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

February 8, 2024/in PC Activated, PC Activated Vignette, PC Newly Diagnosed, PC Programs, PC Resources ND, PC Resources TC, PC Treatments and Clinical Trials, Prostate Cancer /by Kara Rayburn

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.

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

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

February 8, 2024/in PC Activated, PC Activated Toolkit, PC Newly Diagnosed, PC Programs, PC Resources ND, PC Resources TC, PC Treatments and Clinical Trials, Prostate Cancer /by Kara Rayburn

Thank you for taking this assessment. By answering the questions below, a custom patient plan featuring a collection of vetted resources will be emailed to you within 5 minutes. If you don’t see it, please be sure to check your spam. Stay [ACT]IVATED.

[ACT]IVATED Prostate Cancer Toolkit Checklist

February 8, 2024/in PC Activated, PC Activated Toolkit, PC Newly Diagnosed, PC Programs, PC Resources ND, PC Resources TC, PC Treatments and Clinical Trials, Prostate Cancer /by Kara Rayburn

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Staying Proactive While Facing a Prostate Cancer Diagnosis

January 17, 2024/in PC Activated, PC Activated Resources, PC Blog ND, PC Newly Diagnosed, PC Programs, Prostate Cancer /by Kara Rayburn

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.

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.”

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.”

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.”

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.

[ACT]IVATED Prostate Cancer Resource Guide en Español

January 4, 2024/in PC Activated, PC Activated Resources, PC Newly Diagnosed, PC Programs, PC Resources ND, Prostate Cancer /by Kara Rayburn

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Spanish Activated Prostate Cancer Resource Guide

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[ACT]IVATED Prostate Cancer Resource Guide

January 4, 2024/in PC Activated, PC Activated Resources, PC Newly Diagnosed, PC Programs, PC Resources ND, Prostate Cancer /by Kara Rayburn

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Activated Prostate Cancer Resource Guide

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Tools for Accessing Personalized Advanced Prostate Cancer Treatment and Care

November 10, 2023/in INSIST! Prostate, PC Insist Treatment, PC Newly Diagnosed, PC Programs, PC Treatments and Clinical Trials, PC Videos ND, PC Videos TC, Prostate Cancer /by Kara Rayburn

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

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

See More From INSIST! Prostate Cancer

Related Resources

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

How Do Biomarker Test Results Impact Prostate Cancer Treatment Options

Essential Testing Following a Prostate Cancer Diagnosis

Transcript:

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

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

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

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

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

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

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

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

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

How Can Prostate Cancer Stigmas and Misconceptions Be Addressed?

November 10, 2023/in PC Activated, PC Activated Expert Interviews, PC Newly Diagnosed, PC Programs, PC Treatments and Clinical Trials, PC Videos ND, PC Videos TC, PC Videos WPS, PC Whole Patient Support, Prostate Cancer /by Kara Rayburn

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

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

Related Resources:

Understanding Recommended PSA Screening Age and Frequency In Prostate Cancer

Emerging Promising Advanced Prostate Cancer Treatments

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Transcript:

Lisa Hatfield:

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

Dr. Yaw Nyame:

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

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

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

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

[ACT]IVATED Prostate Cancer Post-Program Survey

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities

November 10, 2023/in PC Activated, PC Activated Expert Interviews, PC Newly Diagnosed, PC Programs, PC Treatments and Clinical Trials, PC Videos ND, PC Videos TC, Prostate Cancer /by Kara Rayburn

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities from Patient Empowerment Network on Vimeo.

For advanced prostate cancer diagnosis and survival, what are some disparities that Black and Latinx patients can help overcome? Expert Dr. Yaw Nyame with the University of Washington discusses ways that Black and Latinx communities can help shift the power dynamic for patients to help drive prostate cancer research efforts.

Related Resources:

Prostate Cancer Clinical Trials | Is Mistrust a Barrier

Emerging Promising Advanced Prostate Cancer Treatments

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Transcript:

Lisa Hatfield:

So a shout-out to Dr. Nyame for an outstanding article that you wrote. I’m going to read a quote from that. Worldwide Men of African Ancestry Demonstrate Worse Outcomes in Prostate Cancer, a phenomenon driven largely by social factors that inform biologic, environmental, and healthcare risks. So, Dr. Nyame, considering the disparities and taboos on prostate cancer, how can Black and Latinx men including their care partners play a role in eliminating these racial disparities surrounding prostate cancer diagnosis and survival rates?

