Addressing Disparities in Bladder Cancer Diagnosis and Treatment

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Bladder cancer disparities have been examined for several decades. Expert Dr. Shaakir Hasan from Beth Israel Lahey Health discusses patient groups that show disparities and patient advice to advocate for optimal care.

See More from [ACT]IVATED Bladder Cancer

Download Resource Guide | Descargar Guía

Related Programs:

Navigating Bladder Cancer Treatment: Understanding the Role of Academic and Community Centers

Navigating Bladder Cancer Treatment: Understanding the Role of Academic and Community Centers

 Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors

Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors

 Can Self-Advocacy Close the Gap in Bladder Cancer Outcomes?

Can Self-Advocacy Close the Gap in Bladder Cancer Outcomes?

Transcript:

Lisa Hatfield:

Dr. Hasan, what are the most significant disparities that you’ve observed in the treatment of bladder cancer among different demographic groups?

Dr. Shaakir Hasan:

Yeah, so you know, unfortunately, we did find, and actually, before I even start, let me preface this by saying there was a study done about three decades ago, the early ‘90s, that looked at the diagnosis and prognosis of bladder cancer patients in the ’60s, ’70s and ’80s. And they found that there was a worse prognosis for African Americans, particular other minorities, but mostly African Americans, both when it comes to diagnosis, like they were diagnosed later, and then their outcomes, they had worse survival, worse cure rate. And I’m sorry to say that we repeated the study, they use theory data. It’s a national database, and we use the National Cancer Database, NCDB to do a similar study, looking much later. So we did this a few years back. And so we’re looking at the 2000s, 2010s, up to 2020.

Unfortunately, we actually found the same results. The overall prognosis is better, because the overall treatment and management is better. But the differences, unfortunately, still remain. So, Black patients were almost twice as likely to be diagnosed in later stages, i.e., stage IV, incurable stages than their white counterparts. And that obviously means that they’re going to, there’s going to be worse outcomes when it comes to cure rates and survival, overall survival. And so we still do see that today.

Lisa Hatfield:

Okay. Thank you for that information. I also have a follow-up question to that, because I read your study a little bit and learned a little bit more about some of the factors that lead to a later diagnosis. So if you have a patient sitting in front of you who is afraid maybe to, maybe they’re going in, they have blood in their urine, which is a symptom, could be a symptom of bladder cancer. Their PCP has told them originally, well, it might just be, you might be on your period, it could be something else, they go in once or twice, a patient is afraid to confront their doctor or say, you know, is there any way we can follow up on more, maybe they don’t want to offend their doctor, maybe they’re just afraid to do it. Do you have any piece of advice for that patient, just so they don’t get diagnosed in a later stage, if that is the reason why they might be diagnosed later, what would your advice be to that patient sitting there?

Dr. Shaakir Hasan:

Yeah, totally. So I think one would be surprised. First of all, never worry about offending your doctor. You know, that’s one thing that I start with. And it’s, and I say that a little tongue in cheek, but I actually mean that because there have been plenty of times where your doctor’s not trying to be dismissive, right? They’re not trying to just, obviously, you never want to be the one that missed something. You never want to be the one that bladder cancer, right?

And so you might just not be thinking about something at that moment, you might really be sitting there and going, oh, look, it’s very likely not this because I know my list of diagnoses. And I know like, what’s more common and what’s not, that’s part of my job. And so it’s not so much, you know, the attempts to offend or miss something. But the second you bring it up, the second that you advocate for yourself, far more likely, we’re far more likely to act on it.

And that’s just kind of a universal principle. There might be something that they missed, there might be, maybe you’re perimenopausal, and you haven’t had menses in a couple years, and the doctor just missed that. There could be something that you, you know your body, you should advocate for yourself in those situations, do not worry about offending, because honestly, you’re not like, I can’t really imagine I couldn’t, I’ll admit, there definitely been times where someone asked about something that I wasn’t thinking about, not intentionally. And I just Oh, yeah, of course, we’ll look into that. There’s no offense, you know, taken. So I wouldn’t worry about that.

And even if they were offended, this is your body, it could be life or death, you shouldn’t worry about that. The second thing I want to mention, though, is that, you know, it’s probably not as likely that everyone is seeking medical care, and then one is just being dismissed certainly is possible. Certainly, we do have evidence of that happening, and unfortunately in different situations, but it’s probably more a reflection of certain people will have primary care and certain people just don’t.

If you don’t have insurance, for example, you’re not as likely to go have a routine checkup. And these routine checkups, they’ll check the urine, they’ll do urinalysis, and you might not notice blood in the urine, but they can tell it microscopically. But if you’re not routinely doing this, as a screening process, then you’re not going to detect it. And so I think one recurring theme in healthcare in general is just preventive medicine. And I think that we really have to work hard to implement that for all groups. And certainly, there’s a disproportionate lower primary care coverage of certain minorities and socioeconomic groups that we really have to do better at. And I think that will translate into detecting more bladder cancer earlier for whatever ethnic group you want to.

Navigating Bladder Cancer Treatment: Understanding the Role of Academic and Community Centers

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In navigation of bladder cancer treatment, what role do academic and community centers take? Expert Dr. Shaakir Hasan from Beth Israel Lahey Health discusses efforts that have been taken to bridge the gap between academic and community care, goals of collaborative care, and proactive patient advice.

[ACT]IVATION TIP

“…do your own research. But don’t be so kind of close-minded to think, oh, academic center, that’s going to be the best quality care community center, that’s going to be subpar. No, dig a little bit deeper, ask specifically, what do you offer and try to do a little bit of your own research and say, is there bladder preservation? Is there immunotherapy? Do you offer clinical trials, and then kind of go from there.”

