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Staying Proactive While Facing a Prostate Cancer Diagnosis

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

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

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

Lisa Hatfield and Dr. Yaw Nyame

High-Risk Prostate Cancer and Population Genetics

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

Dr. Issac Powell

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

Lisa Hatfield and Dr. Ronald Chen

Prostate Cancer Disparities and Clinical Trials Distrust

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

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

Dr. Yaw Nyame

Solutions Toward Better Prostate Cancer Care

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

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

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

[ACT]IVATED Prostate Cancer Program Resources

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

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

Are There Worldwide Links to Aggressive Prostate Cancer?

Are There Worldwide Links to Aggressive Prostate Cancer? from Patient Empowerment Network on Vimeo.

Does aggressive prostate cancer occur more often in specific population groups? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses some regions with high prostate cancer incidence outside the U.S., the impact of inflammatory cytokines, and how screening recommendations may change.

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Related Resources:

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Advanced Prostate Cancer Disparities Be Reduced?

Transcript:

Lisa Hatfield:

So, Dr. Powell, worldwide are there factors that drive aggressive prostate cancer?

Dr. Isaac Powell:

Yes, let me address that. In 2015 it was reported that in Ghana, the incidence of prostate cancer was higher than in the United States. It’s also been found in the Caribbean, Jamaica specifically in Haiti, that the incidence in prostate cancer is greater than among African Americans in this country. So that takes us to the question of what is it about Africa that’s responsible for this aggressive cancer. And so I’ve been looking into that issue and finding that it’s not all Sub-Saharan Africa, it’s the West Africa. It’s consistent with the slave trade and what is it about West Africa and also Central Africa that is causing this. And I also found that in East Africa, the incidences of prostate cancer as well as breast cancer is less than West Africa. So what now we’re talking about the environment. What is it about the environment of West Africa versus East Africa. And the environment is in West Africa considered a rainforest and in East Africa is considered a different environment. 

The diseases are different. In West Africa, you have such disease as a malaria and yellow fever, acute inflammatory diseases, West Africa, I mean East Africa, you don’t have that you have other things. So it’s the environment of West Africa, the rainforest specifically that causes those particular diseases. Now the genetics is, in those poor inflammatory cytokines that we’ve discussed that causes prostate cancer and, in fact, other benign diseases to be more progressive, protect against these acute infections. So this is…the immune system is very complex. In some cases it protects, in some cases it drives the cancers. This is what is…therefore, cancer is what is called an autoimmune disease. And so what the protection does, it selects the population in West Africa. The population that’s selected, because people don’t die from malaria because of these high expressions of poor inflammatory cytokines but, they do then die from chronic diseases such as cancer because those same genes drive the cancers.

 Now, the worldwide scientific organizations have shown a map of West Africa and Central Africa where malaria is very high. That same map shows that prostate cancer is more aggressive in that same area where malaria causes diseases. So the environment has a significant impact on the genome. The environment specifically impacts what I mentioned earlier, the oxidative stress, which is activated by reactive oxygen species. The reactive oxygen species is what is called an unpaired electron which makes it inactive and want…and therefore interacts with various environmental factors. These environmental factors also will activate through RNA methylation. Those two factors are the part of the genome that interacts with the environment, and those two factors interact with pro-inflammatory cytokines. So there is a triangle there that interacts or interplays during cancer and other diseases, and that’s where the environment impacts on the genome causing more cancers in particular populations.

Now, in terms of European Americans, there’s a difference between the Northern European genome gene pools and Southern European gene pools and prostate cancer. And Northern Europe prostate cancer is more aggressive compared to Southern Europe. So it’s not just among people of color. In fact, the color makes very little difference in whether you have an aggressive cancer, particularly in Sub-Saharan West Africa as well as in European. So I just wanted to make that point. And not many people are talking about this, because this is what is called population genetics. Epigenetic, transgenerational, hereditary genetics, those genes are transferred through populations over generations. So that’s what I’ve been learning more recently and there needs to be more discussion about population genetics. We know about familial hereditary, but this is different. This is population hereditary genetics.

