Tag Archive for: Black men

How Is Genetic Information Used for Prostate Cancer Treatment?

How Is Genetic Information Used for Prostate Cancer Treatment? from Patient Empowerment Network on Vimeo.

Prostate cancer can impact patients differently depending on their risk group. Dr. Heather Cheng from Seattle Cancer Care Alliance explains how genetic information is used in prostate cancer treatment and other factors that can impact patient outcomes.

See More from Prostate Cancer TelemEDucation

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Telemonitoring and How It Benefits Prostate Cancer Patients 

What Is the PROMISE Study for Prostate Cancer Patients?

What Is the PROMISE Study for Prostate Cancer Patients?


Transcript:

Sherea Cary:

Can you speak to how you and your colleagues are using genetic information to help with the treatment and understanding prostate cancer for different risk groups?

Dr. Heather Cheng:

Yeah, thank you that…that’s something that I think is following the lines of this idea of precision oncology or tailoring. Tailoring people’s management, either if they don’t have cancer and we’re worried about the risk of cancer, we can use genetic markers that we can test from saliva or blood to help understand that person’s risk of prostate cancer better, and in some cases, there are some families where there are markers or genes that run in the families that might increase the risk of developing prostate cancer, but also sometimes the same genes are increased the risk of breast cancer and ovarian cancer, and if they’re present, then it’s important to think about knowing that, getting that information, because then there are strategies that we can use to find it earlier and to treat it more aggressively and hopefully have much better outcomes in a much better likelihood of curing prostate cancer. But then also the other related cancer, so for men, this is really important because we haven’t previously been thinking about it in the same way, but that’s one example of how genetics can affect the thinking about the risk of prostate cancer. We know that Black men have a higher risk of prostate cancer to begin with, and we were beginning to understand why that might be.

Some of it may be genetic, some of it may be access to healthcare and knowledge, which we’re trying to help disseminate the knowledge here, and then sometimes it’s care delivery, so we want to focus on all of those things, but genetics are part of that.

How Does Aggressive Prostate Cancer Impact Various Populations?

How Does Aggressive Prostate Cancer Impact Various Populations? from Patient Empowerment Network on Vimeo.

How is prostate cancer impact different for some populations? Watch as expert Dr. Yaw Nyame shares how prostate cancer incidence and death rates vary for some groups, potential risk factors, screening recommendations, and actions that can be taken to improve health outcomes.

See More From Best Prostate Cancer Care No Matter Where You Live


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Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?


Transcript:

Sherea Cary: 

What differences do you see in terms of aggressiveness for cancers in different…various populations? 

Dr. Nyame: 

This is an area of research that for me, is trying to understand why certain populations have more aggressive or worse outcomes when it comes to prostate cancer. 

The most obvious example of this here in the United States is for Black men. Black men are more likely to be diagnosed with prostate cancer each year, so about 70 percent more likely to be diagnosed, and they are twice as likely to die from prostate cancer as men of other races in the United States. If you look at what the natural history of prostate cancer and Black men looks like, meaning if you were to chart from diagnosis through the course of the disease, does it look different for Black men? The answer is yes, it appears of Black men get prostate cancer when they’re younger, and there’s data to suggest that perhaps Black men get more aggressive prostate cancer because they’re more likely to progress from the localized or treatable disease to stage IV aggressive disease that can’t be treated. We don’t understand what the drivers of that are for a long time, the medical community has suggested that it’s all biology, and by that may be an inherited biology, but we know that health disparities really carry a significant social contribution. And, in fact, I like to say that social and environmental factors inform biology too. And so, if we see something biologic that explains these trends, it doesn’t mean that that’s the way they were born, it might mean that you put someone in a community that lives near a highway with high pollution or does not have access to clean water or lives in a state of high stress or over security. We don’t know what the biologic manifestations of those types of experiences are, but that perhaps is the reason why we see our communities of color, especially our Black men, are experiencing a higher burden of prostate cancer. 

Sherea Cary: 

So, is there a push to have African American men tested earlier with the PSA test, since it appears that they may get prostate cancer earlier?  

Dr. Nyame: 

The U.S. Preventative Services Task Force, which makes a recommendation to the medical community about prostate cancer screening states that they cannot make a specific recommendation about screening in Black men and other high-risk populations like men with a strong family history of prostate cancer, because those men were not included in the clinical trials that have looked at the efficacy of PSA testing for screening. 

Unfortunately, Black men make up 3 percent or less of participants in the two screening trials that have informed whether there’s a benefit to PSA testing, which there has been shown to be a 20 percent decrease in dying from prostate cancer if you get screened. We recently took data from the screening trials and superimposed them on real-world data from our surveillance apparatus for cancer in the United States, and what we found was that if you did lower the age of screening in Black men from age 55 to 45, that you did decrease the risk of dying from prostate cancer significantly. It is our hope that this type of research will encourage the U.S. Preventative Services Task Force and other medical societies to reconsider their screening recommendation for Black men, ultimately, whatever, if there is a recommendation made to screen at younger ages, I think we need to be conscientious and evaluate what the impact is on the ground, so that if there is a time where we need to reverse a recommendation like that because it’s potentially harmful, that we consider that. But I feel strongly sitting here today that we do need to advocate for earlier screening and Black men. 

How Effective Is Early Screening in Prostate Cancer?

How Effective Is Early Screening in Prostate Cancer? from Patient Empowerment Network on Vimeo.

Can prostate cancer early screening be effective? Watch as expert Dr. Yaw Nyamefrom the University of Washington shares information about those who are at higher risk of prostate cancer and recommended ages to start screening in these higher-risk groups for proactive care. 

See More From Best Prostate Cancer Care No Matter Where You Live


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Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?


Transcript:

Sherea Cary: 

What screening test or risk-reducing care would you suggest for men who have a family history of prostate cancer, and at what age should screening begin for specific populations? 