See More from [ACT]IVATED Bladder Cancer

Download Resource Guide | Descargar Guía

Related Programs:

Addressing Disparities in Bladder Cancer Diagnosis and Treatment

Addressing Disparities in Bladder Cancer Diagnosis and Treatment

 Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors

Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors

 Can Self-Advocacy Close the Gap in Bladder Cancer Outcomes?

Can Self-Advocacy Close the Gap in Bladder Cancer Outcomes?

Transcript:

Lisa Hatfield:

Dr. Hasan, what role do academic centers play in the treatment of bladder cancer, and why might patients at these centers receive different care compared to those at non-academic centers?

Dr. Shaakir Hasan:

So, the kind of “good answer” here is that they shouldn’t. There really shouldn’t be a difference in care. And I do think having been at many different types of institutions to the hardcore academics to community centers in rural communities, I have seen this transformation of, it used to be where you get the best care at these academic centers, and then you get very mediocre care at the rural communities. And they’ve made a conscious effort all throughout the country to bridge that gap.

And I think they’re doing a really good job, because you’ll like to see a lot of centers that will kind of bring everyone together and centralize the treatment, and then just kind of teach or kind of distribute the treatments the same way at other places. And I’ll also tell you that a lot of physicians are really good at what they do. A lot of times, the limitations are the resources, not so much skills or capabilities of a clinician.

So I would say as a patient, don’t be if you’re out in a rural community or a community center, don’t let that scare you or think that you’re going to get inadequate treatment, just because of that but do ask about the resources, do ask about the capabilities. If you’re in a radiation clinic, ask about the technology. If you’re in a medical oncology clinic, ask about immunotherapy and what’s available in clinical trials, et cetera. Now the question of academic centers is actually quite interesting because if you look at our research, if you look at the study that we did on bladder cancer, for example, you see that there is kind of a worse outcome at academic centers.

Now that’s not because, I don’t think that that’s because they’re doing a worse job. It’s just that patients tend to send more complicated cases to those centers, right? And so this is one of those, you know, correlation, not cusation things. And so if you look at the outcomes, you’re going to see probably worse outcomes at academic centers just because there are more complicated cases.

But if you try to isolate that, you know, stage for stage, we have to see that the results are quite similar, thankfully, alluding to kind of what I mentioned before, that the care should be starting to equalize among centers. And so I think that that’s kind of where we’re heading. What I do think academic centers might offer more so than communities is just specialized care. So if you have a urologist that all they do is bladder cancer, that’s all they do all day, that’s probably going to be someone that you want to seek out. And you know, I think a lot of urologists in the communities will say, “Hey, you got to go check out this person who only does bladder cancer.” And I think hopefully they’ll, you know, they’ll have that appropriate kind of referral pattern.

But on the other hand, there is something…there are other very simple procedures that anybody can do. And you should feel, you know, you should feel comfortable getting that done in the community. For radiation, I can tell you that there might be some specialized physicians that are only doing GU, and they have a bladder preservation program that might be done differently, implemented differently at an academic center than in the community.

But I’ll also say also caution patients, you know, there also may be some academic centers, and I’ve been at them that don’t have a program at all for bladder preservation. But there are some of the communities that do. So I think my kind of [ACT]IVATION tip here is do your own research. But don’t be so kind of close-minded to think, oh, academic center, that’s going to be the best quality care community center, that’s going to be subpar. No, dig a little bit deeper, ask specifically, what do you offer and try to do a little bit of your own research and say, is there bladder preservation? Is there immunotherapy? Do you offer clinical trials, and then kind of go from there.

Lisa Hatfield:

Okay. Thank you. That’s a great [ACT]IVATION tip. And I also like that you mentioned seeking out a specialist, I’m a huge advocate for that. I don’t have bladder cancer, I have another kind of cancer. But even if it’s just for an initial consult, or for a consultation about treatment, talk to somebody who deals with that on a very regular basis, or maybe exclusively, so thanks for that comment.

Dr. Shaakir Hasan:

And actually, I’ll follow up on that and also say, you know, sometimes it’s worth it just to get that opinion, and then have them help direct the care and be involved in your care. And they can always go back and say, “Oh, hey, let me talk to your local oncologist. I know you live 10 miles away from your local oncologist, you live three hours away from me. But we can still get you the same care, we’re going to be in communication, you’ll get my input, and then we’ll take care of you.” So yeah, it’s definitely more of a collaborative effort these days. And it’s for the better.

When Is Immunotherapy Recommended in Bladder Cancer?

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Bladder cancer immunotherapy is available, but which patients qualify for it? Expert Dr. Shaakir Hasan from Beth Israel Lahey Health discusses who is eligible for immunotherapy, patient factors that contraindicate against immunotherapy, and proactive patient advice to learn about immunotherapy. 

[ACT]IVATION TIP

“…ask about it just to ask your provider what’s going on with the immunotherapy? Any board-certified oncologist should be able to address it.”

See More from [ACT]IVATED Bladder Cancer

Download Resource Guide | Descargar Guía

Related Programs:

Bladder Cancer Awareness: The Power of Early Detection

Bladder Cancer Awareness: The Power of Early Detection

 Navigating Inequities in Diagnosis and Treatment of Bladder Cancer

Navigating Inequities in Diagnosis and Treatment of Bladder Cancer

 Bladder Cancer Breakthroughs: Immunotherapy and Preservation Strategies

Bladder Cancer Breakthroughs: Immunotherapy and Preservation Strategies

Transcript:

Lisa Hatfield:

Dr. Hasan, how do you determine which patients facing a bladder cancer diagnosis are suitable candidates for immunotherapy?

