PC Access and Affordability Archives

The impact of prostate cancer isn’t just physical, it’s also financial. Navigating coverage and out-of-pocket expenses is a minefield for many patients and care partners.

Let us help you make sense of costs, coverage and where to turn to for help.

More resources for Prostate Cancer Access and Affordability from Patient Empowerment Network.

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

How Can Prostate Cancer Patients and Providers Help Ensure Quality Care? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients and providers help ensure quality care? Host Dr. Nicole Rochester asks Dr. Petros Grivas to share insights about available patient resources and ways that providers can help extend improved prostate cancer diagnostics and treatments to patients for better care.

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


Related Resources:

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


Transcript:

Dr. Nicole Rochester: 

So, Dr. Grivas, how can we ensure that a patient’s geographic location doesn’t dictate the quality of care that they receive? 

Dr. Grivas: 

A very important question for sure, and I think as you point it out, we have touched upon this before, but I think it is definitely much more to be said and done. More importantly, I think the location has to do with multiple differences in social constructs, right? The location of the distance from a cancer center with expertise is one thing at the time to get to the cancer center is related to that, and also the social support that the patient may have, if for example, a particular treatment, for example, a clinical trial, the requires a weekly visit to the cancer center, is that the feasible thing for the patient who lives miles and miles away in the rural areas of Oklahoma or somewhere else. Can we design clinical trials that are more friendly to these scenarios that require less frequent visits. Can we provide, if possible, funding for housing closer to the cancer center, and there are examples of cancer centers doing that. They provide temporary housing for the patient to be able to be close to the cancer center, so they don’t even worry about going back and forth across the state lines sometimes. 

The other thing, of course, is insurance coverage, and again, this can have some relation to location, and it’s something we have to think about, how can we help our patients who have significant co-pays because of the recommended insurance to that location being supported by foundation or all other funds that the cancer center or the state, or again, other foundations, we have. The other issues about diagnostics and treatments, there has been some interesting discussion about particularly prostate cancer, about access to what we call next generation sequencing, which is a diagnostic test aiming to profile or fingerprint the cancer DNA to look for particular mutations that the cancer may have that may lead to a particular treatment options. 

 If, for example, mutation A is present, can we use a drug X that might be relevant in that context of a mutation and a recent data that was presented at ASCO 2021 showed that if you look at those mutations, they’re not very different between, for example, white and Black patients, there are similar types and frequencies of mutations. What is different is access to the test and, of course, access to the therapy of the test. So, I think we have to do a better job bringing ourselves to the community, extending our opportunities to the patient to get connected with the healthcare system, and they’ll build bridges to bring the patient and closer to the cancer center offering those tests. Work with patient navigation to help patients understand the significant value of the follow-up, but also provide them with a way that there’s equitable access to diagnostics and treatments. 

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

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

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

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


Related Resources:

What Barriers Do Prostate Cancer Patients Face When Seeking Care?

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


Transcript:

Dr. Nicole Rochester: 

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

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

Dr. Nyame: 

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

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

Dr. Nicole Rochester: 

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

Dr. Grivas: 

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

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

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

Dr. Nyame: 

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

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

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

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

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


Related Resources:

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


Transcript:

Dr. Nicole Rochester: 

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

Dr. Nyame: 

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

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

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

How Can Prostate Cancer Providers Help Empower Patients?

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

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

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


Related Resources:

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

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


Transcript:

Dr. Nicole Rochester: 

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

Dr. Nyame: 

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

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

Dr. Nicole Rochester: 

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

Dr. Grivas: 

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

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

 Dr. Nicole Rochester: 

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

What Are Some Practical Solutions to Prostate Cancer Care Barriers?

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

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

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


Related Resources:

What Barriers Do Prostate Cancer Patients Face When Seeking Care? 


Transcript:

Dr. Nicole Rochester: 

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

Dr. Nyame: 

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

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

Nicole Rochester: 

Dr. Grivas? 

