Silent Symptoms: A Young Man’s Battle with Bladder Cancer
Trevor, a 35-year-old father, athlete, and bladder cancer survivor, shares his powerful story of resilience and advocacy. As a young Black man navigating a diagnosis often associated with older adults, Trevor opens up about the early symptoms he brushed off, the shock of diagnosis, and how being ACTIVATED helped him take control of his care.
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What Are Common Bladder Cancer Myths and Resolutions for Underrepresented Patients? |
Bladder Cancer Diagnosis and Treatment: Barriers to Timely Response |
Transcript:
Being ACTIVATED can make all the difference in bladder cancer care, especially for patients like me.
I’m Trevor, a 35-year-old Black man, and both my age and race place me at the intersection of some serious disparities in bladder cancer outcomes. I’m sharing my story to raise awareness, in hopes that it encourages others not to ignore symptoms that may seem minor at first, but could be signaling something much more serious.
It started with feeling more tired than usual and a nagging lower back pain on one side. I brushed it off, thinking I was just recovering from a physically demanding vacation. Life was busy, so I didn’t dwell on it. But as my routine check-up approached, I kept the appointment, just to be safe. Then things changed. I began experiencing swelling in my feet and, at times, struggled to urinate. That’s when I knew something wasn’t right.
After an abnormal urine test, my doctor ordered more tests, a CT scan and a cystoscopy. The results confirmed what I never expected: bladder cancer.
I was lucky to be referred to a urologic oncologist who made me feel like a partner in my care. That mattered more than I can explain. Even though the diagnosis was a shock, I didn’t feel alone. We talked through my treatment options and decided on a combination of chemotherapy and radiation. I stuck to a regular scan schedule afterward, and thankfully, I remained cancer-free for two years.
Then, a new tumor appeared.
This time, I had questions. I wasn’t sure I wanted to go through chemo and radiation again. I asked my doctor about clinical trials, and she recommended an immunotherapy trial that would use my own immune cells to fight the cancer. I was blown away that this was even an option. After weighing the risks and benefits, I decided to go for it. And I’m so glad I did. Despite this rollercoaster, I am most grateful to know that other treatment options exist, thanks in part to people who’ve participated in clinical trials, just like I did.
Today, I’m cancer-free again and back to living fully. I’m playing recreational sports, chasing after my kids, and holding on tight to every moment.
Now, I’m committed to spreading the word about the disparities Black patients face in bladder cancer. We’re more likely to be diagnosed at later stages, and at higher risk for metastatic disease. That’s why we need to stay ACTIVATED.
Be mindful of symptoms: swelling in the feet, trouble urinating, one-sided lower back pain, fatigue, abdominal pain, loss of appetite, and unexplained weight loss. Don’t ignore them. Speak up. Ask questions. Get checked.
Because when it comes to bladder cancer, being informed and proactive isn’t just important, it can save your life.
More Than Medicine | Breaking Barriers in Bladder Cancer Care
Dr. Randy Vince shares how the loss of his grandmother to kidney cancer shaped his perspective and approach to patient care. Drawing from his lived experience, he discusses the critical importance of addressing systemic barriers and ensuring patients, especially those who delay care, feel supported, informed, and empowered. Dr. Randy Vince.
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What Are Common Bladder Cancer Myths and Resolutions for Underrepresented Patients? |
Bladder Cancer Diagnosis and Treatment: Barriers to Timely Response |
Transcript:
Lisa Hatfield:
Dr. Vince, your grandmother’s experience with kidney cancer profoundly influenced your career path. And I’m sorry about that loss. I’m sorry to hear that.
Dr. Randy Vince:
Thank you. I appreciate it.
Lisa Hatfield:
How does that personal loss inform your approach to working with bladder cancer patients who may have delayed seeking care due to similar systemic barriers?
Dr. Randy Vince:
Yeah. So I’ll start by saying the experience of losing my grandmother, and if it’s okay, I just want to give a little bit of background to why she was so important to me is, you know, at a time when I was a teenager, you know, growing up, there were a lot of influences that at any given time, if I would have made a wrong decision, I would…I would have lost my life or spent the majority of my life in prison.
