Tag Archive for: prostate cancer advice

An Expert’s Review of Advanced Prostate Cancer Treatment and Research

An Expert’s Review of Advanced Prostate Cancer Treatment and Research from Patient Empowerment Network on Vimeo.

What’s the latest in advanced prostate cancer treatment and research? Expert Dr. Tomasz Beer shares recent updates, and discusses how developing therapies could impact the future of prostate cancer care.

Dr. Tomasz Beer is Deputy Director at OHSU Knight Cancer Institute. Learn more here: https://www.ohsu.edu/people/tomasz-m-beer-md-facp.

See More From Engage Prostate Cancer

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Transcript:

Katherine:

When it comes to prostate cancer research and emerging treatment options, what are you excited about specifically?

Dr. Beer:                     

Well, there is so much to talk about there. And I do want to say that the things that we’re excited about and that are promising, we want to present them in the proper light, meaning that they’re significant potential advances, but they’re not necessarily cures next year.

You know, we want to raise hopes and excitement at a proper level. So, I think right now, what we’re seeing is progress that is likely to yield drugs that will extend survival, will help us control the disease in a meaningful way. We’re not yet at a point where we can, for advanced prostate cancer, have a reasonable hope of cure in the near term. That doesn’t mean we’re not trying. We’re aiming high, absolutely.

But at the moment, the most exciting thing right in front of us, in my view, is lutetium 177-PSMA 617. That is a radioactive molecule attached to a binder that is specific to prostate-specific membrane antigen, PSMA, and essentially delivers this radioactive drug directly to prostate cancer cells by attaching to that target, the PSMA.

We recently completed and reported at ASCO and published in the New England Journal of Medicine the results of a Phase III trial, where we were able to show extension of life, extension of control of cancer, in a meaningful way, with this drug, and we’re eager to see the FDA’s review, and I think generally hopeful that the FDA will allow this drug on the market hopefully in the coming months. So, that’s a real tangible thing that is not just pie in the sky years away. I think it’s likely to be available sometime in less than a year, hopefully much less than a year. Speculating on those things is always a little risky, but –

Katherine:                  

Of course.

Dr. Beer:                     

– we all think that’s coming.

I think there are several other targeted drugs that may expand the portfolio of things that we can do in response to a mutational analysis. So, I mentioned microsatellite instability and DNA repair defects. There might be treatments for mutations in a pathway called AKT and others. And so, I think we’re going to see more very specific drugs that address segments of prostate cancer. And then a big area of activity that I’m very excited about is immunotherapy. And immunotherapy has been difficult in prostate cancer.

It has made more headway in melanoma and kidney cancer, and a number of other solid tumors, frankly, and we’re a little bit behind, and I think in part because natural prostate cancer doesn’t elicit quite as much of an immune response as some of the other tumor types; so, it’s not so easy.

But some of the newest technologies for synthetic antibodies are being designed that link the T cells from the immune system directly to prostate cancer cells and activate them, I think hold a lot of promise.

And ultimately, when it comes to cure, the immune system right now looks like the most promising strategy for actually eradicating cancer because once you activate the immune system, it can really do quite a job on cancer. Right now, for prostate cancer, that is still almost entirely in clinical trials and still for a minority of patients. So, this is not an answer for everybody, but once we get a hold of something that’s promising, I think the field’s going to work very hard to expand its utility and make it a reality for more and more patients.

 

Key Considerations When Making Prostate Cancer Treatment Decisions

Key Considerations When Making Prostate Cancer Treatment Decisions from Patient Empowerment Network on Vimeo.

What considerations are vital when making prostate cancer treatment decisions? Expert Dr. Tomasz Beer shares important factors that impact advanced prostate cancer care.

Dr. Tomasz Beer is Deputy Director at OHSU Knight Cancer Institute. Learn more here: https://www.ohsu.edu/people/tomasz-m-beer-md-facp.

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Transcript:

Katherine:          

What are the considerations when choosing treatment for advanced prostate cancer?

Dr. Beer:                     

Well, here, the considerations in advanced prostate cancer are first and foremost, what is the best treatment for this particular individual, right?

That’s what we want to do, and by the best treatment, I mean most effective with the fewest side effects, protecting their quality of life. But that’s an oversimplification. In reality, to arrive at what the best treatment is, we need to really understand quite a bit about the patient’s cancer. Sometimes it’s mutational status, as we discussed earlier, but also, the way it’s presenting, how aggressively it’s growing, is it involving the liver or lungs, or is it only in the bones, is it fast, is it slow.