Dr. Grivas: 

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

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

What Barriers Do Prostate Cancer Patients Face When Seeking Care?

What Barriers Do Prostate Cancer Patients Face When Seeking Care? from Patient Empowerment Network on Vimeo.

What barriers do prostate cancer patients face in gaining access to care? Host Dr. Nicole Rochester and Dr. Yaw Nyame and Dr. Petros Grivas share their perspectives on factors that impact access to care and ways some barriers can be removed to improve prostate cancer care.

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


Related Resources:

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


Transcript:

Dr. Nicole Rochester: 

Drs. Nyame and Grivas, we know that location, socioeconomic status, insurance, financial hardships, lack of urologists in rural areas, geographic distance services and access to transportation all play an important role in the outcomes for patients and families facing a prostate cancer diagnosis. So, I want to start with our first question, and we’ll start with you, Dr. Grivas, what are some of the barriers, both prostate cancer patients and their care partners face when seeking care? 

Dr. Grivas:

The number of those factors have to do with the location of the patient as you mentioned, patients regardless of race, if they live in a rural community, then they have less communication or contact with a medical care system, and that’s in all reality there’s data suggesting that a cruelty to states this access to care issue is becoming more and more noticeable, and the distance involved in some ways to get a medical facility, let alone a specialized medical facility, specialized in-person culture. It can be a big problem. The other issue that we have seen many times, again, in some communities more than others, is a healthcare literacy and the preventive mindset as I call it, and that again, can transpire across races, but maybe even more intense in some of the populations. And when I talk about health literacy and preventive mindset, it’s about the relationship, an individual of the healthcare system, and sometimes the distrust, right, that may take place and also the, I would say comfort that the patient has to enter and access a medical care system that they can allow the providers to take care of them, and these are real, I would say, examples that we have seen based on having this concern of letting sales be taken care of in a medical system, competing problems and barriers include financial contraction, that’s a big one.  

Insurance coverage. We know that patients who…I would say social determinants of health may have not very good coverage, and this may be restricting award medical facilities that they can access, and also the cost of care, co-pays, for example, when diagnostic tests or acute interventions for orderly available agents can be a big carrier and no compliance can be diminished with co-pay. Of course, you mentioned many other factors, transportation issues, finding coverage of work, getting day off work can be a problem for some patients, and also the cost of transportation or lodging or parking sometimes can be a problem or even the anxiety to go to a big city and deal with a traffic, of course. So there are many factors, of course, but I think we have to have a systematic approach how to catalog them and address them in a comprehensive way, and I think there are some improvements and we can talk about them today, for example, telemedicine and others, but I think the list is long, and we have to keep an open mind and engaged patient advocates in cataloging those barriers. Maybe Dr. Nyame can comment further in that regard. 

Dr. Nicole Rochester: 

You covered a lot of ground, and I appreciate that. Dr. Nyame, I’d love for you to either add to that list or maybe expand based on your perspectives. 

Dr. Nyame: 

Dr. Grivas didn’t leave me with much to cover, which is great. I think what you hear, in his answer to that question is that this is really a social issue, and I think when we talk about inequities in health, we have to recognize that race in this country, and many places around the world really reflects a social construct, and so the things that really predict how people are going to be able to utilize our services and how well they’re going to do reflect that greater social context, and so to me…you have to meet the patient where they are. And the strength of the relationships that you can build between the healthcare system and the communities that are at risk, especially the ones that have the highest disproportionate risk of bad outcomes or not being able to utilize services is important. And so the barriers include all the things we talked about, but a lot of them that we’ve talked about have been very much healthcare-facing, so we talk about transportation, what we mean that in the source of transportation to our facilities or we talk about money, but we talk about money and the ability to pay for our services, we also miss the other ways in which those social barriers and factors impact the ability to prioritize one’s health. 