And this was, you know, both of my grandmothers, but specifically the one grandmother I lost to kidney cancer. Losing her again, kind of it started to shape my perspective in terms of how I would want to deliver health care as a physician. And it was because she was so influential, so influential in my life. And oftentimes, when I didn’t always do the right thing, she would be that person that would kind of bring me back and love on me and care for me. And so, it was very tragic losing her. And so, that experience shaped me in so many different ways that extend far beyond my career. However, when it comes to my approach as a physician, as a surgeon who treats cancer patients, I started to view my role in different lenses.
And so, I almost think of it as I have to have, I have different jobs when it comes down to helping patients navigate that cancer journey, right. So, we’re starting off, and I told you, I look at it as a spectrum in terms of, you know, screening, diagnosis, treatment and outcomes, or, you know, survivorship. And so, the first job is just really as an educator, because I want my patients. I know the receipt of a cancer diagnosis is devastating, but I want my patients to understand everything about their diagnosis when they leave my office. I want them to be able to explain things to their family members and their loved ones and feel confident and knowledgeable when they explain these things about their diagnosis to their family members and loved ones.
So, first as an educator, second, as a consoler, you know, during these appointments, which may run longer than, you know, the typical doctor’s time frame that we’re supposed to take with appointments. And that’s fine. I don’t care about the time, I care about the patients. I take time to empathize with my patients. I want them to know that they’re not in this fight alone and that I’m here with them and that I will do everything in my power to help them along this journey, and that, again, I’m in this fight with them.
And the other thing is, oftentimes when we think of cancer, the psychological impact it has is it takes us right to, oh, my gosh, how much longer do I have to live? And for the vast majority of cases, a cancer diagnosis is not a death sentence. So, I want them to know that I’m empathizing with them, But I also want them to know that just because you have a cancer diagnosis does not mean that you only have six months left to live, which is what we traditionally think of, because a lot of people who we knew have cancers of different types had stage IV cancer, and that was the reason why their livelihood was cut short.
And then thirdly, that I’m a healer. I walk through all of the steps of the treatment journey with my patients and just try to make sure that they understand every step of that process. I always coordinate that care with my colleagues. So everything is done with a team approach. And all of the members of the team are dedicated to their well-being. And if it’s a patient that’s primarily my patient, I always let them know, you got a team of people who are here ready to care for you, and I’m going to be the quarterback for you.
So, I’m going to be the one who makes sure that everyone runs the play correctly and that there are no obstacles that stand in your way in terms of defeating this cancer and that nothing falls through the cracks. So, I think by wearing these different hats, you start to build a strong relationship with patients, which is most important to me, and then guiding them with support, knowledge, and compassion. So, that’s how that experience of my lived experiences, especially the experience of living with my grandmother, has influenced me when it comes to caring for patients.
Lisa Hatfield:
Dr. Vince, thank you so much for sharing that story. It’s important for the entire cancer community and for patients like myself to hear that. It clearly gives you a unique perspective and connection to your patients. Hearing that story and hearing the words consoler and healer as part of your, as one of your roles or two of your roles as a physician taking care of that patient. We all need a Dr. Vince on our cancer care team. So patients, when you hear that, just know that your physician is part of your cancer care team and they want to be your quarterback. And if you sense that that’s not the case, find a Dr. Vince.
Dr. Randy Vince:
Yeah. Thank you.
What Are Common Bladder Cancer Myths and Resolutions for Underrepresented Patients?
Dr. Randy Vince from University Hospitals Cleveland Medical Center addresses and dispels four of the most common misconceptions: that bladder cancer only affects older adults, only smokers, or only men and that a diagnosis is always fatal. He also emphasizes the importance of education and early detection, and shares insights into risk factors and hereditary concerns. Learn more about Dr. Randy Vince.
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More Than Medicine | Breaking Barriers in Bladder Cancer Care |
Bladder Cancer Diagnosis and Treatment: Barriers to Timely Response |
Transcript:
Lisa Hatfield:
Vince, what are some common myths about bladder cancer that people in underrepresented communities might believe, and how can we clear up these misunderstandings to help improve outcomes?