Dr. Shaakir Hasan:

Right now you don’t really want to be a suitable candidate for immunotherapy, because right now it’s indicated for those that have metastatic disease not curable disease. And they’re now doing, they’re doing clinical trials and to test immunotherapy in localized, curable disease. And I suspect we’re going to, it’s going to pan out. It’s going to be better than just classic chemo. But right now, you don’t want to be in that category. Now, if you do happen to be in that category, if you happen to have metastatic disease or incurable disease, there’s nothing that would stop you other than what we call contraindications, meaning specific conditions that prevent you from getting a treatment, because it can cause harm. But other than that, there’s nothing that should preclude you from getting immunotherapy.

And also the combination of an anti-drug, antibody drug conjugate to get the most optimal treatment. Sometimes because it does ramp up the immune system, you end up having, as a side effect, you can have what we call autoimmune conditions because the immune system is so ramped up, it can not only attack these cancer cells, but also attack your healthy tissue in a way we don’t want to. And that can adversely affect you.

So you can have what we call the itises, the inflammatory effects of different organs. Pneumonitis is inflammation of the lungs, colitis is inflammation of the colon, just to name a couple. And that can be problematic. So if you’re predisposed of these conditions, if you already have autoimmune conditions, then you might be more susceptible to what immunotherapy can cause and that might be a contraindication. But otherwise there really should be no reason you couldn’t get immunotherapy, and it’s definitely worth having a conversation with your oncologist.

Lisa Hatfield:

Okay. Thank you. So you talked about the contraindications for that, but are there any specific biomarkers of bladder cancer or characteristics of the cancer itself that influenced that decision for immunotherapy?

Dr. Shaakir Hasan:

So classically, we look at, what we call PD-L1, and that’s the ligand. It’s the protein on the cells that that’s expressed at a certain rate. That’s what the immunotherapy binds onto to initiate this cascade, which it heightens the immune system. And so some of these cancer cells have a higher expression of that protein, and therefore will be more susceptible to it. So we classically kind of look at that expression and then correlate that with your, how well you would do with immunotherapy. However, there are many instances, for example, lung, head, and neck and bladder, where it doesn’t even matter independently of the expression of the PD-L1. You can still benefit from it. Now you might benefit to a different degree, but in this case, we would recommend it regardless of your PD-L1 status.

Lisa Hatfield:

Okay. Great. Thank you, do you have any [ACT]IVATION tips for the immunotherapy question?

Dr. Shaakir Hasan :

I would just say, again, if it’s not mentioned at all, that’s a little strange. Particularly in the metastatic setting, you should always bring it up to your provider, at any stage. Like I said, right now it’s indicated FDA-approved in the metastatic stage, but in any capacity, it should be something that’s addressed by your oncologist. So I would simply, as an [ACT]IVATION tip, ask about it just to ask your provider what’s going on with the immunotherapy? Any board-certified oncologist should be able to address it.

Bladder Cancer Breakthroughs: Immunotherapy and Preservation Strategies

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Bladder cancer treatment has some new options for patient care. Expert Dr. Shaakir Hasan from Beth Israel Lahey Health shares an overview of the latest treatment options, how they work against bladder cancer, access to the treatments, and proactive patient advice to help ensure optimal care. 

[ACT]IVATION TIP

“…don’t kind of settle for just if they just give you one approach and that’s it, they don’t mention anything else. You’ve got to question that a little bit. But the vast majority of providers will at least tell you…acknowledge that there are other options out there.”

See More from [ACT]IVATED Bladder Cancer

Download Resource Guide | Descargar Guía

Related Programs:

Bladder Cancer Awareness: The Power of Early Detection

Bladder Cancer Awareness: The Power of Early Detection

 Navigating Inequities in Diagnosis and Treatment of Bladder Cancer

Navigating Inequities in Diagnosis and Treatment of Bladder Cancer

 When Is Immunotherapy Recommended in Bladder Cancer?

When Is Immunotherapy Recommended in Bladder Cancer?

Transcript:

Lisa Hatfield:

Dr. Hasan, can you provide an overview of the latest treatment options for advanced bladder cancer, and in particular, the role of immunotherapy and how it works to treat bladder cancer?

Dr. Shaakir Hasan:

Absolutely. So this is a really exciting time in bladder cancer treatment because for a couple reasons. I’d say there are two kind of main frontiers. I’ll address the immunotherapy first. So for the longest time, we were treating bladder cancer, particularly metastatic bladder cancer, i.e., Incurable bladder cancer with platinum-based chemotherapy. So chemotherapy is cytotoxic, meaning it goes, and it’s all throughout your body. It’s systemic, and it kind of kills everything. It attacks everything. Tumor cells are more susceptible to this type of treatment because they have high cell turnover, and as they turn over, they’re more exposed. Your DNA is more exposed to these mechanisms of cell kill. And so they’re differentially affected, but it still does a number on the rest of the healthy tissue in your body. Immunotherapy is newer, and it’s a type of treatment that inhibits the inhibition of your own immune system.

In other words, it helps the immune system work better. And that’s important, because the immune system is one of the main tools in fighting cancer. It does recognize these cancerous cells as not necessarily foreign, but abnormal cells that shouldn’t be there. And so it does help your body attack those cells. And when it does that, it’s more selective than the cytotoxic classic chemotherapy that we use. And so we’re adopting this immunotherapy in more and more cancers. Bladder is one of them, and just, I want to say in the past six months, they had a really big study that compared classic platinum-based therapy to a combination of pembrolizumab (Keytruda) and enfortumab vedotin-ejfv (Padcev), which it’s called an antibody drug conjugate, an ADC. It’s another mechanism that it works in conjunction with immunotherapy to kind of better isolate these tumor cells to destroy them.