Dr. Nyame: 

And so that is a really big problem. And something that we also need to put in the context of this conversation. I think when we take the covers off and we really see what our patients’ lives are like, sometimes we recognize that it’s not just about their ability to utilize the services that we provide, but that there are bigger issues at hand that also need addressing. Those aren’t in Dr. Grivas and I’s domain, but I think we have to understand those things to meet our patients where they are. 

Dr. Nicole Rochester: 

Absolutely, I really appreciate that both of you have really focused on those social determinants of health. I appreciate you mentioning racism, and the fact that the patients being able to prioritize their health, I think historically in medicine, we have blamed our patients for not taking care of themselves, so to speak, without a full appreciation of all of these barriers that both of you have just identified, so I really appreciate that. 

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

How Can I Get the Best Prostate Cancer Care No Matter Where I Live? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients ensure they get quality care even if they live in rural areas? Noted experts, Dr. Petros Grivas and Dr. Yaw Nyame share advice and discuss how to receive optimal care no matter your geography or financial status. Learn about resources and digital tools you can utilize to ensure better care no matter where you live. 

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Transcript:

Dr. Nicole Rochester: 

Hello and welcome. I’m Dr. Nicole Rochester, your host for today’s Patient Empowerment Network program, and we are so happy that you’ve tuned in. Today we’re going to be talking about how prostate cancer patients can truly get the best care no matter where you and your family live, we’re going to talk about things like how can I remove roadblocks in my care to gain access to state-of-the-art treatment? Will my insurance limit me if I wanna get a second opinion as a care partner, how do I best advocate for my loved one and is a clinical right for me? The answers to some of these questions we receive revolve around awareness, feeling empowered to ask questions and connecting to the right resources at the right time. In this program we’ll be learning just that as we meet our experts. It is my honor and privilege to be joined by Dr. Petros Grivas, Associate Professor and clinical director of the genitourinary cancer program at the University of Washington. And Dr. Yaw Nyame, Assistant Professor in the Department of Urology at the University of Washington. Thank you so much for joining us today, gentlemen. 

Dr. Nyame:

Thank you for having us. 

Dr. Grivas: 

Thank you so much for having us. It’s an honor and pleasure to be with you. 

Dr. Nicole Rochester: 

It is my honor as well. Please remember that this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team on the best options for you. Now, let’s take a few minutes to set the stage and give a brief overview of barriers in the way of achieving equitable prostate cancer treatment. Doctors Nyame and Grivas, we know that location, socioeconomic status, insurance, financial hardships, lack of urologists in rural areas, geographic distance services and access to transportation all play an important role in the outcomes for patients and families facing a prostate cancer diagnosis. So, I wanna start with our first question, and we’ll start with you, Dr. Grivas, what are some of the barriers that prostate cancer, let me do that one again. What are some of the barriers, both prostate cancer patients and their care partners face when seeking care? 

Dr. Grivas: 

Thank you so much. These are really important discussions, and I’m glad we’re doing this program. I think you covered a number of those barriers in your introduction, and I would definitely agree with all of them because many of them are important. The number of those factors have to do with the location of the patient as you mentioned, patients regardless of race, if they live in a rural community, then they have less communication or contact with a medical care system, and that’s in all reality there’s data suggesting that a cruelty to states this access to care issue is becoming more and more noticeable, and the distance involved in some ways to get a medical facility, let alone a specialized medical facility, specialized in-person culture. It can be a big problem. The other issue that we have seen many times, again, in some communities more than others, is healthcare literacy and the preventive mindset as I call it, and that again, can transpire across races, but maybe even more intense in some of the populations. And when I talk about health literacy and preventive mindset, it’s about the relationship, an individual of the healthcare system, and sometimes the distrust, right, that may take place and also the, I would say comfort that the patient has to enter and access a medical care system that they can allow the providers to take care of them, and these are real, I would say, examples that we have seen based on having this concern of letting sales be taken care of in a medical system, competing problems and barriers include financial contraction, that’s a big one. 