And then the other thing that is extremely important is the patient’s health, other medical conditions. Some treatments are really more difficult to give when somebody has cardiovascular disease, or diabetes, or nerve damage, or other causes preexisting to the cancer treatment.

So, those kinds of things which we call comorbidities in the medical arena are really important in refining the risk-benefit ratio for each treatment. And finally, and critically, what prior treatments patients have received, that’s a major consideration. We obviously wouldn’t be using the same treatments again in many patients. There are exceptions to that, but for the most part, if a treatment’s failed once, it’s not likely to be of great benefit.

So, we integrate the cancer presentation, perhaps genomics in some situations, patient-specific health conditions, patient’s prior treatments, and then of course, patient’s values and personal priorities and what’s most important to them. And from all of that information, we take a look at the available portfolio and suggest one or two options, which we as physicians, based on our experience, expertise, and the knowledge of the literature, believe that fit most closely and are most likely to be successful.

Using Your Voice to Partner in Your Prostate Cancer Treatment Decisions

Using Your Voice to Partner in Your Prostate Cancer Treatment Decisions from Patient Empowerment Network on Vimeo.

How can prostate cancer patients work to become partners in their care? Expert Dr. Tomasz Beer discusses “shared decision-making” in prostate cancer care and offers his perspective about the patient role in treatment decisions.

Dr. Tomasz Beer is Deputy Director at OHSU Knight Cancer Institute. Learn more here: https://www.ohsu.edu/people/tomasz-m-beer-md-facp.

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Transcript:

Katherine:

The term “shared decision” is being used lately when talking about patient care. What does this term mean for you?

Dr. Beer:                     

Well, you know, at some level in my view, at least in the United States, virtually all medical decisions are shared decisions. We have a culture of advising our patients about their options, perhaps recommending a course of action, if it’s clearly preferable in our judgment to other options, but really involving patients in those decisions and taking serious consideration of the patient’s personal preferences and values.

And oftentimes in cancer care, especially when we’re dealing with noncurative treatments, treatments that are designed to keep the cancer at bay, perhaps shrink it, prevent or reduce cancer-related symptoms, protect quality of life, we really need to understand each individual patient’s willingness to undergo treatments, take on treatment-related risks, and their personal priorities. Is it their goal to live as long as possible and accept more risks? Is it their goal to focus on the quality of life today and avoid risks to the extent possible and only take them on when they’re absolutely necessary?

These are the kinds of discussions that we have with patients every time we consider a treatment change. So, to me, shared decision-making is really what we do with every patient and almost every visit. In some cases, it’s particularly important because there are areas in medicine where there’s really equipoise, and we don’t have a very clear recommendation one way or another.

Prostate cancer screening is an example for that. We all would dearly love to believe that early detection of prostate cancer is helpful, but early detection of prostate cancer comes with its own harms, the risk of overdetection, overdiagnosis, overtreatment, all because we pick up not just the aggressive cancers but also very slow-moving cancers that are not life-threatening. And so, folks undergoing cancer screening really need to know upfront what they’re getting into and make a decision about their view of the balance between the risks and the benefits. That’s a classic example of shared decision-making.

Katherine:                  

What is the role of the patient in making treatment decisions?

Dr. Beer:                     

Well, I think that the role of the patient is absolutely critical. I mean, they’re the ones receiving the therapy, and there are many things that we look for from our patients. To me, the most important is a clear understanding of their options and the reality within which we operate, having a set of hopes that are forward-looking, hopeful, and optimistic but also grounded in reality, so that good decisions can be made based on reasonable expectations. No. 2, a clear and honest articulation of the priorities, and that can be difficult.

You know, sometimes it’s hard to balance priorities. We obviously want to live as long as possible with a good quality of life. But what if the choice is better quality of life with a shorter lifespan or a longer lifespan but more side effects? And that’s really hard to sort out for some folks. And in my experience as a physician in the trenches, I can also tell you that sometimes the goals of the patients and the goals of their loving spouses and families are a little different.

And trying to help us – as physicians, our primary responsibility is to address the patient’s goals, but we all know that what we really want for our patients is a consensus of all the people they love that are important to them so that everyone can be supportive and on the same team. Those differences can be really stressful.