Dr. Yaw Nyame:

I think because of the nature of what drives these disparities, there is no doubt that cancer is a biologic phenomenon, and so there is no reason to ignore biology, but a lot of inequity in the majority of inequity is rooted in structural and social inequities that really inform health, and when I look at our traditional mechanisms for providing healthcare, there is such a power differential, whether it’s in how we provide clinical care or how we do research, and so we as a research team here at the University of Washington, fundamentally believe that we have to reverse those roles that we have to hand the power back to community, so that they’re an equal partner at the table when we do the work that we do. And so we do a lot of work that is centered around engaging community and patients and partnering with community and patients, and I think that’s one way to ensure that we develop research and interventions that create equity.

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

Sherea Cary:

My activation tip in this area for care partners would be encouraging communication, encouraging the patient to share with others, other men, what their experience has been. It seems to me that when you’re in community with other people and you have something in common then the person who is experiencing cancer or an illness, feel a connection, if they know that someone that they know has had it and survived it and seems to be doing well, that’s encouraging to them, and then we also want that person to pay it forward.

So what I remember about my dad is that after he had his cancer diagnosis, he would share with other men who were facing, who were having testing done and then who had been diagnosed, he talked to them about what happened with them, and they had their own sense of community.

[ACT]IVATED Prostate Cancer Post-Program Survey

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

November 10, 2023/in PC Activated, PC Activated Expert Interviews, PC Newly Diagnosed, PC Programs, PC Treatments and Clinical Trials, PC Videos ND, PC Videos TC, Prostate Cancer /by Kara Rayburn

What Impact Does Advanced Prostate Cancer Have on Lifestyle? from Patient Empowerment Network on Vimeo.

What should advanced prostate cancer patients expect for treatment impact? Expert Dr. Yaw Nyame with the University of Washington explains common treatment side effects, advice for easing physical side effects, and ways for patients and care partners to find support.

Related Resources:

Prostate Cancer Clinical Trials | Is Mistrust a Barrier

Emerging Promising Advanced Prostate Cancer Treatments

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities

Transcript:

Lisa Hatfield:

There is often a tendency to associate advanced prostate cancer with a risk to relationship intimacy. And can you speak to sexual dysfunction and other lifestyle concerns when it comes to prostate cancer and that diagnosis?

Dr. Yaw Nyame:

So, prostate cancer, it’s important to remember that the prostate itself is a sex organ for men, right? Its primary purpose is to produce seminal fluid, the fluid that comes out with ejaculation. And it’s closely linked to a whole lot of structures in your pelvis that support, you know, erectile function and sexual function. All of our treatments have the very real potential to impact sexuality and sexual function. And, I think part of what’s important to do is you go into these and to your conversation with your doctors is to understand how your sexual function, your urinary function, and sometimes your bowel function are going to be impacted by these treatments.

And to get some real clarity about what life will look like for you post-treatment and the setting of advanced cancer, there’s also the added potential of impact to sexual function from the hormone suppression. When we take away your testosterone, oftentimes we take away things like libido or your sexual desire, and we can impact erectile function as well.

You know, things that can help overcome some of the side effects of that hormone suppression are definitely diet and exercise, being active, keeping your muscle mass up, having good dietary habits seem to help. We have a lot of mixed reviews and the literature about the benefit, but I, yeah, I’m a strong believer that the healthier you can be as you undergo these treatments, the better you’re going to do overall. My activation tip when it comes to these new diagnoses is to really invest in advocacy organizations that exist in your community so that you can be connected to other men who are undergoing treatment to have candid conversations about life as a prostate cancer survivor. Organizations like ZERO – the End of Prostate Cancer. There are local groups the NASPCC, there are just chapters and groups of men all across the country that gather to talk about their journey.

And I think that that can be a really wonderful network to better understand what treatment realities may look like for you, but also to support the emotional and physical toll that treatment may take on you. And I think that, that being part of those networks actually will also arm you and empower you to have really good conversations with your doctors to understand what resources are available to support you in your survivorship.