Insurance coverage. We know that patients who… I would say social determinants of health may have not very good coverage, and this may be restricting award medical facilities that they can access, and also the cost of care, co-pays, for example, when diagnostic tests or acute interventions for orderly available agents can be a big carrier and no compliance can be diminished with co-pay. Of course, you mentioned many other factors, transportation issues, finding coverage of work, getting day off work can be a problem for some patients, and also the cost of transportation or lodging or parking sometimes can be a problem or even the anxiety to go to a big city and deal with a traffic of course. So there are many factors, of course, but I think we have to have a systematic approach how to catalog them and address them in a comprehensive way, and I think there are some improvements and we can talk about them today, for example, telemedicine and others, but I think the list is long, and we have to keep an open mind and engaged patient advocates in cataloging those barriers. Maybe Dr. Nyame can comment further in that regard.  

Dr. Nicole Rochester: 

Thank you so much, Dr. Grivas, yeah, you covered a lot of ground, and I appreciate that Dr. Nyame I’d love for you to either add to that list or maybe expand based on your perspectives. 

Dr. Nyame:

Dr. Grivas didn’t leave me with much to cover, which is great. I think what you hear, in his answer to that question is that this is really a social issue, and I think when we talk about inequities in health, we have to recognize that race in this country, and many places around the world really reflects a social construct, and so the things that really predict how people are going to be able to utilize our services and how well they’re going to do reflect that greater social context, and so to me… You have to meet the patient where they are. And the strength of the relationships that you can build between the healthcare system and the communities that are at risk, especially the ones that have the highest disproportionate risk of bad outcomes or not being able to utilize services is important. And so the barriers include all the things we talked about, but a lot of them that we’ve talked about have been very much healthcare-facing, so we talk about transportation, what we mean that in the source of transportation to our facilities or we talk about money, but we talk about money and the ability to pay for our services, we also miss the other ways in which those social barriers and factors impact the ability to prioritize one’s health. 

And so that is a really big problem. And something that we also need to put in the context of this conversation. I think when we take the covers off and we really see what our patients’ lives are like, sometimes we recognize that it’s not just about their ability to utilize the services that we provide, but that there are bigger issues at hand that also need addressing. Those aren’t in Dr. Grivas and I’s domain, but I think we have to understand those things to meet our patients where they are. 

Dr. Nicole Rochester: 

Absolutely, I really appreciate that both of you have really focused on those social determinants of health. I appreciate you mentioning racism, and the fact that the patients being able to prioritize their health, I think historically in medicine, we have blamed our patients for not taking care of themselves, so to speak, without a full appreciation of all of these barriers that both of you have just identified, so I really appreciate that. 

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

Dr. Nyame: 

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

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

Nicole Rochester: 

Dr. Grivas? 

Dr. Grivas: 

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

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

Dr. Nicole Rochester: 

I love that you all are focusing on equity, which as we know, is giving every patient what they need in order to achieve their optimal health, and as both of you have stated, that’s very different than equality, and so this concept that we really have to meet our patients where they are, and that some of our patients may be a little bit more than others, and that’s okay, in fact, that’s really what we have to do in order to eliminate these disparities, so I really appreciate both of your thoughts and that’s a great lead in to our next segment, which is really focused on racial and ethnic disparities, and both of you have kind of touched on this a little bit already, so we know that there are as with every other type of cancer and every other disease, there are significant health disparities with BIPOC patients, and so Dr. Nyame, I’d love for you to talk about specifically with prostate cancer, some of the disparities that you see in your practice and in your research, and then what are some things that patients of color can do to protect themselves from these inequities? 

Dr. Nyame: 

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

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

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

Dr. Nicole Rochester: 

Absolutely, and certainly the COVID pandemic has really brought that whole mistrust and distrust to light, so I appreciate you touching on that. We’re going to move to talk about treatment access, and I love how this conversation is flowing because so many of these elements have already been discussed, so we’re gonna talk about treatment access for prostate cancer patients, and we know that sometimes the barriers that patients face, as you mentioned actually limit their access to quality care and to appropriate treatment. So, Dr. Grivas, how can we ensure that a patient’s geographic location doesn’t dictate the quality of care that they receive? 