So, another thing that I look for in my patients and try to help with is building a family and friend support network that’s aligned, that’s on the same team, really. And then really strong communication with the physician or the provider about how things are going, letting us know about side effects honestly, and many people do that, but some people are afraid to share side effects for fear that their treatment might be taken away. And that honest, straightforward communication is really important for the best decision-making. And then, you know, of course, knowledge about the treatments and understanding of what we’re talking about is helpful, but actually, to me, it’s not the most important thing.

Having read the detailed papers on docetaxel chemotherapy while helpful, is not as important as having a really clear understanding of one’s values and priorities and a candid assessment of one’s quality of life and the ability to share that with a physician. I can cover the technical medical stuff, but what I can’t do is guess what’s important to my patients.  

 

Could Genetic Mutations Impact Your Prostate Cancer Treatment Options?

Could Genetic Mutations Impact Your Prostate Cancer Treatment Options? from Patient Empowerment Network on Vimeo.

Can prostate cancer treatment options be impacted by a patient’s genetic mutations? Expert Dr. Tomasz Beer defines precision oncology and explains how DNA repair and mutations can affect treatment options.

Dr. Tomasz Beer is Deputy Director at OHSU Knight Cancer Institute. Learn more here: https://www.ohsu.edu/people/tomasz-m-beer-md-facp.

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Transcript:

Katherine:

Are there genetic mutations that affect the choices for prostate cancer treatment?

Dr. Beer:                     

Increasingly so. So, this is an exciting era in terms of those kinds of approaches. You may have heard the term “precision oncology” or “personalized oncology.” The ideas behind precision oncology is that each individual patient’s tumor is analyzed in detail for their biologic differences, and for the most part, those are mutations; although, it can be other. And that treatments may be available that work particularly well for patients whose cancers have a particular mutation. And so, today, there are a couple of categories of treatments that are FDA-approved and that can be used in prostate cancer treatment if the right mutations are present.

And one of those is a class of drugs called PARP inhibitors and those are indicated in patients with advanced prostate cancer who received some of our most commonly used routine treatments and who harbor mutations in a series of genes that are responsible for DNA repair. BRCA-2 or BRCA-2 is the most common of those, and that may be a gene that is familiar to people because it’s also a significant gene in terms of conferring risk of breast and ovarian cancer.

So, that’s the same gene we’ve been thinking about for breast cancer is also important in prostate cancer. There are other DNA repair genes as well that may sensitize a cancer to PARP inhibitors. Another area is something called microsatellite instability, which is a measure of how mutation prone a cancer is.

And cancers that acquire a large number of mutations are more likely to respond to immune therapies. And one might ask why that is, and it’s an interesting question. We believe it’s because, as a large number of mutations accumulate, we see more and more abnormal proteins that are made from those mutated genes, and those abnormal proteins, some of them are different enough from our native proteins, to cause the immune system to recognize them. And when we have an immune system that actually recognizes our cancer as foreign, we’re often able to amplify that immune signal and turn it into a potent anticancer weapon.

So, those are the two categories of mutations that we use in the clinic today, DNA repair and this microsatellite instability, but others are coming as we develop more targeted, specific agents designed for people with specific cancers who have specific mutations.

Katherine:                  

Dr. Beer, why should prostate cancer patients ask their doctor about genetic testing?

Dr. Beer:                     

Well, there are a couple main reasons for that. One is, of course, to examine their cancer and determine if they’re eligible for one of these targeted therapies. If we find those mutations, those patients have an extra treatment available to them. They can still be treated with all the hormonal therapies, chemotherapy, radiation-based treatments, but in addition to those, they have an additional targeted option. And so, that’s a real advantage for those patients who harbor those mutations. So, that’s really reason number one reason, number two is to potentially protect their families.

So, if a germline mutation is identified, that mutation can be passed on to kids. It may also be in other family members, brothers and sisters, and potentially be passed onto their kids. Important to understand that these mutations, as I alluded to earlier, are not just prostate cancer mutations. They can be passed through the mother. They can predispose folks to bre  ast cancer. So, a germline mutation may be something the family would benefit from knowing about. It’s a complicated area, learning about inherited cancer mutation in the family, could be very stressful and frightening.

So, I wouldn’t say this lightly. I think it needs to be done within the context of genetic counseling and good advice about how to communicate things like that and what to do with them. We want to be able to help people reduce their risk of cancer without taking an emotional toll on multiple members of the family.

