Tag Archive for: University of Washington

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

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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

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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?

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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

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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?

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?

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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

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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?

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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

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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

What Can Signal Hormone-Sensitive Advanced Prostate Cancer?

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What Can Signal Hormone-Sensitive Advanced Prostate Cancer? from Patient Empowerment Network on Vimeo.

Advanced prostate cancer patients may experience common symptoms, but what are they? Expert Dr. Yaw Nyame with the University of Washington explains the range of symptoms that metastatic patients may experience and common treatments for advanced prostate cancer.

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

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

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

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

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

Prostate cancer screening can involve different tests, but which ones are essential? Dr. Yaw Nyame with the University of Washington explains a common misconception about a prostate cancer test and and the effectiveness of PSA blood tests.

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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

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

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

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

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

Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials from Patient Empowerment Network on Vimeo.

What’s vital for small cell lung cancer (SCLC) patients to know about clinical trials? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains the impact of clinical trial on treatment advancements and questions for patients to ask when considering clinical trial participation. 

[ACT]IVATION TIP

“…if you’re considering a clinical trial, to make sure you read that consent. And that consent can be difficult sometimes. So if you have questions, just ask. When patients are on clinical trials, there’s a whole team of people that are looking for that patient. So ask the questions that you may have from that consent with that patient.”

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Transcript:

Lisa Hatfield:

Why is clinical trial participation so important in small cell lung cancer? And what advice do you have for patients considering one?

Rafael Santana-Davila:

So clinical trials are very important, not only in small cell lung cancer, but in all cancers. The only way that we know how to treat this is by doing clinical trials. That is what moves the needle forward. It’s thanks to patients that participate in clinical trials that we know whether something worked or how much worked or something did not work, and we need to either get back to the drawing board or eliminate that possibility and move on.

Unfortunately, only the minority of patients participate in clinical trials and that is many times only because of access. So it’s important for patients to consider clinical trials. That is where we’re analyzing the future medications, and many of those future medications will become the standard of care and by participating in clinical trials, patients will have access to those medications.

And by participating in clinical trials, patients are also paying it forward. These clinical trials may not help them as much as possible, but they are helping those patients down the line. When patients are considering a clinical trial, there’s many questions that they need to ask is, “What does that involve for me? How frequently do I need to come to the cancer center? Aside from getting it, what else is asked from me? Am I being asked to also come to other blood draws, for example, or am I just receiving this treatment and that’s treatment by itself? Is there a randomized component to this clinical trial? Am I being elected to receive one arm or the other? Is there a placebo component in that trial?” The majority of patients with the majority of trials in cancer are not placebo-based.

But that’s important to know. “What help can the clinical trial give me?” Again, like we talked about, many clinical trials can help patients with lodging or transportation. So the activation tip for that is, if you’re considering a clinical trial, to make sure you read that consent. And that consent can be difficult sometimes.

So if you have questions, just ask. When patients are on clinical trials, there’s a whole team of people that are looking for that patient. So ask the questions that you may have from that consent with that patient. And I always encourage a clinical trial because again, that is what is helping us move the needle forward. 

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Key Resources for Small Cell Lung Cancer Patients and Families

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Key Resources for Small Cell Lung Cancer Patients and Families from Patient Empowerment Network on Vimeo.

What’s important for small cell lung cancer patients from underrepresented communities to know? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares advice for patient resources, his perspective about lung cancer stigma, and ways to mitigate issues with stigma.

[ACT]IVATION TIP

“…make sure that you ask your doctor, ‘Well, what about palliative care? What about social worker?’ or ‘I’m having trouble with this or that. Who can help me with this?’”

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Transcript:

Lisa Hatfield:

What key resources and support services do you typically recommend or provide to SCLC patients, particularly from underrepresented communities following their diagnosis?

Rafael Santana-Davila:

That is a good question that I don’t know the right answer to. So part of the resources that we share with the patient is a visit with a social worker, a visit with a nutritionist, a visit with our colleagues in palliative care, that they’re all part of treatment of the patient with cancer that is available both for patients of underrepresented communities or other patients.

