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How Can Prostate Cancer Screening Access Be Increased?

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How Can Prostate Cancer Screening Access Be Increased? from Patient Empowerment Network on Vimeo.

How can access to prostate cancer screening be improved? Expert Dr. Ronald Chen from KU Medical Center discusses the importance of prostate cancer screening, methods that experts are using to increase awareness, and patient advice for optimizing health outcomes.

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“…if you’re diagnosed with advanced prostate cancer, always consider if a second opinion is right for you, a second opinion with a specialist who may have access to the latest treatments, technologies and clinical trials, and having that information before you to make a treatment decision can provide you with information, so you can make the best decision and have the best outcome for your cancer.”

Download Prostate Cancer Screening Tips Guide

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Related Resources:

Expert Perspective | Aggressive Prostate Cancer Research and Health Equity

Expert Perspective | Aggressive Prostate Cancer Research and Health Equity

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

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

 Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

Transcript:

Lisa Hatfield:

Are there any innovative approaches or technologies that you and your team are exploring to improve prostate cancer detection, treatment, or support services, especially for communities with limited access to healthcare resources?

Dr. Ronald Chen:

I think that access to screening is so important because screening, to be able to catch a cancer as early as possible allows the highest chance for cure and the best outcome for the patient. So what my team has been doing to try to increase access to screening is two-fold.

One is, we need to increase the awareness that screening is important. And unfortunately, in prostate cancer, there’s actually some controversy about whether prostate cancer screening is good or bad for the patient. There’s been some, I think, unfortunate national guidelines that recommend against screening and a lot of debate about whether screening is good or bad. I think it’s been unfortunate. It actually has led to some physicians and patients to really be doubtful about prostate cancer screening. I think we need to do a lot of education to actually reverse that misperception. And so one aspect is to educate, to make sure people do understand that prostate cancer screening, early detection is important.

So part of what my team is doing, not only really screening, but also all of prostate cancer and actually other cancers as well, is that my cancer center is doing a regular podcast. And so, what my cancer center director, Dr. Roy Jensen, on a weekly basis will interview a cancer expert and have a conversation about some cancer topic. It could be screening, it could be how to live a healthy lifestyle as a cancer patient, it could be about survivorship, it could be about a new technology to diagnose or treat cancer, a topic, a different topic every time recorded as a podcast with experts at my center and other places, and that podcast is freely available to anybody who wants to learn about different topics.

And I think that’s really great because I think knowledge gives patients power to make the right decisions. And so, our podcast, and actually we have some videos as well freely available through Facebook and other media channels, is one way to help us tackle this issue, and increase knowledge.

I think the other aspect of increasing screening is to have more opportunities for screening. And so, what my cancer center has been doing is we actually host three cancer screening events around our state, around Kansas, around Western Missouri, which is close to where we are, and we would just host screening events. It’s prostate cancer, it’s skin cancer, it’s lung cancer, it’s a colorectal cancer. The more we’re able to offer these free community events where people can come and just get cancer screened, the more access we provide and the more early detection we have for patients. I think those are pretty innovative strategies, free education, podcasts, and videos that anybody can access, hosting community events for screening. Sometimes we have it at local churches, sometimes we just have local hospitals to bring this to where people are. I think it’s pretty innovative, I think we make an impact there.

I think another really important thing is telehealth. I think patients from almost anywhere in the country, even if they live in rural areas, can have access to cancer experts and can have access to clinical trials because of telehealth. Telehealth, which is basically a consultation with a cancer specialist, either through phone or through video like Zoom, has really increased the access patients have anywhere to expert opinion, so they can make the right decision for their treatment and potentially have access to clinical trials. I think that’s really made a huge difference for patients as well.

And so, my activation tip for this question is, if you’re diagnosed with advanced prostate cancer, always consider if a second opinion is right for you, a second opinion with a specialist who may have access to the latest treatments, technologies, and clinical trials, and having that information before you to make a treatment decision can provide you with information, so you can make the best decision and have the best outcome for your cancer.

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Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

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Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial from Patient Empowerment Network on Vimeo.

What’s the latest in ongoing advanced prostate cancer clinical trials? Expert Dr. Ronald Chen from KU Medical Center discusses ongoing trials, the INNOVATE trial and NRG-GU008 trial, clinical trial benefits, and patient advice for gaining clinical trial access.

