Tag Archive for: Dr. Yaw Nyame

Staying Proactive While Facing a Prostate Cancer Diagnosis

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the prostate cancer community. Prostate cancer treatment options are ever-expanding with new treatments, and it’s essential for patients and families to inform themselves about testing, factors in treatment decisions, treatment types, and disparities in care. With this goal in mind, PEN initiated the [ACT]IVATED Prostate Cancer program, which aims to inform, empower, and engage patients to stay abreast of the latest in prostate cancer care.

Prostate cancer is fairly common with about 13 percent of U.S. men diagnosed in their lifetime. However, prostate cancer is highly treatable when detected early, and more is now known about screening and disparities in prostate cancer. PEN is excited to add information about prostate cancer to aid in screening measures and prevention of advanced prostate cancer.

Cancer survivor Lisa Hatfield interviewed experts Dr. Yaw Nyame from Fred Hutchinson Cancer Center, Dr. Ronald Chen from University of Kansas Cancer Center, Dr. Isaac Powell from Karmanos Cancer Institute, and care partner Sherea Cary as part of the [ACT]IVATED Prostate Cancer program.

Lisa Hatfield and Dr. Yaw Nyame

High-Risk Prostate Cancer and Population Genetics

High-risk patient groups should stick to screening recommendations for prostate cancer to help ensure early detection. Dr. Nyame shared current guidelines. “…the American Neurological Association (ANA) and the American Cancer Society (ACS) are rooted in the best available evidence and both recommend that high-risk populations which include people of African ancestry, individuals who have strong family histories of prostate cancer, so strong usually means first degree relative, grandfather, father, brother, and it’s important to remember that there’s crossover, so it’s not just prostate cancer, but if breast cancer runs in the family or colon cancer runs in the family, or cancers in general, that can put you in a high-risk category that those individuals should consider screening starting at age 40.

Dr. Issac Powell

Population genetics have identified some common factors that drive aggressive prostate cancer. Dr.  Isaac Powell explained some revelations of high-risk groups in West Africa, Central Africa, and Northern Europe. “So it’s the environment of West Africa, the rainforest specifically, that causes those particular diseases. Now the genetics is, in those poor inflammatory cytokines that we’ve discussed that causes prostate cancer and, in fact, other benign diseases to be more progressive, protect against these acute infections. So this is…the immune system is very complex. In some cases it protects, in some cases it drives the cancers…Northern Europe prostate cancer is more aggressive compared to Southern Europe. So it’s not just among people of color. In fact, the color makes very little difference in whether you have an aggressive cancer, particularly in Sub-Saharan West Africa as well as in European.

Lisa Hatfield and Dr. Ronald Chen

Prostate Cancer Disparities and Clinical Trials Distrust

Dr. Chen discussed prostate cancer disparities in Black patients in the U.S. “And what we know is that Black patients with prostate cancer have pursued less aggressive treatment, have more delays in treatment, and are twice as likely to die from prostate cancer compared to white patients, and that’s really a large gap that we need to do more research on to close.

The history of mistreatment of Black Americans in clinical trials has created a situation of distrust. Dr. Powell explained how the situation must be resolved. “…there’s this major distrust now that’s very difficult to eliminate in the Black community, especially if there are very few African American doctors to take care of them. So what I think that we have to fix that question of distrust, and that’s going to take a while, but I talk to them always about this mistrust issue, because I can’t see everybody, although we do need more African American doctors and nurses to take care of them and to encourage them to participate in clinical trials and to be seen as a person who is going to be taking care of them in clinical trials, that’s very important.

Dr. Yaw Nyame

Solutions Toward Better Prostate Cancer Care

Dr. Yaw Nyame discussed solutions toward improved prostate cancer care. “…in this particular space is for Black and Latinx communities to think of ways to be partners in research and to really embrace the fact that it is their right to be at the table when we make decisions about how research is conducted, what the results of our research means and how we share those results so that they have impact in our communities. And so there are a variety of ways to be partners in research, sometimes it’s literally being part of the research team, like we do on showing up to meetings every week, and being engaged in the work in all forms, just asking to participate in the trial, being a member and a participant in the trial and making sure that your experience counts in the way we think about advancing the field of prostate cancer and making it better for everybody.

Care partner Sherea Cary shared her perspective toward better care. “…encouraging communication, encouraging the patient to share with others, other men, what their experience has been. It seems to me that when you’re in community with other people and you have something in common, then the person who is experiencing cancer or an illness, feel a connection, if they know that someone that they know has had it and survived it and seems to be doing well, that’s encouraging to them, and then we also want that person to pay it forward.