 Dr. Grivas: 

A very important question for sure, and I think as you point it out, we have tasked upon this before, but I think it is definitely much more to be said and done. More importantly, I think the location has to do with multiple differences in social constructs, right? The location of the distance from a cancer center with expertise is one thing at the time to get to the cancer center is related to that, and also the social support that the patient may have, if for example, a particular treatment, for example, a clinical trial, the requires a weekly visit to the cancer center, is that the feasible thing for the patient who lives miles and miles away in the rural areas of Oklahoma as Dr. Nyame mentioned or somewhere else. Can we design a clinical trial that are more friendly to these scenarios that require less frequent visits. Can we provide, if possible, funding for housing closer to the Cancer Center, and there are examples of cancer centers doing that. They provide temporary housing for the patient to be able be close the cancer center, so they don’t even worry about going back and forth across the state lines sometimes. 

The other thing, of course, is insurance coverage, and again, this can have some relation to location, and it’s something we have to think about, how can we help our patients who have significant copays because of the recommended insurance to that location being supported by foundation or all other funds that the cancer center or the state, or again, other foundations, we have. The other issues about diagnostics and treatments, there has been some interesting discussion about particularly prostate cancer, about access to what we call next generation sequencing, which is a diagnostic test aiming to profile or fingerprint the cancer DNA to look for particular mutations that the cancer may have that may lead to a particular treatment options. 

If, for example, mutation A is present, can we use a drug X that might be relevant in that context of a mutation and a recent data that was presented at ASCO 2021 showed that if you look at those mutations, they’re not very different between, for example, white and Black patients, there are similar types and frequencies of mutations. What is different is access to the test and, of course, access to the [inaudible] of the test. So I think we have to do a better job bringing ourselves to the community, extending our opportunities to the patient to get connected with the healthcare system, and they’ll build bridges to bring the patient and closer to the cancer center offering those tests. Work with patient navigation to help patients understand the significant value of the follow-up, but also provide them with a way that there’s equitable access to diagnostics and treatments. 

 Dr. Nicole Rochester: 

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

Dr. Nyame: 

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

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

Dr. Nicole Rochester: 

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

Dr. Grivas: 

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

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

 
Dr. Nicole Rochester: 

Absolutely, thank you, both of you. I love the patient-centered focus, that is something that admittedly, we’ve gotten away from that to some degree in medicine because of the time crunches that both of you have mentioned, and I love that you said knowledge is power. So as we close, I’d love for each of you to share maybe a couple of key questions that patients, our care partners facing prostate cancer should ask of their treatment team to ensure that they’re receiving appropriate care. 

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

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

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

 
Dr. Nicole Rochester: 

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

Dr. Grivas: 

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

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

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

Dr. Nyame: 

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

 Dr. Nicole Rochester: 

Such wonderful points. This has been an amazing conversation. Thank you so much, Dr. Nyame and thank you Dr. Grivas for just illuminating so many important issues, just to briefly summarize, we’ve talked about the disparities that exist in prostate cancer, diagnosis and treatment based on geographic location, based on finances, insurance that is access and… Yes, even race and ethnicity, and you all have done a wonderful job providing solutions, we’ve talked about the importance of advocating for yourself and your loved ones, the importance of being educated and doing some research, coming to those visits with your questions, making sure that you form a relationship with your treating physicians and sometimes perhaps seeking someone else, if that’s not possible, so just… So many gems, and I just wanna thank both of you for spending this time with us today, and I wanna thank you all for tuning in to this Patient Empowerment Network program. I’m Dr. Nicole Rochester, and thank you for joining us. 

Dr. Grivas: 

Thank you. 

