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La Historia de Jamal: Una Búsqueda de Claridad en la Cara del Cáncer de Próstata Avanzado

La Historia de Jamal: Una Búsqueda de Claridad en la Cara del Cáncer de Próstata Avanzado from Patient Empowerment Network on Vimeo.

El diagnóstico de Jamal, un paciente con cáncer de próstata avanzado, fue un shock a sus 50 años. Vea cómo comparte su experiencia desde el diagnóstico, una segunda opinión y el tratamiento, y sus consejos clave para mantenerse en la senda del empoderamiento del paciente. 

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Related Resources:

What Impact Does Advanced Prostate Cancer Have on Lifestyle

Advanced Prostate Cancer Diagnosis and Survival _ Black and Latinx Disparities

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments 

Transcript:

Mi nombre es Jamal y me diagnosticaron un cáncer de próstata avanzado a los 50 años. Soy negro y el diagnóstico de cáncer de próstata me sorprendió. Lo único inusual que había experimentado era un chorro de orina ligeramente más débil, que en aquel momento descarté como nada.

Aunque me someto a revisiones médicas anuales, descubrieron mi elevado nivel de PSA durante unas pruebas gratuitas de detección del cáncer de próstata en mi iglesia. Me remitieron a un oncólogo que me hizo una biopsia y un TAC para ayudarme en el diagnóstico y el tratamiento. Tras recibir los resultados, me informaron de mi diagnóstico de cáncer de próstata avanzado y me quedé bastante sorprendido. Mi oncólogo me recomendó terapia hormonal y cirugía para extirparme la próstata. Como a mucha gente, me preocupaba la idea de operarme. Decidí pedir una segunda opinión a otro oncólogo.

Me gustó mucho la segunda oncóloga en cuanto la conocí. Sentí que me escuchaba de verdad y que atendía mis preocupaciones sobre la cirugía. Después de ver los resultados de mis pruebas, me recomendó una terapia hormonal que podría necesitar un seguimiento con una nueva terapia hormonal para tratar mi cáncer de próstata avanzado. Me sentí aliviado y esperanzado sobre mi plan de tratamiento.

Aunque experimenté algunos efectos secundarios de fatiga y pérdida de libido, mi terapia hormonal fue eficaz. Mi esposa también fue una compañera de cuidados increíble durante este tiempo. Mi tratamiento inicial fue suficiente para eliminar el cáncer, y sigo haciéndome exploraciones cada seis meses para asegurarme de que sigo estando libre de cáncer. Me encuentro bien y disfruto de una vida plena con mi esposa, mis hijos y mis nietos. También me gusta el senderismo, el tenis y viajar.  Estoy muy agradecido a mi familia y amigos por su apoyo, y me complace compartir mi historia sobre el cáncer para ayudar a otras personas que acaban de ser diagnosticadas. El cáncer da miedo, pero tu viaje puede ser más llevadero con la ayuda de una excelente atención oncológica y el apoyo de los que te quieren.

Algunas de las cosas que he aprendido en mi viaje a través del cáncer de próstata avanzado son:

  • Obtenga una segunda opinión si cree que la necesita. Una segunda opinión no es algo de lo que debas sentirte culpable en tu búsqueda del mejor tratamiento avanzado para el cáncer de próstata.
  • Busque atención o una consulta en un centro oncológico académico si es posible. Estas instituciones están mejor equipadas para mantenerse al día sobre las últimas opciones de tratamiento avanzado del cáncer de próstata.
  • Pregunte por las opciones de ensayos clínicos. Puede haber programas que le ayuden con los gastos de viaje, alojamiento y otros gastos no cubiertos.
  • Si crees que puedes ayudar a los demás, únete a un grupo de apoyo para compartir tu historia. Compartiendo mi historia he sido una bendición para poder ayudar a otros que quizá sufran en silencio.

​​Estas acciones para mí fueron clave para seguir en mi camino hacia el empoderamiento.

Jamal’s Story: A Quest for Clarity in the Face of Advanced Prostate Cancer

Jamal’s Story: A Quest for Clarity in the Face of Advanced Prostate Cancer from Patient Empowerment Network on Vimeo.