So that is the activation tip for that is make sure that you ask your doctor, “Well, what about palliative care? What about social worker?” or “I’m having trouble with this or that. Who can help me with this?” And like we said before is a patient empowerment is…a patient that is empowered is a patient that asks all those questions and receives more help. There’s a lot of help that is out there and the key is to connect those individuals.

Lisa Hatfield:

What is your advice for a patient living with small cell lung cancer in rural areas who might not have access to state-of-the-art cancer care?

Rafael Santana-Davila:

Yes. So first of all, although people living in rural areas do not have access to major cancer centers…or let me rephrase that. They do not live in major cancer centers. Thanks to technology, they do have access. How? With telehealth. A lot of things that I do, which is medications, they don’t really have to see me for treatment. I can give advice on the treatment that can be instituted anywhere. So patients that live, again, in Eastern Washington, which is a rural part of the state, can see me through telehealth, and I can help them and their physicians who are not sub-specialists to direct their care.

And again, it’s important to know that it’s not that we’re smarter than the general community oncologists. We’re not. We just have more experience in this disease. We’ve seen a lot of things that happen, so we are able to recognize things when they happen and just have access to more clinical trials. So the activation tip for that question is make sure that…we said that before, that you seek a second opinion.

And that may not involve travel for many hours. That may be as simple as a telehealth appointment with a major cancer center of such state to know what is available. And also know that many clinical trials can now actually pay for lodging and pay for transportation to those centers. So although it’s going to be trickier for them to receive them, living in a rural area does not mean that you’re not eligible for that.

Lisa Hatfield:

Have you encountered any misconceptions or stigmas related to small cell lung cancer within underrepresented communities? And how do you address or mitigate these issues with your patients?

Rafael Santana-Davila: 

There is a lot of stigma in this disease. We know that in the great majority of patients with small cell lung cancer and lung cancer in general, there is a smoking component to it. So patients feel that this is something that they brought upon themselves sometimes and there’s a lot of stigma associated with it. And that is not true. Yes, this is a smoking-related condition, but smoking is an addiction. Patients do not smoke because they want to. They smoke because they get addicted to it.

Everybody that I’ve met who’s a smoker at some point has wanted to quit and they cannot quit, not because they don’t have the willpower, or not because they’re weak, it’s because they can’t. This is an addiction. And it’s actually cancer, both small cell and lung cancer happens in the minority of smokers. So it’s important to know that this is…yes, quitting smoking could have prevented this cancer, but quitting smoking is nothing that is easy. And even if they quit smoking, this could have come.

So it’s important to patients to know that this is not…they should not blame themselves. This is both for underrepresented minorities and the patients at large. Don’t blame yourself for this. This is nothing that you could have prevented. And this is not your fault that this happened to you.” The activation tip for this is there’s a lot of what patients need to talk about, a lot of things, and these are hard conversations that you need to have. They’re not comfortable many times, but you need to open up. You need to have these conversations with your family, and you need to really say what’s in your heart. So that would be my activation tip. 

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Small Cell Lung Cancer | Hope for Treatment Advancements

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Small Cell Lung Cancer | Hope for Treatment Advancements from Patient Empowerment Network on Vimeo.

What does the future of small cell lung cancer (SCLC) treatment look like? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains advances in SCLC research, treatments that are in clinical trials, and questions to ask about clinical trial access.

[ACT]IVATION TIP

…you need to ask the doctors, “Are there any clinical trials that you’re excited about that I should look into right now? Where are they available? And can I participate in that?”

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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

Transcript:

Lisa Hatfield:

Often, SCLC patients feel like there’s so much information coming out about non-small cell lung cancer, but feel left out of these conversations. Can you share why small cell lung cancer patients should be hopeful for more conversations around advancements in the future?