[ACT]IVATION TIP

“…ask if clinical trial is not available at your local cancer center, see if a second opinion through telehealth with a larger cancer center is possible, so that you can learn about clinical trial options and see if that’s something that you want to pursue.”

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Expert Perspective | Aggressive Prostate Cancer Research and Health Equity

Expert Perspective | Aggressive Prostate Cancer Research and Health Equity

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

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

 How Can Prostate Cancer Screening Access Be Increased?

How Can Prostate Cancer Screening Access Be Increased?

Transcript:

Lisa Hatfield:

Dr. Chen, can you talk about any clinical trials that are ongoing for people who are living with advanced prostate cancer? And in particular, any trials that you or your colleagues are doing right now that would be of interest to this audience? And my last part to that question is, if they are not able to access those easily, do you have suggestions for patients to access those clinical trials if they’re working with a local community cancer center?

Dr. Ronald Chen:

I think having access to clinical trials is very important for every cancer patient and especially patients who have advanced cancer. And the reason I think this is really important is because in advanced cancer, we’re not doing as well as we want to in terms of extending survival and potentially even curing some patients. We’re not doing as well as we want to, and there’s a lot of room for improvement. And the only way to improve the outcomes for patients with advanced cancer is through clinical trials. Clinical trials is where patients can access first new promising treatments that are not currently available widely because it’s not yet FDA-approved.

And so, I think access to clinical trials is important and often offers a hope for patients because of a new promising agent that they could access through the trial. So I think that’s really important. And there are actually multiple…there are actually a lot of open clinical trials ongoing around the U.S. for patients with advanced cancer, testing new drugs, testing new ways to deliver treatment. I absolutely believe that there will be a new treatment approved for advanced prostate cancer probably every year for years to come because of all the new trials that are happening because of all the new promising agents that have been developed, being tested right now. So I think that’s really important.

I want to highlight a couple of examples of trials, but again, there’s so many, it’s hard to talk about all of them. But I’ll highlight a couple. There’s one trial sponsored by the National Cancer Institute for patients with no positive prostate cancer, which is when prostate cancer has spread to the lymph nodes, and the trial is called NRG-GU008, we call it the INNOVATE trial; and for patients with no positive prostate cancer, even though the cancer has spread to lymph nodes, this is actually a group of stage IV prostate cancer patients where there actually is still a hope for cure. We could actually still cure some patients with no positive prostate cancer. And the goal of this trial is to improve that cure rate.

So maybe right now, with aggressive treatment for these patients, maybe we can cure 50 percent of these patients in this trial that will incorporate a new drug that seems promising, we’re hoping that maybe improves the cure rate higher, maybe to 70 percent or higher. And so, I think that is a really important trial for patients who have that specific diagnosis.

In terms of for patients who live maybe in an area that…where the local cancer center does not offer clinical trials, I think there’s still opportunity for them to learn about clinical trials and even participate. And what I would advocate for is to ask for a second opinion.

Second opinions in cancer is now actually pretty commonly available because of the arrival of telehealth. Even if you live in maybe a small rural area, you can still request a telehealth consultation from a larger cancer center by telephone, by video, and through that, you can ask about clinical trials that are available. And I think it’s important to pursue that, to learn about the options, to learn if there’s a new treatment that could be available to you before you make a final decision on choosing treatment. So with telehealth, second opinion, learning about options, I think there’s actually opportunities to access clinical trials that way.

So my activation tip for this question is, ask if a clinical trial is not available at your local cancer center, see if a second opinion through telehealth with a larger cancer center is possible, so that you can learn about clinical trial options and see if that’s something that you want to pursue.

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Expert Perspective | Aggressive Prostate Cancer Research and Health Equity

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Expert Perspective | Aggressive Prostate Cancer Research and Health Equity from Patient Empowerment Network on Vimeo.

What does research show about aggressive prostate cancer and health equity? Expert Dr. Ronald Chen from KU Medical Center discusses advanced prostate cancer research findings, the INNOVATE trial, and advanced prostate cancer disparities.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

Advanced Prostate Cancer Clinical Trials | Access and NRG-GU008 Trial

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

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

 How Can Prostate Cancer Screening Access Be Increased?

How Can Prostate Cancer Screening Access Be Increased?