Dr. Nyame: 

Unfortunately, there is no data, rigorous data to help answer this question, but we know that men that have a high risk of developing prostate cancer benefit from earlier testing with PSA. We know this from a variety of studies, including some modeling studies, which we have done here at the Fred Hutch Cancer Center at the University of Washington. When I talk about high-risk groups, it really falls into two categories, men who have a strong family history and a strong family history means a first-degree relative, father, brother, grandfather that has prostate cancer. 

But when we look at the genetics of prostate cancer it’s not just about prostate cancer itself, what we have found is that things that lead to family histories of breast cancer, ovarian cancer, colon cancer also increase your risk of prostate cancer, for instance, the BRCA gene, which is a breast cancer gene is associated with a marked increased risk of prostate cancer. So, knowing your family history matters and knowing it beyond prostate cancer is important. The other high-risk group as men of African descent or ancestry, we know our Black men have a much higher risk of developing prostate cancer in their lifetime, it’s about a one in six or one in seven risk compared to one in nine in the general population. So, the recommendation I make for these two groups is to consider screening earlier and to do it more frequently. On average, PSA screening happens for men between the ages of 55 and 70 or 74, and it’s usually every two years, if you look at the population level data, I would suggest that you consider screening at age 45 or 40 and doing it every year, however, you’ve got to turn the screening off at some point. So, if your PSA stays low and is non-concerning into your early 70s, then I think you can be reassured that your risk of having a fatal or aggressive cancer is low, and you could safely stop screening. 

Sherea Cary: 

So for someone who has a first-degree relative such as a father who had prostate cancer and maybe even an aggressive form of prostate cancer, it will be important for them to get screened at 40 to start at least having a baseline number to be able to watch it?  

Dr. Nyame:

Absolutely. The baseline number is really a topic of discussion in the urologic community because we know that if you get a PSA at age 40 and it’s above one or above the median for your age group, that you’re at a lifetime risk of having what we call significant cancer, so that’s a cancer that might have the potential to be fatal in your lifetime is higher. And so theoretically, you could get that one-time PSA at 40 and use that as a basis for how intense your screening practice would be. I’ve talked about PSA testing, but screening also involves the digital rectal exam, and it’s important that men understand that both those things together is what leads to a thorough and good clinical evaluation, when it comes to prostate cancer risk.

Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?

Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving? from Patient Empowerment Network on Vimeo.

 What should prostate cancer patients, care partners, and underserved patients know about? Watch as expert Dr. Yaw Nyamefrom the University of Washington shares insight about prostate cancer detection, screening guidelines, specific concerns for Black men, support groups, and clinical trials to work toward better health outcomes for all. 

See More From Best Prostate Cancer Care No Matter Where You Live


Related Resources:

How Has the Onset of Prostate Cancer Evolved?


Transcript:

Sherea Cary: 

Hello, we are here with Dr. Nyame. I have a few questions for you. Dr. Nyame, how has prostate cancer evolved over the last decade regarding the onset of the disease, the population in which it impacts the care and the treatment? 

Dr. Nyame: 

You know, prostate cancer is the most common cancer in men that is in a solid organ. It affects about one in nine men over their lifetime, and probably the biggest advance or change we’ve seen in the disease occurred in the late ‘80s with the introduction of the PSA test. What that allows us to do is detect cancers very early in their natural life history, if you will, and that gives us the opportunity really to provide treatment when there’s…with an opportunity for cure. The downside to that is not all prostate cancers are the same, we know that some prostate cancers are diseases that men will die with and not from…meaning that some of these cancers that we detect don’t need any treatment or intervention. This means that a lot of research that has occurred in the last decade or two has been focused on helping us determine which cancers deserve treatment and which ones we can watch safely and so some of the biggest advances have been diagnostic tests such as radiology imaging, so we’ve seen things like MRI really come into the mainstay of prostate cancer diagnosis and treatment upfront. We have very exciting nuclear medicine scans. 

So, you might hear the term PSM-A as a new test that’s really going to disrupt and change the way the prostate cancer diagnosis and treatment is made. We also have genetic testing that we can do on blood samples, urine samples, and tissue, that might give us some very exciting information about one’s risk of dying from prostate cancer, which ultimately is what we want to know when we’re offering treatment to someone.  

Sherea Cary: 

Thank you. What screening test or risk-reducing care would you suggest for men who have a family history of prostate cancer, and at what age should screening begin for specific populations?  

Dr. Nyame: 

Unfortunately, there is no data, rigorous data to help answer this question, but we know that men that have a high risk of developing prostate cancer benefit from earlier testing with PSA. We know this from a variety of studies, including some modeling studies, which we have done here at the Fred Hutch Cancer Center at the University of Washington. When I talk about high-risk groups, it really falls into two categories, men who have a strong family history and a strong family history means a first-degree relative, father, brother, grandfather that has prostate cancer. 

But when we look at the genetics of prostate cancer it’s not just about prostate cancer itself, what we have found is that things that lead to family histories of breast cancer, ovarian cancer, colon cancer also increase your risk of prostate cancer, for instance, the BRCA gene, which is a breast cancer gene is associated with a marked increased risk of prostate cancer. So, knowing your family history matters and knowing it beyond prostate cancer is important. The other high-risk group as men of African descent or ancestry, we know our black men have a much higher risk of developing prostate cancer in their lifetime, it’s about a one in six or one in seven risk compared to one in nine in the general population. So, the recommendation I make for these two groups is to consider screening earlier and to do it more frequently. On average, PSA screening happens for men between the ages of 55 and 70 or 74, and it’s usually every two years, if you look at the population level data, I would suggest that you consider screening at age 45 or 40 and doing it every year, however, you’ve got to turn the screening off at some point. So, if your PSA stays low and is non-concerning into your early 70s, then I think you can be reassured that your risk of having a fatal or aggressive cancer is low, and you could safely stop screening. 