Empowering yourself as a patient includes gaining a clear understanding of your prostate cancer and thinking about clear goals for treatment. Dr. Yaw Nyame shared his perspective. “…when it comes to advanced prostate cancer is really thinking about what your goals of care are as a patient, meaning, what do you want to see happen in your treatment, what specific things do you want to have your doctor support? And I think understanding how to build a team that will help you support those goals of care is really important, but if you don’t know really clearly, and at least to the best of your ability, what you want to see happen in your care, I think it’s hard to then advocate for those things. 

[ACT]IVATED Prostate Cancer Program Resources

The [ACT]IVATED Prostate Cancer program series takes a three-part approach to inform, empower, and engage both the overall prostate cancer community and patient groups who experience health disparities. The series includes the following resources:

Though there are prostate cancer disparities, patients and care partners can be proactive in educating themselves to help ensure optimal care. We hope you can take advantage of these valuable resources to aid in your prostate cancer care for yourself or for your loved one.

Dr. Yaw Nyame: Why Is It Important for You to Empower Patients?

Dr. Yaw Nyame: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Patient empowerment is a vital part of care, but how can healthcare providers help? Prostate cancer expert Dr. Yaw Nyame with the University of Washington shares his approach to patient care and connections that he provides to help ensure optimal patient outcomes.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

Dr. Silvina Pugliese: Why Is It Important for You to Empower Patients?

Dr. Danielle Brander: Why Is It Important for You to Empower Patients?

Dr. Danielle Brander: Why Is It Important for You to Empower Patients?

Transcript:

Lisa Hatfield:

Dr. Nyame, how do you empower your patients and their care partners? And why is that important? 

Dr. Yaw Nyame:

I think the best way to empower patients and their care partners is just by giving them the time. My clinic always runs late…I’m not sure that’s something I should brag about but it always runs late, and when I come into a room, I always say, “I’m sorry, I’m running late.” I usually explain if someone needed more time before then, and I always end that with, “I’m going to give you the same time that you need to answer all your questions and have your needs met as the last person, and so don’t worry about what the clock says about when your appointment was supposed to be. Let’s just cover what we need to cover.”

I also jot quite a bit of notes, a lot of families come in with notebooks and they’re writing everything down, and I try to actually have some notes that are individualized to my patient, their particular cancer and what are my recommendations down on a sheet of paper that I give to them. It’s almost like a deliverable for that visit, which I think oftentimes takes the burden of the patient feeling like they’re the one that has to collect all this information, and it’s almost like I’m going to be in charge of collecting this and giving it to you at the very end of our visit.

And then lastly, I’m really big on trying to connect folks to the resources that they need socially or clinically, and so everyone gets a list of vetted resources to read more or to go back to if they have questions, everyone gets connected to advocacy organizations that I do work with and trust, and then lastly everyone gets my contact info, sometimes a cell phone number, sometimes an email, something where they feel like they can get reconnected to me. That’s my approach, some people would say that’s too much, but I find that the more ways I can allow patients to feel like I’m accessible, that I’m at their level, that I’m not some super human, whatever, but I’m just like their neighbors or friends, the people that are in their community, the more empowered they are to ask for the things that they need and ultimately have a better clinical experience and outcomes.

Understanding Recommended PSA Screening Age and Frequency In Prostate Cancer

Understanding Recommended PSA Screening Age and Frequency In Prostate Cancer from Patient Empowerment Network on Vimeo.

What do prostate cancer screening guidelines recommend for PSA screening age and frequency? Expert Dr. Yaw Nyame with the University of Washington explains different guidelines and patient groups who should receive PSA screening sooner or more frequently than the general population.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

How Can Prostate Cancer Stigmas and Misconceptions Be Addressed

How Can Prostate Cancer Stigmas and Misconceptions Be Addressed?

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments

What Impact Does Advanced Prostate Cancer Have on Lifestyle

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Transcript:

Lisa Hatfield:

And, Dr. Nyame, can you comment on the recommended age of first PSA screening and then the subsequent screenings, the frequency of subsequent screenings.

Dr. Yaw Nyame:

Yeah, so there are a lot of different guidelines out there, unfortunately that don’t all agree, the most current ones from the American Neurologic Association and the American Cancer Society are rooted in the best available evidence and both recommend that high-risk populations which include people of African ancestry, individuals who have strong family histories of prostate cancer, so strong usually means first degree relative, grandfather, father, brother, and it’s important to remember that there’s crossover, so it’s not just prostate cancer, but if breast cancer runs in the family or colon cancer runs in the family, or cancers in general, that can put you in a high-risk category that those individuals should consider screening starting at age 40. The frequency is debatable. We have a study that says that every year for a really high-risk population and PSA test every year, the guidelines will say every two years at the most.