Lisa Hatfield:

That is so interesting. So do you think over time there will be recommendations for…I think it depends too on funding for it, but for screening in certain areas of the world for prostate cancer or for any type of cancer where they have found this to be the case?

Dr. Isaac Powell:

Absolutely. That’s going to be a little while, but that I think should happen, yes.

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How Can Advanced Prostate Cancer Disparities Be Reduced?

How Can Advanced Prostate Cancer Disparities Be Reduced? from Patient Empowerment Network on Vimeo.

What are some ways that advanced prostate cancer disparities can be reduced? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses early detection, recommended screening ages for African Americans versus European Americans, and how some government agencies can aid in reducing disparities.

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Related Resources:

Are There Worldwide Links to Aggressive Prostate Cancer?

Are There Worldwide Links to Aggressive Prostate Cancer?

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Do Prostate Cancer Genetics Differ in African Americans?

Do Prostate Cancer Genetics Differ in African Americans?

Transcript:

Lisa Hatfield:

So, Dr. Powell, in your work, have you come across any innovative approaches or interventions that have shown promise in reducing racial disparities and improving outcomes for patients with advanced prostate cancer?

Dr. Isaac Powell:

Yes. Number one, educating the community about prostate cancer. Early detection is extremely important. I tell them that they should get their PSAs and digital rectal exams. I also tell them again, about obesity and exercise, how important it is to do that because it may prevent prostate cancer. And in terms of advanced disease, to just try to do the best they can and prolong in the survival by participating in clinical trials. And so I do quite a bit of educating in the African American community. In fact, in the ‘90s, we went to 51 churches, African American churches to talk about the prostate cancer and we also did testing. And what we learned in the ‘90s that mistrust factor was a major factor that prevented men from going in to be tested.

We also learned that men really don’t take care of their bodies as they should, and women have played a major role in the healthcare of men. So we start educating women about prostate cancer and encouraging their husbands to come in for examination, and very frequently, the wives have to bring their husbands in for testing or insist that they do that. I have this statement, I have a slide that says, men, they better care of their cars than they do of their bodies. And, in fact, they deny that they have any symptoms, and when they do, they don’t do anything about it until it’s too late.

Lisa Hatfield:

I have one follow-up question to that too, so you mentioned screenings, and I looked up prior to talking with you just to see what the general guidelines are for screenings for men, for prostate cancer, and it seems like they run the gamut. Do you have recommendations, or do you think the recommendations will change guidelines for screening and given your data and your research, is there a difference in screenings between European Americans versus African Americans?

Dr. Isaac Powell:

Yes. Because of what I’ve been talking about the cancer grows faster, and the significant cancers, the ones that are growing faster and become metastasized began in the 40s in African Americans, and so for European Americans has been recommended testing at age 50. I recommend age 40, American Cancer Society recommends age 45. Now, I believe at age 40, and I tell my patients that’s when they should start, African Americans that is, start testing for prostate cancer, specifically the PSA and digital rectal exam, and particularly if they have a family history. Now, the family history, if they only have one or two members is not much different than the aggressiveness among African Americans or European Americans.

If they have five or six members, not just a prostate cancer, but breast cancers as well, that means that they have a strong family history for having prostate cancer. If they have breast cancer, ovarian cancer in their family, or colon cancer, lung cancer, all those cancers are responsible for having a cancer and any specific cancer, if you have prostate cancer, breast cancer, you’re at risk for having colon cancer, for example. So that’s more recently talked about, multiple cancers in the family are even more important than having just prostate cancer in your family.

Lisa Hatfield:

Dr. Powell, given your expertise, what policy changes or healthcare system reforms do you believe are necessary to tackle the racial disparities in advanced prostate cancer care on a broader scale?