And that showed a dramatic increase in survival and disease control compared to classic chemotherapy. So, that’s doing really well, and we hope to see that more earlier in more curable stages of disease as well. So that’s an exciting frontier. The other aspect I would say is we’re seeing more and more bladder preservation. Now, I’m a radiation oncologist. I might be biased in this topic, but historically we’ve always treated curable bladder cancer with a combination of chemotherapy and surgery. So you remove the bladder in its entirety, you remove the cancer with it, and then you give systemic therapy to prevent any stragglers, we’ll call them cancer cells that are just left behind.

And this has been effective, but of course you lose your bladder. And so this is some at the end of the day, if you can preserve it, if you can preserve the organs you were born with, you want to do that. And if you, instead of doing a cystectomy, which is removal of the bladder, if you do a combination of chemotherapy and radiotherapy, and probably in the future immunotherapy altogether, you can have the same chances of cure, same chances of survival, but preserve the bladder. So we’re seeing that more and more these days.

Lisa Hatfield:

Okay, thank you. I do have a follow-up question to that also. So if a patient’s watching this maybe lives in a smaller community, doesn’t live near a big academic center, are these immunotherapies in clinical trials only, or are they being used at more local centers? And then also for things like radiotherapy how about that type of therapy also, can they access that at their local cancer center?

Dr. Shaakir Hasan:

Great question. So immunotherapy at this point really should be everywhere. It really really should be everywhere. It should not be difficult to access, whether you’re in a rural community or in a big level four academic center. Radiation can be more variable, not because of the access, because frankly, you should be able to find a radiation oncology clinic within I don’t know, a half-hour of anywhere that you are in the country there are enough of those clinics in the country. However, it just varies place to place as to the types of treatments that they’re comfortable doing. And also as an institution it is a multimodality approach. You have to have a urologist to buy in. You have to have the medical oncologist to buy in and the radiation oncologist to buy in. And that can just change institution to institution.

In either scenario, when it comes to an [ACT]IVATION tip, I would say do not settle for what’s offered to you if you know that these other options are available. So, you do a simple Google and you find out what are the treatment options available, and then you just mention them to your local oncologist. And the vast majority of them, whether they provide them or not, will tell you, oh yeah, that is an option. We don’t do that here, but please check out these other places. And, so don’t kind of settle for just if they just give you one approach and that’s it, they don’t mention anything else. You’ve got to question that a little bit. But the vast majority of providers will at least tell you…acknowledge that there are other options out there.

The Pro-Active Bladder Cancer Patient Toolkit Resource Guide

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A Patient’s Perspective | Participating in a Clinical Trial

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A Patient’s Perspective | Participating in a Clinical Trial from Patient Empowerment Network on Vimeo.

Colorectal cancer survivor Cindi Terwoord recounts her clinical trial experience and explains why she believes patients should consider trial participation.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Cindi Terwoord is a colorectal cancer survivor and patient advocate. Learn more about Cindi, here.

See More from Clinical Trials 101

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A Patient Shares Her Clinical Trial Experience

 If I Participate in a Clinical Trial, Will I Be a Guinea Pig?

 Are Clinical Trials a Logistical Nightmare?

Transcript:

Katherine Banwell:    

Cindi, you were diagnosed with stage IV colorectal cancer, and decided to participate in a clinic trial. Can you tell us about what it was like when you were diagnosed?

Cindi Terwoord:        

Yeah. That was in September of 2019, and I had had some problems; bloody diarrhea one evening, and then the next morning the same thing. So, I called my husband at work, I said, “Things aren’t looking right. I think I’d better go to the emergency room.”

And so, we went there, they took blood work – so I think they knew something was going on – and said, “We’re going to keep you for observation.” So, then I knew it must’ve been something bad. And so, two days later, then I had a colonoscopy, and that’s when they found the tumor, and so that was the beginning of my journey.

Katherine Banwell:    

Mm-hmm. Had you had a colonoscopy before, or was that your first one?

Cindi Terwoord:        

No, I had screenings, I would get screenings. I had heard a lot of bad things about colonoscopies, and complications and that, so I was always very leery of doing that. Shame on me. I go for my other screenings, but I didn’t like to do that one. I have those down pat now, I’m very good at those.

Katherine Banwell:    

Yeah, I’m sure you do. So, Cindi, what helped guide your decision to join a clinical trial?

Cindi Terwoord:        

Well, I have a friend – it was very interesting.

He was probably one of the first people we told, because he had all sorts of cancer, and he was, I believe, one of the first patients in the nation to take part in this trial. It’s nivolumab (Opdivo), and he’s been on it for about seven years. And he had had various cancers would crop up, but it was keeping him alive.

And so, frankly, I didn’t know I was going to have the option of a trial, but he told me run straight to Cleveland Clinic, it’s one of the best hospitals. So, I took his advice. And the first day the doctor walked in, and then all these people walked in, and I’m like, “Why do I have so many people in here?” Not just a doctor and a nurse. There was like a whole – this is interesting.

And so, then they said, “Well, we have something to offer you. And we have this immunotherapy trial, and you would be one of the first patients to try this.”