Transcript:

Lisa Hatfield:

Dr. Chen, can you provide an overview of your research focus around improving treatments and cure rates for patients facing an aggressive prostate cancer diagnosis? And also, two parts to this question. What inspired you to focus on the topic of health equity in relation to prostate cancer?

Dr. Ronald Chen:

Well, in terms of thinking about my research on improving treatments for advanced prostate cancer, and I’ll just define that to say, advanced prostate cancer, we usually think of as patients who have prostate cancer that has spread to other parts of the body. And so that’s often very aggressive. And, of course, in that situation, there’s still a lot of room for us to improve treatment so we can extend the survival and also improve the quality of life for these patients as much as we can. So a lot of room for improvement. And really, I think how we get to that improvement is mostly through clinical trials.

There’s a lot of promising new treatments that are more effective in tackling the cancer that also potentially can improve the patient’s quality of life, which is also a very important situation for advanced prostate cancer. And so a lot of my research really focuses on clinical trials to incorporate new treatments or new ways to do treatment for patients with advanced prostate cancer.

I’ll give one example. I lead a national trial that’s sponsored by the National Cancer Institute. It’s called NRG-GU008. We call it the INNOVATE trial. And this trial is specifically for patients who have prostate cancer that has spread to the lymph nodes. And if you have prostate cancer that has spread to the lymph nodes, that’s technically stage IV. And we, again, don’t do as well as we want to for these patients. And what this trial is testing is standard of care which would involve radiation and hormone therapy compared to standard of care, radiation/hormone therapy, plus a new drug that seems to hold promise for prostate cancer.

And, of course, we’re testing to see whether adding this new drug would reduce further spread of the cancer, improve survival, and how it impacts quality of life. And so, that’s a very important effort for no positive prostate cancer patients. And we are trying to enroll almost 600 patients, and so far we’re about 200 patients into it. So it’s an ongoing trial. It’s open across the country. And I really do hope that at the end of this trial, we’ll be able to offer a new option for these patients.

I’m involved in other trials around the country that are testing other treatments for advanced prostate cancer. And a lot of my focus on these other trials is also to sort of assess the impact of these treatments on the patient’s quality of life. I think quality of life is really important. We don’t just want to focus on being more aggressive and more aggressive and more aggressive without accounting for how the aggressive treatment really impacts a patient, how their quality of life is and side effects. And so that’s also another really important focus of my research and clinical trials.

In terms of my focus on health equity, health equity is a really important topic because even though we have pretty good treatment for prostate cancer, we know that not all patients have the same access to treatment, and not all patients have the same outcome with advanced prostate cancer. And so, studying why there is a disparity where some patient groups don’t do as well. We know for a fact that based on multiple studies, that Black patients with prostate cancer are more likely to die from prostate cancer twice as much as white patients with prostate cancer.

So we want to understand why, and once we understand why, we want to design interventions to reduce that gap, so then all patients have the same access and have good outcomes with this disease. And so I think that relates to access to screening. So we can diagnose cancer as early as we can. It relates to access to clinical trials, and that’s another really important aspect of my research focus.

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[ACT]IVATED Prostate Cancer Screening Tips

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Advanced Prostate Cancer Treatments on the Horizon

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Advanced Prostate Cancer Treatments on the Horizon from Patient Empowerment Network on Vimeo.

 What advanced prostate cancer treatments are on the horizon? Expert Dr. Ronald Chen discusses emerging treatments that are under study, the advantages that the treatments might offer, and how patients can potentially gain access to the therapies.

Download Resource Guide

See More from START HERE Prostate Cancer

Related Resources:

How Is Advanced Prostate Cancer Explained to Newly Diagnosed Patients?

How Is Advanced Prostate Cancer Explained to Newly Diagnosed Patients?

 How Can Prostate Cancer Collaborative Care Be Coordinated?

How Can Prostate Cancer Collaborative Care Be Coordinated?

START HERE | Collaborative Prostate Cancer Care Resource Guide 

Transcript:

Lisa Hatfield:

Are there any promising treatments on the horizon that you are particularly excited about for advanced prostate cancer? And what types of questions do you recommend patients and their care partners ask of their providers?

