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How to Locate Prostate Cancer Clinical Trials and Improve Awareness

How to Locate Prostate Cancer Clinical Trials and Improve Awareness from Patient Empowerment Network on Vimeo.

 How is prostate cancer impact different for some populations? Watch as experts Dr. Yaw Nyame and Sherea Cary share the benefits of clinical trials, reliable clinical trial resources, and how clinical trial participation rates can be improved for better care.

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


Related Resources:


Transcript:

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, because 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 prostate cancer 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. 

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


Related Resources:

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. 

Why Is Prostate Cancer Often Referred to As a Couples’ Disease?

Why Is Prostate Cancer Often Referred to As a Couples’ Disease? from Patient Empowerment Network on Vimeo.

Prostate cancer is often referred to as a disease of couples, but why is that? Watch as expert Dr. Yaw Nyame shares the impact of social support on prostate cancer outcomes and ways that family and friends can help with prostate cancer care.

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


Related Resources:


Transcript:

Sherea Cary: 

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 doctors’ 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-life span, but has really life-altering potential consequences of the treatments you received, has an impact on what we return for 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.  

How Can a Multi-Disciplinary Team Benefit Prostate Cancer Patients?

How Can a Multi-Disciplinary Team Benefit Prostate Cancer Patients? from Patient Empowerment Network on Vimeo.

 A prostate cancer multi-disciplinary team can benefit patient care. Watch as expert Dr. Yaw Nyameexplains the typical steps taken through prostate cancer care and how the team members can vary for localized prostate cancer versus advanced prostate cancer. 

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: 

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 are 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 a 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 are a lot of people that you may want to put on your team as you’re considering your care.  

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


Related Resources:

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.

How Has the Onset of Prostate Cancer Evolved?

How Has the Onset of Prostate Cancer Evolved? from Patient Empowerment Network on Vimeo.

Prostate cancer diagnostic testing has evolved over time. Watch as expert Dr. Yaw Nyame from the University of Washington shares insight about how prostate cancer diagnostic tests – and, in turn, treatment versus active monitoring are used for patient care.

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


Related Resources:

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


Transcript:

Sherea Cary: 

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 up front. 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. 

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. 

Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing?

Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing? from Patient Empowerment Network on Vimeo.

Why is it genetic testing important when it comes to prostate cancer care? Learn how test results could reveal more about YOUR prostate cancer and may indicate that one treatment may be more effective than another.

See More From INSIST! Prostate Cancer

Related Resources

How Does Genetic Testing Impact Prostate Cancer Care?

Treatment Options for Advanced Prostate Cancer

What Is a Prostate Cancer Genetic Mutation?


Transcript:

Why should you ask your doctor about genetic testing?

The test results may predict how your prostate cancer will behave and could indicate that one type of treatment may be more effective than another type.

Genetic testing identifies specific gene mutations, proteins, chromosomal abnormalities, and/or other molecular changes that are unique to YOU and YOUR prostate cancer.

There are two main types of genetic tests used in prostate cancer:

  • Germline or hereditary genetic testing, which is conducted via blood or saliva and identifies inherited gene mutations in the body. Germline mutations are present from birth and can be shared among family members and passed on to subsequent generations. Results can identify whether you could be at risk for another type of cancer or if your family members may need genetic counseling and testing to guide their own cancer risk.
  • The second is somatic or tumor genetic testing, which is performed through testing tumor tissue or by testing cancer cells/DNA extracted from blood to identify gene mutations that are unique to the cancer itself. It is also commonly referred to as genomic testing, biomarker testing, or molecular profiling. Somatic mutations are NOT inherited and are NOT passed on to subsequent generations or shared among family members.
  • Depending on your history, your doctor may order one–or both–of these types of tests.

So why do the test results matter?

Both germline and somatic mutation testing can identify the presence of certain genetic mutations that may help to guide your treatment plan, and germline testing specifically can inform cancer risk for you and, potentially, family members.

  • In some cases, mutations can indicate that a newer approach, such as targeted therapy or immunotherapy, may work better for you.
  • Results of these tests may also help you to find a clinical trial that may be appropriate for your particular cancer.
  • And, genetic testing results could also show that your cancer has a mutation or marker that may prevent a certain therapy from being effective, sparing you from getting a treatment that won’t work well for you.

How can make sure you have had essential biomarker testing?