Advanced prostate cancer patient Jamal’s diagnosis came as a shock in his mid-50s. Watch as he shares his experience from diagnosis, a second opinion, and treatment and his key advice for staying on the path of patient empowerment.

Disclaimer: This cancer patient story has been edited to protect the privacy of certain individuals, and the names and identifying details have been changed.

See More From [ACT]IVATED Prostate Cancer

Related Resources:

What Impact Does Advanced Prostate Cancer Have on Lifestyle

Advanced Prostate Cancer Diagnosis and Survival _ Black and Latinx Disparities

Emerging Promising Advanced Prostate Cancer Treatments

Emerging Promising Advanced Prostate Cancer Treatments 

Transcript:

My name is Jamal, and I was diagnosed in my mid-50s with advanced prostate cancer. I’m a Black man, and my prostate cancer diagnosis came as a surprise. The only unusual thing I had experienced was a slightly weaker urinary stream, which I dismissed as nothing at the time.

Even though I go for annual medical checkups, my high PSA level was discovered during free prostate cancer screenings at my church. I was referred to an oncologist who ordered a biopsy and CAT scan to aid in my diagnosis and treatment. After receiving my results, I was informed of my advanced prostate cancer diagnosis and was pretty shocked. My oncologist recommended hormone therapy and surgery to remove my prostate. Like many people, I was worried about the idea of having surgery. I decided to get a second opinion from another oncologist.

I really liked the second oncologist as soon as I met her. I really felt like she was truly listening to me and to my concerns about surgery. After looking at my test results, she recommended hormone therapy that might need follow-up with a novel hormonal therapy to treat my advanced prostate cancer. I felt both relief and hopeful about my treatment plan.

Even though I experienced some side effects of fatigue and loss of libido, my hormonal therapy was effective. My wife was also an amazing  care partner during this time. My initial treatment was enough to take care of the cancer, and I continue to get scans every six months to ensure that I remain cancer-free. I’m feeling well and enjoy a full life with my wife, kids, and grandkids. I also enjoy hiking, tennis, and traveling.  I’m so grateful to my family and friends for their support, and I’m happy to share my cancer story to help others who are newly diagnosed. Cancer is scary, but your journey can be eased with the help of excellent oncology care and support from those who love you.

Some of the things I’ve learned on my advanced prostate cancer journey include:

  • Empower yourself by getting a second opinion if you feel like you want one. A second opinion is nothing to feel guilty about in your journey to seek your best advanced prostate cancer care.
  • Seek care or a consultation at an academic cancer center if possible. These institutions are better equipped to stay abreast about the latest advanced prostate cancer treatment options.
  • Ask about clinical trial options. There may be programs that will help you with travel, lodging, and other uncovered expenses.
  • If you feel like you can help others, join a support group to share your story. Sharing my story has been a blessing in disguise so that I can help others who may be suffering in silence.

​​These actions for me were key to staying on my path to empowerment.

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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.

See More from [ACT]IVATED Prostate Cancer

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.

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“…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.”

See More from [ACT]IVATED Prostate Cancer

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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How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome? from Patient Empowerment Network on Vimeo.

 How can research bridge the gap in prostate cancer outcomes among different demographics?  Dr. Ronald Chen from University of Kansas Medical Center speaks to the work he and his colleagues are conducting around prostate cancer disparities and the different outcomes for different populations of patients who have the same diagnosis.

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“My activation tip for this question is, my team’s research on how patients make decisions and the barriers has really led to a lot of insights that now allows us to implement programs to help tackle these barriers. And so I would advocate for any cancer patient to be willing to volunteer for a research study if one presents itself as an opportunity. It’s only through patients sharing their time and knowledge with researchers can we really learn about these critical issues, and then the participation will help future patients.”

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Are There Worldwide Links to Aggressive Prostate Cancer?

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How Can Advanced Prostate Cancer Care Barriers Be Overcome?

Transcript:

Lisa Hatfield:

Dr. Chen, are there any ongoing or upcoming projects in your research group that aim to bridge the gap in prostate cancer outcomes between different demographic groups?