Dr. Randy Vince:
Yeah, so if it’s okay, I’m probably going to answer that question in reverse. And the reason why is because, again, I’m a big believer in education, education, education. So, whether it’s at a physician’s appointment or whether it’s at a local community group or, you know, attending a health talk that is local to you, really educating yourself about health conditions can lead to increased awareness, which can dispel a lot of these myths.
But in my experience, I would say there’s probably about four common myths that I’ve heard. The first one is only old people get bladder cancer, which is just simply not true. While it is more common for bladder cancer to be developed in older individuals, it can happen in the younger population as well. I personally treated people who are in their 30s and 40s for bladder cancer.
So again, it’s not a disease that only impacts elderly patients. The next thing that I’ve heard is that only smokers get bladder cancer. So, while it is a major risk factor, and I mean smoking is a major risk factor for bladder cancer, there are other environmental exposures that you can have, especially in the workplace, whether it’s chemicals or paints or plastics.
So, these can also increase the risk of developing bladder cancer. And there are other treatments for pelvic conditions. Specifically, I’m thinking of radiation that can have a delayed onset of bladder cancer in patients.
Thirdly, bladder cancer diagnosis is equal to death, and that’s just simply not the case. Like many cancers, we know that early detection is key because when we have early detection, our survival rates go up. We talked about non-muscle-invasive bladder cancer versus muscle-invasive bladder cancer. What we know is that five-year survival rates for non-muscle-invasive bladder cancer, which is an earlier diagnosis of earlier detection, five-year survival rates exceed 90 percent.
So again, cancer, bladder cancer diagnosis does not equal a death sentence. And then lastly, that only men get bladder cancer. Again, it’s more common in men, but women get bladder cancer as well. But the difference that we’ve seen is that women in minority communities are actually more likely to succumb to that bladder cancer diagnosis. Which again, just points to why that increased awareness is so important in early detection efforts remain critical.
Lisa Hatfield:
Okay, thank you. And I have one follow-up question to that. You talked about some risk factors for bladder cancer. Is there any type of genetic or hereditary component to bladder cancer?
Dr. Randy Vince:
Yeah. So, the vast majority of bladder cancers do not have an inherent genetic risk. There are some very rare bladder cancers that are associated with a genetic link. But for the vast majority of patients who develop bladder cancer, there is not a hereditary link to that.
Exciting Developments in Bladder Cancer Treatment Advances: Muscle-Invasive and Non-Muscle-Invasive Care
Dr. Randy Vince from University Hospitals Cleveland Medical Center outlines the latest advancements in bladder cancer treatment, highlighting two key shifts in the standard of care: the increasing use of immunotherapy for muscle-invasive bladder cancer and the growing adoption of bladder preservation strategies through chemoradiation. Learn more about Dr. Randy Vince.
[ACT]IVATION TIP
“Yes. So I’m a big believer in education, education, education. So, for patients specifically, I like to say, you know, again, know everything and please try to understand everything about cancer diagnosis. So, specifically, when we talk about cancer stage. And this goes back to the muscle-invasive versus non-muscle-invasive bladder cancer, because the treatment options vary drastically depending on whether or not you have non muscle-invasive bladder cancer versus muscle-invasive bladder cancer.”
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Transcript:
Lisa Hatfield:
Dr. Vince, could you share the latest advancements in bladder cancer treatment, and are there any emerging developments that have the potential to significantly change the standard of care?
Dr. Randy Vince:
Yeah. So, you know, typically what we think of when we talk about bladder cancer treatments is we divide bladder cancer into what we call muscle-invasive or non-muscle-invasive. And so, when it comes to the treatments, we base those treatments based off of what category you may fall in. But in recent years, there have been a number of advancements for bladder cancer treatment. One of the notable developments is the use of what we call immunotherapies. These are typically in patients who have muscle-invasive bladder cancer, but it provides an alternative to the chemotherapy regimens that we relied on in the past, which a lot of patients did not tolerate.
So, these immunotherapies give us the ability to fight off the cancer. While most patients are able to tolerate these medications with much more ease than they were with chemotherapy. The other thing that I think about is in the same realm as muscle-invasive bladder cancer is now we have bladder preservation options. Whereas before, when I was initially training, if someone had muscle-invasive bladder cancer, that meant that they would either get what we call neoadjuvant chemotherapy, which just means before treatment, their main treatment, get chemotherapy before that, followed by bladder removal and some type of diversion of the urine.