Dr. Isaac Powell:

Yes, policies are made by the government essentially. And so you have to encourage CDC, Centers Disease Control, US Preventive Services, which has done a disservice and prostate cancer. In fact, in 2012 they had that PSA did not show any evidence of preventing death from prostate cancer. They rescinded that 2017 recognizing that their recommendation 2012 was incorrect, and so US Preventive Services and the CDC, as well as the National Institute of Health NIH, have to come together and say, this disease is not only prostate but breast cancer, triple-negative breast cancer, colon cancer, lung cancer, all of these are more aggressive among African Americans, and we have to make a statement that screening has to be done earlier, education has to be emphasized.

And, in fact, COVID testing, it was almost mandatory on the circumstances that that happened. We used to demand that syphilis tests be tested if you got married. The government can also make it mandatory to be tested if your age, 45, American 50 for prostate cancer and maybe other cancers as well. So the government has to play a major role in establishing policies for testing, and I think that that would be very helpful in eliminating the disparity. 

Lisa Hatifield:

And then from the patient perspective, it sounds like, and just trying to clarify this to when you talk about screenings for a patient to get screened to the appropriate time, that includes both the PSA test and the digital rectal exam, is that correct?

Dr. Isaac Powell: 

Absolutely.

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How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Advanced Prostate Cancer Care Barriers Be Overcome? from Patient Empowerment Network on Vimeo.

How can barriers to advanced prostate cancer care be overcome? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses medical mistrust in the African American community and advice he gives to patients about prostate cancer screening and prevention.

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Related Resources:

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

How Can Advanced Prostate Cancer Disparities Be Reduced?

Are There Worldwide Links to Aggressive Prostate Cancer?

Are There Worldwide Links to Aggressive Prostate Cancer?

Transcript:

Lisa Hatfield:

Are there any challenges unique to minority communities that hinder access to advanced prostate cancer treatments and therapies? And do you have thoughts on how these barriers can be effectively addressed?

Dr. Isaac Powell:

I do. First of all, the diagnosis has to be made. And so that’s made by screening, by the PSA testing and digital rectal exams. Now, some people are talking about, well, we don’t need to do the digital rectal exam. That absolutely is not true. You can have a very aggressive cancer and have a normal PSA. We know that the PSA is not 100 percent accurate in diagnosing, predicting that you may have prostate cancer sometimes.

And I’ve had several patients who had normal PSAs, abnormal rectal exams, and as a result, I’m biased with them. If you don’t do the rectal exam and you have a normal PSA, you may miss aggressive cancers. So definitely have your usual rectal exam, excuse me. And once after that, if you have a biopsy, and if it is positive, then again I think that aggressive therapy is the way to go, if you’re in good shape.

Now, people are afraid of cancer. I mean, afraid of surgery. I’ve had surgery, so I can talk to them about what I’ve had and what you go through. Men are also concerned about losing their sexual function and those kinds of things related to the treatment of prostate cancer. And I can tell them that the quality of life is okay after that because we have ways of treating sexual dysfunction, the pill that everybody knows about, as well as injection and penis and ultimately the penile prosthesis. So that can be fixed.

And the other issue of losing control of the urine, that can be fixed as well. And so those are the things I tell people about not specifically among African Americans. There’s the genetic and the biology that I have to discuss, but one of the things that drives these genetic cells is obesity.

Obesity can produce these pro-inflammatory cytokines. So I always advise them to, if they are obese, to reduce their weight and their fat, particularly belly fat. That’s challenging because people have difficulty losing weight. The other thing is exercise. Exercise is a key that I think it is the most important factor in treating many health conditions, exercise. And what exercise does, and this has been studied in breast cancer, it decreases the expression of the genes that I described earlier. In terms of prior driving the cancer and breast cancer, they’ve found it decreases the pro-inflammatory cytokines. I described the tumor necrosis factors IL-6 and IL-8. So that’s important, exercise. So those are the things that I tell patients. And now in terms of advanced disease there are clinical trials that are there.