Now, when they said first patient, I’m not quite sure if they meant the first colon cancer patient, I’m not sure. But they told me the name of it, and I said, “I’m in. I’m in.” Because I knew my friend had survived all these years, and I thought, “Well, I’ve gotten the worst diagnosis I can have, what do I have to lose?” So, I said, “I’m on board, I’m on board.”

Katherine Banwell:    

Mm-hmm. Did you have any hesitations?

Cindi Terwoord:        

Nope. No, I’m an optimistic person, and what they assured me was that I could drop out at any time, which I liked that option.

Because I go, “Well, if I’m not feeling well, and it’s not working, I’ll get out.” So, I liked that part of it. I also liked, as Dr. Funchain had said, you go in for more visits. And I like being closely monitored, I felt that was very good.

I’ve always kept very good track of my health. I get my records, I get my office notes from my doctor. I’m one of those people. I probably know the results of blood tests before the doctor does because I’m looking them up. So, I felt very confident in their care. They watched me like a hawk. I kept a diary because they were asking me so many questions.

Katherine Banwell:    

Oh, good for you.

Cindi Terwoord:        

I’m a transcriptionist, so I just typed out all my notes, and I’d hand it to them.

Katherine Banwell:    

That’s a great idea.

Cindi Terwoord:        

Here’s how I’m feeling, here’s…And I was very lucky I didn’t have many side effects.

Katherine Banwell:    

In your conversations with your doctor, did you weigh the pros and cons about joining a trial? Or had you already made up your mind that yes, indeed, you were going for it?

Cindi Terwoord:        

Yeah, I already said, “I’m in, I’m in.” Like I said, it had kept my friend alive for these many years, he’s still on it, and I had no hesitation whatsoever.

I wish more people – I wanted to get out there and talk to every patient in the waiting room and say, “Do it, do it.”

I mean, you can’t start chemotherapy then get in the trial. And if I ever hear of someone that has cancer, I ask them, “Well, were you given the option to get into a trial?” Well, and then some of them had started the chemo before they even thought of that.

Katherine Banwell:    

Mm-hmm. So, how are you doing now, Cindi? How are you feeling?

Cindi Terwoord:        

Good, good, I’m doing fantastic, thank goodness, and staying healthy. I’m big into herbal supplements, always was, so I keep those up, and I’m exercising. I’m pretty much back to normal –

Katherine Banwell:

Cindi, what advice do you have for patients who may be considering participating in a trial? 

Cindi Terwoord:

Do it. Like I said, I don’t see any downside to it. You want to get better as quickly as possible, and this could help accelerate your recovery. And everything Dr. Funchain mentioned, as far as – I really never brought up any questions about whether it would be covered. 

And then somewhere along the line, one of the research people said, “Well, anything the trial research group needs done – like the blood draws – that’s not charged to your insurance.” So, that was nice, that was very encouraging, because I think everybody’s afraid your insurance is going to drop you or something.  

And then the first day I was in there for treatment, a social worker came in, and they talked to you. “Do you need financial help? We also have art therapy, music therapy,” so that was very helpful. I mean, she came in and said, “I’m a social worker,” and I’m like, “Oh, okay. I didn’t know somebody was coming in here to talk to me.” 

But that was all very helpful, and I did get free parking for a few weeks. I mean, sometimes I’d have to remind them. I’d say, “It’s costing me more to park than to get treated.” But, yeah, like I said, I’m a big advocate for it, because you hear so many positive outcomes from immunotherapy trials, and boy, I’d say if you’re a candidate, do it. 

Katherine Banwell:

Dr. Funchain, do you have any final thoughts that you’d like to leave the audience with? 

Dr. Pauline Funchain:

First, Cindi, I have to say thank you. I say thank you to every clinical trial participant, everybody who participates in the science. Because honestly, whether you give blood, or you try a new drug, I think people don’t understand how many other lives they touch when they do that.  

It’s really incredible. Coming into clinic day in and day out, we get to see – I mean, really, even within a year or two years, there are people that we’ve seen on clinical trial that we’re now treating normally, standardly, insurance is paying for it, it’s all standard of care. And those are even the people we can see, and there are so many people we can’t see in other centers all over the world, and people who will go on after us, right?  

 So, it’s an amazing – I wouldn’t even consider most of the time that it’s a personal sacrifice. There are a couple more visits and things like that, but it is an incredible gift that people do, in terms of getting trials. And then for some of those trials, people have some amazing results. 

And so, just the opportunity to have patients get an outcome that wouldn’t have existed without that trial, like Cindi, is incredible, incredible. 

What Are the Risks and Benefits of Joining a Clinical Trial?

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What Are the Risks and Benefits of Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.

Why should a cancer patient consider a clinical trial? Dr. Pauline Funchain of the Cleveland Clinic explains the advantages of clinical trial participation.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

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Transcript:

Katherine Banwell:

Why would a cancer patient consider participating in a clinical trial? What are the benefits? 

Dr. Pauline Funchain:

So, I mean, the number one benefit, I think, for everyone, including the cancer patient, is really clinical trials help us help the patient, and help us help future patients, really.  

We learn more about what good practices are in the future, what better drugs there are for us, what better regimens there are for us, by doing these trials. And ideally, everyone would participate in a trial, but it’s a very personal decision, so we weigh all the risks and benefits. I think that is the main reason.  

I think a couple of other good reasons to consider a trial would be the chance to see a drug that a person might not otherwise have access to. So, a lot of the drugs in clinical trials are brand new, or the way they’re sequenced are brand new. And so, this is a chance to be able to have a body, or a cancer, see something else that wouldn’t otherwise be available.  