And then it’s important to stop screening around age 69 to 70, especially if your PSA numbers have been really stable, because we can’t over-detect cancers, meaning finding cancers that are going to affect your natural life and that risk goes up if we continue to test unnecessarily as men age, and so somewhere in their early to mid-70s, you definitely want to stop testing.

The most important thing is what is an abnormal PSA, and that varies by your age, so if you have a PSA of 1 when you’re 40, that’s alarming, and that would prompt me to say, “Hey, let’s test every year, and if it gets above 2.5 in the next 5 to 10 years, we’re going to do a biopsy.” You’ve got a PSA of 1, at age 70 that’d be below PSA for your age. And so we use these numbers three or four, but it’s a spectrum. What I would say is, don’t let your PSA get above 10 before you do something regardless of your age, so if you see a pattern of increase certainly as you’re getting above three, four, five and especially if you’re a younger person, you definitely want to make sure you get connected to a urologist.

[ACT]IVATED Prostate Cancer Post-Program Survey

How Can Prostate Cancer Stigmas and Misconceptions Be Addressed?

How Can Prostate Cancer Stigmas and Misconceptions Be Addressed? from Patient Empowerment Network on Vimeo.

 How can prostate cancer stigmas and misconceptions be addressed? Expert Dr. Yaw Nyame with the University of Washington discusses common concerns and misconceptions, how doctor-patient communication can help, and support resources to aid patients and care partners.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Understanding Recommended PSA Screening Age and Frequency In Prostate Cancer

Understanding Recommended PSA Screening Age and Frequency In Prostate Cancer 

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments

What Impact Does Advanced Prostate Cancer Have on Lifestyle

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Transcript:

Lisa Hatfield:

Dr. Nyame, have you encountered any misconceptions or stigmas related to prostate cancer within the underrepresented communities, and how do you address or mitigate these issues with your patients?

Dr. Yaw Nyame:

I think that there are a lot of misconceptions in all communities and stigmas around prostate cancer and its treatments, all the way from the early portion of diagnosis, stigma around maybe the rectal examination if you need one, take me around what may happen if you get a biopsy, misconceptions of biopsy, like will it spread the cancer all around your body, will it affect erectile function. And then through treatments. And so one of the primary jobs I feel like I have as a doctor who specializes in this area, is to take the time to hear patients express these concerns, do not diminish or belittle misconceptions, to really hear them, and then to try and educate and inform people about the realities without over-correcting either.

So someone comes to me and says, “Well, Doc, I hear that if I have surgery, I’m going to have erectile function.” I can’t, I shouldn’t, and I don’t say, Oh, you’re wrong, right? But I might say, “Well, that’s true. If you have poor erections before surgery, a likelihood that they’re going to get better is really low, and they’re likely to go away or diminish, but if you have good erections, that there’s a chance with certain techniques that they can come back and will come back.”And then I usually put something like 50 percent of men who have surgery and/or radiation will have some erectile dysfunction within the five years following their treatment. So it’s important to have a level ground where we share information candidly.

And I think it’s important for patients to come prepared to have these discussions, do your homework by talking to your people in your circles, by looking at trusted resources online from places like the American Cancer Society, Prostate Cancer Foundation, cancer centers produce their own information and be prepared to have these discussions.

My activation tip is the same as before, I think that building a community of survivors to share your concerns with and to get knowledge from is really important because there is no better source of information than the lived experience, and I think those individuals, especially the ones who volunteer to lead support groups and to share their stories, they’re wanting to impart their experience with other folks to empower them and support them, so it’s usually a really fantastic community to support understanding your diagnosis and what your journey is going to be like better and also a place to go to once you’ve experienced some of these things, right? It’s not just about the misconceptions up front and stigmas up front, but post-diagnosis and treatment, there are other concerns that may come up, and having the right network can sometimes help you navigate finding the solutions and the resources that are going to support you best.

[ACT]IVATED Prostate Cancer Post-Program Survey

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities from Patient Empowerment Network on Vimeo.

For advanced prostate cancer diagnosis and survival, what are some disparities that Black and Latinx patients can help overcome? Expert Dr. Yaw Nyame with the University of Washington discusses ways that Black and Latinx communities can help shift the power dynamic for patients to help drive prostate cancer research efforts.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Prostate Cancer Clinical Trials _ Is Mistrust a Barrier

Prostate Cancer Clinical Trials | Is Mistrust a Barrier

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments

What Impact Does Advanced Prostate Cancer Have on Lifestyle

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Transcript:

Lisa Hatfield:

So a shout-out to Dr. Nyame for an outstanding article that you wrote. I’m going to read a quote from that. Worldwide Men of African Ancestry Demonstrate Worse Outcomes in Prostate Cancer, a phenomenon driven largely by social factors that inform biologic, environmental, and healthcare risks. So, Dr. Nyame, considering the disparities and taboos on prostate cancer, how can Black and Latinx men including their care partners play a role in eliminating these racial disparities surrounding prostate cancer diagnosis and survival rates?

