the physical. Sometimes, as urologic oncologists, we focus on the physical because we just want your cancer to get better but your mental health and being healthy in that sense is just as important because, if you feel good about what we’re doing, feel confident in us and you feel supported in yourself, then you’re really going to have better outcomes that way. So, if that’s not a mental health specialist, then your family or friends or church or whatever you need to get you through it. And then last but not least, your medical team. We’re here for you to help you find these resources so don’t feel like you can’t ask your urologist or your nurse or nurse practitioner or PA different resources.

And then the most important thing to remember is that, even though we’re advocating for you and your family and your friends are as well, that you really are your best advocate. I tell all of my patients to keep a journal or a notebook on their phone or something of a running list of questions to ask me. That is what I am here for, that is what your urologist is there for. We want to know all of your concerns, we want to talk through all of them and make sure that you understand what’s going on and are okay with what’s going on and what the next steps are. So, write down your questions because they’re going to pop into your head and you’re going to forget them when you’re in the office and we want to go through those with you.

Another important thing is to speak up, reach out to us if you’re having trouble tolerating any part of your treatment. If you’re having symptoms, I don’t want them to get to the point where they’re so bad you can’t tolerate your treatment anymore and we have to find something else to do. Sometimes it’s better if we know early on that you’re having certain side effects because then we can try to stay on top of them. Or, for example, if you can’t tolerate the office cystoscopies anymore, let your urologist know. I have lots of patients where, because of the treatment that they had, it’s just too painful for them to get it done in the office. No big deal, I take them to the operating room, it’s a quick 20 minutes, they go home later that day.

So, really speak up for yourself, let your doctor know what you are and are not comfortable with and ask for clarification. So, I think, if you know what your treatment plan is and what the next steps are, you’re going to get the best care. So, ask for clarification, ask why we’re doing things, why we’re not doing certain things because, like I said, if you’re confident in the care that you’re getting, I think you’re going to have better outcomes. And the other thing I always tell my patient is do not feel like you are bothering me, it is our job to help you. So, advocate for yourself, speak up for yourself and let us help you get the best care that we can give you. So, that is the end of my talk. I hope I covered everything and I’ll let Patricia take it back over.

Patricia Rios:

Excellent. Thank you, Dr. Saidian, for such a comprehensive and excellent presentation. As a reminder to our listeners, if you have any questions, please use the Q&A button at the bottom of your screen. And I see we already have some questions, Dr. Saidian, so we’re going to go right into the Q&A. First, I want to ask you, there’s a question about blue light and white light. Before we address the question, can you explain the difference between the two and their response, if any?

Dr. Saidian:

Yeah, yeah. So, that’s a very good question. So, white light is just the light we’re using right now, it’s the regular light that we plug into our cystoscope. Blue light is where you have a special chemical injected into your bladder and then we use a blue light, it’s just using a different spectrum of light and what it does is the tumor cells pick up on … Or, I’m sorry, the chemical gets picked up by tumor cells that we might not be able to see with our own eye but that the blue light can pick up on. So, this is often used at usually the re-resection TURBT so it can help us find tumors that we might not be able to see with our naked eye and it’s usually used in that re-resection phase.

Some people, for example, our institution doesn’t have it in our office, we can use it in the operating room so that’s why I use it in re-resection. Some places have it in the office, so your office cystoscopy at just your standard rechecks might use blue light. Basically, it’s just a newer technology that can help us identify tumors that we might not be able to see with just the regular cystoscope.

Patricia Rios:

Thank you for explaining that. And is there a benefit on whether there are some advantages in having blue light depending if you’re at high risk or intermediate or low risk?

Dr. Saidian:

So, yeah, it’s typically used more in the intermediate and high risk because it’s better at picking up CIS or high-grade disease, low-grade disease might not take it up as much. So, that’s usually in the setting that it’s used in higher grade disease but there is a role for it in low grade. But again, it’s mostly used for those high risk or intermediate risk patients that are usually getting the re-resections.

Patricia Rios:

Thank you. Now, you talked a little bit about risk factors and genetics, there’s some questions about tumor genomic profile. Can you go into explaining what that is, what that entails and explaining its role in decision for treatments in bladder cancer?

Dr. Saidian:

Yeah. So, there are some … We’re using a lot more genomic profiles and different urine testing, cytology testing based on those genomic profiles. A lot of the ongoing trials are currently using those and what they can help do is help us be better at predicting who’s going to recur and also who’s going to respond to what treatment We don’t really have … The reason those are being used in those trials is because we don’t necessarily have the answers yet on a larger scale, a lot of those have been preliminarily studied. But I think in the future what it’s going to entail is everyone will get genomic profiling of their tumor and they’ll have a more tailored treatment.

Right now, as you can see, it’s really broad strokes. If you fall into this risk category, this is the treatment you get. But we will be moving towards a more personalized medicine based on different tumor markers, based on different genomic profiling. I didn’t get into that with this talk since this was more of a broad brush stroke talk about it but there is definitely a role for it in diagnosis especially in patients who might have recurrences.

Patricia Rios:

Thank you. Well, there’s a question about changes in diet. Do you have any recommendations around the role of nutrition and whether it is affected or what dietary changes people should take?