And I think the last thing – and this is sort of the thing we don’t talk about as much – but really, because clinical trials are designed to be as safe as possible, and because they are new procedures, there’s a lot of safety protocols that are involved with them, which means a lot of eyes are on somebody going through a clinical trial.  

Which actually to me means a little bit sort of more love and care from a lot more people. It’s not that the standard of care – there’s plenty of love and care and plenty of people, but this doubles or triples the amount of eyes on a person going through a trial. 

Katherine Banwell:

Yeah. When it comes to having a conversation with their doctor, how can a patient best weigh the risks and benefits to determine whether a trial is right for them? 

Dr. Pauline Funchain:

Right. So, I think that’s a very personal decision, and that’s something that a person with cancer would be talking to their physician about very carefully to really understand what the risks are for them, what the benefits are for them. Because for everybody, risks and benefits are totally different. So, I think it’s really important to sort of understand the general concept. It’s a new drug, we don’t always know whether it will or will not work. And there tend to be more visits, just because people are under more surveillance in a trial.  

So, sort of getting all the subtleties of what those risks and benefits are, I think, are really important. 

Katherine Banwell:

Mm-hmm. What are some key questions that patients should ask? 

Dr. Pauline Funchain:

Well, I think the first question that any patient should ask is, “Is there a trial for me?” I think that every patient needs to know is that an option. It isn’t an option for everyone. And if it is, I think it’s – everybody wants that Plan A, B, and C, right? You want to know what your Plan A, B, and C are. If one of them includes a trial, and what the order might be for the particular person, in terms of whether a trial is Plan A, B, or C. 

What Do You Need To Know About Bladder Cancer? 

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What Do You Need To Know About Bladder Cancer?  from Patient Empowerment Network on Vimeo.

What should you or your loved ones know following a bladder cancer diagnosis? This animated video reviews the diagnosis and types of bladder cancer, current treatment options, and key advice for taking an active role in your care.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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The Importance of Patient Self-Advocacy in Bladder Cancer Treatment

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 Current Treatment Approaches for Bladder Cancer

Current Treatment Approaches for Bladder Cancer

Transcript:

What do you need to know if you or a loved one has been diagnosed with bladder cancer? 

Bladder cancer occurs when cells in the urinary bladder grow out of control. As more cancer cells develop, they can form a tumor. And, over time, may spread to other parts of the body.  

The most common type of bladder cancer is transitional cell carcinoma or T.C.C.. This may also be referred to as urothelial carcinoma. Other subtypes include: Squamous cell carcinoma, adenocarcinoma, small cell bladder cancer and, sarcomatoid carcinoma. 

How bladder cancer is treated depends on the stage. The stages of bladder cancer include: Stage 1, which indicates that the cancer is growing in the inner lining layer of the bladder only.  Stage 2 occurs when the cancer is growing into the inner or outer muscle layer of the bladder wall. Stage 3 means that the cancer has grown beyond the muscle layer and into fatty tissue that surrounds the bladder. And, Stage 4 indicates that the cancer is growing outside of the pelvic region and has spread to distant sites, such as the lung, liver, or bones. When cancer has spread to other organs in the body, it is considered metastatic cancer. 

When making a treatment choice, your doctor may also consider age, any comorbidities, potential side effects, and the results of biomarker testing, as well as that patient’s preference. 

So, what are the treatment options for bladder cancer? For early stage, or non-muscle-invasive, bladder cancer patients, doctors may use a form of immunotherapy instilled in the bladder called B.C.G. which stands for Bacillus Calmette-Guerin. B.C.G. is used to inhibit the cancer’s growth and prevent recurrence.  

If patients do not respond or recur after B.C.G., a radical cystectomy – a surgical procedure to remove the bladder, is offered.  In select patients, pembrolizumab, a form of immunotherapy, can be used as an alternative. 

For localized bladder cancer invading the muscle, treatment is typically chemotherapy, followed by surgery. Tri-modality treatment using chemotherapy along with radiation is an option for patients who are not candidates for surgery – or refuse surgery – and who meet criteria for bladder preservation.   

Surgery, including a urostomy where the bladder is removed and replaced with a stoma outside of their bodies, is a major procedure reserved for patients who are very fit with low comorbidities. 

Now that you understand a little more about your bladder cancer and treatment options, how can you take an active role in your care? 

First, continue to educate yourself about your condition. Ask your doctor for patient resources or visit powerfulpatients.org/bladdercancer for more information.  

Understand the goals of your treatment and ask whether a clinical trial might be right for you.  

You should also consider a second opinion or consult with a specialist following a diagnosis.  

Try to write down your questions before and during your appointments.  And bring a friend or loved one to your appointments to help you recall information and to keep track of important details.  

Finally, remember that you have a voice in your care. Don’t hesitate to ask questions and to share your concerns. You are your own best advocate. 

To learn more about bladder cancer and to access tools for self-advocacy, visit powerfulpatients.org/bladdercancer.  

Expert Update: Bladder Cancer Treatment & Research News

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Expert Update: Bladder Cancer Treatment & Research News  from Patient Empowerment Network on Vimeo.

Dr. Fern Anari reviews highlights from the ASCO 2022 meeting and shares her expert perspective on the future of bladder cancer treatment.

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the department of hematology/oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

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Current Treatment Approaches for Bladder Cancer

Transcript:

Katherine Banwell:

Dr. Anari, cancer researchers recently came together for the 2022 ASCO meeting. Were there any highlights from that meeting that bladder cancer patients should know about?  

Dr. Anari:

Yes. So, our annual meetings are always a really exciting time to learn about and share the results of really cutting-edge research that’s been going on. And this year at ASCO 2022, I think there were several standout studies for various stages of bladder cancer. 