Dr. Yaw Nyame:

I think because of the nature of what drives these disparities, there is no doubt that cancer is a biologic phenomenon, and so there is no reason to ignore biology, but a lot of inequity in the majority of inequity is rooted in structural and social inequities that really inform health, and when I look at our traditional mechanisms for providing healthcare, there is such a power differential, whether it’s in how we provide clinical care or how we do research, and so we as a research team here at the University of Washington, fundamentally believe that we have to reverse those roles that we have to hand the power back to community, so that they’re an equal partner at the table when we do the work that we do. And so we do a lot of work that is centered around engaging community and patients and partnering with community and patients, and I think that’s one way to ensure that we develop research and interventions that create equity.

My activation tip in this particular space is for Black and Latinx communities to think of ways to be partners in research and to really embrace the fact that it is their right to be at the table when we make decisions about how research is conducted, what the results of our research means and how we share those results so that they have impact in our communities, and so there are a variety of ways to be partners in research, sometimes it’s literally being part of the research team, like we do on showing up to meetings every week, and being engaged in the work in all forms, just asking to participate in the trial, being a member and a participant in the trial and making sure that your experience counts in the way we think about advancing the field of prostate cancer and making it better for everybody.

Sherea Cary:

My activation tip in this area for care partners would be encouraging communication, encouraging the patient to share with others, other men, what their experience has been. It seems to me that when you’re in community with other people and you have something in common then the person who is experiencing cancer or an illness, feel a connection, if they know that someone that they know has had it and survived it and seems to be doing well, that’s encouraging to them, and then we also want that person to pay it forward.

So what I remember about my dad is that after he had his cancer diagnosis, he would share with other men who were facing, who were having testing done and then who had been diagnosed, he talked to them about what happened with them, and they had their own sense of community.

[ACT]IVATED Prostate Cancer Post-Program Survey

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

What Impact Does Advanced Prostate Cancer Have on Lifestyle? from Patient Empowerment Network on Vimeo.

What should advanced prostate cancer patients expect for treatment impact? Expert Dr. Yaw Nyame with the University of Washington explains common treatment side effects, advice for easing physical side effects, and ways for patients and care partners to find support.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Prostate Cancer Clinical Trials _ Is Mistrust a Barrier

Prostate Cancer Clinical Trials | Is Mistrust a Barrier

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments

Advanced Prostate Cancer Diagnosis and Survival _ Black and Latinx Disparities

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities

Transcript:

Lisa Hatfield:

There is often a tendency to associate advanced prostate cancer with a risk to relationship intimacy. And can you speak to sexual dysfunction and other lifestyle concerns when it comes to prostate cancer and that diagnosis?

Dr. Yaw Nyame:

So, prostate cancer, it’s important to remember that the prostate itself is a sex organ for men, right? Its primary purpose is to produce seminal fluid, the fluid that comes out with ejaculation. And it’s closely linked to a whole lot of structures in your pelvis that support, you know, erectile function and sexual function. All of our treatments have the very real potential to impact sexuality and sexual function. And, I think part of what’s important to do is you go into these and to your conversation with your doctors is to understand how your sexual function, your urinary function, and sometimes your bowel function are going to be impacted by these treatments.

And to get some real clarity about what life will look like for you post-treatment and the setting of advanced cancer, there’s also the added potential of impact to sexual function from the hormone suppression. When we take away your testosterone, oftentimes we take away things like libido or your sexual desire, and we can impact erectile function as well.

You know, things that can help overcome some of the side effects of that hormone suppression are definitely diet and exercise, being active, keeping your muscle mass up, having good dietary habits seem to help. We have a lot of mixed reviews and the literature about the benefit, but I, yeah, I’m a strong believer that the healthier you can be as you undergo these treatments, the better you’re going to do overall. My activation tip when it comes to these new diagnoses is to really invest in advocacy organizations that exist in your community so that you can be connected to other men who are undergoing treatment to have candid conversations about life as a prostate cancer survivor. Organizations like ZERO – the End of Prostate Cancer. There are local groups the NASPCC, there are just chapters and groups of men all across the country that gather to talk about their journey.

And I think that that can be a really wonderful network to better understand what treatment realities may look like for you, but also to support the emotional and physical toll that treatment may take on you. And I think that, that being part of those networks actually will also arm you and empower you to have really good conversations with your doctors to understand what resources are available to support you in your survivorship.

