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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials from Patient Empowerment Network on Vimeo.

What’s vital for small cell lung cancer (SCLC) patients to know about clinical trials? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains the impact of clinical trial on treatment advancements and questions for patients to ask when considering clinical trial participation. 

[ACT]IVATION TIP

“…if you’re considering a clinical trial, to make sure you read that consent. And that consent can be difficult sometimes. So if you have questions, just ask. When patients are on clinical trials, there’s a whole team of people that are looking for that patient. So ask the questions that you may have from that consent with that patient.”

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Transcript:

Lisa Hatfield:

Why is clinical trial participation so important in small cell lung cancer? And what advice do you have for patients considering one?

Rafael Santana-Davila:

So clinical trials are very important, not only in small cell lung cancer, but in all cancers. The only way that we know how to treat this is by doing clinical trials. That is what moves the needle forward. It’s thanks to patients that participate in clinical trials that we know whether something worked or how much worked or something did not work, and we need to either get back to the drawing board or eliminate that possibility and move on.

Unfortunately, only the minority of patients participate in clinical trials and that is many times only because of access. So it’s important for patients to consider clinical trials. That is where we’re analyzing the future medications, and many of those future medications will become the standard of care and by participating in clinical trials, patients will have access to those medications.

And by participating in clinical trials, patients are also paying it forward. These clinical trials may not help them as much as possible, but they are helping those patients down the line. When patients are considering a clinical trial, there’s many questions that they need to ask is, “What does that involve for me? How frequently do I need to come to the cancer center? Aside from getting it, what else is asked from me? Am I being asked to also come to other blood draws, for example, or am I just receiving this treatment and that’s treatment by itself? Is there a randomized component to this clinical trial? Am I being elected to receive one arm or the other? Is there a placebo component in that trial?” The majority of patients with the majority of trials in cancer are not placebo-based.

But that’s important to know. “What help can the clinical trial give me?” Again, like we talked about, many clinical trials can help patients with lodging or transportation. So the activation tip for that is, if you’re considering a clinical trial, to make sure you read that consent. And that consent can be difficult sometimes.

So if you have questions, just ask. When patients are on clinical trials, there’s a whole team of people that are looking for that patient. So ask the questions that you may have from that consent with that patient. And I always encourage a clinical trial because again, that is what is helping us move the needle forward. 

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Key Resources for Small Cell Lung Cancer Patients and Families

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Key Resources for Small Cell Lung Cancer Patients and Families from Patient Empowerment Network on Vimeo.

What’s important for small cell lung cancer patients from underrepresented communities to know? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares advice for patient resources, his perspective about lung cancer stigma, and ways to mitigate issues with stigma.

[ACT]IVATION TIP

“…make sure that you ask your doctor, ‘Well, what about palliative care? What about social worker?’ or ‘I’m having trouble with this or that. Who can help me with this?’”

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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

Transcript:

Lisa Hatfield:

What key resources and support services do you typically recommend or provide to SCLC patients, particularly from underrepresented communities following their diagnosis?

Rafael Santana-Davila:

That is a good question that I don’t know the right answer to. So part of the resources that we share with the patient is a visit with a social worker, a visit with a nutritionist, a visit with our colleagues in palliative care, that they’re all part of treatment of the patient with cancer that is available both for patients of underrepresented communities or other patients.

So that is the activation tip for that is make sure that you ask your doctor, “Well, what about palliative care? What about social worker?” or “I’m having trouble with this or that. Who can help me with this?” And like we said before is a patient empowerment is…a patient that is empowered is a patient that asks all those questions and receives more help. There’s a lot of help that is out there and the key is to connect those individuals.

Lisa Hatfield:

What is your advice for a patient living with small cell lung cancer in rural areas who might not have access to state-of-the-art cancer care?

Rafael Santana-Davila:

Yes. So first of all, although people living in rural areas do not have access to major cancer centers…or let me rephrase that. They do not live in major cancer centers. Thanks to technology, they do have access. How? With telehealth. A lot of things that I do, which is medications, they don’t really have to see me for treatment. I can give advice on the treatment that can be instituted anywhere. So patients that live, again, in Eastern Washington, which is a rural part of the state, can see me through telehealth, and I can help them and their physicians who are not sub-specialists to direct their care.

And again, it’s important to know that it’s not that we’re smarter than the general community oncologists. We’re not. We just have more experience in this disease. We’ve seen a lot of things that happen, so we are able to recognize things when they happen and just have access to more clinical trials. So the activation tip for that question is make sure that…we said that before, that you seek a second opinion.