  • First, always speak up and ask questions. Remember, you have a voice in YOUR prostate cancer care.
  • Ask your doctor if you have had or will receive genetic testing, including germline and somatic testing, and how the results may impact your care and treatment plan.
  • Ask whether your family members should meet with a genetic counselor or undergo testing to help gauge their risk of developing prostate cancer.
  • And, finally, bring a friend or a loved one to your appointments to help you process and recall information.

To learn more about your prostate cancer and to access tools for self-advocacy, visit powerfulpatients.org/prostatecancer

Advanced Prostate Cancer: David’s Clinical Trial Profile

Advanced Prostate Cancer: David’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Prostate cancer patient David received a diagnosis at stage IV during a routine PSA check. Watch as he shares his prostate cancer journey, his experience with clinical trials and treatments, and his advice to other patients about lessons learned about prostate cancer side effects and the impacts of clinical trials.

See More From Patient-to-Patient Diverse Prostate Cancer Clinical Trial Profiles

Transcript:

David: 

Hello, my name’s David. I am 58 years-old.I was diagnosed in 2016 with prostate cancer, I had no actual signs or symptoms of prostate cancer, it was only found due to Army doctors, I had something wrong with me, which had nothing to do with the cancer. They did a PSA check, and my PSA came back at 1050, where it should be around 0. From that I then got sent to a local hospital where I had tests, I had biopsies to open my prostate, which found out I had stage IV prostate cancer. 

From there I got asked would I like to go to the Christie County Hospital in Manchester, UK. From there, they offered me the trial called the STAMPEDE trial. This trial was used in different procedures, which is already around, we use them together to try and extend people with prostate’s life. I got to turn the arm where it was also attached with chemotherapy, followed by 20 sessions of radiotherapy. This happened over three, four months, which after that brought my PSA down, but only to round 20 odd. From this after a couple of months, my PSA started to rise fairly quickly. I then got put onto the drug called bicalutamide (Casodex). This lasted a couple of months, because my cancer is so aggressive, it started to grow. I then got put onto another chemotherapy, cabazitaxel (Jevtana). After my first session of the cabazitaxel, I then got a CT scan and from this we found out the growths were still growing. 

So after this, I then got put on a drug called abiraterone with [inaudible] which is a stand-only. I was on this for 22 months, which was very good, it brought my PSA down to eight, which is as low as it’s ever been. Like I say, it lasted 22 months, but then the cancer started to come back quite a bit, so my oncologist actually said there’s no actual normal treatment left for me, and asked would I like to go on to trials, clinical, a first stage clinical trial, right away I said yes. My first clinical trial was a Carrick called Carrick, this lasted six months, but again, the cancer started to grow again, so I came off of this. I then have four weeks, no trials at all. It’s what called a clean-out where you can’t have any drugs at all in between trials. I then went on to what was called task 368-1, this lasted longer which lasted seven months. That again, the cancer starts to grow again. So, then I got on this one called CellCentric For the the CellCentric trail, they put you back on to abiraterone, which normally you don’t, wouldn’t take past one to two months… for me, it’s carried on working again. It’s now on seven months of working until it stops working, I can’t go on the new drug called CellCentric. 

For me, this is cool because it’s still working, the old drug, and it’s a very…let’s say there’s not a lot of side effects except for what steroids [inaudible]. So at the moment, we’re just seeing how it goes. I have scans every eight weeks, a CT scan and a full body scan from each time they come back, they then decide what’s happening next…and that is my journey up to now, which is five-and-a-half years later. 

With the clinical trials, I feel really good at the moment, because as I said, the trial [inaudible] and abiraterone (Zytiga) is not a drug that causes a lot of side effects. Through other trials have been, they are very intense, and that’s what they always warn people, which are overnight stays when you first take the drugs, so they are very tiring, you have to have blood done overnight all the way through the night, you get BCGs to make sure your body is not reacting to the drugs, and then the side effects of the drugs after.  So, they are very intense, but also, I am still here, I did not expect to be here. October, this year October I got told I would not be here three years ago, so it shows what clinical trials can actually do for you.  I’m still here, I still live a very good life. We go walking, the wife and I quite often, and we did three, four-mile last night, and we just enjoy our lives. 