 Sherea Cary:

Thank you. So, for someone who has a first degree relative such as a father who had prostate cancer and maybe even an aggressive form of prostate cancer, it will be important for them to get screened at 40 to start at least having a baseline number to be able to watch it? 

Dr. Nyame: 

Absolutely. The baseline number is really a topic of discussion in the urologic community because we know that if you get a PSA at age 40 and its above one or above the median for your age group, that you’re a lifetime risk of having what we call significant cancer, so that’s a cancer that might have the potential to be fatal in your lifetime is higher, and so theoretically, you could get that one-time PSA at 40 and use that as a basis for how intense your screening practice would be. I’ve talked about PSA testing, but screening also involves the digital rectal exam, and it’s important that men understand that both those things together is what leads to a thorough and good clinical evaluation, when it comes to prostate cancer risk. 

Sherea Cary:

Thank you so much for sharing the information about the BRCA gene as well. I’ve heard information about the BRCA gene, but I always hear it in relation to women, I’ve never heard it in relation to a connection with prostate cancer. 

That is very interesting to know. What does a multi-discipline approach to prostate cancer look like? 

Dr. Nyame:

Well, when you think about prostate cancer and how it’s diagnosed and how it’s treated, you’re talking about a process that involves a team, the process often starts with your primary care physician, he or she may order a PSA test, which will prompt a biopsy if it’s positive, so that’s the step one is that relationship you have with your primary care physician. Step two is going to be your urologist, that’s the person that’s going to do your biopsy, and if you are diagnosed with prostate cancer that person in conjunction with your primary care physician is then going to be leading this process of, do we actively watch your cancer because it’s a low risk, or do we seek treatment because it’s localized, meaning it’s in the prostate and we can still get your treatment with curative intent as we call it, or has it spread? And in that case, your options for a doctor is different on the watch side, you’re probably looking at a urologist who’s watching closely, on the localized side, you’re going to talk to maybe a radiation specialist or a urologist because both treatments are equal and their effectiveness from cancer treatment. 

But they have different side effects. And I think to get good information about what treatment is best for you, you should see both, and then on the advanced side, you’re talking about medical oncologist that’s going to help navigate all of the various treatments that we have now for stage IV prostate cancer, and even in that setting, you might still find yourself considering a clinical trial with someone like a urologist or getting radiation treatment, which can be standard of care in select patients that have stage IV cancer. So as you can see, it is a very wide range of individuals that are helping take care of your cancer, and that’s just on the treatment side, that’s not talking about any of the other supportive services that you may need that may exist either in your community or in your health systems where you’re getting treated, and those can include patient navigators, social workers, the various nursing services, nutritionists, there’s a lot of people that you may want to put on your team as you’re considering your care. 

Sherea Cary: 

Thank you. So, some people may consider prostate cancer a couples’ disease. What advice would you give to a care partner? My father was a prostate cancer survivor, my mother was very supportive of him, but I took much of the lead as far as being his caregiver and coordinating things between my father, his doctor’s appointments, and with my siblings. 

Do you believe that support people, caregivers, such as children, are able to also assist in receiving care? 

Dr. Nyame: 

Absolutely. The data is overwhelming in this scenario, patients who are partnered or have strong social support do better, and I always say that the patients who have the best outcomes when it comes to cancer, have someone like you, Sherea in their life. It’s not surprising, given the burden of cancer treatment, that having someone that can help navigate all the aspects of your care and be there to support you leads to better outcomes and better satisfaction with the treatments that you choose, a cancer diagnosis, especially prostate cancer diagnosis, a disease that has a very high cure rate, has a very long lifespan, but has really life-altering potential consequences of the treatments you received, has an impact on what we return your survivorship. So how do you live with your cancer, and so the individuals that are there to support you through that journey are absolutely critical. 

Sherea Cary: 

Thank you. What differences do you see in terms of aggressiveness for cancers in different… Various populations?  

Dr. Nyame: 

This is an area of research that for me, is trying to understand why certain populations have more aggressive or worse outcomes when it comes to prostate cancer. 

The most obvious example of this here in the United States is for black men. Black men are more likely to be diagnosed with prostate cancer each year, so about 70% more likely to be diagnosed and they are twice as likely to die from prostate cancer as men of other races in the United States. If you look at what the natural history of prostate cancer and Black men looks like, meaning if you were to chart from diagnosis through the course of the disease, does it look different for black men? The answer is yes,, it appears of Black men get prostate cancer when they’re younger, and there’s data to suggest that perhaps Black men get more aggressive prostate cancer because they’re more likely to progress from the localized or treatable disease to stage IV aggressive disease that can’t be treated. We don’t understand what the drivers of that are for a long time, the medical community has suggested that it’s all biology, and by that may be an inherited biology, but we know that health disparities really carry a significant social contribution, and in fact, I like to say that social and environmental factors inform biology too, and so if we see something biologic that explains these trends, it doesn’t mean that that’s the way they were born, it might mean that you put someone in a community that lives near a highway with high pollution or does not have access to clean water or lives in a state of high stress or over security, we don’t know what the biologic manifestations of those types of experiences are, but that perhaps is the reason why we see our communities of color, especially our Black men, experiencing a higher burden of prostate cancer. 

Sherea Cary:

So, is there a push to have African-American men tested earlier with the PSA test, since it appears that they may get prostate cancer earlier?  

Dr. Nyame: 

The U.S. Preventative Services Task Force, which makes a recommendation to the medical community about prostate cancer screening states that they cannot make a specific recommendation about screening in black men and other high-risk populations like men with a strong family history of prostate cancer, because those men were not included in the clinical trials that have looked at the efficacy of PSA testing for screening. 