Dr. Rafael Santana-Davila:

So that is a very important question, subject. And that is true. We see a lot of advances in non-small cell lung cancer and not that much in small cell lung cancer. I frequently say that small cell lung cancer is the bad brother, the black sheep that we don’t talk about. Part of that is because small cell lung cancer is just a more aggressive cancer, but part of that is it has not been studied as much as non-small cell. Non-small cell lung cancer is also a hodgepodge of diseases, and there are a variety of diseases that are nested into that category, so it’s natural to have more advances in that because there are more diseases. But I can tell patients that we’re making headways in small cell lung cancer.

We’re making headways in identifying those patients that we need to escalate therapy, we’re identifying novel treatments. There are different things in the pipeline that range from other methods of immuno-oncology, like complicated names like BiTE therapies or antibody drug conjugates that are coming out. There are a lot of epigenetic therapies that are coming out. So although it’s true that patients with non-small cell lung cancer have had more advances, there is still a lot of hope for the future. And what I can tell you it’s changing rapidly. And in a year, the treatments that we may have available will be different. And all those things are right now going into clinical trials. So that’s why the activation tip for that is you need to ask the doctors, “Are there any clinical trials that you’re excited about that I should look into right now? Where are they available? And can I participate in that?”

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How Small Cell Lung Cancer Patients Can Best Self-Advocate

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How Small Cell Lung Cancer Patients Can Best Self-Advocate from Patient Empowerment Network on Vimeo.

How can small cell lung cancer (SCLC) patients advocate for optimal care? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares advice for questions to ask your doctor and about the benefits of telehealth and clinical trials.

[ACT]IVATION TIP

“…make sure that you ask several questions to your doctor is, “Can I have access to a second opinion to a sub-specialist in lung cancer? Or have you thought about my case? And is there any availability of clinical trials here or in other centers?”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

Transcript:

Lisa Hatfield:

So one of your areas of research is studying how small cell lung cancer patients in the general population, those who don’t have access to cancer centers, are treated in order to figure out how to best bring the most recent advances in care to these individuals. Can you share with us some recent findings or learnings from your research, and how can these patients maybe best advocate for themselves?

Rafael Santana-Davila:

Medicine is a team sport. And this is also especially true for cancer. And the difference that…when I see patients, I tell them that it’s not that I’m smarter than the community oncologist. I’m not. The difference that I have with community oncologists is that I’m a sub-specialist. So who I treat are patients who have cancers of the chest or the head and neck. That means that I dedicated my career to treating those patients. And if you ask me questions about lung cancer or head and neck cancers, we can talk forever. But I’m no longer a specialist in treating all other cancers. Community oncologists don’t have that luxury.

So I do think that it’s very important for patients to get a second opinion, to have access to a major cancer center so that they can be sure that the plan of treatment is something that is the top of the line, the best treatment that is available. And they also ask about clinical trials, because there’s clinical trials out there that are moving the needle forward, and participation of those clinical trials is something that is very important. So having an opinion by somebody that, again, treats only lung cancers is very important. Now, the only thing good that COVID had was that it led to telehealth.

So nowadays I can see patients…I work in Seattle, so I can see patients that live across the state and in the farmland where they don’t have access to an academic medical center also to a sub-specialty, but I can see them through telehealth and I can…in the majority of cases, I say, “Yes, your doctor at home has a good plan. Let’s treat you with that.” Or I give some tips or tricks to the community oncologists, or I offer the latest and greatest in clinical trials and patients can make that decision at that point.

So the activation tip for this is make sure that you ask several questions to your doctor is, “Can I have access to a second opinion to a sub-specialist in lung cancer? Or have you thought about my case? And is there any availability of clinical trials here or in other centers?” That’s what I would tell patients. And patients need to be the best advocates for themselves and they are. They know that they’re going through a very rough time, but they just need to say, “What else can I do for this?”

Lisa Hatfield:

Great, thank you so much for that. And as a cancer patient myself and a patient advocate, I fiercely advocate for patients to always, if you get a cancer diagnosis, if you can, consult with somebody who is a specialist or a sub-specialist in the type of cancer you have. It can make a difference for you.

Rafael Santana-Davila:

I agree. And, again, with the era of telehealth, that has opened the ability for this.

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