What a lot of men and individuals of prostate cancer aren’t told is that there are some solutions for some of these problems may not be like it was before, but there are many treatments that can exist and do exist that can help preserve certain portions of this quality of life, these quality of life components. And if you don’t know about them, you can’t ask about them. And if you’re not willing to confront them, you may not ask about them and suffer unnecessarily.

My activation tip for care partners related to this question would be, have the tough conversation. Talk about having the tough conversation, schedule a time to try and do it. Don’t do the tough conversation when the football game is on, on Sunday evening. Don’t have it on Wednesday night when the baseball playoffs are going on, but have that conversation so that the care partner can help advocate for the patient about those things that the patient may feel uncomfortable talking about. But if we don’t talk about it, we can’t work on it. And if we don’t work on it, we can’t fix it. So it is important to have the tough conversation.

Lisa Hatfield:

Right, thank you both Dr. Nyame and Sherea, who is a care partner. Thank you for that. Those activation tips.

[ACT]IVATED Prostate Cancer Post-Program Survey

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments from Patient Empowerment Network on Vimeo.

What emerging advanced prostate cancer treatments are showing promise? Expert Dr. Yaw Nyame with the University of Washington shares his perspective about the treatment landscape, updates on clinical trials showing promise, and how to help ensure optimal patient care.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Prostate Cancer Clinical Trials _ Is Mistrust a Barrier

Prostate Cancer Clinical Trials | Is Mistrust a Barrier

What Impact Does Advanced Prostate Cancer Have on Lifestyle

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Advanced Prostate Cancer Diagnosis and Survival _ Black and Latinx Disparities

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities

Transcript:

Lisa Hatfield:

Can you speak to the current treatment landscape and any new research coming out about advanced prostate cancer treatment that you are excited about? And how do you work with your patients to make treatment decisions, particularly those in underrepresented communities?

Dr. Yaw Nyame:

So, two very different questions. The first thing I’ll say is the landscape is changing, and there are a lot of exciting things. There are some trials that are showing that the combination of systemic therapies like the hormone blockade, whether it be hormone blockade at a large level, at the cell level with some of those novel agents like abiraterone (Zytiga) and enzalutamide (Xtandi) or even chemotherapy, how we combine those are all very exciting. But we also know that local control of the prostate, so either using radiation to the prostate, which was shown to be beneficial in a clinical trial from the UK called STAMPEDE, we have an ongoing clinical trial called SWOG 1802, which is looking at whether surgery locally to the prostate can add additional benefit to men with advanced prostate cancer.

So I think it’s exciting to understand how we can improve survival. It used to be around three-year survival for prostate cancer when you were diagnosed with advanced forms. We’ve moved that to beyond five years because of how many incredible new advances we have and these combinations of local therapy and systemic therapy. We also have new drugs coming into the landscape like lutetium Lu 177 vipivotide tetraxetan (Pluvicto), which is a PSMA tagged radioligand which has, you know, shown some really great results in the castration-resistant or hormone resistant space that’s being tested now earlier in the hormone sensitive space and high risk localized space.

So there are a lot of really fantastic and exciting new advances. I’m skipping over other types of medications that are really in the precision oncology space, like the PARP inhibitors which are shown to be beneficial in people who have, you know, certain genetic, you know mutations and DNA recombination.

So I think we continue to see evolution in this space where, you know, we used to sort of see this cancer as a one size fits all. And you know, we sort of try to sometimes hit a square peg into a round hole, and now we’re able to really say, okay, your cancer has these features and this combination of things is what’s going to work best. But the problem with that is the more nuanced and the more personalized our care gets, the more opportunity there is for people who are on the margins to be lost.

And so, you know, our historically, you know, marginalized and minoritized populations are sometimes going to be the ones at highest risk for not getting the latest and greatest. One of the things that I’m really interested in supporting and seeing supported in cancer centers and in clinical sites across the country is patient navigation.

Providing services that help people get connected to all the different types of doctors, all the different types of institutions that might offer them the treatments and the workups that they need to make sure that they get access to the best care that’s available. And that’s not only supporting the patient oftentimes, but that’s supporting their caregivers, their families, and making sure that what is a really complex process. It’s not just going in for one doctor’s visit oftentimes, right?

Seeing a lot of different specialists, getting a lot of different tests. But that process is supported for people that have especially among people that have significant social needs and may not be able to navigate that on their own. My activation tip in this space is to absolutely do your homework and find resources to help you navigate this very confusing and very busy landscape when you have your diagnosis.