Dr. Randy Vince:
Whereas now we have the ability to give what we call chemo radiation, which is a combination of chemotherapy and radiation to the bladder. So, that way patients don’t have to lose their bladder. So, we allow bladder preservation while still being able to give treatment that is curative in nature. So, I think that has been two of the most recent advances when it comes down to shifting the paradigm of how we treat patients with bladder cancer.
Lisa Hatfield:
Okay, thank you. And one, follow-up to that. So, when you talk about bladder preservation, is that the standard of care now, or is that something that a patient would need to ask their oncologist about?
Dr. Randy Vince:
Yeah, so actually, you know, a lot of cancer guidelines that are published nationally by, you know, national institutions or national organizations like the NCCN, for instance. This is now in the guidelines where patients can have this therapy, and it’s recommended. Now, there are select patients who fall in the category that are eligible for chemo radiation. But this should be something that’s discussed in addition to, you know, more invasive treatments, like what we call a radical cystectomy, which is just removal of the bladder.
Lisa Hatfield:
Okay, thank you. And do you happen to have an [ACT]IVATION tip for this question?
Dr. Randy Vince:
Yes. So I’m a big believer in education, education, education. So, for patients specifically, I like to say, you know, again, know everything and please try to understand everything about your cancer diagnosis. So, specifically, when we talk about cancer stage. And this goes back to the muscle-invasive versus non-muscle-invasive bladder cancer, because the treatment options vary drastically depending on whether or not you have non muscle-invasive bladder cancer versus muscle-invasive bladder cancer.
So, for those with non muscle-invasive bladder cancer, we typically do intravascular therapies, which means instilling medication in the bladder versus the more aggressive treatments that we do for people with muscle-invasive bladder cancer. So, know your stage and try to know everything you can about your diagnosis.
Bladder Cancer Diagnosis and Treatment: Barriers to Timely Response
What are the main barriers bladder cancer patients face in accessing timely diagnosis and treatment? Dr. Randy Vince from University Hospitals Cleveland Medical Center sheds light on how socioeconomic factors such as insurance access, lack of primary care, and limited health literacy contribute to delays in diagnosis and care. Learn more about Dr. Randy Vince.
[ACT]IVATION TIP
“So, for patients who have financial difficulties when it comes to obtaining health insurance, you know, one of the things that we’ve seen here locally that a lot of patients were not aware of is you can actually contact your local board of health, whether it’s at the county level or a local municipality level, and they have resources available for you based off of your, you know, where you are in terms of your economic circumstance. The next thing I would say is for all patients, you know, and this is across the board, I always tell patients to trust your body, because no one knows your body better than you do. And so if you notice different changes in your body, when it comes down to things like increased urination or the frequency of urination, blood in your urine, these are things that you should seek medical advice or medical attention for immediately.”
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Related Programs:
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More Than Medicine | Breaking Barriers in Bladder Cancer Care |
What Are Common Bladder Cancer Myths and Resolutions for Underrepresented Patients? |
Transcript:
Lisa Hatfield:
Dr. Vince, what are the main barriers bladder cancer patients face in accessing timely diagnosis and treatment?
Dr. Randy Vince:
Yeah, so that’s a great question. So, there are major barriers that are largely related to socioeconomic factors. We see this in healthcare broadly, but specifically within bladder cancer patients. So some examples of those things would be insurance access, access to primary care physicians. Because we know that there are substantial amount, substantial number of the population who don’t have a primary care physician, as well as health literacy or differences in health literacy. And then many of these factors are actually interconnected.
So, I say that to say that, you know, for example, patients who are facing financial insecurity, which we know are disproportionately Black and Brown patients are more likely to be uninsured or underinsured, and they’re less likely to receive preventative medicine, medical care from a primary care provider. And so, as a result, when you have these health issues arise, there could be limited access to the necessary care, as well as a lack of awareness about the available treatment options. So, all of these things kind of combine or stack on top of each other, if you will, when it comes to the barriers for bladder cancer patients, when it comes to accessing timely diagnosis and treatment.