And that may not involve travel for many hours. That may be as simple as a telehealth appointment with a major cancer center of such state to know what is available. And also know that many clinical trials can now actually pay for lodging and pay for transportation to those centers. So although it’s going to be trickier for them to receive them, living in a rural area does not mean that you’re not eligible for that.

Lisa Hatfield:

Have you encountered any misconceptions or stigmas related to small cell lung cancer within underrepresented communities? And how do you address or mitigate these issues with your patients?

Rafael Santana-Davila: 

There is a lot of stigma in this disease. We know that in the great majority of patients with small cell lung cancer and lung cancer in general, there is a smoking component to it. So patients feel that this is something that they brought upon themselves sometimes and there’s a lot of stigma associated with it. And that is not true. Yes, this is a smoking-related condition, but smoking is an addiction. Patients do not smoke because they want to. They smoke because they get addicted to it.

Everybody that I’ve met who’s a smoker at some point has wanted to quit and they cannot quit, not because they don’t have the willpower, or not because they’re weak, it’s because they can’t. This is an addiction. And it’s actually cancer, both small cell and lung cancer happens in the minority of smokers. So it’s important to know that this is…yes, quitting smoking could have prevented this cancer, but quitting smoking is nothing that is easy. And even if they quit smoking, this could have come.

So it’s important to patients to know that this is not…they should not blame themselves. This is both for underrepresented minorities and the patients at large. Don’t blame yourself for this. This is nothing that you could have prevented. And this is not your fault that this happened to you.” The activation tip for this is there’s a lot of what patients need to talk about, a lot of things, and these are hard conversations that you need to have. They’re not comfortable many times, but you need to open up. You need to have these conversations with your family, and you need to really say what’s in your heart. So that would be my activation tip. 

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Small Cell Lung Cancer | Hope for Treatment Advancements

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Small Cell Lung Cancer | Hope for Treatment Advancements from Patient Empowerment Network on Vimeo.

What does the future of small cell lung cancer (SCLC) treatment look like? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains advances in SCLC research, treatments that are in clinical trials, and questions to ask about clinical trial access.

[ACT]IVATION TIP

…you need to ask the doctors, “Are there any clinical trials that you’re excited about that I should look into right now? Where are they available? And can I participate in that?”

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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

Transcript:

Lisa Hatfield:

Often, SCLC patients feel like there’s so much information coming out about non-small cell lung cancer, but feel left out of these conversations. Can you share why small cell lung cancer patients should be hopeful for more conversations around advancements in the future?

Dr. Rafael Santana-Davila:

So that is a very important question, subject. And that is true. We see a lot of advances in non-small cell lung cancer and not that much in small cell lung cancer. I frequently say that small cell lung cancer is the bad brother, the black sheep that we don’t talk about. Part of that is because small cell lung cancer is just a more aggressive cancer, but part of that is it has not been studied as much as non-small cell. Non-small cell lung cancer is also a hodgepodge of diseases, and there are a variety of diseases that are nested into that category, so it’s natural to have more advances in that because there are more diseases. But I can tell patients that we’re making headways in small cell lung cancer.

We’re making headways in identifying those patients that we need to escalate therapy, we’re identifying novel treatments. There are different things in the pipeline that range from other methods of immuno-oncology, like complicated names like BiTE therapies or antibody drug conjugates that are coming out. There are a lot of epigenetic therapies that are coming out. So although it’s true that patients with non-small cell lung cancer have had more advances, there is still a lot of hope for the future. And what I can tell you it’s changing rapidly. And in a year, the treatments that we may have available will be different. And all those things are right now going into clinical trials. So that’s why the activation tip for that is you need to ask the doctors, “Are there any clinical trials that you’re excited about that I should look into right now? Where are they available? And can I participate in that?”

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How Small Cell Lung Cancer Patients Can Best Self-Advocate

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How Small Cell Lung Cancer Patients Can Best Self-Advocate from Patient Empowerment Network on Vimeo.

How can small cell lung cancer (SCLC) patients advocate for optimal care? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares advice for questions to ask your doctor and about the benefits of telehealth and clinical trials.

[ACT]IVATION TIP

“…make sure that you ask several questions to your doctor is, “Can I have access to a second opinion to a sub-specialist in lung cancer? Or have you thought about my case? And is there any availability of clinical trials here or in other centers?”