People don’t realize…a lot of men don’t talk about it the physical side and the sexual side of prostate cancer, the treatment, because your libido to go, and it just causes a [inaudible] of your testosterone. You don’t feel like…and it’s a closeness that you lose… Amanda’s been unbelievable, she’s been there for me all the way through. She’s my rock, she’s the one went down down, she pushes me, but then she has days where she’s down. And this is where people need to realize the partners will improve the encounters much as the patient. And this is some of them we talked about…we’re very open about people where we talk about it. We have our days, the last couple of days I’ve been down. But she’s there to try and help me get back, and I try and do it for her when she is…and the family is the same, having the family support, when I’ve been to appointments, I get phone calls, quite a few, I get messages how are things going. And it’s just nice knowing that people do care, we have friends who keep in touch all the time, make sure everything’s okay, and you need that support of your family and friends. 

It’s very important for them to be there with you. 

The clinical trial to me is drugs that normally are not being used on humans before. They’ve only been tested in the laboratories. So, the first stage is a dosage stage where they check in and see what a person can actually take…so different people have different amounts of the dose.  And then from there they go to the expansion stage, and that is when they bring more people, and they know what dose to give people. Well, it’s to find new drugs, which can help other people in the future, as well as myself…I always say to myself, “This could help someone in the future, live for longer, stay longer with their family, be there longer.” It’s helping me other months, as I say, but it’s also to help other people in the future, something that’s not been used with people before.  

What I would say to other people who are thinking of going on clinical trials and the families is go for it. They are done so carefully, you’re checked all the time, your bloods are checked, your health is checked, your [inaudible]. It’s something that you can stay longer with your family. There could be cures in the future with this as well, no one actually knows, and it’s something people should not be scared of doing. Like I said, I’m on my third trial, and I will keep on going, I know there are more trials for me after this. And I will keep on going. 

Advanced Prostate Cancer: Gary’s Clinical Trial Profile

Advanced Prostate Cancer: Gary’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Advanced prostate cancer patient Gary was an athlete in the first Oncology Olympic Games in Rome. Watch as Gary shares his prostate cancer journey, benefits and knowledge he’s gained from clinical trials, and his advice to others considering participating in a clinical trial. 

See More From Patient-to-Patient Diverse Prostate Cancer Clinical Trial Profiles

Transcript:

Gary: 

My name is Gary, I’m 66 years old and in January 2011, I was diagnosed with stage IV metastatic prostate cancer. 

I started my journey after the diagnosis, It was quite hard to take because I didn’t have symptoms, and it was a complete shock, and I found out by accident by being in hospital with pneumonia. When I found out, the team came around to talk to me, and they said there are lots of things open to me, like new medications, chemotherapy, radiotherapy, and clinical trials. So it started off very positive, and that made me feel positive about it as well. I started off on hormone treatment and my PSA over a few months went down from 255 down to 12. In October of that year, I started on an infusion every four weeks to strengthen the bones and stop osteoporosis. So that was an important move. Then my PSA started rising again, it crept up to 83. So I was only on hormone treatment, and that was when they offered me the PREVAIL trial. I looked up on the Internet about the trial when it was a trial that was known as MD-310 at the first stage of firm tests in America, and then they were rolling out the stage two tests, so I discussed it with my family. 

And we decided it would be a good move. And so I signed up for the clinical trial, and I started the trial on the 23rd of December. Being a 50/50 placebo versus drug, I didn’t know whether I was going to be on the drug or not. Come the new year after of couple of months, I started feeling better and my PSA started going down again. I felt more energetic and my consultant agreed with me when I said I thought I was probably on the drug because there’s a difference. It actually was the one thing that I’ve done that changed my life because I had a future, I felt better which I was a bit worried about doing because of the prognosis when they said it was up to two years depending on if I go to a good treatment. And the longer I was on the drug, the better I felt. I had side effects. I was clinically castrated by the drug, because it cuts off all the testosterone apart from that. 

I had a very, very good life. My wife and I’ve been married since we’ve been 19. We got married in 1974, and we’re solid as a rock. She is my rock all the way through this. Sometimes it’s harder for her, I think, than for me, because she’s watching what I’m going through. But after I’ve been on it for so long, we got really confident, and life was completely normal. And then came my first grandchild in 2014, and closely followed by the second one, two years later, and then the third one last year in lockdown, and they have made it such of my life such a joy. So I’m so thankful for deciding to go on a clinical trial. I would recommend clinical trials because you’ve got the basic treatments, but clinical trials can make a big difference, because although they are not tested drugs they’re probably the drugs of the future. 