Lisa Hatfield:
Okay, thank you. And do you happen to have an [ACT]IVATION tip for that question?
Dr. Randy Vince:
Yes. So, for patients who first, when we talked about financial insecurity. So, for patients who have financial difficulties when it comes to obtaining health insurance, you know, one of the things that we’ve seen here locally that a lot of patients were not aware of is you can actually contact your local board of health, whether it’s at the county level or a local municipality level, and they have resources available for you based off of where you are in terms of your economic circumstance.
The next thing I would say is for all patients, and this is across the board, I always tell patients to trust your body, because no one knows your body better than you do. And so if you notice different changes in your body, when it comes down to things like increased urination or the frequency of urination, blood in your urine, these are things that you should seek medical advice or medical attention for immediately. So again, don’t disregard any signs or symptoms. Really lean into being in tune with your body. So, if you start to notice these symptoms, please seek medical treatment.
Can Self-Advocacy Close the Gap in Bladder Cancer Outcomes?
Bladder cancer research insights show disparities for specific groups. Expert Dr. Shaakir Hasan from Beth Israel Lahey Health discusses highlights from his research study, the value of seeking medical attention and second opinions, and proactive patient advice.
[ACT]IVATION TIP
“Just do your own research, find what’s available, discuss these options with your provider, look at multiple providers, and get multiple opinions if you can to kind of feel more comfortable with whatever decision you end up making.”
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Transcript:
Lisa Hatfield:
Dr. Hasan, your study found that certain demographics, including Black and female patients have reduced survival rates. So can you speak a bit about the study and what you think can be done to improve outcomes for these groups?
Sure. So, I think that when it comes to the overall prognosis, the overall, you know, outcomes, the results as to how likely you are to get cured, survive is actually not so different. It’s a little different, but not so different among different groups, be it female, be it African Americans, the bigger issue is that they’re being diagnosed at a later stage. And that just makes care a lot more difficult. So, I think that’s the take home message there is that, going back to, I should just say, the biggest issue here is to look at preventive medicine and to kind of detect these symptoms early, detect bladder cancer early if it’s there, because that will eventually lead to better outcomes regardless of whatever group you belong to.
So, that does mean seeking medical attention early. That does mean addressing things like blood in the urine or just anything that’s off in your genital urinary system to address that early. Now, as far as reduced survival rates stage for stage, which is another thing that we showed, it could be a multitude of things. It could be that certain groups, demographic groups, just are predisposed to worst acting cancers. They could be more aggressive tumors. But there’s also certainly a lot of evidence that shows that certain ethnic groups just don’t get the same care, period.
Maybe they don’t have as much access insurance-wise. Maybe they don’t have the same coverage or they’re not seeking some of the expert care that’s out there. And so that certainly can contribute to worse outcomes, period. We’ve seen this in many different cancers. So, what I would say, what can be done to prevent this? I will again, encourage that those really advocate for themselves and say, look, do your own research, hop on Google and just bladder cancer treatments, plain and simple. And you’ll find a multitude of opportunities of different types of treatments. And you should ask your provider about them. The second you do that, they know you’re engaged. They’re going to engage back with you, and it’ll be much more of like a partnership in your management and your care.
And that will ultimately get you better results. I think another thing one can do is don’t, you know, in the business, in medicine, we call this doctor shopping, so to speak, but it’s not a bad thing, seek other opinions, be comfortable with your physician and be comfortable getting different opinions and seeing what’s all out there because, and we won’t be offended. I encourage all my patients to go get as many opinions as they feel comfortable with, because at the end of the day I want you to be comfortable with your management.
I want you to know what’s out there and you might just have a better fit, whether it’s location, you just like the position better. You like the facilities better, the opportunities, the nursing staff, whatever it might be, there’s going to be a better fit for certain patients in certain areas and you should explore that. So, I think regardless of your economic background, your ethnic background, your gender do this and then you, we kind of, so to speak, level the playing field for whatever type of care you get.
Start with doing your own research, you know, try to find what’s available for you, and you might not understand it all, but that’s okay. Just do your own research, find what’s available, discuss these options with your provider, look at multiple providers, and get multiple opinions if you can to kind of feel more comfortable with whatever decision you end up making.
Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors
How can access to bladder cancer care be improved? Expert Dr. Shaakir Hasan from Beth Israel Lahey Health discusses the impacts of health insurance and socioeconomic factors, the value of preventative care, and proactive advice for all patients to help ensure optimal health.
[ACT]IVATION TIP
“Take it upon yourself, regardless of how you feel, regardless of how good you feel to engage in preventive medicine to seek medical attention, even when you feel good, feel healthy, get routine checkups, because a lot of times you just won’t know what’s going on, you won’t feel it. But we can detect it early without you feeling it. And that could eventually save your life if we catch something early, but just when you want to catch something.”
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Related Programs:
Navigating Bladder Cancer Treatment: Understanding the Role of Academic and Community Centers |
Addressing Disparities in Bladder Cancer Diagnosis and Treatment |
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Transcript:
Lisa Hatfield:
Dr. Hasan, can you speak to how socioeconomic factors influence access to bladder cancer care? And what suggested strategies can help bridge these gaps for underrepresented patients and families facing bladder cancer?
Dr. Shaakir Hasan:
Sure. So the only factor that we saw that was more significant, more influential on worse prognosis, late diagnosis for bladder cancer was insurance. So even more so than ethnicity and income was the lack of insurance. And this makes sense, right? This makes sense. Again, if you do not have insurance, you probably are not getting routine checkups, you’re not getting that urinalysis, you’re not having that opportunity to mention, oh, yeah, a couple of weeks ago, I saw some blood in the urine, it went away. I don’t know if that’s a big deal or not.
You’re just not going to have that opportunity to talk about this and work this up. So that is, I think, the fundamental issue. I think that’s the most important aspect of everything is to just have initial access, preventative medicine, preventive care to look out for these symptoms that can lead you to a bladder cancer diagnosis. So, certainly I think lack of access is the number one thing, even more so than the minority groups. Of course, there is a strong correlation between the two right certain ethnicity, certain groups, underprivileged groups are going to be less likely to have health care. The question is what to do about it. That’s a lot tougher to answer.
At the end of the day, we ought to figure out how to get better access to care. I would say, please, please prioritize this, prioritize your health care. It’s easy for me to say as a physician, I know that I’m biased here, but all too often, I see people that feel great, look great, just have no complaints and therefore do not seek any care. And I understand that I actually personally, probably go by that doctors make pretty bad patients, by the way, as the saying goes, and I’m probably guilty of this as well.
But what I would tell you is that, what makes cancer so dangerous, regardless of where it is, including bladder is that you tend to not know it’s there until it’s too late. It’s very sneaky. It just hangs out with you until it wants to take over. And you’re never going to know, you know, until it’s too late, unless you kind of act on it early. And so it’s really, really important to find a way. I know it’s expensive. I know it can be difficult, but please don’t make the mistake of thinking just because you look great, you feel great, you’ve never had to see a doctor that you don’t want to take these measures to preventative care.
At the end of the day, health is all you have. You could be the richest person in the world, you can do whatever you love to do. But if you aren’t there, if you aren’t around to experience it, or you can’t be healthy while you do it, it’s kind of worthless, right? So please prioritize your health is what I’d say.
Take it upon yourself, regardless of how you feel, regardless of how good you feel to engage in preventive medicine to seek medical attention, even when you feel good, feel healthy, get routine checkups, because a lot of times you just won’t know what’s going on, you won’t feel it. But we can detect it early without you feeling it. And that could eventually save your life if we catch something early, but just when you want to catch something.
Addressing Disparities in Bladder Cancer Diagnosis and Treatment
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.
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Related Programs:
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Navigating Bladder Cancer Treatment: Understanding the Role of Academic and Community Centers |
Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors |
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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
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:
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Addressing Disparities in Bladder Cancer Diagnosis and Treatment |
Improving Access to Bladder Cancer Care: Impact of Insurance and Socioeconomic Factors |
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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?
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:
|
Navigating Inequities in Diagnosis and Treatment of Bladder Cancer |
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
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:
|
|
Navigating Inequities in Diagnosis and Treatment of 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.