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Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

Transcript:

Lisa Hatfield:

So one of your areas of research is studying how small cell lung cancer patients in the general population, those who don’t have access to cancer centers, are treated in order to figure out how to best bring the most recent advances in care to these individuals. Can you share with us some recent findings or learnings from your research, and how can these patients maybe best advocate for themselves?

Rafael Santana-Davila:

Medicine is a team sport. And this is also especially true for cancer. And the difference that…when I see patients, I tell them that it’s not that I’m smarter than the community oncologist. I’m not. The difference that I have with community oncologists is that I’m a sub-specialist. So who I treat are patients who have cancers of the chest or the head and neck. That means that I dedicated my career to treating those patients. And if you ask me questions about lung cancer or head and neck cancers, we can talk forever. But I’m no longer a specialist in treating all other cancers. Community oncologists don’t have that luxury.

So I do think that it’s very important for patients to get a second opinion, to have access to a major cancer center so that they can be sure that the plan of treatment is something that is the top of the line, the best treatment that is available. And they also ask about clinical trials, because there’s clinical trials out there that are moving the needle forward, and participation of those clinical trials is something that is very important. So having an opinion by somebody that, again, treats only lung cancers is very important. Now, the only thing good that COVID had was that it led to telehealth.

So nowadays I can see patients…I work in Seattle, so I can see patients that live across the state and in the farmland where they don’t have access to an academic medical center also to a sub-specialty, but I can see them through telehealth and I can…in the majority of cases, I say, “Yes, your doctor at home has a good plan. Let’s treat you with that.” Or I give some tips or tricks to the community oncologists, or I offer the latest and greatest in clinical trials and patients can make that decision at that point.

So the activation tip for this is make sure that you ask several questions to your doctor is, “Can I have access to a second opinion to a sub-specialist in lung cancer? Or have you thought about my case? And is there any availability of clinical trials here or in other centers?” That’s what I would tell patients. And patients need to be the best advocates for themselves and they are. They know that they’re going through a very rough time, but they just need to say, “What else can I do for this?”

Lisa Hatfield:

Great, thank you so much for that. And as a cancer patient myself and a patient advocate, I fiercely advocate for patients to always, if you get a cancer diagnosis, if you can, consult with somebody who is a specialist or a sub-specialist in the type of cancer you have. It can make a difference for you.

Rafael Santana-Davila:

I agree. And, again, with the era of telehealth, that has opened the ability for this.

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Small Cell Lung Cancer and Immuno-Oncology | What Patients Need to Know

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Small Cell Lung Cancer and Immuno-Oncology | What Patients Need to Know from Patient Empowerment Network on Vimeo.

What do immuno-oncology advancements mean for limited stage and extensive stage small cell lung cancer (SCLC)? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains the research advancements in immuno-oncology and the status of these treatments and clinical trials for LS-SCLC and ES-SCLC patients.

[ACT]IVATION TIP

“…patients who are diagnosed with small cell lung cancer should ask a doctor, ‘What about immunotherapy? Is that the right thing for me?’”

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Transcript:

Lisa Hatfield:

Could you please explain research advancements in immuno-oncology and what this means for limited and extensive stage small cell lung cancer patients? And which patients have access to that?

Rafael Santana-Davila:

So, immuno-oncology is something that has completely changed the paradigm of treatment of patients with cancer, and very rough explanation, very simple is treatment that augments a patient’s own immune system so the immune system can recognize the cancer. This has changed dramatically how we, treat many cancers and many cancers, or sorry, many patients, when this is successful, can have very long survivals thanks to development of immunotherapy.

So, a few years ago, there were clinical trials that showed that the addition of PD-L1 inhibitors, which are a type of immunotherapy added to chemotherapy can both extend the duration of what we call progression-free survival, which is the amount of time before the cancer grows, as well as overall survival, which is obviously how long a patient lives.

But the addition of these medications can extend both of these numbers and is helping patients live longer. This was an extensive stage. So today there are two drugs that are approved by the FDA to add to the addition of chemotherapy. There are atezolizumab (Tecentriq), and durvalumab (Imfinzi). They are, in our eyes, equal.  One is not better than the other. And they are added to chemotherapy. Chemotherapy is continued for, in the majority of cases, for four cycles, and then patients go on to receive immunotherapy by itself. This is an extensive stage lung cancer. A limited stage lung cancer, there are current clinical trials that are asking the question of whether these medications are also worth it, do they improve things?