A lot of cancer centers have patient navigators, okay? And if they don’t, they should. So that is one resource that you should not be afraid to ask for and utilize is someone from the doctor’s office. That’s just going to take the time to make sure if you need to be connected to an insurance, you know agency like Medicare or Medicaid, that you’re connected, that if there are certain appointments you need to make, that they help you schedule and if you need transportation support, that they help connect you to that. And so finding those resources, whether it’s through your community and peer network or through the cancer center, is really important to make sure that you can get as comprehensive of care as you can.

Sherea Cary:

My activation tip for care partners when addressing things like treatment and new research is for the care partner to be as informed as possible about other health issues that the patient may have, and to be transparent with the oncologist about what other things are going on in the patient’s life to make sure that they fit some of the new research that’s coming out or be able to, or the patient and the care partner are able to overcome those barriers that may separate them in some of the treatment decisions. 

Lisa Hatfield:

Right, thank you both Dr. Nyame and Sherea, who is a care partner. Thank you for that. Those activation tips. 

[ACT]IVATED Prostate Cancer Post-Program Survey

Prostate Cancer Clinical Trials | Is Mistrust a Barrier?

Prostate Cancer Clinical Trials | Is Mistrust a Barrier? from Patient Empowerment Network on Vimeo.

Is medical mistrust a barrier to prostate cancer clinical trials participation? Expert Dr. Yaw Nyame with the University of Washington discusses the history of medical abuse with some people of color and how medical professionals must guard against excluding some patients from clinical trials.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments

What Impact Does Advanced Prostate Cancer Have on Lifestyle

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Advanced Prostate Cancer Diagnosis and Survival _ Black and Latinx Disparities

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities

Transcript:

Lisa Hatfield:

 My question about barriers is about the historical mistrust of trials. Do you find that fear and mistrust is a barrier? Have you experienced that at all in your practice?

Dr. Yaw Nyame:

There is no doubt that we have a history of medical and clinical abuse of vulnerable populations. We oftentimes point to examples like Tuskegee as an example of medical abuse. But medical abuse and medicine started in the slave chattels, and we have it, we have documented and published examples of Black slaves in the U.S. being the subjects of medical experimentation that’s carried out into, you know, the early forms of formal medical education where patients who showed up to county hospitals and public hospitals were subject to experimentation that no doubt has a deep rooted effect on populations of color who seek clinical care from academic institutions. However, we can’t let that history be an excuse for excluding Black and Brown populations from clinical trials. And what happens now is oftentimes I hear, well, these folks are, don’t trust us.

And so what can we do to build the trust? Well, in that process, we oftentimes fail to just ask people whether or not they want to participate in trials. There’s this presumption that while people aren’t interested, and I think what we need to do is ask everybody that comes through our doors to consider a clinical trial and to think about what barriers truly exist to prevent people from participating. because right now, if we really rely on this mistrust and distrust as a viewpoint of why people aren’t participating in trial, then we actually, we put the blame on our patients, right? And we don’t actually put the blame on ourselves as the main drivers of non-participation or what really it’s not a participation issue. It’s an exclusionist issue, right? We propagate a history of excluding you know, people of color from clinical trials.

[ACT]IVATED Prostate Cancer Post-Program Survey

Advanced Prostate Cancer Clinical Trials | Why Black and Latinx Participation Is Vital

Advanced Prostate Cancer Clinical Trials | Why Black and Latinx Participation Is Vital from Patient Empowerment Network on Vimeo.

Why is advanced prostate clinical trial participation important for Black and Latinx patients? Expert Dr. Yaw Nyame with the University of Washington explains how clinical trial participation helps patients and solutions toward removing barriers to participation.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Prostate Cancer Screening and Outcomes _ Impact of Racial Disparities

Prostate Cancer Screening and Outcomes | Impact of Racial Disparities

Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care

Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care

What Can Signal Hormone-Sensitive Advanced Prostate Cancer

What Can Signal Hormone-Sensitive Advanced Prostate Cancer?

Transcript:

Lisa Hatfield:

Dr. Nyame, the importance of clinical trial participation can’t be underscored enough in cancer care. Can you speak to advanced prostate cancer clinical trials specifically for Black and Latinx men, and critically important, how are you and your colleagues removing barriers to accessing care and underrepresented communities, including the access to those clinical trials?

Dr. Yaw Nyame:

Yeah, I can’t state this enough. Clinical trials are a form of high-quality care, and I think a lot of people don’t understand that clinical trials don’t just test you in a vacuum with something that we think is really promising versus nothing at all. Clinical trials often are going to test a standard of care, so what we do currently versus something standard of click care and something that we think has benefit, and so at the very least, when you participate in the clinical trial, you are going to get what we think works best currently.