And you can get on the ladder early and be on these drugs, and instead of giving it…giving me about three years, it worked for nine years. So it gave me nine years of worry-free life. I’ve had my ups and downs, I had some phases of [inaudible] radiotherapy here and there, but it was…it really did make a massive difference to my life. And I don’t think if I hadn’t gone on that clinical trial, I don’t think I would have been here now.  I relish every single minute I’m here and if another clinical trial, that would suit me came up tomorrow, I would definitely think about going on that one as well.  

Advanced Prostate Cancer: Willie’s Clinical Trial Profile

Advanced Prostate Cancer: Willie’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Prostate cancer patient Willie was diagnosed in 2021 at the age of 65. Watch as he shares his prostate cancer story from diagnosis to how he’s doing today, his experience with a patient navigator and a clinical trial, and his advice to both Black men and to all others with prostate cancer.

See More From Patient-to-Patient Diverse Prostate Cancer Clinical Trial Profiles

Transcript:

Willie: 

My name is Willie. I’m 65 years old. In 2021, I found out that I had prostate cancer. 

 I would like to explain about the experiment that I went through in prostate cancer. Some that was, I was afraid of because that word cancer and that word to me, out of all my life, I done heard that, all I thought about was death. It kills you. You’re not going to live. And I was trying to find out where and how I got cancer, and I didn’t get no idea until I was able to sit down, talk with my navigator and what procedure I would have to go do in order to help me with my cancer. So they gave me some choices. One I didn’t like because I had to be hung upside down for four hours, and I didn’t think I can do anything like that at my age. And next, they told me cancer, radiation, and I was scared of that because it was like burning fire. And I had seen other people how it done them and their skin, and it put fear in me. So, I decided to go and talk to my doctor. 

I want to be healthy. And when I started my cancer treatment, it was the scariest move. When they put a gown on me and laid me on that bed, they put these machines on me, and I had to lay there, and they mark me where they want to set it up, or where the cancer was at, they’re going to do the radiation. I didn’t understand it. I really needed help in my house, I was so sick, I own a bed, it’s a pull-out bed out of my couch. So I went to a bag, a bean bag to be able to lay on each and every day I was just under that much pain, and it was miserable to me, and I kept on working on it. I didn’t want my hair to be falling out. I didn’t want my body to be deformed all that was on my mind, and I decided to go and do this radiation. And now I can tell anybody I know it’s scary, I have experienced it, but it’s really after you get done with it, you’ll be so happy that it makes you feel like you were one time before, you’re back to your normal, you’re you. 

My reason to take the clinical trial, because I had fear in me about prostate cancer, and I did not know where and what it would be like of carrying this. So I had in my mind that I wasn’t going to do it. I couldn’t sleep at night. You know one…and how is it going to, how is this cancer going to hit me? I’m laying in the bed, “What’s it going to do? What should I do? How should I sleep to keep from worrying about me and this cancer?” I’m running back and forth to the bathroom, couldn’t eat and appetite gone and I got to the point, I’m going and take this test. So I called the navigator and he and I discussed this, and he convinced me.  

A clinical trial to me is the work of getting you with your prostate taken care of. I experienced a lot of goodness after I realized what this was really about.  The clinical trial, it really made me happy to be a part of it because I just didn’t believe that after learning about that word cancer, I’d feel good. I’d feel like I ain’t got the cancer, and that’s what that clinical experience showed me, and made me feel like. So, I’m happy with it. 

My advice to men, especially Black men, I advise them to check themself, your whole body, you need your health taken care of, if you want to be able to be out here and live with this prostate cancer. One thing I do know about Black men, they are afraid when it comes to taking care of themself as though they can look in the mirror and see all about themself and tell you whether there’s something wrong or not, but you can’t do that. I advise all men, not just only Black to take time out, talk to your provider. A lot of us got it, and we don’t even know we are carrying this around with us, but you like to go out and have fun, smoke your cigarettes, drink and do all your partying, but you’re still carrying that death weight on you. We don’t need that cancer, prostate. And I would advise all men, take time out and check yourself out, because it’s a good thing in life to do as being…want to be here on earth amongst other good men. And I would like to say, please do this, I’m a living witness. 

Look at me. I feel just the way I look and I’m serious to tell you to take that time out for yourself. 

August 2021 Notable News

The news this month is a little nutty! Actually, it’s a little peanutty! It turns out that eating peanuts could cause cancer to spread but drinking milk could save young people from developing colon cancer. Widowers are more likely to have advanced prostate cancer, and having a positive attitude isn’t necessarily a requirement for surviving cancer. All that and a glimpse into the state of cancer rates across the globe.