Dr. Ronald Chen:

I want to answer this question from the perspective of a…as a radiation oncologist. I am often involved in a lot of research and clinical trials related to how we can potentially better use the tool of radiation for patients with prostate cancer and advanced prostate cancer. And there’s actually quite a bit of exciting development in radiation that I think I’m really looking forward to seeing the results of those types of research. One area of, I think, promising treatment is something called radiopharmaceutical therapy.

So oftentimes, we think of radiation as a patient…there’s a machine that delivers a targeted beam of radiation to a particular tumor. And that’s what we usually think about. But actually, there’s a new wave of radiation and how we deliver it called radiopharmaceuticals. And radiopharmaceuticals is almost like getting chemotherapy. It’s something that’s infused into the bloodstream, almost like chemotherapy, but the way this treatment work called radiopharmaceuticals is that you’re actually infusing molecules that will actually tag on to tumor cells in the body, and then as it tags onto tumor cells in the body, deliver radiation to that tumor cell.

And they’re actually…so actually, it’s kind of like chemotherapy delivering actually radiation instead of a drug. And there are actually already are several of these radiopharmaceutical agents that have been proven to be effective. And two of these have already been FDA approved that are now in use for prostate cancer. And we know they work and they extend survival. And so, I think that’s very exciting.

And one of them is called lutetium Lu 177 vipivotide tetraxetan (Pluvicto). You’re infusing a molecule that specifically tags on to prostate cancer cells in the body and delivers a little bit of radiation to that cell. And that extends survival for patients. It’s actually a very well-tolerated treatment as well as actually now commonly in use FDA-approved. And I think that now that we have a couple of these FDA-approved, they were proven to work, I really do think that this field of radiopharmaceutical treatment will continue to expand. There’ll be more and more of these in the future. There’s more in clinical trials, and I think there’ll be more and more available options in the future. And I think it’s really going to be a great way to potentially use radiation to help patients with advanced prostate cancer and other cancers in the future.

Another thing that I’m really excited about is, again, I think the balance between extending a patient’s life expectancy and balancing the quality of life impact. We know that for patients with advanced prostate cancer, a common way to treat this disease is with hormone therapy. And oftentimes, people are on hormone therapy for years and years and maybe lifelong. And we also know that hormone therapy in patients with prostate cancer can also have really quite a bit of side effects. It can make people fatigued, weight gain, it may have cardiovascular disease impact. And so hormone therapy, even though it’s effective for prostate cancer, really has a big quality of life impact on patients.

So one of the current years of research and in clinical trials is, can we, instead of having patients with metastatic prostate cancer, instead of having them on hormone therapy for life, could we potentially use radiation selectively in the spots of metastasis? And if we’re able to use radiation to treat particular spots of metastasis and that’s controlled, can we let the patient then have a break from hormone therapy, which I think would really have an important quality of life improvement.

And so selectively using radiation to treat a few spots, allowing patients a break from hormone therapy is another area of research. There’s actually a couple of clinical trials already done on this. And what it’s shown so far is that if patients have one to three to five, a few spots of metastasis, using radiation can actually give patients a break from hormone therapy for two, three or four years for many patients. And that can really have a major impact on improving quality of life without compromising their survival outcomes. So I think I’m really excited about those kinds of areas of research.

One more treatment option like radiopharmaceuticals, two treatments that not compromise the patient’s survival, but improve quality of life. I’m excited about those directions. Oftentimes, the new developments and new treatments, the promising treatments are first available through clinical trials, and only through participating in clinical trials do you have access to that before it becomes FDA-approved. And oftentimes, that could be a really good option to consider. So that’s why I think it’s really important to ask that for every patient.

How Can Prostate Cancer Collaborative Care Be Coordinated?

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How Can Prostate Cancer Collaborative Care Be Coordinated? from Patient Empowerment Network on Vimeo.

How can collaborative care of prostate cancer patients be coordinated? Expert Dr. Ronald Chen discusses typical members of a prostate cancer multidisciplinary team, potential treatment goals, and treatment logistics that are commonly coordinated.

Download Resource Guide

See More from START HERE Prostate Cancer

Related Resources:

How Is Advanced Prostate Cancer Explained to Newly Diagnosed Patients?

How Is Advanced Prostate Cancer Explained to Newly Diagnosed Patients?