So, in patients with localized bladder cancer, again, similarly to what we discussed with immunotherapy and what we call BCG unresponsive bladder cancer, they looked at combining BCG with another new drug. And what they found is that the cancer shrunk down completely in over two-thirds of cases. 

And those responses tend to last over two years of follow-up. The drug was shown to be safe and tolerable. So, I think that’s a really exciting potential future treatment for people. There was another study that looked at a targeted treatment called enfortumab vedotin, which is typically used in the metastatic setting after someone’s received chemotherapy and/or immunotherapy. They looked at using that before surgery in localized muscle-invasive bladder cancer. 

The reason it’s important to look at drugs like this is because the standard of care right now is to give cisplatin-based chemotherapy before surgery to remove the bladder.  

But not everyone is eligible to get that cisplatin drug for various reasons. So, the current standard of care is to just go straight to surgery. But we know that by giving some form of a chemotherapy before, that helps increase cure rates. 

And what they actually found in this study looking at enfortumab vedotin is that they were able to shrink down cancer completely, meaning at the time of surgery there was no cancer left in the bladder 36% of the time, which is actually on par with our standard of care treatment that we use today.  

So, I think this also shows a lot of promise in patients who historically would need to go straight to surgery without any preoperative treatment. And then, lastly, HER2 is a type of targeted therapy as well that’s most commonly known in the breast cancer treatment world. But it’s also been looked at in bladder cancer.  

And there’s a new drug that’s being studied that really strongly targets HER2, which is expressed on some bladder cancer cells. So, they’re looking at this new drug in combination with immunotherapy, which is already approved in bladder cancer. And, again, I think this is another really promising combination for patients who’ve already received other treatments for their bladder cancer.   

Katherine Banwell:

It sounds like a lot of progress is being made in the field.  What are you excited about when it comes to bladder cancer research?   

Dr. Anari:

I think what excites me the most is being able to offer patients both the standard treatment options where, really, the clinical trials of yesterday are our standard treatments today. So, I’m excited to be able to offer them the standard treatment but also give them the background of why that’s approved and why we use it but also give them the hope that we have these really promising drugs.  

And, luckily, at our cancer center, we have access to a lot of these before they’re approved by the FDA. So, it’s really exciting to be able to offer this cutting-edge research in the form of treatments to our patients. 

How Does Immunotherapy Treat Bladder Cancer?

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How Does Immunotherapy Treat Bladder Cancer?  from Patient Empowerment Network on Vimeo.

Dr. Fern Anari from Fox Chase Cancer Center explains immunotherapy and how this therapy works to treat bladder cancer. Dr. Anari also discusses the importance of communicating how you’re feeling with your healthcare team.

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the Department of Hematology/Oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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Transcript:

Katherine Banwell:

What is immunotherapy and how does it work to treat bladder cancer?  

Dr. Anari:

So, immunotherapy, the analogy that I often use when I see patients is immunotherapy goes in by IV, and it acts as the drill sergeant. And it trains your own body’s immune system or the soldiers to find and fight the cancer cells. So, that’s really how it really works. The drug itself is training your own body to do the work. 

Most people will have no side effects from this. And they tolerate it really well. However, because the immune system is getting a little bit activated, sometimes those soldiers or your immune cells can go rogue. And they can start attacking normal healthy tissue in the body, almost like an autoimmune disease. 

So, when on these drugs, it’s really important if anything is new or different to let your doctors know, because it’s often easy to troubleshoot over the phone or at a quick office visit if it’s related to immunotherapy or not. So, it’s really important that you keep that in mind whenever a new symptom or anything may pop up.  

Katherine Banwell:

That’s great information – it’s really important to communicate any issues you may be having. So, who is immunotherapy right for? Is it right for every bladder cancer patient?  

Dr. Anari:

So, immunotherapy is used in several different settings for bladder cancer treatment. It’s used in the metastatic bladder cancer treatment world mostly. Often, we use it as either a second-line treatment after chemotherapy or in a maintenance-type approach after someone’s completed their chemotherapy, meaning we plan for about two years of treatment. And patients that can’t get chemotherapy for whatever reason we can use immunotherapy as a first-line treatment.  

And it’s also used in localized bladder cancer meaning cancer that’s contained only to the lining of the bladder in patients who’ve gotten treatments that go inside the bladder called BCG. When their cancer isn’t responding, immunotherapy is also an option there.  

Katherine Banwell:

And what might be some of those side effects that patients should look out for?  

Dr. Anari:

So, what I tell everyone is they can get inflammation or an “itis” of anything. So, some examples of that: If someone has a rash, that’s called dermatitis. That can be mild, or it can be severe. If someone has inflammation of the bowels or colitis, they can have diarrhea that starts all of a sudden.  

Another example is pneumonitis or inflammation of the lungs. People may have cough, trouble breathing, low oxygen levels. It really can affect any organ system that you have. So, that’s why it’s really important if something feels different to let your doctors know.   

It’s also really important if you’re not near your doctor for whatever reason and you end up seeing a local doctor, let’s say, at an emergency room that you let them know that you’ve received immunotherapy because they’ll think about the problems that you’re having a little bit differently.  

How Does Targeted Therapy Treat Bladder Cancer?

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How Does Targeted Therapy Treat Bladder Cancer?  from Patient Empowerment Network on Vimeo.

Dr. Fern Anari, a bladder cancer specialist from Fox Chase Cancer Center, explains how targeted therapy works and which type of patient this therapy is most appropriate for. 