And we do these trials to decide what’s the best treatment for cancer, even though we don’t have “a cure.” Now, the problem among African Americans is that they don’t trust these clinical trials because of the abuse that African Americans have suffered through slavery and all the other kinds of things when they’ve been treated as less than human, like animals being operated on without having any anesthesia and many other abuses that have occurred. And so there’s this major distrust now that’s very difficult to eliminate in the Black community, especially if there are very few African American doctors to take care of them. So what I think that we have to fix that question of distrust, and that’s going to take a while, but I talk to them always about this mistrust issue, because I can’t see everybody, although we do need more African American doctors and nurses to take care of them and to encourage them to participate in clinical trials and to be seen as a person who is going to be taking care of them in clinical trials, that’s very important.

Often we talk about access to care, but particularly African Americans that mostly live in large cities where there is access to care. But, in terms of one particular example that’s brought up on occasion is what has occurred in Baltimore and other big cities where I talk to an African American, you know Johns Hopkins is right in the middle of the African American community. So it’s not about access again, it’s about mistrust. And I said, “Well, why don’t African Americans go to Johns Hopkins?” Well, she says, “If you walk past Johns Hopkins, they may steal your bodies.” I said, what? I didn’t believe that, but I’ve been reading literature, particularly one called the Medical Apartheid where they talked about African slavery, where they dug up the bodies of slaves to practice the anatomy.

And so that’s where this idea occurred. At night, they would dig up the bodies and do this, and not only in Baltimore, but other cities as well. So again, the mistrust issue is very difficult to resolve because of those issues. And people talk about that, well, I just don’t trust the white healthcare system, period. And don’t want to go until they’re having symptoms, and then they have no choice. They have to go. And by this time, the cancers are more advanced and cannot even prolong life expectancy in those particular patients. So I’m not sure I answered your question in terms of what a person or what I would do to activate participation in the healthcare of advanced disease.

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Do Prostate Cancer Genetics Differ in African Americans?

Do Prostate Cancer Genetics Differ in African Americans? from Patient Empowerment Network on Vimeo.

Do the genetics of prostate cancer vary in African Americans? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses what research has shown about gene expression and what occurs in the body in African Americans versus European Americans.

[ACT]IVATION TIP

“…patients need to take charge by asking questions about the therapy. Again, ‘is it going to cure me, and is the chemotherapy going to cure, immunotherapy going to cure? If not, how long do we think that I will live?’ That’s a good question, that I’d like to know if I were a patient.”

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Related Resources:

How Can Advanced Prostate Cancer Disparities Be Reduced?

How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome?

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Transcript:

Lisa Hatfield:

So, Dr. Powell, I just read a bit about your really impressive research, particularly with regard to the biology and genetics of prostate cancer. Can you provide an overview of your research focus on how prostate cancer impacts African Americans in comparison to other ethnic groups?

Dr. Isaac Powell:

Yes, I would certainly love to do that. In 2010, we found that the cancer grows faster among African Americans compared to European Americans. And those are the terms we use now, as opposed to Black and white. In science, we use those terms. And so at that point, I thought that this may be driven by the genetics and biology. So in 2013, we used what now has been considered the artificial intelligence.

We use bioinformatics, which is computational biology, and gene interactive and network analysis to evaluate the cancer tissue. And so at that point, we identified, and we asked the question, are there genetic differences between African Americans and European Americans? And what they found were driver genes, driver genes being the genes that drive the cancer, that make the cancers carry out a function, a mechanistic function, as opposed to passenger genes that are just associated with the cancer, just as in a car, the driver is the one that controls the car, the passenger sits there. These passenger genes, yes, they’re associated with aggressive cancer, but they have minimal or no function. The driver genes are the ones that are controlling the cancer, the function mechanism of the cancer progression. And so we identified in our analysis 21 genes that were different between African Americans compared to European Americans, different in terms of the expression of the disease, not different genes, but different expression of the genes.