Unfortunately, black men make up 3 percent or less of participants in the two screening trials that have informed whether there’s a benefit to PSA testing, which there has been shown to be a 20 percent decrease in dying from prostate cancer if you get screened. We recently took data from the screening trials and superimposed them on real-world data from our surveillance apparatus for cancer in the United States, and what we found was that if you did lower the age of screening in Black men from age 55 to 45, that you did decrease the risk of dying from prostate cancer significantly. It is our hope that this type of research will encourage the U.S. Preventative Services Task Force and other medical societies to reconsider their screening recommendation for black men, ultimately, whatever, if there is a recommendation made to screen at younger ages, I think we need to be conscientious and evaluate what the impact is on the ground, so that if there is a time where we need to reverse a recommendation like that because it’s potentially harmful, that we consider that, but I feel strongly sitting here today that we do need to advocate for earlier screening and Black men. 

Sherea Cary:

What advice do you have for prostate cancer patients about locating a clinical trial. Where can you find one? 

Dr. Nyame: 

Clinical trials tend to happen at the big cancer centers and the big academic university centers, although many of those programs will have affiliate partners out in the community. The easiest way to learn about clinical trials is to start by asking the physician that’s treating you for your prostate cancer, oftentimes, they’ll have resources and connections to the trials directly or are the people who are administering them; however, other great sources are going to be patient advocacy networks, and there are many of them for prostate cancer, there’s one… There are several, I’ll start naming a few. They have the Prostate Cancer Foundation, you have Us TOO, you have zero cancer, you have a PHEN, Prostate Health Education Network, which is an advocacy group for black men with prostate cancer. So these are all great sources of finding out what clinical trials exist, and in addition, you can just get on the Internet and Google if that’s something you have access to, the trick is navigating all the information, and I think knowing what trials are available for you, whether you qualify, that kind of thing can be difficult, and that’s ultimately where finding a provider, whether it’s your direct urologists or radiation oncologist or whoever is helping treat your prostate cancer, either them directly or sometimes seeking a second opinion, and going to a place where you might find someone who has some expertise in trials, if that’s something that you’re interested in.  

Sherea Cary: 

My father participated in a clinical trial, it was going on, I think the time of his treatment, and it was offered to us, and he was at a big facility here in Houston that offered…ask him if he wanted to participate. We did a lot of research. We said we’d try it. And we were glad to be able to participate. I participated in clinical trials also for different health conditions, ’cause I believe it’s important that we have to participate in order for our people to gather the information that’s necessary. So thank you for that. 

Dr. Nyame: 

Absolutely, you know I think there are a lot of reasons that we think that our black community, for instance, may not participate in a clinical trial given the history of medical experimentation and various forms of abuse that have existed in our history, but what I recently heard from our partner of our community partners at PHEN, when they surveyed black men about prosecutor clinical trials, was that although there was some concern about trust in the history, that the overwhelming majority of the men wanted to participate, but they never were asked, and that’s really stuck with me, and I think that black men are under-represented in clinical trials, and we have to find ways to be more inclusive and understand what barriers might exist into participation so that we can have that data to care better for the population. 

Sherea Cary: 

Thank you so much for spending time with us today. I appreciate you sharing your knowledge. 

What Are Key Prostate Cancer Questions to Ask Care Team Members?

What Are Key Prostate Cancer Questions to Ask Care Team Members? from Patient Empowerment Network on Vimeo

What are key prostate cancer questions to ask care team members? Host Dr. Nicole Rochester and Dr. Yaw Nyame, and Dr. Petros Grivas provide information about vital questions to ask care providers about prostate cancer diagnosis and treatment options to work toward improved quality of life and equitable healthcare.

See More From Best Prostate Cancer Care No Matter Where You Live


Related Resources:

What Barriers Do Prostate Cancer Patients Face When Seeking Care?

How Can Prostate Cancer Patients and Providers Help Ensure Quality Care?


Transcript:

Dr. Nicole Rochester: 

I’d love for each of you to share maybe a couple of key questions that patients, our care partners facing prostate cancer should ask of their treatment team to ensure that they’re receiving appropriate care. 

So, we’ll start with you, Dr. Nyame. Any key questions that patients should be asking their care team when they seek treatment or diagnosis of prostate cancer? 

Dr. Nyame: 

Absolutely, I think that there’s a long list. Actually, I’ll tell you, my new prostate cancer diagnoses visits are usually my longest because there’s a lot to consider. I do think depending on what you’re having done and what you’re being considered for, so let’s say in the localized setting, prostate cancer is confined to the prostate, and you’re thinking about treatment like a surgery or radiation therapy, you really want to know what that center and what that provider’s experience is because we have a lot of supporting evidence that the more people doing this…no one’s going to be surprised by what I’m about to say, but the more that someone does is the better they’re going to be at it. Okay, and so making sure your team has a good experience with what you’re seeking to have done is important, and I think it’s well within your rights as a patient to understand that, so I think advocate for that. Secondly, I think basic questions, just to understand the relationship, I think…I like it when patients want to know a little bit about me because I’m going to be…they’re going to be in my hands. And so again, the importance of that relationship building and your visit is crucial. 

Lastly, I think when you come to the visit, have a list of questions based off of what you’ve researched and write them down, I find my most sophisticated patients or crossing off questions as I’m talking, because they came prepared and so that preparation…the act of doing a little bit of reading, there are a lot of resources, the Prostate Cancer Foundation, for instance, has a very nice patient guide that’s written by patients and language that’s really digestible and edited by experts, and so going through that and coming with your list of questions, I think is a really important thing for your visit, and those are just a few things I can think of that can lead to a meaningful clinic visit and exchange. 