How Does Stress Correlate With Your Prostate Cancer Diagnosis?

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

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

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are Some Hereditary Factors Impacting Prostate Cancer Patients?

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

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

 

Transcript:

Dr. Leanne Burnham

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

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

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

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

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

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

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are Some Hereditary Factors Impacting Prostate Cancer Patients?

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

How Does Stress Correlate With Your Prostate Cancer Diagnosis?

 

Transcript:

Dr. Leanne Burnham

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

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

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

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

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

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

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Are Some Hereditary Factors Impacting Prostate Cancer Patients?

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

How Does Stress Correlate With Your Prostate Cancer Diagnosis?

 

Transcript:

Dr. Leanne Burnham

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

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

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

What Are Some Hereditary Factors Impacting Prostate Cancer Patients?

What Are Some Hereditary Factors Impacting Prostate Cancer Patients? from Patient Empowerment Network on Vimeo.

Along with aging, hereditary factors also contribute to prostate cancer incidence. Expert Dr. Leanne Burnham details some of the hereditary factors, their mechanism of action, and some treatments under study in prostate cancer clinical trials for African American men.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

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

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

How Does Stress Correlate With Your Prostate Cancer Diagnosis?

 

Transcript:

Dr. Leanne Burnham

So, cancer is a disease of aging, and cancer is a hereditary disease for a lot of different kinds of cancers, not all, but for a lot of them. And so prostate cancer is one of those that we know for sure that there are some genetic variations that are passed down from our parents that would make men either predisposed or not to get prostate cancer and also would predispose them to get aggressive prostate cancer.

And so, for example, if you have a father, an uncle, grandfather, if you have family members that have had prostate cancer, and beyond that, if you had women in your family that have had breast cancer, then that increases your chance as a man to get prostate cancer and to get it even younger than other races would. And so certain things that we look at in the lab and in the clinic at City of Hope are really trying to understand what those hereditary factors are, and then how you can target them with drug treatments specifically.

So, for example, we have a clinical trial that a team of us developed, and we are looking at the ability of something called PARP inhibitor not to get too technical with you, but PARP inhibitors, if you want to Google it, they are at the forefront of prostate cancer treatments right now, and especially a few running in clinical trials. And so there is a hereditary disposition, there is a mutation on the BRCA gene that leads to PARP inhibitors benefiting any person that would have that BRCA mutation.

What we’re doing in our clinical trial is we are using a PARP inhibitor called talazoparib (Talzenna), and we are not only providing that to patients that have the spark commutation, but we are extending it to patients that may not have that mutation, and the reason for is because, and I definitely don’t want to get crazy technical, but the reason for it in a nutshell, as we know in cancer there is an interaction between PARP inhibition and androgen receptor function and reaction to treatments. And so, you may have heard of androgen and androgen receptor when it comes to prostate cancer, it’s really the fancy way of saying testosterone, and prostate cancer needs testosterone, or it needs androgen and androgen receptor to function and to grow. And so, what we want to see in this clinical trial is if we target, if we use PARP inhibitors in combination with hormone therapy that’s targeting androgen production androgen receptor, will we see better treatment and better response to the drugs in those patients. And the extra cool part to me is we know that there are variations in DNA segments that affect androgen receptor function in African American men. And so, for a specific mechanism that I won’t dive into, it involves trinucleotide repeats and link, segments links and all this, but because of these variations and androgen receptor in African American men that we know was associated with their ancestry and what they’ve inherited in their own DNA, this drug should work better in African American men. And we will be able to tease that out in this clinical trial. So, it’s an opportunity for African American men who have prostate cancer who have not developed castration resistance yet, but who do have metastatic prostate cancer so, at that point, there is not a cure, right, and so you can go to your physician, and you can get a standard of care therapy, or you may want to consider this clinical trial where you would receive standard care therapy. And then also, as I said before this VIP access to this new drug, this PARP inhibitor that we think may improve outcomes in men.