And then there’s the additional benefit that you might get something that we think works a little bit better or a lot better than what we do currently, and you do it in a space where people are monitoring you really closely, right? Because the clinical trial needs to collect data and understand how things work and how well they work. So it is a form of really high quality care, and I urge Black, Latino, and other minoritized patient populations to find ways to get access to this really high quality care. Now, what we have to do as medical institutions, as cancer center, is figure out ways to remove the barriers that limit people’s ability to participate in clinical trials.

Those barriers are usually social barriers, right? It is the, do I have the ability to take off time from work to participate in this trial? How’s this going to affect my household if I’ve got to come in my case to Seattle and take a whole day off from work to participate? Can I afford transportation to be coming to the cancer center every week? You know, do I have child care to participate in this trial? And so we as cancer centers are starting to think more holistically about how we can remove social barriers to clinical trial participation. And I do think until we get that right a lot of the inability for marginalized and minoritized populations to participate in clinical trials falls at our feet. So what are we doing to address barriers? Well, I think we’re trying to think about ways of putting clinical trials directly in communities.

So some of those social barriers are removed so that it’s not always on the patient to come to us. We’re thinking of ways to support those patients that have to absolutely come to us for a variety of reasons for a clinical trial so that there isn’t that financial and social burden. But it’s very much a work in progress. And I think we’re really in the early phases of understanding how we can support people. My activation tip when it comes to clinical trials and prostate cancer is to ask for them and to demand opportunities to participate in them because they are such high, they’re such incredible forms of high quality care.

And I think by participating in a clinical trial, you’re giving yourself and future versions of yourself and your community opportunities to have better outcomes when it comes to these cancers. And I think the second portion of that is to demand and ask from your cancer centers that they find ways to support you in participating in those clinical trials. Because as a cancer center and as an academic clinical institution, our mission is to serve. And we do have resources that we can sometimes make available to make sure that you can afford to and not be put out by participating in a clinical trial.

[ACT]IVATED Prostate Cancer Post-Program Survey

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Transcript:

Lisa Hatfield:

What is advanced hormone-sensitive prostate cancer, and are there specific symptoms or warning signs to be aware of?

Dr. Yaw Nyame:

When we have prostate cancer that has spread beyond the prostate. We define that as advanced or sometimes we call it metastatic prostate cancer. And early on in that process, we can control and often kill many of those prostate cancer cells by taking away testosterone. Testosterone ends up being like the fuel that allows these cancers to grow. And so when we say a prostate cancer is hormone-sensitive, what we mean is it’s sensitive to testosterone, and by shutting off testosterone, we can effectively manage and or kill those prostate cancer cells.

Over time, when we shut off that testosterone, prostate cancers will learn how to produce internally their own testosterone or develop resistance or find ways to still survive in the absence of testosterone, and when that happens, we call that pheromone-resistant or sometimes you will hear the term castrate-resistant prostate cancer.

Advanced prostate cancers are going to be in a category of cancers where people may have symptoms, those symptoms aren’t always specific, they can range from difficulty urinating, having blood in the urine, having fractures of bones that have been invaded with cancer, weight loss, loss of appetite, and so that is sort of a broad spectrum of symptoms that someone could potentially experience with an advanced prostate cancer, but not all folks are going to have those particular symptoms, because oftentimes when you have severe prostate cancer-related symptoms, those are in pretty advanced stages, meaning you have a pretty high amount of cancer that is outside of the prostate.

My activation tip, when it comes to hormone-sensitive prostate cancer that is advanced, is to be informed about the latest therapies that we offer in this space, because it is constantly changing 15 years ago. The mainstay of treatment was just hormone blockade, and we put people on medications that took their testosterone away or offered them surgeries to take away testosterone from the testicles. We then added on these novel testosterone or androgen-blocking medications like abiraterone (Zytiga) or enzalutamide (Xtandi), which people will hear about when they look up the space of what their diagnosis, then we added on chemotherapy in the form of docetaxel (Taxotere), and now we’re doing combinations where we add the hormone blockade and medicine like abiraterone and chemotherapy, what we call triplet therapy as now first-line therapy.

And so this space is changing so much that when you have this diagnosis, you need to take a pause and do your homework so that you are prepared to have a conversation with your medical oncologist about whether you need doublet therapy, one of the two medications or triplet therapy, or if you even need to consider the addition of something like radiation to the prostate. All of these are standard of care, and it’s no longer just a one medication pipeline for treatment is really an individualized and complex therapy.

[ACT]IVATED Prostate Cancer Post-Program Survey

Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care

Understanding the Role of a Digital Rectal Exam in Prostate Cancer Care from Patient Empowerment Network on Vimeo.