Dr. Ronald Chen:

Yes. One of my areas of research focus is prostate cancer disparities and the different outcomes, different groups of patients have with the same diagnosis. We know from a lot of research from my group and other groups, is that in prostate cancer, there are large disparities.

One example is that Black patients with prostate cancer have twice the mortality rate as white patients with prostate cancer. That’s been known for quite some time. But what causes some patients to die twice as much as others is not as much known. And I’ve done a lot of research to look at this area. Part of this mortality disparity relates to the understanding that some patients for some reason choose less aggressive treatment than others. So if you have an aggressive prostate cancer, but you’re choosing less aggressive treatment than others, then that may explain some of the higher rates of death.

And so what my group has done is to try to figure out why some patients choose less aggressive treatment and what that decision-making process looks like. I’ve had a large project where I have been following about 1,500 men with prostate cancer, it was a…what’s called an observational study where we enroll these 1,500 patients at the time of diagnosis. So as soon as they were diagnosed, we enrolled them and what we asked them is, “Hey, do you mind if we just follow you along with your course through treatment, through your survivorship course? We want to follow and just learn what you decide to do and why you decided to do it, and what your outcomes are.”

And for these 1,500 men, we have now followed them for about 10 years, really going through the journey with them and trying to learn as much as we can. And part of this study was when these men were making decisions about treatment, we were able to ask them a series of questions to really try to tease out, “Why did you choose this versus that? How did you make your treatment process?” And this was a very unique study because actually, there are very few studies that have went through the process of decision-making with men and trying to tease out what’s important to them.

What we learned from this research, from this study, from these men who volunteered their time with us, is that some patients who had pretty aggressive prostate cancer told us that their cancer was not aggressive. So we know by following these patients, we know from their medical records what their diagnosis was, and we knew how aggressive the cancer was. But when we asked these men to tell us what their perception was with their diagnosis, a portion of these men who had aggressive cancer told us that their cancer wasn’t that aggressive.

And we found that people who thought that their cancer was not aggressive, those were the patients who ultimately chose less aggressive treatment, because they didn’t think it was that important, it wasn’t that aggressive. And so, part of what we learned from this study was that a patient’s understanding of their diagnosis is a really critical factor in making the right decision.

Another piece that we learned from going through this process with these patients was that there was also a portion of the men who have financial concerns when they’re making the decision about treatment. Financial concerns relate to, “Well, I’m concerned that this treatment will impact my ability to work, I’m concerned about the cost of this treatment, I’m concerned about how this treatment will impact my family’s burden having to take care of me.” Those are all financial considerations.

And patients who had these concerns were also more likely to choose treatment that’s not as aggressive. And so we found out through this process, through these men sharing their decisions with us, that an accurate understanding of the diagnosis and some of these financial concerns really drove decisions of treatment for prostate cancer patients.

So now that we understand that, the question is, what is the next step? What can we do to help alleviate this problem? Because I think we can’t take away these concerns, and if patients have the right treatment, that will improve and optimize their outcome as well, and reduce disparities. 

And so part of what we’re doing here at University of Kansas is that we have really increased the availability of financial navigators and social workers for cancer patients. We know that a portion of cancer patients have financial concerns. We know that we don’t do as good of a job identifying patients who have concerns and then finding resources to help them.

Maybe it’s transportation, maybe it’s cost of treatment, maybe it’s the drug cost, and being able to identify these concerns early and finding resources to help would also, if we remove this barrier, then patients will be able to choose treatment that’s right for them without those concerns. And so, that’s one thing that we’re doing, now that we understand that’s an issue, we’re doing that to see if we can tackle and reduce this problem.

So my activation tip for this question is, my team’s research on how patients make decisions and the barriers has really led to a lot of insights that now allows us to implement programs to help tackle these barriers. And so I would advocate for any cancer patient to be willing to volunteer for a research study if one presents itself as an opportunity. It’s only through patients sharing their time and knowledge with researchers can we really learn about these critical issues, and then the participation will help future patients. And so, I would advocate for anybody to volunteer for research study, if that’s something they’re willing to do.

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Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions from Patient Empowerment Network on Vimeo.

Does research in advanced prostate cancer address the disparities in outcomes among different racial and ethnic groups? Dr. Ronald Chen from University of Kansas Medical Center speaks to contributing factors, how far we have come and ongoing efforts.  