What a lot of men and individuals of prostate cancer aren’t told is that there are some solutions for some of these problems may not be like it was before, but there are many treatments that can exist and do exist that can help preserve certain portions of this quality of life, these quality of life components. And if you don’t know about them, you can’t ask about them. And if you’re not willing to confront them, you may not ask about them and suffer unnecessarily.

My activation tip for care partners related to this question would be, have the tough conversation. Talk about having the tough conversation, schedule a time to try and do it. Don’t do the tough conversation when the football game is on, on Sunday evening. Don’t have it on Wednesday night when the baseball playoffs are going on, but have that conversation so that the care partner can help advocate for the patient about those things that the patient may feel uncomfortable talking about. But if we don’t talk about it, we can’t work on it. And if we don’t work on it, we can’t fix it. So it is important to have the tough conversation.

Lisa Hatfield:

Right, thank you both Dr. Nyame and Sherea, who is a care partner. Thank you for that. Those activation tips.

[ACT]IVATED Prostate Cancer Post-Program Survey

Emerging Promising Advanced Prostate Cancer Treatments

November 10, 2023/in PC Activated, PC Activated Expert Interviews, PC Newly Diagnosed, PC Programs, PC Treatments and Clinical Trials, PC Videos ND, PC Videos TC, Prostate Cancer /by Kara Rayburn

Emerging Promising Advanced Prostate Cancer Treatments from Patient Empowerment Network on Vimeo.

What emerging advanced prostate cancer treatments are showing promise? Expert Dr. Yaw Nyame with the University of Washington shares his perspective about the treatment landscape, updates on clinical trials showing promise, and how to help ensure optimal patient care.

Related Resources:

Prostate Cancer Clinical Trials | Is Mistrust a Barrier

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities

Transcript:

Lisa Hatfield:

Can you speak to the current treatment landscape and any new research coming out about advanced prostate cancer treatment that you are excited about? And how do you work with your patients to make treatment decisions, particularly those in underrepresented communities?

Dr. Yaw Nyame:

So, two very different questions. The first thing I’ll say is the landscape is changing, and there are a lot of exciting things. There are some trials that are showing that the combination of systemic therapies like the hormone blockade, whether it be hormone blockade at a large level, at the cell level with some of those novel agents like abiraterone (Zytiga) and enzalutamide (Xtandi) or even chemotherapy, how we combine those are all very exciting. But we also know that local control of the prostate, so either using radiation to the prostate, which was shown to be beneficial in a clinical trial from the UK called STAMPEDE, we have an ongoing clinical trial called SWOG 1802, which is looking at whether surgery locally to the prostate can add additional benefit to men with advanced prostate cancer.

So I think it’s exciting to understand how we can improve survival. It used to be around three-year survival for prostate cancer when you were diagnosed with advanced forms. We’ve moved that to beyond five years because of how many incredible new advances we have and these combinations of local therapy and systemic therapy. We also have new drugs coming into the landscape like lutetium Lu 177 vipivotide tetraxetan (Pluvicto), which is a PSMA tagged radioligand which has, you know, shown some really great results in the castration-resistant or hormone resistant space that’s being tested now earlier in the hormone sensitive space and high risk localized space.

So there are a lot of really fantastic and exciting new advances. I’m skipping over other types of medications that are really in the precision oncology space, like the PARP inhibitors which are shown to be beneficial in people who have, you know, certain genetic, you know mutations and DNA recombination.

So I think we continue to see evolution in this space where, you know, we used to sort of see this cancer as a one size fits all. And you know, we sort of try to sometimes hit a square peg into a round hole, and now we’re able to really say, okay, your cancer has these features and this combination of things is what’s going to work best. But the problem with that is the more nuanced and the more personalized our care gets, the more opportunity there is for people who are on the margins to be lost.

And so, you know, our historically, you know, marginalized and minoritized populations are sometimes going to be the ones at highest risk for not getting the latest and greatest. One of the things that I’m really interested in supporting and seeing supported in cancer centers and in clinical sites across the country is patient navigation.

Providing services that help people get connected to all the different types of doctors, all the different types of institutions that might offer them the treatments and the workups that they need to make sure that they get access to the best care that’s available. And that’s not only supporting the patient oftentimes, but that’s supporting their caregivers, their families, and making sure that what is a really complex process. It’s not just going in for one doctor’s visit oftentimes, right?