We do not know the answer to that question as of today. We are also very hopeful that they do, but we’re waiting for the results of those clinical trials. So which patients have access to it today is those patients that have extensive stage disease and that is the standard of care. So an activation tip for this is patients who are diagnosed with small cell lung cancer should ask a doctor, “What about immunotherapy? Is that the right thing for me?”

And in the great majority of extensive stage disease, they will be eligible for unless there are contraindications. Some very main contraindications is a history of autoimmune diseases or patients that are in immunosuppressive drugs, but that is a minority of patients.

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Small Cell Lung Cancer Care and Outcomes in Underrepresented Communities

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Small Cell Lung Cancer Care and Outcomes in Underrepresented Communities from Patient Empowerment Network on Vimeo.

How does small cell lung cancer (SCLC) care look in underrepresented communities? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains how health outcomes differ in some ZIP codes and shares advice for questions to ask your doctor to access optimal SCLC care.

[ACT]IVATION TIP

“…patients should ask their doctors, ‘What are the latest advances in this disease? Am I eligible for it to receive those advances? And where can I see a sub-specialist in this disease? And is it a worthwhile point?’”

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Transcript:

Lisa Hatfield:

Does treating small cell lung cancer patients in underrepresented communities look different than the general population? And are there specific considerations or recommendations SCLC patients from underrepresented communities when it comes to treatment options, including clinical trials or targeted therapies?

Rafael Santana-Davila:

In the majority of cases, patients treated in underrepresented communities do not look different than in the general population in small cell lung cancer. Why? It’s because community oncologists are very good. So they have a hard job, but they’re very good. So the majority of patients get the standard of treatment.

Although we know though that patients with underrepresented communities do fare worse.  And we do not know the reasons for that. A lot of that is because of poverty or many other things. I’ve seen people say that one of the main factors that will determine how long you live is what ZIP code you were born in. So underrepresented communities do do worse in general, not specifically for small cell, but in general.

I do think that what we..like we said before is what patients need to do is advocate for themselves and ask their doctors, “Am I eligible for a clinical trial? Am I eligible for what is the latest and greatest for the disease? Any new advances that you see coming?”And like we said before is seek a second opinion with a sub-specialist in the treating of this disease.

So as like we said before in terms of activation, is you need to…patients need to ask their doctors, “What are the latest advances in this disease? Am I eligible for it to receive those advances? And where can I see a sub-specialist in this disease? And is it a worthwhile point?” Many times it may not be an initial diagnosis, but when patients have recurring disease, that’s when clinical trials are really important because that’s where we’re making the most advances in the treatment of small cell lung cancers, when patients have disease that has recurred despite chemo-immunotherapy.

So my activation tip for this is that patients should ask their doctors, “What are the latest developments in the treatment of this lung cancer? And am I eligible to receive those treatments? And is this a time where I should seek a second opinion or be referred to a clinical trial and another center?”

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What Treatment Options Are Available for Small Cell Lung Cancer?

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What Treatment Options Are Available for Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

What do extensive stage small cell lung cancer (SCLC) and limited stage SCLC patients need to know about treatments? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares a status update on where treatment options stand and discusses how he works with patients on treatment decisions.

[ACT]IVATION TIP

“…patients need to make sure that they know what the goals are. ‘What is…where am I going to…how am I going to feel in the next month? What is the likelihood that this cancer is going to shrink and this cancer is going to make me live longer?’”

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Transcript:

Lisa Hatfield:

So what is the latest information related to treatment options for limited stage LS and extensive stage ES small cell lung cancer? And how do you work with your patients to make treatment decisions about that?

Rafael Santana-Davila:

So this is, unfortunately, a disease where little progress has been made throughout the years because it’s a very aggressive disease. And the main improvement that has been made in the last five years is the addition of immunotherapy to chemotherapy in patients with extensive stage disease. There have now been several clinical trials that have shown that adding immunotherapy improves overall survival. That means that patients live longer.

And there is a very small, but a few patients that have, that see survival into the many years, which is something that was unthinkable before the era of immunotherapy. We do not know if the addition of immunotherapy to limited stage disease, which treatment is, in the majority of cases, chemotherapy and radiation, we do not know if that works or not, that there are clinical trials that are going on, most of them have completed accrual, so we’re just waiting for the data to mature to let us know if that is something that also works there.