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How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome?

Do Prostate Cancer Genetics Differ in African Americans?

Do Prostate Cancer Genetics Differ in African Americans?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

Transcript:

Lisa Hatfield:

How does your research address the disparities in prostate cancer outcomes among different racial and ethnic groups? And also, what are some of the key factors contributing to these disparities?

Dr. Ronald Chen:

I think there’s been a lot of research by my group and others looking at disparities in prostate cancer. And prostate cancer really is a shiny example of disparities. And what I think a lot of researchers has found is that, in prostate cancer there are clear disparities by a patient’s race. 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.

With every cancer, and prostate cancer is no exception, screening is so important. If we’re able to screen and diagnose a cancer as early as possible, that gives us the best chance to cure cancer and for the best outcome for the patient. So access to screening is very, very important. I cannot stress that enough.

Access to clinical trials is also important. Clinical trials are the way for patients to access the latest, most promising treatment available. And we actually know from a lot of research that patients who are on clinical trials do better, live longer than patients who are not on clinical trials, and I think a lot of it’s because of the access to the latest agents. And so, being able to try to tackle this issue of access to screening for early detection and access to clinical trials, I think will be really important for us to tackle and reduce and minimize and eliminate the disparities that we see in prostate cancer.

I think the other really important aspect of disparities is actually also, I think, patient knowledge. Not every patient who has cancer who goes to see a specialist and they’re told the information, I don’t think that as physicians we do a good enough job of explaining a patient’s diagnosis and options to patients. And what we know from research is that a lot of patients leave the consultation not completely understanding what they were just talking about. They may not know how aggressive the cancer is, they may not know exactly what options are available, and I think that’s the communication aspect, whether it’s from the physician side or from the patient’s receiving side, we know that that’s not as good as possible.

And we also know that when a patient does not fully understand their diagnosis, that might lead to wrong decisions about delaying treatment and about wrong decisions in terms of choosing treatments that’s less aggressive than it should be. And so I think being able to work on better communication, better understanding of the critical information that’s transferred during consultation, I think, will be another way to address disparities that we see in prostate cancer.

Lisa Hatfield:

Great. Thank you. And backing up just a little bit, when you were talking about one of the factors being geographical rural area, if you had a patient come in and say, “Hey, I just read about this trial, but I live really far away from an academic center, a center that is running this trial,” do most clinical trials require a patient to live close to that center if they want to access a trial, or can they just check in occasionally? How do those typically work?

Dr. Ronald Chen:

I think that patients who live far away from a major cancer center can still find ways to participate in clinical trials because not all clinical trials require a patient to live close by. I’ll give an example.

I work at the University of Kansas Cancer Center, and we offer a lot of clinical trials. We understand that Kansas is a rural state, and we have a lot of places in Kansas where patients don’t live close to where we are in Kansas City. So what we have done at the University of Kansas Cancer Center, is actually, we have partnered with a lot of the smaller cancer programs around the state, so then we can all offer the same clinical trials. Even though, even trials that we offer at University of Kansas in Kansas City, through our partnership with smaller cancer centers around the state, patients can actually enroll in clinical trials and be treated closer to home on the same trial.

So I think that really increases access. But that’s only possible if a patient has heard about that opportunity and are able to then seek that out. But the network has been set up in our state, and some other cancer centers around the country have similar networks to try to increase that access.

I think the other thing to say is that there are many clinical trials for advanced prostate cancer using chemotherapy and more increasingly, oral pills to treat cancer. And you can absolutely have the opportunity of signing up for a trial, and if that includes a new treatment that’s an oral pill, maybe you only have to go for a visit every few months for a check-up, but you can take that prescription and the pill at home without having to have frequent visits. And I think that also makes a clinical trial participation feasible for a lot of patients.

So I really do think that, I think we’ve made a lot of improvements in clinical trial access over the past few years. I actually think the COVID pandemic has forced us to think about how to do this, and I think we’re doing a better job than we were five years ago. And so, I think even for patients who live in rural areas, clinical trial participation is possible in a lot of situations. 

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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.

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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.

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