Seeing a lot of different specialists, getting a lot of different tests. But that process is supported for people that have especially among people that have significant social needs and may not be able to navigate that on their own. My activation tip in this space is to absolutely do your homework and find resources to help you navigate this very confusing and very busy landscape when you have your diagnosis.

A lot of cancer centers have patient navigators, okay? And if they don’t, they should. So that is one resource that you should not be afraid to ask for and utilize is someone from the doctor’s office. That’s just going to take the time to make sure if you need to be connected to an insurance, you know agency like Medicare or Medicaid, that you’re connected, that if there are certain appointments you need to make, that they help you schedule and if you need transportation support, that they help connect you to that. And so finding those resources, whether it’s through your community and peer network or through the cancer center, is really important to make sure that you can get as comprehensive of care as you can.

Sherea Cary:

My activation tip for care partners when addressing things like treatment and new research is for the care partner to be as informed as possible about other health issues that the patient may have, and to be transparent with the oncologist about what other things are going on in the patient’s life to make sure that they fit some of the new research that’s coming out or be able to, or the patient and the care partner are able to overcome those barriers that may separate them in some of the treatment decisions.

Lisa Hatfield:

Right, thank you both Dr. Nyame and Sherea, who is a care partner. Thank you for that. Those activation tips.

[ACT]IVATED Prostate Cancer Post-Program Survey

Prostate Cancer Clinical Trials | Is Mistrust a Barrier?

November 10, 2023/in PC Activated, PC Activated Expert Interviews, PC Newly Diagnosed, PC Programs, PC Treatments and Clinical Trials, PC Videos ND, PC Videos TC, Prostate Cancer /by Kara Rayburn

Prostate Cancer Clinical Trials | Is Mistrust a Barrier? from Patient Empowerment Network on Vimeo.

Is medical mistrust a barrier to prostate cancer clinical trials participation? Expert Dr. Yaw Nyame with the University of Washington discusses the history of medical abuse with some people of color and how medical professionals must guard against excluding some patients from clinical trials.

Related Resources:

Emerging Promising Advanced Prostate Cancer Treatments

What Impact Does Advanced Prostate Cancer Have on Lifestyle?

Advanced Prostate Cancer Diagnosis and Survival | Black and Latinx Disparities

Transcript:

Lisa Hatfield:

My question about barriers is about the historical mistrust of trials. Do you find that fear and mistrust is a barrier? Have you experienced that at all in your practice?

Dr. Yaw Nyame:

There is no doubt that we have a history of medical and clinical abuse of vulnerable populations. We oftentimes point to examples like Tuskegee as an example of medical abuse. But medical abuse and medicine started in the slave chattels, and we have it, we have documented and published examples of Black slaves in the U.S. being the subjects of medical experimentation that’s carried out into, you know, the early forms of formal medical education where patients who showed up to county hospitals and public hospitals were subject to experimentation that no doubt has a deep rooted effect on populations of color who seek clinical care from academic institutions. However, we can’t let that history be an excuse for excluding Black and Brown populations from clinical trials. And what happens now is oftentimes I hear, well, these folks are, don’t trust us.

And so what can we do to build the trust? Well, in that process, we oftentimes fail to just ask people whether or not they want to participate in trials. There’s this presumption that while people aren’t interested, and I think what we need to do is ask everybody that comes through our doors to consider a clinical trial and to think about what barriers truly exist to prevent people from participating. because right now, if we really rely on this mistrust and distrust as a viewpoint of why people aren’t participating in trial, then we actually, we put the blame on our patients, right? And we don’t actually put the blame on ourselves as the main drivers of non-participation or what really it’s not a participation issue. It’s an exclusionist issue, right? We propagate a history of excluding you know, people of color from clinical trials.

[ACT]IVATED Prostate Cancer Post-Program Survey

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

November 10, 2023/in PC Activated, PC Activated Expert Interviews, PC Newly Diagnosed, PC Programs, PC Treatments and Clinical Trials, PC Videos ND, PC Videos TC, Prostate Cancer /by Kara Rayburn

Advanced Prostate Cancer Clinical Trials | Why Black and Latinx Participation Is Vital from Patient Empowerment Network on Vimeo.

Why is advanced prostate clinical trial participation important for Black and Latinx patients? Expert Dr. Yaw Nyame with the University of Washington explains how clinical trial participation helps patients and solutions toward removing barriers to participation.