We have a lot of hope that it’s the case, but right now, in September 2023, we do not know the answer for that. What I work…how I work with patients to make treatment decisions is I present them with the options of the treatment. So there are always options from being as aggressive as we can to treat it, to try to shrink the cancer, which, many times, comes at the price of side effects to just doing best supportive care, which is we know that sometimes shrinking the cancer is not what is going to make people live longer.

So it’s a conversation that we constantly have with patients where we say, “This is what we propose, this is what the consequences of treatment is going to be, and these are the alternatives.” And you have to work with them depending on their goals, depending on what they want to achieve, you make treatment decisions.

Ultimately, what I tell my patients is, “You’re the captain of the ship. I’m here just to help you navigate these rough waters, but, ultimately, you’re the one that needs to tell me where we want to go.” Okay. An activation tip is patients need to make sure that they know what the goals are. “What is…where am I going to…how am I going to feel in the next month? What is the likelihood that this cancer is going to shrink and this cancer is going to make me live longer?” Those are the questions that they need to make sure they understand.

And something that also they want to know is, what are the goals? It’s very different when you see a very young patient, their goal is to see their high school kid enter college than a 90-year-old patient that their goal is maybe to live the rest of their life with the least intervention or with the least side effects possible. So every patient has different goals. 

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Key Questions to Ask About Extensive Stage Small Cell Lung Cancer

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Key Questions to Ask About Extensive Stage Small Cell Lung Cancer from Patient Empowerment Network on Vimeo.

What should small cell lung cancer (SCLC) patients ask to help prepare themselves? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares how he explains small cell lung cancer, particularly extensive stage SCLC to patients and key questions to ask about treatment and care.

[ACT]IVATION TIP

“…you need to talk to your doctors and say, ‘Okay, what am I looking at? What are the goals of treatment? How am I going to feel in the next month? How am I going to feel in the next three months? And where am I going to be in the next six months? And what is my prognosis? And what do you expect to happen?’”

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Transcript:

Lisa Hatfield:

Dr. Santana-Davila, how do you explain extensive stage small cell lung cancer to your newly diagnosed patients? And what are key questions that patients and families should ask at the outset of their care?

Rafael Santana-Davila:

Oh, great. Thank you. Thank you for that. That is a great question. So patients who have metastatic small cell lung cancer, which is the majority of those with extensive stage, it’s a disease that is not curable, that we treat with chemotherapy and immunotherapy, that the majority of patients have a great response to treatment.

But our goal of treatment is to make patients feel better and have patients hopefully live longer. One of the key questions that families should ask at the outset of care, and this is for extensive stage cancer as well as any other cancer, is “What are the goals of treatment? What do I expect it to be? How is my life going to look a few months from now? And what can I expect?” That is, for me, very important that patients know before they start on the journey of treatment.

How do I explain what extensive stage is? What does it mean…how I explain this to patients is this is a cancer that has arose in your lung and has moved to other places. So we cannot cure it. We can treat it. We can hopefully shrink it and help you to live longer and live better. The majority of patients that present with this disease present with a lot of symptoms. They present with symptoms from the cancer. And many times it’s an emergency to try to treat them as soon as possible.

So this is a conversation that we have with them that we tell them, “It’s very likely that you will feel better, that you’ll respond to treatment.” But again, an activation tip is you need to talk to your doctors and say, “Okay, what am I looking at? What are the goals of treatment? How am I going to feel in the next month? How am I going to feel in the next three months? And where am I going to be in the next six months? And what is my prognosis? And what do you expect to happen?” 

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What Is the Difference Between Limited Stage and Extensive Stage Small Cell Lung Cancer?

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What is the Difference Between Limited Stage and Extensive Stage Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

Limited stage and extensive stage small cell lung cancer (SCLC) are two different types, but how do they differ? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains limited stage SCLC versus extensive stage SCLC, treatment methods for each type, and the importance of communication.

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Transcript:

Lisa Hatfield:

Can you explain the difference between limited stage and extensive stage small cell lung cancer, please?

Rafael Santana-Davila: 

So this is actually a historical definition. Back in, I don’t know the date exactly, but somewhere in the 1980s, how we treated this was when patients…the radiation doctor could treat all the area of disease with radiation, then we call that limited. And limited stage disease means that the person, the patient can get radiation and chemotherapy with the goal of eradicating the disease. Extensive stage is when the disease cannot be treated with a single area of radiation.