Dr. Nicole Rochester: 

Excellent, I’m a huge fan of questions and being prepared for visits. What about you, Dr. Grivas, are there one or two key questions that you feel patients or their care partners should ask? 

Dr. Grivas: 

Great answers by Dr. Nyame, I totally agree. I think started with the basics, “What this diagnosis means for me, what is the current extent of the cancer,” we call the states, and “What is the outlook, what is the overall prognosis or at least estimate of the outcome?” That’s a reasonable question to ask and again some places more detail, some others may not, and it’s important for us also to ask the base and what they want to know, how much they want to know, I would take in things of them, they want to know the entirety of the information because it makes…help them make decisions. The other, I think it’s important point, “What are the treatment options and what is the intent of the treatment, what are we trying to achieve by giving treatment, Are we trying to cure, eradicate or eliminate the culture, are we to prolong life, are we trying to improve quality of life or are we just trying control the cancer? So, what are the goals of the treatment and what are the metrics of success, so what will be a successful outcome of that treatment? How do we measure that?” And I think it’s also important. 

Two more points, I would if I may. I think, again, going back to the importance of genetic counseling even more in prostate cancer, I think we recognize the importance in the aspect of patient treatment because some treatment options may depend on finding mutations. But also, the importance of the family, how much can prevent cancers in the brother family, close and extended family, if we find the mutation, can we set this mutation for other family members and do screening to prevent cancer prevention is ideal if we can do that and I think that’s a good discussion, so the patient can come to the visit if possible, by doing some homework about the family history. It’s hard for of us now, what’s happening in that chasm, right? But we do have the time to be informed of the importance of the question, this can help and expedite in our resources like to genetic counseling. And the last points, research, I want to again make the point, we should all do a better job to offer innovative clinical trials to patients across races, and it should be a very important point again equitable healthcare. And the patient should ask are clinical trials an option for me and do I have a clinical trial option? And I think it’s a great question, and hopefully this can help the patient get to integrative treatment, but also help the field. 

The research would get important answers, and the important answers can be for all the community and the specific populations, if we do trials, clinical trials with only the white patients, do we have the answer for the Black patients, or we have the answer for both and other races and ethnicities as well. 

Dr. Nyame: 

And I do want to take this opportunity to add one more thing because Dr. Grivas was talking about what does your treatment mean for you, and in this discussion about prostate cancer, we cannot talk about what questions do you bring without mentioning the impact, quality of life of our treatments? And I think that sometimes this is the elephant in the room that leads to the decision to not pursue treatment, and so I want to take this opportunity as the urologist to say this is the time to talk about what treatment is going to do for sexual function. This is the time to talk about what treatment means for your urinary symptoms and quality of life, a good and healthy discussion around these things need to happen during your visit, because I think sometimes what patients expect to have happen with treatment and reality don’t match. And you have an expert in front of you that can really give you some input as to what to expect, and in a similar vein, when you meet with survivors, these are some of the things that I know patients tell me they’re worried about, and these are people who are living it, that can give you really valuable information on that piece of quality of life, and I hope that those conversations can help us close that treatment disparity that we see between Black men and white men with prostate cancer. 

How Can BIPOC Prostate Cancer Patients Protect Themselves Against Care Inequities?

How Can BIPOC Prostate Cancer Patients Protect Themselves Against Care Inequities? from Patient Empowerment Network on Vimeo

How can BIPOC prostate cancer patients help protect themselves against care inequities? Host Dr. Nicole Rochester and Dr. Yaw Nyame share their perspectives about factors that work against equitable care for some BIPOC patients – and how patients and providers can work toward improving care for better health outcomes.

See More From Best Prostate Cancer Care No Matter Where You Live


Related Resources:

How Can Prostate Cancer Patients and Providers Help Ensure Quality Care?


Transcript:

Dr. Nicole Rochester: 

We know that there are as with every other type of cancer and every other disease, there are significant health disparities with BIPOC patients. And so, Dr. Nyame, I’d love for you to talk about specifically with prostate cancer, some of the disparities that you see in your practice and in your research, and then what are some things that patients of color can do to protect themselves from these inequities? 

Dr. Nyame: 

This is a very important topic for me, it’s something that I am very passionate about, and as Dr. Grivas alluded to, I am doing a lot of research on, and I think the statistics are so grey. Black men are 80 percent more likely to be diagnosed with prostate cancer. So the average man in the United States has a one and nine lifetime risk of being diagnosed with prostate cancer, that’s probably one in six or one in seven Black men. Black men are twice as likely to die from prostate cancer compared to men of other races and ethnicities in the United States, and a lot of this is driven by the social milieu and factors that we’ve talked about today. What troubles me is when we talk about these statistics, I fear that that in of itself is crippling for some Black men, “If I have this diagnosis, and I’m not going to do well. Why should I do anything?” And I can tell you that the literature and all the research that we do, and it gets refreshed every 10 years or so, someone will do the study and it shows that if we have Black men and men of other races or white men, and we give them the same treatment for the same level of disease, that the outcomes are actually very similar. And a better way to state that for me is if you’re diagnosed early and you get the treatment that you should get irrespective of your race, it seems like outcomes can be quite good. 

And so, a lot of what we see with regards to prostate cancer inequities are driven by lower treatment rates and probably an impact of lower quality care. And when I say that, what does that mean? Well, do you get your care at places like the Seattle Cancer Care Alliance or the Cleveland Clinic, or Johns Hopkins or MD Anderson, where you have providers who are expert and do a lot of prostate cancer care, or are you being seen by someone in the community who I guarantee is an excellent clinician, but doesn’t have the same resources and the same expertise, in the sense of being focused on one disease process or one set of cancers? For instance, we are genitourinary cancer specialists, a fancy term for being cancer doctors of the plumbing system. But because that’s all we focus on, we know a lot about the process, we know what works, and we know what the standards of care. So, I think when you can get the right treatment at the right time, and you can get it from teams that are really specialized in this, that our outcomes are going to not care about what your self-defined race is when you check the box. 