What we found is that African Americans have a greater expression of inflammatory genes and transcript genes. And I’ll be more specific about that in a moment. Whereas European Americans had a higher expression of lipid metabolism genes. Those are genes that are associated with fatty acids as well as unsaturated fatty acids, specifically omega-6 as opposed to omega-3. But there is a connection between these two gene interactions at one particular molecule called tumor necrosis factor. And this gene then interacts with both the lipid metabolism genes as well as other inflammatory cytokines. And the genes that we found that were more specific in among the inflammatory genes were the pro-inflammatory cytokines, and those were IL-6 tumor necrosis factor, IL-8, and IL-1B as well as CXCR4.

These are what are called pro-inflammatory cytokines and chemokines. And they carry out functions that cause the cancers to invade. First of all, the cancer initial is cancer cells are stuck together. We call them adherent. They have to come apart before they can spread and go elsewhere. Well, these genes cause that it’s called epithelial mesenchymal transition. And once that happens, they’re capable of being transferred to distant sites such as the bone. And they also cause increased blood flow to the cancer. They also cause the oxidative stress that is driven by a molecule called reactive oxygen species.

And we’ll come back to that particular molecule because that’s important. Once it causes the oxidative stress, this causes DNA damaged repair genes to develop as well as mismatch genes. This mismatch means there are gene molecules that are stuck together, and there is an order. This order is upset by this particular oxidative stress, and those are mutated once they are repaired, and they impact on the mitochondria, which is a molecule in the cell nucleus that controls the chemistry of the cell.

And then this activates cancer stem cells, which is really important. And this is where we are going now with the cancer research. So TNF, the tumor necrosis factor IL-6 and IL-8, and the IL means interleukins. That’s what that stands for. They activate that pathway, the oxidative stress pathway. They also individually activate other pathways that lead to cancer stem cells. And I mentioned cancer stem cells because that’s the reason why chemotherapy and immunotherapy and all the drugs that we’ve used don’t work because the cancer stem cells undergo mutations and these mutations change the character of the cell. 

And that’s why the cancer cells resist that after a certain period of time, now these drugs will work and prolong survival, but they do not cure them because of the cancer stem cells. And so the cancer stem cells, in summary, are driven initially by the pro-inflammatory cytokines. So my research currently is to, well, how do we inhibit these pro-inflammatory cytokines? And that’s where we are now trying to develop a drug. We’re at the stage of mouse at this time, mouse biology and testing the drug in mice, not ready yet for human testing. So that’s where my research is headed, and I believe that that is going to work if the drug works.

Lisa Hatfield:

So just a follow-up question to that is, as a if I were a patient of yours or a family member, I might ask, so with your findings, do you think that this could lead to a cure, for example, for advanced prostate cancer?

Dr. Isaac Powell:

Yeah. I hate to use the word cure. The word I use is that we, our goal is to eliminate death from prostate cancer. That’s the term I prefer, because when we talk about cure, we have to know what causes it in order to really be certain as we are curing it. Because I don’t know whether what we’re doing is going to eliminate death, but that’s our goal. So I don’t like to use the word cure, because that’s the magic word and everybody gets excited. So I don’t want to get people excited too soon. So that’s where I am with my research.

Lisa Hatfield:

Well thank you so much for that. And do you have an activation tip for patients for this question, Dr. Powell?

Dr. Isaac Powell:

Yes. I think that, again, patients need to take charge by asking questions about the therapy. Again, is it going to cure me, and is the chemotherapy going to cure, immunotherapy going to cure? If not, how long do we think that I will live? That’s a good question, that I’d like to know if I were a patient. In fact, I’ve had prostate cancer and bladder cancer, so mine was early, so we didn’t get into those kinds of questions. But I like to know whether is this going to be something soon or later? Nobody can tell you when you may pass away from any cancer. I never give a patient any time. If they ask me, “Well, am I going to live six months or three years?” I don’t know. Because everybody’s different. Everybody responds differently to these particular treatments. So, but ask the questions as specific as possible that you’d like to know about the treatments, because there are several treatments, and there may be many answers.