In the majority of cases, there’s a very clear distinction, for example, patient has metastatic disease to the liver, that clearly is extensive, stage, but there are occasions where, limited and extensive is very hard to know and the radiation doctor would…two different radiation doctors will give you two different things.

And the important thing in this case is that this is a…all of medicine is a team sport, but treatment of cancer is more because the medical oncologists need to talk to the radiation oncologists to make sure that we’re on the same page as to what is the best treatment we can offer a patient. 

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How to Locate Prostate Cancer Clinical Trials and Improve Awareness

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How to Locate Prostate Cancer Clinical Trials and Improve Awareness from Patient Empowerment Network on Vimeo.

 How is prostate cancer impact different for some populations? Watch as experts Dr. Yaw Nyame and Sherea Cary share the benefits of clinical trials, reliable clinical trial resources, and how clinical trial participation rates can be improved for better care.

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Transcript:

Sherea Cary: 

What advice do you have for prostate cancer patients about locating a clinical trial? Where can you find one? 

Dr. Nyame: 

Clinical trials tend to happen at the big cancer centers and the big academic university centers, although many of those programs will have affiliate partners out in the community. The easiest way to learn about clinical trials is to start by asking the physician that’s treating you for your prostate cancer, oftentimes, they’ll have resources and connections to the trials directly or are the people who are administering them. However, other great sources are going to be patient advocacy networks, and there are many of them for prostate cancer, there’s one…there are several. I’ll start naming a few. They have the Prostate Cancer Foundation, you have Us TOO, you have Zero Cancer, you have a PHEN, Prostate Health Education Network, which is an advocacy group for Black men with prostate cancer. So, these are all great sources of finding out what clinical trials exist, and in addition, you can just get on the Internet and Google if that’s something you have access to. The trick is navigating all the information, and I think knowing what trials are available for you, whether you qualify, that kind of thing can be difficult, and that’s ultimately where finding a provider, whether it’s your direct urologists or radiation oncologist or whoever is helping treat your prostate cancer, either them directly or sometimes seeking a second opinion, and going to a place where you might find someone who has some expertise in trials, if that’s something that you’re interested in. 

Sherea Cary: 

My father participated in a clinical trial, it was going on, I think the time of his treatment, and it was offered to us, and he was at a big facility here in Houston that offered…ask him if he wanted to participate. We did a lot of research. We said we’d try it. And we were glad to be able to participate. I participated in clinical trials also for different health conditions, because I believe it’s important that we have to participate in order for our people to gather the information that’s necessary. So, thank you for that. 

Dr. Nyame: 

Absolutely, you know I think there are a lot of reasons that we think that our Black community, for instance, may not participate in a clinical trial given the history of medical experimentation and various forms of abuse that have existed in our history. But what I recently heard from our partner of our community partners at PHEN, when they surveyed Black men about prostate cancer clinical trials, was that although there was some concern about trust in the history, that the overwhelming majority of the men wanted to participate, but they never were asked. And that’s really stuck with me, and I think that Black men are under-represented in clinical trials, and we have to find ways to be more inclusive and understand what barriers might exist into participation so that we can have that data to care better for the population. 

How Does Aggressive Prostate Cancer Impact Various Populations?

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How Does Aggressive Prostate Cancer Impact Various Populations? from Patient Empowerment Network on Vimeo.

How is prostate cancer impact different for some populations? Watch as expert Dr. Yaw Nyame shares how prostate cancer incidence and death rates vary for some groups, potential risk factors, screening recommendations, and actions that can be taken to improve health outcomes.

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Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?

Transcript:

Sherea Cary: 

What differences do you see in terms of aggressiveness for cancers in different…various populations? 

Dr. Nyame: 

This is an area of research that for me, is trying to understand why certain populations have more aggressive or worse outcomes when it comes to prostate cancer. 

The most obvious example of this here in the United States is for Black men. Black men are more likely to be diagnosed with prostate cancer each year, so about 70 percent more likely to be diagnosed, and they are twice as likely to die from prostate cancer as men of other races in the United States. If you look at what the natural history of prostate cancer and Black men looks like, meaning if you were to chart from diagnosis through the course of the disease, does it look different for Black men? The answer is yes, it appears of Black men get prostate cancer when they’re younger, and there’s data to suggest that perhaps Black men get more aggressive prostate cancer because they’re more likely to progress from the localized or treatable disease to stage IV aggressive disease that can’t be treated. We don’t understand what the drivers of that are for a long time, the medical community has suggested that it’s all biology, and by that may be an inherited biology, but we know that health disparities really carry a significant social contribution. And, in fact, I like to say that social and environmental factors inform biology too. And so, if we see something biologic that explains these trends, it doesn’t mean that that’s the way they were born, it might mean that you put someone in a community that lives near a highway with high pollution or does not have access to clean water or lives in a state of high stress or over security. We don’t know what the biologic manifestations of those types of experiences are, but that perhaps is the reason why we see our communities of color, especially our Black men, are experiencing a higher burden of prostate cancer. 