 Advanced Prostate Cancer Treatments on the Horizon

Advanced Prostate Cancer Treatments on the Horizon

START HERE | Collaborative Prostate Cancer Care Resource Guide 

Transcript:

Lisa Hatfield:

Dr. Chen, how do you collaborate with a patient’s medical oncologist or primary care doctor when coordinating treatment options, especially if you have a patient coming in and is being seen by a community center or coming in from a rural area?

Dr. Ronald Chen:

I think cancer care is almost always multidisciplinary. And for a patient to have the best treatment and the best outcome available, and the outcome could be survival, their outcome could be quality of life, for the patient to have the best outcome, having the expertise of multiple different types of oncologists is really, really important. 

And that includes a medical oncologist, that includes a radiation oncologist, and also often includes a surgeon, and for prostate cancer, that surgeon’s usually a urologist. And so having a team work together so then each specialist can offer their best treatment available and working together will result in the best outcome for each patient. As a radiation oncologist, I work very closely with my medical oncology colleagues in the care of patients.

Patients with advanced prostate cancer often need radiation to the prostate, radiation to areas of metastasis, radiation to the bone if there’s metastasis to prevent a fracture. So oftentimes, patients will need radiation treatment throughout the course of their treatment. And it’s really important to coordinate between medical oncology and radiation oncology in terms of the sequence of treatment. Does hormone therapy go first? Does radiation go first? Does chemotherapy go first? Does radiopharmaceutical treatment go next?

So being able to work together with a specialist team to coordinate treatment, I think, is really important. And even for patients who live in areas where there may be less resources or less availability of specialists, I think this is still really important. Radiation treatment has evolved a lot in the last 10, 20 years.

And oftentimes, radiation treatment for, let’s say, metastatic disease, it could be as few as one treatment. And so, for patients to be able to hear about that option, hear about potentially as few as one radiation treatment, how that could potentially really impact and help a patient is important, even for patients who live in rural communities, and maybe you have to drive half an hour, an hour, maybe a couple of hours, oftentimes one treatment will still be feasible, especially if it’s an important part of the patient’s care. And so coordination among the specialists is important, and having access to treatment, radiation, I think is also very important to make sure the patient does the best that they can.

How Is Advanced Prostate Cancer Explained to Newly Diagnosed Patients?

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How Is Advanced Prostate Cancer Explained to Newly Diagnosed Patients? from Patient Empowerment Network on Vimeo.

How can advanced prostate cancer be explained to newly diagnosed patients and loved ones? Expert Dr. Yaw Nyame with the University of Washington shares key information that he explains at diagnosis and proactive advice for care partners.

Download Resource Guide

See More from START HERE Prostate Cancer

Related Resources:

How Can Prostate Cancer Collaborative Care Be Coordinated?

How Can Prostate Cancer Collaborative Care Be Coordinated?

 Advanced Prostate Cancer Treatments on the Horizon

Advanced Prostate Cancer Treatments on the Horizon

START HERE | Collaborative Prostate Cancer Care Resource Guide 

Transcript:

Lisa Hatfield:

Dr. Nyame, how do you explain advanced prostate cancer to your newly diagnosed patients and care partners?

Dr. Yaw Nyame:

A new cancer diagnosis, obviously, is always a big stressor for patients, and one of the things that I start with is, where is your cancer? And so when we talk about localized cancer, I always try to give the information for patients to understand that is a cancer that we think are solely in the prostate alone, and I think an advanced cancer is going to be anything that’s outside of the prostate, whether that’s in lymph nodes, close to the prostate in the bone or other organs further away from the prostate.

And I think the important thing that I try to really clarify when we’re talking about an advanced cancer diagnosis is that those are the cancers that are hard to cure, but we do have a lot of fantastic options for extending life and for preserving quality of life, and those really become the focus when we talk about most advanced cancers.  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.

START HERE | Collaborative Prostate Cancer Care Resource Guide

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_START HERE Collaborative Prostate Cancer Care Resource Guide

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[ACT]IVATED Prostate Cancer Specialist Treatment Centers (North America)

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

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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. 

See More From [ACT]IVATED Prostate Cancer

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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

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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.

[ACT]IVATED Prostate Cancer Patient Plan

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[ACT]IVATED Prostate Cancer Toolkit Checklist

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Staying Proactive While Facing a Prostate Cancer Diagnosis

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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?

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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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