Global State of Cancer

A chart detailing the cancer survival, incidence, and death rates of several countries provides information about the global state of cancer, says medicalnewstoday.com. The lowest cancer rates were found in India, which also had the lowest cancer death rates. Doctors in India believe that prevention and education, service delivery, and research should all be equal in cancer care. The United States has the highest cancer rate, but possibly because of the screening tests that detect cancer earlier and more successfully than in other countries. However, the US also has a prevalence of cancer risk factors, such as obesity, that could be contributing to the high incidence of cancer. China has the highest cancer mortality rate. Learn more about the state of cancer in other countries here.

Potential Cause of Metastasis

A recent study shows that cancer patients who eat a lot of peanuts could have an increased risk of metastasis, reports sciencedaily.com. The study showed that, after eating peanuts, a carbohydrate-binding protein called peanut agglutinin (PNA) enters the blood stream. The PNA interacts with blood vascular wall cells which then leads to the production of cytokines, molecules that are known to cause cancer to spread. Another study showed that PNA binds to a sugar chain that is associated with cancer cells and that it could lead to the cancer cells being stickier and easier to attach to blood vessels. While more research needs to be done, patients may want to use caution when it comes to eating large quantities of peanuts. Find more information

here.

Vitamin D Benefits

Vitamin D could help younger adults protect themselves against colon cancer, reports usnews.com. Researchers have learned that the overall incidences of colon cancer are decreasing, but among younger adults, colon cancer is on the rise. The increase in cases seems to be linked with a decline in eating foods full of vitamin D, such as fish, mushrooms, eggs, and milk. The study found that young people could reduce their risk of getting colon cancer at an early age by about 50 percent if they consumed 300 IU of vitamin D each day, which is the equivalent of about three glasses of milk. The study is the first to make the connection between vitamin D levels and the rising rates of colon cancer in the younger population. Read more about the connection here.

Widowers and Prostate Cancer

Researchers found that widowers are more likely to be diagnosed with advanced prostate cancer, reports medicalxpress.com. Widowers tend to be diagnosed later than married men or men in a relationship, when the cancer has reached advanced stages and has spread into other areas of the body. Studies have shown that people living with a partner have a healthier lifestyle and are more likely to be encouraged to see a doctor when symptoms appear. For better health outcomes, widowers can turn to family and friends for support and be sure to have regular medical checkups. Learn more here.

Power of Positivity

Some people say that the secret to beating cancer is all about having a positive attitude, but as 20-year cancer survivor Caitlin Flanagan points out in theatlantic.com, sometimes it’s hard to feel positive about a cancer diagnosis and treatment. Read this great piece about why the power of positive thinking may not be a requirement to survive cancer here.


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Expert Perspective on the Future of Prostate Cancer Treatment and Research

Expert Perspective on the Future of Prostate Cancer Treatment and Research from Patient Empowerment Network on Vimeo.

How has prostate cancer treatment and research changed over time? Expert Dr. Maha Hussain shares her perspective about treatment and research progress, the role of the patient, and how to advocate for more research progress in the future.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

See More From INSIST! Prostate Cancer

Related Resources

Treatment Options for Advanced Prostate Cancer

How Does Genetic Testing Impact Prostate Cancer Care?

An Update on Prostate Cancer Treatment and Research


Transcript:

Katherine:

Dr. Hussain, how do you feel about the future or prostate cancer research, and what would you like patients to know?

Dr. Hussain:

First, let me say that I would love for the patients to know that they are a partner, a most critical partner in the process.

That we need to continue the research and investment in research. It is research that will end up curing cancer. Wishful thinking will not do it. And patient volunteering, which I think is remarkable across all cancers. The business I’m in, the way that drug discovery and evolution often happen because patients volunteered. And without testing these new treatments and combinations, we will not be able to get better results.

And I will tell you that, when I started my training, the median survival for patients with resistant prostate cancer was on the magnitude of about nine months. Now it is three years-plus. Now, you could argue, well, that’s not huge. But that is a huge change because, again, we’re picking up the cancers much earlier. And the patients who had, as I mentioned, metastatic disease, again, the longevity then at the time I was in training, but even afterwards, was give and take in the three years. And now we’re talking six-plus years.

And so, there’s been tremendous progress. And really partnership with the patients and their families and supportive others is very critical, and investment in research. So, yes, advocate constantly for more investment in research.