The problem is, how do we get…how do we close that gap that exists currently that doesn’t allow people to get that care, and I think we’ve talked about rurality, so I think…I grew up in Oklahoma, and I could see that if you are in the sticks in Oklahoma and you’re not near a cancer center, like something down in Dallas, that your care might be impacted, but…especially if you have to travel a lot and it’s expensive. But we have major U.S. cities like Los Angeles where you may share a ZIP code with a millionaire but use very different health services. So, it’s not always a reflection of how far you have to travel, but it also is factors about how welcoming institutions that provide high quality care can feel for populations like our BIPOC populations who sometimes have been the subject of medical experimentation and lower quality care sometimes because they might not get shuttled to the same services historically. And I think we have a lot to undo to rebuild the trust that is required to have Black men not be fearful of seeking care from us, but be trusting. 

What Are Some Practical Solutions to Prostate Cancer Care Barriers?

What Are Some Practical Solutions to Prostate Cancer Care Barriers? from Patient Empowerment Network on Vimeo.

Are there practical solutions to removing prostate cancer care barriers? Host Dr. Nicole Rochester, Dr. Yaw Nyame, and Dr. Petros Grivas provide insight on how solutions to barriers can be approached and share some support resources for improved patient outcomes.

See More From Best Prostate Cancer Care No Matter Where You Live


Related Resources:

What Barriers Do Prostate Cancer Patients Face When Seeking Care? 


Transcript:

Dr. Nicole Rochester: 

Let’s shift to solutions and what are some of the solutions that you all recommend for some of these barriers, as physicians, a lot of that is going to be out of your purview, but I’d love for each of you to suggest any solutions for our patients and care who may be facing some of these barriers, so this time we’ll start with you, Dr. Nyame. 

Dr. Nyame: 

This is an area where I think we need to do better in collecting information to understand where the need is, and so I think there is a very much a need for translational health services or patient-centered research, where we do the simple thing, if I was going to open up a lemonade stand in the middle of Seattle, I’d probably ask a few people what their needs are around lemonade before I open the stand, and I think in medicine, we often offer our services and solutions without having had that simple conversation of What are the needs? I think in addition to that, we have to understand that equitable care might mean offering additional services for certain populations, so for us at our cancer center, for instance, we’ve recently instituted a patient navigator program, something that’s been around for a long time, and other sites but it’s allowing us to do that, go through that exercise of providing some equitable care by helping people coordinate appointments, find their way to financial resources that might support them, and just to be there as a support in the very difficult time of having a new cancer diagnosis, so I think that’s a well-proven and well-established method for helping people get access to care. 

The other thing I’ll add is that we make decisions, I think as humans, we make decisions through community, and sometimes that’s our partner, sometimes that somebody at the gym, sometimes that’s a co-worker, and there are a lot of really fantastic patient advocacy networks that exist that can help people find this new community, and I think cancer patients share a very unique bond and in a very unique way to communicate with one another because they’re living through this particular diagnosis, and so for in the case of prostate cancer, especially prostate cancer in Black men, you have the Prostate Health Education Network, you have Zero Cancer, you have Us TOO, you have the Prostate Cancer Foundation, probably leaving some advocacy groups off and I’m probably going to get in trouble, but I think that there’s that opportunity to reach out to others and just learn…what did you go through, what worked for you? How can I meet my goals of care through just conversation with other patients and survivors, and I’ll try to leave something for Dr. Grivas to the conversation because clearly I could go on and on. 

Nicole Rochester: 

Dr. Grivas? 

Dr. Grivas: 

I’ll tell you that I’m learning every day from Dr. Nyame, his fantastic work in this important topic, and I think he covered the answer so well. If I can just add a few more things just to expand on this of sorts, and these are things that already he’s doing in his programmatic development in our institution as well. I think one of the important things we have to acknowledge all of us is the issue of systemic racism and implicit bias that I think you referred to Dr. Rochester. I think the more we talk about, the more transparent we are with it, the better because we can think about what are unconscious or subconscious thoughts that we may have, you know, “This patient doesn’t care about themselves. Why should we go the extra mile to help them?” We should go the extra mile to help them, because this patient may have less inside of the situation, and they need more resources and as a healthcare system, we should try to earn that patient, right? We should not let that patient go, because every patient matters, right? And I think every life matters. I think that’s important. I think overall a systemic issue to discuss. The other thing is getting our sense of the community, and I think the examples of studies we have done in the clinic and other areas that we try to utilize the wisdom and the help of local leaders in those communities for example, underserved populations go to local churches or barber shops or gyms as Dr. Nyame mentioned and collaborate, work with the local leaders and see how we can have a dialogue with the patients there? How can we establish this trust that may be missing, how we can convey that health is important, and prevention is important, and treatment is important, how can we help with financial constraints, right? How can we get patients to the cancer center without them having to worry about how to get there, how can we reach out and have screening in the present county screening in the community, if it’s indicated then access to care telemedicine, and that brings an issue, do the patients have equipment for telemedicine, a computer, we take it for granted, but it may not be. So given those resources, organizing some local centers with this Men’s Health Day, just to get people in a room and educate them, but also learning from them what are the barriers to take it into account, not talk down to them, but learning with them and from them. 

The other thing is research and that will have to do a better job to include an offer in an equitable manor clinical trials to our patients including patients from different races and we are doing, I think, overall, okay, but we are not doing enough, we have to do better in order to provide this opportunities to our patients and the role of patient navigators is great. We can set examples, and we have patients who feel much more comfortable when they have a patient navigator. Sometimes if it happens to be in the same race with a patient then the patient feels more comfortable. They have someone that they can trust or it will be easier to talk to, and I think we should definitely improve and work harder to provide access to research inequitable manor to our patients. The last point I would say is, patient co-pay assistance programs and foundations, I think we can definitely include more resources to our patients, philanthropy, foundation support and state programs in order to give those patients the resource they need again to achieve this holy grail, which is equitable health care. 