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Transcript:

Lisa:

Dr. Nyame, could you explain what a digital rectal exam is and its role in the prostate cancer screening, and is the screening invasive and can men prepare for it?

Dr. Yaw Nyame:

So I am so glad that this question is here because I think for far too long, there has been this misinformation that prostate cancer screening that is effective requires a digital rectal examination. And we have a lot of data that demonstrates to us that for screening to finding cancers early, that the digital rectal examination is not necessary and it’s not effective. Effective screening requires a blood test. And that is the PSA blood test. Now, if your blood test is abnormal, we absolutely require the rectal examination for what is called staging, and that’s to understand whether you have an advanced cancer or not. That digital rectal examination means that a provider uses a lubricated gloved finger to feel the prostate through the rectum that is an invasive test, but I would say absolutely do not let the thought of the finger exam as many of the men call it, be an impediment to being screened, because really what you need to catch your cancer early is a blood test.

A blood test that most people of African ancestry should be considering in their 40s. My activation tip when it comes to prostate cancer screening is to be informed on what the best current practices are and to understand that simply getting a blood test that you can add on to your standard routine physical examination and visit with your primary care doctor starting at age 40, could significantly increase your chances of having your cancer detected early when it is curable.

Cure rates of localized prostate cancer, so cancer that is only in your prostate is somewhere between 97 to 99 percent when we catch it early, and so this blood test can save lives, we have a lot of information that demonstrates that. And I think by being aware of the benefit of screening and the harms. Okay, false positive tests, infections, some of the other things that can come downstream, you can be well informed to make a decision that suits you, and you can have these conversations with your doctor to understand whether testing is appropriate for you and when and how to pursue testing to be screened for prostate cancer.

Sherea Cary:

My activation tip for care partners it’s important that the caregiver know what the blood test, what the range should be, so that when the results are back the care partner will understand whether you or the patient need to be concerned. It’s important to have the blood test done, the PSA test, it’s important to know what it detects as a care partner, and it’s also important to know what is the range of what is normal or what is something that needs to be examined further. Knowledge is the key as a care partner.

Lisa Hatfield:

Right, thank you both Dr. Nyame and Sherea, who is a care partner. Thank you for that. Those activation tips. 

[ACT]IVATED Prostate Cancer Post-Program Survey

Prostate Cancer Screening and Outcomes | Impact of Racial Disparities

Prostate Cancer Screening and Outcomes | Impact of Racial Disparities from Patient Empowerment Network on Vimeo.

What do prostate cancer screening and outcomes data show about racial disparities? Expert Dr. Yaw Nyame with the University of Washington shares research data about screening and treatment outcomes for Black populations and the importance of early detection.

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Transcript:

Lisa:

So, Dr. Nyame, are there racial or ethnic differences in the incidence, screening outcomes, and/or treatment of prostate cancer. And can you talk about those a bit.

Dr. Yaw Nyame:

About prostate cancer demonstrates the widest racial disparity of any cancer in the United States. Black men are more likely to be diagnosed with prostate cancer, about 60 percent to 80 percent more likely, and they are more than twice as likely to die from prostate cancer compared to the average U.S. population.

When it comes to data on screening and treatment, there’s mixed data available of differing quality, but what I would say is that Black individuals, Black prostate cancer patients seem to be less likely to receive definitive treatments or treatments that can offer cure, and they’re less likely to have screening performed and perform a PSA testing, and I think a lot of the outcomes that we see reflect that lower use of early detection, finding cancers early through PSA testing, which is a blood test and lower utilization of treatment for when people are diagnosed with curable cancers is a really complex topic that I could talk about for a really, really long time, but suffice it to say that Black populations have among the worst outcomes of any cancer, when we look within prostate cancer and we know that other populations that have social disadvantages also can have worse prostate cancer outcomes as a result of the social determinants of health and other structural determinants of equity. When it comes to racial disparities and prostate cancer my activation tip is to be knowledgeable and aware.

Be knowledgeable and aware of what’s happening in your community with regards to prostate cancer and what’s happening in your family, because family histories are really important, not just to prostate cancer, but all cancers that may run in the family, because I think the first step is understanding what your individual risk is. And then that allows you to then make plans and educate yourself around things like, well, I do PSA screening to try and get my cancer detected early, if I’m at high risk, should I get treatment if I am diagnosed? And all the other things that come downstream. So really the awareness is absolutely critical, and I think having conversations that don’t seem like routine family dinner conversations, like, did grandpa have prostate cancer? Those are things that we need to normalize.

[ACT]IVATED Prostate Cancer Post-Program Survey

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.

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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. 

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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. 

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

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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.