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the Department of Hematology/Oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

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Transcript:

Katherine Banwell:

What is targeted therapy, and how does it work to treat bladder cancer?  

Dr. Anari:

So, targeted therapy is really a newer, more tailored approach to treating certain types of bladder cancer. Targeted treatments because they’re targeted have most of their effect on the cancer cells. Although, obviously, there’s other potential side effects. But the way it works to treat bladder cancer really depends on the different types. There are several different targeted treatments out there.   

Often, targeted treatments are approved for people after they’ve gotten chemotherapy and/or immunotherapy for their bladder cancer treatments. There are several different ones out there. Erdafitinib is one of them. It’s a pill. It’s approved for patients who have an FGFR alteration.  

Well, what is that? It’s something that your doctor finds by getting the DNA or genetic makeup of your cancer cells. So, those pills are available to people with that certain alteration that’s found on special testing. 

With these pills, potential side effects – we talked about how the effects are mostly on the cancer cells. But there are other side effects that we have to keep in mind. This drug in particular can have different eye disorders. So, we work closely with ophthalmologists.  

And then we check blood work because people can have high phosphate levels in the blood. Phosphate levels can be controlled often with diet, sometimes with medications, and sometimes with just adjusting the dose of the pill itself.  

Katherine Banwell:

You mentioned the FGFR genetic alteration. Should bladder cancer patients undergo molecular testing?  

Dr. Anari:

So, the most common place where we do that is when people have metastatic bladder cancer. It’s a good idea to test the biopsy sample or bladder cancer sample that’s already been removed.  

That way we get this information. While it doesn’t always change the up-front treatment for bladder cancer, it is really important to know really what tools in our toolbox we have for the treatment of bladder cancer.  

Be Empowered in Your Care

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Be Empowered in Your Care  from Patient Empowerment Network on Vimeo.

When patients are empowered, they feel informed and confident when talking to their healthcare team about their care. Bladder cancer expert Dr. Fern Anari describes how she empowers her patients.

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the department of hematology/oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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Transcript:

Katherine Banwell:

When patients are empowered, they feel informed and confident when talking to their healthcare team about their care. As an oncologist treating bladder cancer, how do you empower your patients?  

Dr. Anari:

There are great online references that will help. Often, doctors will tell their patients not to Google. But that’s not always the right thing. I just think you just have to provide them with the right resources. So, through our cancer center and through many cancer centers, there’s patient advocacy groups. There are support groups. So, those are great places to get information.  

There’s also something called the Bladder Cancer Advocacy Network, which has great information for both physicians and for patients and really helps guide people through their journey and give them a little bit more information that then helps guide questions when they do see their doctors.  

Why Should Bladder Cancer Patients See a Specialist?

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Why Should Bladder Cancer Patients See a Specialist?  from Patient Empowerment Network on Vimeo.

Dr. Fern Anari from Fox Chase Cancer Center reviews the benefits of seeing a specialist for a consultation following a bladder cancer diagnosis.

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the Department of Hematology/Oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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Transcript:

Katherine Banwell:

Why should patients consider seeing a bladder cancer specialist? And how can they find a specialist?   

Dr. Anari:

So, I think, always, you can speak with your primary care doctor or your local urologist. They’ll know the bladder cancer specialist in the area. I think it’s important to see a bladder cancer specialist, because the field of oncology is always changing. So, you want to be treated by someone who really is the most up to date on treating bladder cancer. 

Bladder cancer specialists may also have access to cutting-edge clinical trials, which you may be interested in. So, it’s nice to know what both the standard options are but also the clinical trial options to see what the best fit is for you.  

Katherine Banwell:

What advice do you have for patients that may feel like they are hurting their doctor’s feelings by seeking a second opinion?  

Dr. Anari:

So, if my patient is interested in getting a second opinion, I always encourage it. And I actually give them recommendations on people to see. I think very few providers will feel offended or upset by one of their patients requesting a second opinion. At the end of the day, each person’s cancer journey is different. And each person needs to feel comfortable with their own treatment plan. 

And by getting a second opinion, they may have treatment options available to them that weren’t otherwise available. So, it’s always nice to know what’s out there.  

Key Advice for Newly Diagnosed Bladder Cancer Patients

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Key Advice for Newly Diagnosed Bladder Cancer Patients  from Patient Empowerment Network on Vimeo.

When you or a loved one has been diagnosed with bladder cancer, it can feel overwhelming. Where do you start? Bladder cancer expert Dr. Fern Anari shares key advice for newly diagnosed patients.

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the Department of Hematology/Oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

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Why Should Bladder Cancer Patients See a Specialist?

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Bladder Cancer Treatment Decisions: What’s Right for You?

Transcript:

Katherine Banwell:

Dr. Anari, what are three key pieces of advice that you have for a patient who has just been diagnosed with bladder cancer?  

Dr. Anari:

I think probably my number one piece of advice is come to the first oncology appointment with an open mind and an extra set of ears. I think there’s always a lot of information to digest and cover at that first visit. So, it’s always great to have a loved one there to support you and also absorb the information as well.   

Probably another piece of advice is to go somewhere where they can provide you with multidisciplinary care. There’s not just one specialist who treats bladder cancer. Often, we work collaboratively between medical oncology, radiation oncology, and urologic oncology. 

So, it’s important that the whole team really works together to formulate the right plan for you. And then lastly, it’s really difficult, but stay positive because I think it’s important to know that no matter what you encounter along the way, your doctor is always going to have a plan for you. So, that’s probably the three most important pieces of advice.  

Participating in a Clinical Trial: What You Need to Know Resource Guide

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