So, it’s important, and it’s also important to do it thoughtfully and carefully.  

 

                  

 

What Do Prostate Cancer Patients Need to Know About Genetic Testing?

What Do Prostate Cancer Patients Need to Know About Genetic Testing? from Patient Empowerment Network on Vimeo.

 What should men with prostate cancer know about genetic testing? Expert Dr. Tomasz Beer explains inherited mutations versus cancer-specific mutations and discusses the roles they can play in the development of prostate cancer.

Dr. Tomasz Beer is Deputy Director at OHSU Knight Cancer Institute. Learn more here: https://www.ohsu.edu/people/tomasz-m-beer-md-facp.

See More From INSIST! Prostate Cancer

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Prostate Cancer Treatment Decisions: How Do Genetic Test Results Impact Your Options?


Transcript:

Katherine:

Excellent. Let’s talk a bit about genetic testing and the role it plays in prostate cancer. I’d like to start by defining a few terms that are often confusing for patients. First of all, what is a somatic mutation?

Dr. Beer:                     

Well, so let’s first start with what is a mutation. So, we all have DNA that is the code of life in every cell in our body in the nucleus of the cell, and that is where all of the encoding for all the genes that then identify the proteins that make up our cells in our body exist. A mutation is a change in the sequence of that gene of that DNA, a missing letter, or a letter that’s been replaced by another letter, that can lead to a faulty protein being made. Sometimes, a mutation can cause a protein to be activated inappropriately.

Otherwise, we can see situations where the protein is silenced and inactive when it’s needed. So, those are mutations. Now, somatic mutations occur in a cancer. The person does not carry those mutations in their genome. They’re not passed along to their children or inherited from their parents. They happen in the cancer itself, and that’s the nature of cancer. Many cancers have a propensity to accumulate mutations, and so, a somatic mutation represents a cancer-specific mutation.

Katherine:                  

What then is the difference between somatic and a germline mutation?

Dr. Beer:                     

Yeah. So, germline is an inherited mutation. That is a mutation that is in the genetic code that that individual is born with, almost always inherited from their parents.

And I say almost always because in rare circumstances, a new mutation emerges in the fetus and becomes a germline mutation, but almost always this is a mutation that’s inherited.

And an important thing to understand about those is that because it’s in the germline, in the parent DNA, that mutation is present in every cell in the body of that human being, including the eggs and sperm, and that’s how it’s then transmitted to the next generation. Those germline mutations, they predispose people to cancer, can turn out to be deleterious and can lead to the development of cancer, typically when an additional mutation develops, and the two together team up to begin the process of cancer development.

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


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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. 

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. 

How Can Prostate Cancer Providers Help Empower Patients?

How Can Prostate Cancer Providers Help Empower Patients? from Patient Empowerment Network on Vimeo.

 How can prostate cancer providers help empower patients? Host Dr. Nicole Rochester and Drs. Yaw Nyame, and Petros Grivas share their perspectives on how health providers can work with patients to empower them to make more informed decisions in their treatment journeys toward optimal prostate cancer care.

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?

How Can I Get the Best Prostate Cancer Care No Matter Where I Live?


Transcript:

Dr. Nicole Rochester: 

I’m going to ask Dr. Nyame to elaborate on which is these fancy tests and these new technologies and things, and what we know is that a lot of times the patient themselves, if they are not aware of these particular tests, then because of all the disparities that we’ve talked about, they may not even be offered to them. And so a question for you, Dr. Nyame, how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options and diagnostic options?  

Dr. Nyame: 