Will Telemedicine Bridge Gaps to Equitable Care for Underserved Prostate Cancer Patients?

 

Remote access to healthcare – also known as telehealth of telemedicine – has become broadly used, especially by cancer patients. As an avenue toward reducing inequities, the Patient Empowerment Network (PEN) is fostering change toward achieving equitable healthcare for all. One resource, the Prostate Cancer TelemEDucation Resource Center, helps improve prostate cancer patients’ and care partners’ familiarity with healthcare, and thus increase quality of care regardless of the COVID pandemic, geographical location, or racial disparities. The program focuses on the specific needs of Black men and other vulnerable communities to most effectively reduce the disparities that prevent access to equitable cancer treatment.

Here’s a summary view of the knowledge gained about telemedicine to help provide optimal care to prostate cancer patients and to aid in receiving optimal care no matter virus limitations, where patients live, and disparities by race.

Benefits and Limitations of Telemedicine Visits

There are both benefits and limitations of telemedicine visits. Some benefits to keep in mind about telehealth visits include:

  • Active surveillance with lab tests every few months along with telemedicine visits are a good fit for low-risk prostate cancer.
  • Patients with high-risk prostate cancer can increase the frequency of their telemedicine visits along with their recommended in-person treatments.
  • Laboratory test results and prescription information can often be accessed in online patient portals.
  • Remote monitoring is used to reduce the risk of infection for those with reduced immune system function, such as those with prostate cancer.

Telemedicine cannot handle all parts of the prostate cancer care toolkit, however. Some limitations of telehealth include:

  • Prostate cancer treatments like radiation, chemotherapy, and immunotherapy cannot be carried out via telemedicine.
  • Virtual care visits may prevent equitable care access for some patients like those who lack access to a reliable Internet connection or to a smartphone, tablet, or computer.
  • Patients with low health literacy or limited English language fluency may face obstacles to utilizing telemedicine.

How to Optimize a Telemedicine Visit

Just like in-person care visits, telemedicine visits are scheduled with a time limit in mind. Some things to remember about telemedicine visits are:

  • Try to write down your questions for your doctor or care provider before your appointment to keep on track. Keep it next to you for easy access during your visit.
  • If a video conferencing tool is needed for your visit, install the tool on your laptop, tablet, or smartphone ahead of time to prevent rushing before your appointment. If possible, try to test the video conferencing tool with a friend or loved one a day or so ahead of your appointment.
  • If you normally have a friend or loved one join you for in-person visits, have them join your telemedicine to help take notes and to ask questions.
  • If there’s anything you don’t understand during the appointment, ask your doctor to explain it again – whether it’s medication instructions, test results, a new medical term, or anything else.
  • If you feel like a treatment isn’t working well for you, ask your doctor about possible medication or dosage changes.
  • Just like in-person doctor visits, your doctor or care provider may run a few minutes late. Try your best to remain flexible and to be patient.

Telemedicine and Prostate Cancer Clinical Trials

Now that even more prostate cancer patients have become accustomed to using telemedicine care tools, there are more clinical trial options. Looking ahead, keep in mind that:

  • Telemedicine can help prostate cancer patients with lower socio-economic status or who live in very remote areas to gain access to clinical trials that weren’t accessible to them in the past.
  • Prostate cancer therapies will continue to improve for BIPOC patients – and especially for Black men – as a higher percentage of prostate cancer patients participate in clinical trials.
  • Clinical trials provide VIP access to cutting-edge treatments and help to determine the best care for specific BIPOC groups as more patients participate in trials.

Financial Benefits of Telemedicine

Telemedicine has brought some financial benefits for prostate cancer patients, including:

  • Telemedicine saves the time and costs of traveling to appointments and can reduce or sometimes eliminate the need to take time off from work for an appointment.
  • The use of telemedicine eliminates the need to find child care for patients and care partners with young children who couldn’t take them along to in-person doctor appointments.
  • The option of connecting with your doctor via telemedicine can sometimes eliminate the need for costly urgent care visits.