How Does Stress Correlate With Your Prostate Cancer Diagnosis?

How Does Stress Correlate With Your Prostate Cancer Diagnosis? from Patient Empowerment Network on Vimeo

How do stress and cortisol levels contribute to prostate cancer incidence and aggressiveness in Black men? Dr. Leanne Burnham explains her research studies where they looked specifically at the role of stress in prostate cancer, tumor aggressiveness, and Black men — and also shares research about cortisol levels in African American children.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are Some Hereditary Factors Impacting Prostate Cancer Patients?

Top Tips and Advice for Prostate Cancer Patients and Caregivers Navigating Treatment

Should Prostate Cancer Screening Happen at an Earlier Age for Certain Patient Populations?

 

Transcript:

Dr. Leanne Burnham

I have a few publications that look at the role of stress and prostate cancer, tumor aggressiveness, and Black men. And so, I looked at Black men specifically, because I have wondered if Black men who maybe were exposed to more stressors in their lifetime if that had any correlation to Black men getting prostate cancer earlier in their life and getting a more aggressive disease. And so, there were very realistic ways that we were able to look at that in the lab and then also in collaboration with public health colleagues that I have. Because what we know there are studies that show that African American children experience more stress, and their cortisol levels in their bodies are effective much earlier than any other race, and their studies that show the distress begins in the daycare setting based on discrimination that they may have from the adults that are taking care of them in that setting. And so, imagine cumulatively how that looks, and so we have ways that there are validated scales to assess levels of stressors that people have been exposed to. So that could be…what are your finances looking like? Have you been affected by incarceration yourself or anyone in your family? Have you experienced the death of a loved one? Has your home been broken into recently?

There are all kinds of, there are hundreds and hundreds of questions, and we can get to the root of how much stress has somebody been exposed to. And we know that unfortunately, African Americans in this country are exposed to more of these stressors than other demographics, and so what we did was look at the elevated stress, we could look at the cellular level and see, now if we’re growing prostate cancer cells, so that’s what I did. I was growing cancer cells in the lab that were from Black patients and white patients, and I would expose them to stress hormones in the flask, or maybe you like to think of it as kind of like a petri dish, but in the flask where the prostate cancer cells were growing. I would treat them with stress hormones, and then I would look and see do the cells grow differently, do they express genes and proteins differently based on race? And what I found very surprisingly, disturbingly, whichever adverb you want to use, that the African American prostate cancer cells, when they were exposed to stress hormones, the tumor cells became more aggressive, and they up-regulated genes that we know prime a patient to resist therapy.

So, the genes that were up-regulated in these prostate cancer cells are genes that we know, let’s say if a patient were to get chemotherapy, that patient would be more likely to fail that chemotherapy early, which is a terminology we call chemo resistance. And so those are studies right now that have just sort of, they’re newer to the forefront looking at stress and tumor aggressiveness. But there are studies going on nationwide right now involving thousands of African American men participants, where we are looking at the role of stress and what that does in terms of prostate cancer, aggressiveness in Black men specifically, and seeing what we can do to address it. But first we have to acknowledge that the problem is even there, a lot of people don’t think the problem is there, but we are scientists, we think the problem is there. So, we have to get the data to show the public that the problem is there, and then we need to really address the systemic racism that leads to this elevated and chronic stress that other demographics don’t have to deal with, because it’s literally leading to increased disease and increased health disparities. And if that’s something that we can change at some very basic levels, then that will improve health overall.

Should Prostate Cancer Screening Happen at an Earlier Age for Certain Patient Populations?

Should Prostate Cancer Screening Happen at an Earlier Age for Certain Patient Populations? from Patient Empowerment Network on Vimeo

Should prostate cancer screening be done sooner for some men? Expert Dr. Leanne Burnham details screening guidelines from the American Cancer Society and the U.S. Preventive Services Task Force, how guidelines differ for Black men, and when to advocate for earlier screening.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are Some Hereditary Factors Impacting Prostate Cancer Patients?

Top Tips and Advice for Prostate Cancer Patients and Caregivers Navigating Treatment

How Does Stress Correlate With Your Prostate Cancer Diagnosis?

 

Transcript:

Dr. Leanne Burnham

In terms of prostate cancer screening, the current recommendation by the U.S. Preventive Services Task Force is that men between the ages of 55 to 69 have a discussion with their physician about whether or not they should be screened. Okay, now the U.S. Preventive Services Task Force base this decision on studies, as I mentioned earlier, in predominantly white men, if you look at American Cancer Society, the recommendation is that African American men are screened at age 45 and African American men who are 40, but have a family history of prostate cancer should be screened at age 40. So the issue is most physicians follow the U.S. Preventive Services Task Force recommendation for white men. And so, if you have a family history, or if you’re just 45 and you want to know, do you have prostate cancer, you have the right to ask your physician and let them know. Show them on your phone, American Cancer Society recommends this for me because of my race, because of my family history, and your insurance will cover that. Now, these recommendations for Black men in their 40s are not just for no reason, it’s because we see prostate cancer in men at this age, like I said before, my dad being diagnosed at 50 with a PSA score of 64 means that he was growing prostate cancer in his 40s, and who knows how early in his 40s if that was happening. At City of Hope, we provide free prostate cancer screening in the community, and there’s thousands of men that are eligible to be screened, and what we see is there are men in their 40s that have elevated PSA, and if we can catch that early enough, that’s a game changer for them in terms of the length of their life and the quality of their life that they’ll have moving forward.