Sherea Cary: 

So, is there a push to have African American men tested earlier with the PSA test, since it appears that they may get prostate cancer earlier?  

Dr. Nyame: 

The U.S. Preventative Services Task Force, which makes a recommendation to the medical community about prostate cancer screening states that they cannot make a specific recommendation about screening in Black men and other high-risk populations like men with a strong family history of prostate cancer, because those men were not included in the clinical trials that have looked at the efficacy of PSA testing for screening. 

Unfortunately, Black men make up 3 percent or less of participants in the two screening trials that have informed whether there’s a benefit to PSA testing, which there has been shown to be a 20 percent decrease in dying from prostate cancer if you get screened. We recently took data from the screening trials and superimposed them on real-world data from our surveillance apparatus for cancer in the United States, and what we found was that if you did lower the age of screening in Black men from age 55 to 45, that you did decrease the risk of dying from prostate cancer significantly. It is our hope that this type of research will encourage the U.S. Preventative Services Task Force and other medical societies to reconsider their screening recommendation for Black men, ultimately, whatever, if there is a recommendation made to screen at younger ages, I think we need to be conscientious and evaluate what the impact is on the ground, so that if there is a time where we need to reverse a recommendation like that because it’s potentially harmful, that we consider that. But I feel strongly sitting here today that we do need to advocate for earlier screening and Black men. 

Why Is Prostate Cancer Often Referred to As a Couples’ Disease?

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Why Is Prostate Cancer Often Referred to As a Couples’ Disease? from Patient Empowerment Network on Vimeo.

Prostate cancer is often referred to as a disease of couples, but why is that? Watch as expert Dr. Yaw Nyame shares the impact of social support on prostate cancer outcomes and ways that family and friends can help with prostate cancer care.

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Transcript:

Sherea Cary: 

So, some people may consider prostate cancer a couples’ disease. What advice would you give to a care partner? My father was a prostate cancer survivor, my mother was very supportive of him, but I took much of the lead as far as being his caregiver and coordinating things between my father, his doctors’ appointments, and with my siblings. 

Do you believe that support people, caregivers, such as children, are able to also assist in receiving care? 

Dr. Nyame: 

Absolutely. The data is overwhelming in this scenario, patients who are partnered or have strong social support do better, and I always say that the patients who have the best outcomes when it comes to cancer, have someone like you, Sherea in their life. It’s not surprising, given the burden of cancer treatment, that having someone that can help navigate all the aspects of your care and be there to support you leads to better outcomes and better satisfaction with the treatments that you choose. A cancer diagnosis, especially prostate cancer diagnosis, a disease that has a very high cure rate, has a very long-life span, but has really life-altering potential consequences of the treatments you received, has an impact on what we return for survivorship. So how do you live with your cancer, and so the individuals that are there to support you through that journey are absolutely critical.  

How Can a Multi-Disciplinary Team Benefit Prostate Cancer Patients?

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How Can a Multi-Disciplinary Team Benefit Prostate Cancer Patients? from Patient Empowerment Network on Vimeo.

 A prostate cancer multi-disciplinary team can benefit patient care. Watch as expert Dr. Yaw Nyame explains the typical steps taken through prostate cancer care and how the team members can vary for localized prostate cancer versus advanced prostate cancer. 

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How Has the Onset of Prostate Cancer Evolved?

Transcript:

Sherea Cary: 

What does a multi-discipline approach to prostate cancer look like?  

Dr. Nyame: 

Well, when you think about prostate cancer and how it’s diagnosed and how it’s treated, you’re talking about a process that involves a team, the process often starts with your primary care physician, he or she may order a PSA test, which will prompt a biopsy if it’s positive. So that’s the step one is that relationship you have with your primary care physician. Step two is going to be your urologist, that’s the person that’s going to do your biopsy, and if you are diagnosed with prostate cancer that person in conjunction with your primary care physician is then going to be leading this process of do we actively watch your cancer because it’s a low risk, or do we seek treatment because it’s localized, meaning it’s in the prostate and we can still get your treatment with curative intent as we call it, or has it spread? And in that case, your options for a doctor are different on the watch side, you’re probably looking at a urologist who’s watching closely, on the localized side, you’re going to talk to maybe a radiation specialist or a urologist, because both treatments are equal and their effectiveness from cancer treatment.  