Telemedicine Glossary

Here are some helpful telemedicine terms to know:

  • HIPAA – HIPAA, or the Health Information Portability and Accountability Act, is a healthcare compliance law providing data security and privacy for the safeguarding of patient medical information. In telemedicine, provider-patient communication must take place through HIPAA-compliant secure platforms.
  • Patient portal – a secure Internet sign-on that allows patients to contact their provider, review medical tests and records, access health education materials, and seek appointments. Most provider networks develop a patient portal before they move to full video appointments.
  • Remote monitoring – type of ambulatory healthcare where patients use mobile medical devices to perform a routine test and send the test data to a healthcare professional in real-time.
  • VPN – a VPN, or virtual private network, is a secure and private way to connect to the Internet over public wireless connections. VPNs are particularly important for those living the digital nomad lifestyle and connecting in foreign countries where networks may be more vulnerable to communication transmission interference.

Now that telemedicine tools are gaining both in usage and numbers, prostate cancer patients can feel hopeful about improved care and treatment toward the future. As a step in that direction, take advantage of the resources below and continue to visit the Prostate Cancer TelemEDucation Resource Center for informative content about prostate cancer and telemedicine.


Resources to Learn About Improving Prostate Cancer Health Disparities

 Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

How Will Telemedicine Impact Prostate Cancer Clinical Trials?

What Prostate Cancer Populations Will Benefit Most From Telemedicine?

What Are the Limitations of Telemedicine for Prostate Cancer Patients?

What Are the Benefits of Telemedicine for Prostate Cancer Patients?

How to Make the Most of a Virtual Visit

Telemedicine & Second Opinion Option 

Will Telemedicine Mitigate Financial Toxicity for Prostate Cancer Patients?

Financial Resources for Patients and Families


Sources

https://ascopubs.org/doi/pdfdirect/10.1200/OP.20.00645

https://www.cityofhope.org/citystories/leanne-burnham-prostate-cancer-researcher

Financial Resources for Patients and Families

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Financial Resources

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Telemedicine Tips and Facts for Prostate Cancer Patients

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Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit

Dr. Leanne Burnham’s Top Tips for Your Prostate Cancer Telemedicine Visit from Patient Empowerment Network on Vimeo

What are some ways that prostate cancer patients can prepare for telemedicine visits? Dr. Leanne Burnham shares her top tips for ensuring success and for getting the most out of televisit appointments.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

Related Resources:

 

What Prostate Cancer Populations Will Benefit Most From Telemedicine?

How Will Telemedicine Impact Prostate Cancer Clinical Trials?

What Are the Benefits of Telemedicine for Prostate Cancer Patients?

 

Transcript:

Dr. Leanne Burnham

Okay, my top three tips to prepare for a telemedicine visit is if you would usually have an advocate come with you to your in-person doctor’s appointment, try to make that happen for your televisit appointment as well. And explain to your physician when you get on the call say, “Hey, this is my wife, this is my husband, and they’re going to be joining the call if they have a few questions too, and I would like to have them be involved as part of the conversation.” The other thing is to have your questions prepared ahead of time, you know, and a lot of people have questions prepared ahead of time for in-person visits, but they might be nervous, they might keep their questions tucked away, well, this way your questions can be on the table next to you. Your doctor doesn’t even know, you still get to ask those questions though, and then the third tip that I would have is to allow for technology to mess up. So, for your visits, a lot of times your physician may give you a window where they say, “We’re going to call you between such and such time,” such as such time, you just sitting there waiting for them to call. But I say give yourself even more time than that in case you know something’s going on with your Internet or you are just not able to log into the app well, because I did have that happen to me personally, one time with the physician, and they were trying to get ahold of me, and I was having trouble connecting, and then he emailed me later saying, “You missed our appointment.”

I really wasn’t trying to miss the appointment, so just give yourself that extra time to get your technology together.