So, one thing that we see in the community, and I talk to a lot of men about, is not even just men, people in general, trust their doctor, right, they trust to speak to their physician. If the physician says, “It’s your annual visit, you need to have A, B, and C done.” A lot of the men, they’ll say, “Oh, I went to the doctor, I had everything done,” and we really have to let them know your doctor may not have included that with everything else. Yes, you’ve got your blood pressure checked, your blood sugar, and they checked your weight and all this, but go through your record, and a lot of these records are electronically available in apps now and see. Just look at your app and see, did they test for PSA? And if they didn’t and you’re 45 and you’re African American or you’re 40 and you have family members, then that’s something you can shoot your doctor an email and request and just say, “You know, I’m concerned about this, and I would really like to have this test done based on American Cancer Society’s recommendations.” And what we see a lot of times too in the community, is men will say, “Well, I feel fine.”

Well, what you need to understand about prostate cancer is, men do not have symptoms unfortunately until it is beyond early stages is how it works, and so as men get older, the prostate enlarges, whether or not they have prostate cancer or not, and it causes a frequency in urination especially at nighttime. So, if you have a frequency in urination, it will occur as you get older, that’s something you need to let your doctor know. It may not be prostate cancer, so don’t freak out, but it very well may be other symptoms as prostate cancer progresses include back pain, sometimes sexual dysfunction, things like that start to occur, and back pain can be anything. So that’s why it’s important to get your PSA tested even if you don’t have symptoms, because I can tell you that, my dad did not have any symptoms with a PSA of 64, and the only reason I found that was on accident in an emergency room, he went to the ER after having a colonoscopy. And my dad never got sick for anything that he didn’t even understand what physical discomfort means, and he had a colonoscopy, and you know, when you get a colonoscopy, they tell you afterwards, you may have some gas pain, he never had gas pain. So, he didn’t know when his stomach was hurting so bad afterwards, he just thought, this is not okay, this is not okay, he goes to emergency room, they say, Listen, sir, it’s just gas from your colonoscopy, by the way, we ran your blood work, your PSA is extremely elevated. He found out on accident. Who knows how much longer that would have been growing after that, and so I say all that to say, do not expect, do not wait for symptoms to come, and that Black men do get prostate cancer young and that you wanna catch it early because then you have a 100 percent cure rate when you catch it early, so it just makes the most sense to stay on top of it.

Top Tips and Advice for Prostate Cancer Patients and Caregivers Navigating Treatment

Top Tips and Advice for Prostate Cancer Patients and Caregivers Navigating Treatment from Patient Empowerment Network on Vimeo

What should prostate cancer patients and caregivers know about prostate cancer treatment? Dr. Leanne Burnham shares advice for patients with concerns about treatment side effects, information about active surveillance, and some specific advice for Black men with prostate cancer.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are Some Hereditary Factors Impacting Prostate Cancer Patients?

Should Prostate Cancer Screening Happen at an Earlier Age for Certain Patient Populations?

How Does Stress Correlate With Your Prostate Cancer Diagnosis?

 

Transcript:

Dr. Leanne Burnham

Yes, so it is a couples’ disease for sure, and you want to make sure to do a little bit of your own research. Make sure that your doctor knows how this disease affects Black men differently, because what I see a lot of time, even in my own family, my husband’s family members that get prostate cancer and they come to me, a lot of times, their doctor will recommend active surveillance. And it may not be appropriate for African American men if you look at the research and you look at the studies. And so, it may benefit you to just ask your doctor, “Do you treat a lot of Black patients, or do you see any difference in their survival rates versus your other patients?” And really consider that when you’re thinking about whether to do active surveillance or not. Once it gets time for treatments, one thing when I — because I talk to a lot of men and support groups, and men are scared, they don’t want to lose their urinary function, they don’t want to lose their sexual function. And so, they’re nervous about certain diseases and in terms of surgeries and radical prostatectomy, there are nerve-sparing surgeries now to really protect that function afterwards, and there are exercises that can be done afterwards to also help improve, and so ask the nurses in your setting, “What are some of those exercises that can be done?” But one thing to keep in mind is every treatment comes with its sort of risk, right?

So, no matter whether you choose radiation or surgery, there’s always a risk that you may lose some of that function, what I tell men, and not to sound not sensitive to the matter, but a lot of men, they’ll say, you know, “Oh, if I get this treatment and what if I can’t have sex anymore?” You’re not going to have sex when you’re buried 6 feet underground either. And so, you want to be able to get those treatments, the ones that you and your physician have a shared decision in and in deciding what’s best as a couple. But you don’t want to be naive if you’re at the doctor and you have a really elevated PSA and you have a Gleason score of 8, and your doctor is telling you, “We really need to treat this,” you don’t want to shy away from that, because you’re scared of the side of the side effects in that setting. You can look for where the best surgery center is if they have the nerve-sparing surgery, as I said, and explore your options that way. But don’t put it off so long, because you’re worried about the side effects. And if you don’t get treatment and your doctor wants you to, as time goes on, you’ll lose the urinary function and the sexual function anyways.

So yeah, it’s not something that you want to put off because you’re scared about the side effects. And a lot of men do have side effects temporarily, and then they regain their function, and I really encourage to join support groups virtually now because of how the role is set up. But just talk to some other men that have had some of these procedures and see how they’re doing. And I personally haven’t met a man that felt like, “Oh, I have been cured from prostate cancer, and now I have the side effects, and I wish I wouldn’t have had the procedure,” I haven’t met one. And I know in those who have side effects and they had surgeries and 10, 15 years ago, and they have side effects, I’m not going to act like that doesn’t happen. But none of them have ever expressed to me that they wish they could go back in time and not do that, because, at the end of the day, they’re grateful that they are still here with their loved ones.