Related Resources:

Prostate Cancer Screening and Outcomes | Impact of Racial Disparities

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

What Can Signal Hormone-Sensitive Advanced Prostate Cancer?

Transcript:

Lisa Hatfield:

Dr. Nyame, the importance of clinical trial participation can’t be underscored enough in cancer care. Can you speak to advanced prostate cancer clinical trials specifically for Black and Latinx men, and critically important, how are you and your colleagues removing barriers to accessing care and underrepresented communities, including the access to those clinical trials?

Dr. Yaw Nyame:

Yeah, I can’t state this enough. Clinical trials are a form of high-quality care, and I think a lot of people don’t understand that clinical trials don’t just test you in a vacuum with something that we think is really promising versus nothing at all. Clinical trials often are going to test a standard of care, so what we do currently versus something standard of click care and something that we think has benefit, and so at the very least, when you participate in the clinical trial, you are going to get what we think works best currently.

And then there’s the additional benefit that you might get something that we think works a little bit better or a lot better than what we do currently, and you do it in a space where people are monitoring you really closely, right? Because the clinical trial needs to collect data and understand how things work and how well they work. So it is a form of really high quality care, and I urge Black, Latino, and other minoritized patient populations to find ways to get access to this really high quality care. Now, what we have to do as medical institutions, as cancer center, is figure out ways to remove the barriers that limit people’s ability to participate in clinical trials.

Those barriers are usually social barriers, right? It is the, do I have the ability to take off time from work to participate in this trial? How’s this going to affect my household if I’ve got to come in my case to Seattle and take a whole day off from work to participate? Can I afford transportation to be coming to the cancer center every week? You know, do I have child care to participate in this trial? And so we as cancer centers are starting to think more holistically about how we can remove social barriers to clinical trial participation. And I do think until we get that right a lot of the inability for marginalized and minoritized populations to participate in clinical trials falls at our feet. So what are we doing to address barriers? Well, I think we’re trying to think about ways of putting clinical trials directly in communities.

So some of those social barriers are removed so that it’s not always on the patient to come to us. We’re thinking of ways to support those patients that have to absolutely come to us for a variety of reasons for a clinical trial so that there isn’t that financial and social burden. But it’s very much a work in progress. And I think we’re really in the early phases of understanding how we can support people. My activation tip when it comes to clinical trials and prostate cancer is to ask for them and to demand opportunities to participate in them because they are such high, they’re such incredible forms of high quality care.

And I think by participating in a clinical trial, you’re giving yourself and future versions of yourself and your community opportunities to have better outcomes when it comes to these cancers. And I think the second portion of that is to demand and ask from your cancer centers that they find ways to support you in participating in those clinical trials. Because as a cancer center and as an academic clinical institution, our mission is to serve. And we do have resources that we can sometimes make available to make sure that you can afford to and not be put out by participating in a clinical trial.

[ACT]IVATED Prostate Cancer Post-Program Survey

What Can Signal Hormone-Sensitive Advanced Prostate Cancer?

November 10, 2023/in PC Activated, PC Activated Expert Interviews, PC Newly Diagnosed, PC Programs, PC Videos ND, Prostate Cancer /by Kara Rayburn

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

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

Related Resources:

Prostate Cancer Screening and Outcomes | Impact of Racial Disparities

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

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

Transcript:

Lisa Hatfield:

What is advanced hormone-sensitive prostate cancer, and are there specific symptoms or warning signs to be aware of?

Dr. Yaw Nyame:

When we have prostate cancer that has spread beyond the prostate. We define that as advanced or sometimes we call it metastatic prostate cancer. And early on in that process, we can control and often kill many of those prostate cancer cells by taking away testosterone. Testosterone ends up being like the fuel that allows these cancers to grow. And so when we say a prostate cancer is hormone-sensitive, what we mean is it’s sensitive to testosterone, and by shutting off testosterone, we can effectively manage and or kill those prostate cancer cells.

Over time, when we shut off that testosterone, prostate cancers will learn how to produce internally their own testosterone or develop resistance or find ways to still survive in the absence of testosterone, and when that happens, we call that pheromone-resistant or sometimes you will hear the term castrate-resistant prostate cancer.