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

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

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

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Related Resources:

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

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

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

Transcript:

Lisa Hatfield:

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

Dr. Yaw Nyame:

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

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

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

INSIST! Prostate Cancer Resource Guide

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Tools for Accessing Personalized Advanced Prostate Cancer Treatment and Care

Tools for Accessing Personalized Advanced Prostate Cancer Treatment and Care from Patient Empowerment Network on Vimeo.

What steps can advanced prostate cancer patients take to help them access the most personalized treatment approach for their disease? This animated video reviews key treatment decision factors, how biomarker testing results affect care, and advice for self-advocacy. 

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What Questions Should Prostate Cancer Patients Ask About Testing and Test Results? 

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Essential Testing Following a Prostate Cancer Diagnosis 


Transcript:

Every advanced prostate cancer patient is unique AND so is their disease. Advances in research are making personalized medicine a reality, tailoring care and therapy choices based on the genetic makeup and individual characteristics of a patient’s disease.   

As prostate cancer research evolves and treatment options expand, it’s vital that patients work with their healthcare team to find the best treatment approach to treat their specific cancer.  

An essential step to accessing personalized medicine is biomarker testing, which identifies key markers such as genes, proteins, or other molecules in a sample of tissue, blood, or other bodily fluid. The results of these tests can provide a fuller picture of the prostate cancer’s type, stage, and aggressiveness and may help predict how the cancer will behave. 

The test results can also identify which treatment approach may be most effective, through the presence of certain molecular markers.  For example, if a tumor has either high microsatellite instability (MSI high) or mismatch repair defects (dMMR), a prostate cancer patient may benefit from immunotherapy. Or a PARP inhibitor therapy may be more effective if the presence of mutations in certain DNA damage repair genes is detected. 

In addition to biomarker test results, other factors that physicians consider when recommending a treatment approach include:  

  • A patient’s age, overall health, and any pre-existing conditions. 
  • The type, stage, and grade of prostate cancer. 
  • And, potential side effects or impact on their lifestyle. 
  • And, the patient’s preference. 

Along with these considerations, it’s vital that patients discuss the benefits and drawbacks of each option with their team. So, how can you be proactive in order to access personalized care? 

  • Ensure that your doctor has experience treating prostate cancer. Consider consulting a specialist or obtaining a second opinion, so you can feel confident in your diagnosis and treatment plan. 
  • Ask a friend or loved to join you during key discussions with your provider, to help you process the information and to make decisions. 
  • And, be sure to request all essential testing, including biomarker testing, and ask how the results may affect your prognosis and treatment options.  
  • Discuss ALL of the treatments available to you, including any potential side effects.  
  • And ask if there is a clinical trial that could be right for you.
  • Finally, and most importantly, YOU should be at the center of your prostate cancer care. Share your opinions and ask questions throughout the process, so you feel empowered and informed. 

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

Understanding Recommended PSA Screening Age and Frequency In Prostate Cancer

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

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

See More from [ACT]IVATED Prostate Cancer

Related Resources:

How Can Prostate Cancer Stigmas and Misconceptions Be Addressed

How Can Prostate Cancer Stigmas and Misconceptions Be Addressed?

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments

What Impact Does Advanced Prostate Cancer Have on Lifestyle

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Transcript:

Lisa Hatfield:

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

Dr. Yaw Nyame:

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

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

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

[ACT]IVATED Prostate Cancer Post-Program Survey

How Can Prostate Cancer Stigmas and Misconceptions Be Addressed?

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

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

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Understanding Recommended PSA Screening Age and Frequency In Prostate Cancer

Understanding Recommended PSA Screening Age and Frequency In Prostate Cancer 

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments

What Impact Does Advanced Prostate Cancer Have on Lifestyle

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Transcript:

Lisa Hatfield:

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

Dr. Yaw Nyame:

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

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

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

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

[ACT]IVATED Prostate Cancer Post-Program Survey