You know that’s very challenging because Dr. Grivas and I see this in our clinical practice, we have patients who are very savvy, that’ll come in and say that “I’ve heard that there’s a PSMA in San Francisco. Do you have it in Seattle? If you don’t have it in Seattle, I’m going to go to San Francisco.” And for every patient I had like that, who might be, “Hey, have you read this latest article, I can have someone who has no idea of what’s going on with their diagnosis, and so how we create opportunities to bring those patients and know very little up to somewhere close, maybe not quite to the demanding the PSMA or a fancy scan level, but sophisticated enough to feel empowered in their health decision-making as something where I think we need to do research because we know that certain tools, navigation, advocacy groups can help in that arena, but I think that we need to understand what the tools are that patients want. What’s interesting is when you query patients, which we’ve done in a study and you say, “What are the most pressing issues for you in your prostate cancer diagnosis,” whether it’s in the localized setting or in the advanced or metastatic setting, the one thing that has resonated over and over again, irrespective of race is, “I need help making decisions, I need tools that will make it, me more efficient in how I make my decisions.” And so, I think without punting the answer too much, we need to do better, and I think part of that starts with listening. I do think that providers can be trained to provide that information in a more efficient manner. We do not…we as clinicians, are built into a system where the number of patients we see really correlates with how we get paid, and there’s not a doctor that doesn’t go to work excited to educate and build relationships with patients, that’s not the case, but there is a time crunch and I feel like in situations where there is a bigger gap and knowledge and understanding, we often don’t have enough time and built into our day to have the discussion, so for me, for a lot of my patients who I feel like have a lower understanding of what’s going on with regards to their prostate cancer diagnosis, it’s really important for me to build into our visit the understanding that whatever we don’t cover can be addressed at a later time and that we don’t have to make a decision with that at particular visit. So, when I think about this, it’s sort of like your favorite barbershop or your favorite grocery store, your favorite sandwich place, the relationships matter. 

And I think when we talk about empowering patients to be advocates for themselves in their clinical visits, I think there needs to be an understanding from patients that if it doesn’t feel right, that they have options and to take their time in the decision. Prostate cancer, unlike other diseases, that Dr. Grivas and I treat doesn’t have to have the dial turn to 10 or 11 right away, and we need to make a decision because time is extremely sensitive, even in our most aggressive localized settings, which is what I treat, we have the opportunity to take weeks, if not months, to come to a decision. 

Dr. Nicole Rochester: 

Thank you, thank you so much, I appreciate that. And certainly, as a physician who’s also a health advocate, I strongly agree with what you said about if the relationship is not working, that there are options, and I know that that may not always be the case depending on where patients live, but I regularly encourage my clients to sometimes you have to look somewhere else, sometimes you have to get a second opinion or maybe even fire your doctor if the relationship is not mutually beneficial, so I appreciate you sharing that. Dr. Grivas, do you have anything to add in terms of how patients can take a proactive approach to their healthcare and how they can build this confidence we’ve been talking about and express their concerns to their medical team? 

Dr. Grivas: 

I think Dr. Nyame covered it so well. I think it’s critically important for all of us to recognize that the finding out the why is probably the key to answer those questions, why there is this distrust, why someone is not paying attention so her own health because they have to try to make ends meet and keep family fed during the daytime, and they don’t have time to think about their own health as Dr. Nyame mentioned before, at the same time, empowering the patient that they are the center of this relationship. 

Why doesn’t Dr. Nyame go to the clinic in the morning is because of patients, so our training is patient-centered and our practice is patient-centered and our research is patient-centered, so the patient should feel that right from the door, that this is a service to them. And we’re doing what we’re doing to help their life being longer, longer survival, as we call it, or better, better quality of life, and listening to the patient’s needs is important because of the time crunch that Dr. Nyame mentioned before, I think many of us, probably all of us are within situations where we don’t have enough time to listen advocate-ly, what the person have to say, that’s why I think it’s important to have opportunities for separate visits and utilize better other mechanisms, exact mechanisms, patient navigation I think it’s a critical part of our care, social workers, case managers, financial counselors, nutritionist, genetic counselors, looking at genetics in for the disposition to cancer which is much more common than we think occurrences sometimes we be higher in some certain populations. Having this service available to patients, can help a lot because they will give them knowledge, and knowledge is power by itself, so give them the center, we’re here for them. Why they’re here, it’s because we want to help them and giving them also resources, they need to get now let’s information, when they feel they have more knowledge and they feel that they have control, they can communicate back and give feedback of how we can do better and also, what are the priorities of their needs, so we can address those, what matters to the patient, and this can apply to base and care, and also is what questions we’re asking? Research should be defined by patient priority, so all of those factors should be a dialogue with a patient, I think advocacy groups can be a great liaison to help us disseminate this concept and help again, empowering the patients. I struggle believe that explaining the why and giving knowledge, the data points in a simple and lay manner, can patients think being more in control. 

 Dr. Nicole Rochester: 

I love the patient-centered focus, that is something that admittedly, we’ve gotten away from that to some degree in medicine because of the time crunches that both of you have mentioned, and I love that you said knowledge is power.  

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.