Advanced prostate cancers are going to be in a category of cancers where people may have symptoms, those symptoms aren’t always specific, they can range from difficulty urinating, having blood in the urine, having fractures of bones that have been invaded with cancer, weight loss, loss of appetite, and so that is sort of a broad spectrum of symptoms that someone could potentially experience with an advanced prostate cancer, but not all folks are going to have those particular symptoms, because oftentimes when you have severe prostate cancer-related symptoms, those are in pretty advanced stages, meaning you have a pretty high amount of cancer that is outside of the prostate.

My activation tip, when it comes to hormone-sensitive prostate cancer that is advanced, is to be informed about the latest therapies that we offer in this space, because it is constantly changing 15 years ago. The mainstay of treatment was just hormone blockade, and we put people on medications that took their testosterone away or offered them surgeries to take away testosterone from the testicles. We then added on these novel testosterone or androgen-blocking medications like abiraterone (Zytiga) or enzalutamide (Xtandi), which people will hear about when they look up the space of what their diagnosis, then we added on chemotherapy in the form of docetaxel (Taxotere), and now we’re doing combinations where we add the hormone blockade and medicine like abiraterone and chemotherapy, what we call triplet therapy as now first-line therapy.

And so this space is changing so much that when you have this diagnosis, you need to take a pause and do your homework so that you are prepared to have a conversation with your medical oncologist about whether you need doublet therapy, one of the two medications or triplet therapy, or if you even need to consider the addition of something like radiation to the prostate. All of these are standard of care, and it’s no longer just a one medication pipeline for treatment is really an individualized and complex therapy.

[ACT]IVATED Prostate Cancer Post-Program Survey

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

November 10, 2023/in PC Access and Affordability, PC Activated, PC Activated Expert Interviews, PC Newly Diagnosed, PC Programs, PC Testing, PC Videos AA, PC Videos ND, PC Videos T, Prostate Cancer /by Kara Rayburn

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

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

Related Resources:

Prostate Cancer Screening and Outcomes | Impact of Racial Disparities

What Can Signal Hormone-Sensitive Advanced Prostate Cancer?

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

Transcript:

Lisa:

Dr. Nyame, could you explain what a digital rectal exam is and its role in the prostate cancer screening, and is the screening invasive and can men prepare for it?

Dr. Yaw Nyame:

So I am so glad that this question is here because I think for far too long, there has been this misinformation that prostate cancer screening that is effective requires a digital rectal examination. And we have a lot of data that demonstrates to us that for screening to finding cancers early, that the digital rectal examination is not necessary and it’s not effective. Effective screening requires a blood test. And that is the PSA blood test. Now, if your blood test is abnormal, we absolutely require the rectal examination for what is called staging, and that’s to understand whether you have an advanced cancer or not. That digital rectal examination means that a provider uses a lubricated gloved finger to feel the prostate through the rectum that is an invasive test, but I would say absolutely do not let the thought of the finger exam as many of the men call it, be an impediment to being screened, because really what you need to catch your cancer early is a blood test.

A blood test that most people of African ancestry should be considering in their 40s. My activation tip when it comes to prostate cancer screening is to be informed on what the best current practices are and to understand that simply getting a blood test that you can add on to your standard routine physical examination and visit with your primary care doctor starting at age 40, could significantly increase your chances of having your cancer detected early when it is curable.

Cure rates of localized prostate cancer, so cancer that is only in your prostate is somewhere between 97 to 99 percent when we catch it early, and so this blood test can save lives, we have a lot of information that demonstrates that. And I think by being aware of the benefit of screening and the harms. Okay, false positive tests, infections, some of the other things that can come downstream, you can be well informed to make a decision that suits you, and you can have these conversations with your doctor to understand whether testing is appropriate for you and when and how to pursue testing to be screened for prostate cancer.

Sherea Cary:

My activation tip for care partners it’s important that the caregiver know what the blood test, what the range should be, so that when the results are back the care partner will understand whether you or the patient need to be concerned. It’s important to have the blood test done, the PSA test, it’s important to know what it detects as a care partner, and it’s also important to know what is the range of what is normal or what is something that needs to be examined further. Knowledge is the key as a care partner.

Lisa Hatfield:

Right, thank you both Dr. Nyame and Sherea, who is a care partner. Thank you for that. Those activation tips.

[ACT]IVATED Prostate Cancer Post-Program Survey

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