Dr. Saidian:

Yeah. So, a lot of the dietary stuff is, especially the risk factors, is based on large-scale pattern observations and correlations. We can’t say, if you eat bacon every day, you will get bladder cancer. But a lot of it was just found that a diet full of highly processed foods, those patients had a higher risk of bladder cancer. Of course, there might be other things leading to an unhealthy lifestyle that add to it. So, I think, once you do have bladder cancer though, what we have been finding is there is evidence of a more, for lack of better terms, a more vegan diet, plant-based foods have been shown to be healthier for all types of cancers and I don’t think bladder is excluded from that.

Now, do I think radically changing your diet is going to cure your cancer? No, but I think leading a more healthy lifestyle will probably help in terms of your overall tolerance of things, your overall health and having just a more nutritious diet is going to be better for you overall. But that one-to-one link isn’t there, it’s just patterns that have been observed.

Patricia Rios:

Thank you. Now, we didn’t really go into clinical trials and I was curious to know if you see a role of clinical trials in this space and when should that conversation come up?

Dr. Saidian:

Yeah, absolutely. So, I think you can always bring that up to your urologist. I think it’s probably going to be best for patients who have had recurrences or patients who can’t tolerate certain treatments. So, if you’re not tolerating those treatments but you’re not ready to have your bladder out, I think a clinical trial is perfect. I think, if you are having lots of recurrences, clinical trial is good but I think at, any stage of disease, enrolling in a clinical trial is important. Even if you’re going to get the standard of care and not necessarily the new treatment or whatever they’re testing, enrolling in those clinical trials do help us get a lot of data. But I think, in terms of new treatments, patients who have had recurrences or can’t tolerate treatment, those are people that your urologist should really be looking at a clinical trial for you.

Patricia Rios:

And just as a reminder to our listeners, we have on our website a clinical dashboard where you can look for clinical trials that are bladder cancer specific and you can browse through those based on where you live. Now, I know we didn’t get into the surgical component of it but there is a question about bladder preservation therapies and whether you could address that and when is that offered and any information you can share with us.

Dr. Saidian:

Yeah. So, in terms of bladder sparing therapies, for the most part, all non-muscle invasive bladder cancer, the standard of care is essentially bladder sparing. The only one that’s not is if you have those very high-risk features, in which case, right now, we recommend doing a cystectomy up front. Or, even some of the variant histology, we recommend a cystectomy up front. So, bladder sparing, that terminology is usually spared for or, excuse me, is usually used when we talk about patients who have muscle-invasive bladder cancer where, currently, the gold standard is chemotherapy and then having your bladder removed. The bladder sparing therapies are where you get chemotherapy with the resection and radiation.

So, the bladder sparing comes into play with non-muscle invasive when you’ve had multiple, multiple recurrences and we’re getting to the point of talking about taking out your bladder. And at that point, if you really don’t want your bladder out, we can talk about doing radiation along with chemotherapies that boost the power of the radiation.

Patricia Rios:

Thank you. And what are some of those chemotherapy drugs used typically?

Dr. Saidian:

When or what?

Patricia Rios:

Which ones. Which ones, what?

Dr. Saidian:

So, they’re usually platinum-based so cisplatin and gemcitabine but then there are specific chemotherapies like 5-FU that actually work together with the radiation to have a better effect. So, some of them aren’t necessarily the ones that you hear about with bladder cancer but gemcitabine and cisplatin are some of the more common ones.

Patricia Rios:

Okay, thank you. And a question was submitted, I know you went over some of the side effects with treatment and is dizziness and lightheadedness, is that a side effect that you normally see after BCG treatment?

Dr. Saidian:

I can’t say I see it … I don’t see it often but I have seen it before. So, I don’t know if that might be playing into the overall immunological effect, a flu-like symptom, maybe your blood pressure’s going down, you just don’t feel well. So, I have seen it before, it is more rare. Obviously, if it becomes intolerable, we can’t have you dizzy, falling over things like that so that’s something I would talk to your urologist about. I have seen it before though.

Patricia Rios:

Well, thanks for addressing that. Well, time has flown by and I see we’re almost at the top of the hour. So, the last question that I have for you, Dr. Saidian, and thank you again for joining us today and sharing this very vital information. So, what is the takeaway that you want our listeners to take after today’s webinar?

Dr. Saidian:

I would have to say, non-muscle invasive bladder cancer, it can turn into a chronic disease where we want to cure it but we’re always going to keep an eye on it. You might not get one treatment, you’re going to get a lot of different treatments and, when it comes back, we might change the treatment. And basically, what we’re trying to do with non-muscle invasive is to keep it from becoming muscle invasive because, like I said, that changes the paradigm. So, even though you are going to require a lot of treatment, maybe a lot of surgery and lot of different types of treatments, it is something that we can manage for a very long time and hopefully keep from becoming muscle invasive. So, I don’t want patients to become discouraged when they do receive the diagnosis because it’s something that we can all work together to almost manage a chronic disease.

And the other important thing is I wish we had more time because I see a lot of good questions in the chat and I’m a huge advocate of asking questions, asking your urologist questions and just really trying to understand what is going on with your disease because you are your best advocate. And so, I don’t ever want anyone to ever stop being curious and asking about what I need to do next, what I need to do next, is a clinical trial right for me. So, yeah, those will be my big takeaways.

Patricia Rios:

Well, those are excellent takeaways and we will certainly invite you back for a part two. Thank you so much for joining us and I want to also thank our sponsors, Merck and UroGen, for making the webinars possible. Thank you to our listeners…