But they have different side effects. And I think to get good information about what treatment is best for you, you should see both, and then on the advanced side, you’re talking about a medical oncologist that’s going to help navigate all of the various treatments that we have now for stage IV prostate cancer, and even in that setting, you might still find yourself considering a clinical trial with someone like a urologist or getting radiation treatment, which can be standard of care in select patients that have stage IV cancer. So, as you can see, it is a very wide range of individuals that are helping take care of your cancer, and that’s just on the treatment side, that’s not talking about any of the other supportive services that you may need that may exist either in your community or in your health systems where you’re getting treated. And those can include patient navigators, social workers, the various nursing services, nutritionists, there are a lot of people that you may want to put on your team as you’re considering your care.  

How Effective Is Early Screening in Prostate Cancer?

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How Effective Is Early Screening in Prostate Cancer? from Patient Empowerment Network on Vimeo.

Can prostate cancer early screening be effective? Watch as expert Dr. Yaw Nyame from the University of Washington shares information about those who are at higher risk of prostate cancer and recommended ages to start screening in these higher-risk groups for proactive care. 

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Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?

Transcript:

Sherea Cary: 

What screening test or risk-reducing care would you suggest for men who have a family history of prostate cancer, and at what age should screening begin for specific populations? 

Dr. Nyame: 

Unfortunately, there is no data, rigorous data to help answer this question, but we know that men that have a high risk of developing prostate cancer benefit from earlier testing with PSA. We know this from a variety of studies, including some modeling studies, which we have done here at the Fred Hutch Cancer Center at the University of Washington. When I talk about high-risk groups, it really falls into two categories, men who have a strong family history and a strong family history means a first-degree relative, father, brother, grandfather that has prostate cancer. 

But when we look at the genetics of prostate cancer it’s not just about prostate cancer itself, what we have found is that things that lead to family histories of breast cancer, ovarian cancer, colon cancer also increase your risk of prostate cancer, for instance, the BRCA gene, which is a breast cancer gene is associated with a marked increased risk of prostate cancer. So, knowing your family history matters and knowing it beyond prostate cancer is important. The other high-risk group as men of African descent or ancestry, we know our Black men have a much higher risk of developing prostate cancer in their lifetime, it’s about a one in six or one in seven risk compared to one in nine in the general population. So, the recommendation I make for these two groups is to consider screening earlier and to do it more frequently. On average, PSA screening happens for men between the ages of 55 and 70 or 74, and it’s usually every two years, if you look at the population level data, I would suggest that you consider screening at age 45 or 40 and doing it every year, however, you’ve got to turn the screening off at some point. So, if your PSA stays low and is non-concerning into your early 70s, then I think you can be reassured that your risk of having a fatal or aggressive cancer is low, and you could safely stop screening. 

Sherea Cary: 

So for someone who has a first-degree relative such as a father who had prostate cancer and maybe even an aggressive form of prostate cancer, it will be important for them to get screened at 40 to start at least having a baseline number to be able to watch it?  

Dr. Nyame:

Absolutely. The baseline number is really a topic of discussion in the urologic community because we know that if you get a PSA at age 40 and it’s above one or above the median for your age group, that you’re at a lifetime risk of having what we call significant cancer, so that’s a cancer that might have the potential to be fatal in your lifetime is higher. And so theoretically, you could get that one-time PSA at 40 and use that as a basis for how intense your screening practice would be. I’ve talked about PSA testing, but screening also involves the digital rectal exam, and it’s important that men understand that both those things together is what leads to a thorough and good clinical evaluation, when it comes to prostate cancer risk.

How Has the Onset of Prostate Cancer Evolved?

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How Has the Onset of Prostate Cancer Evolved? from Patient Empowerment Network on Vimeo.

Prostate cancer diagnostic testing has evolved over time. Watch as expert Dr. Yaw Nyame from the University of Washington shares insight about how prostate cancer diagnostic tests – and, in turn, treatment versus active monitoring are used for patient care.

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Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving?

Transcript:

Sherea Cary: 

Dr. Nyame, how has prostate cancer evolved over the last decade regarding the onset of the disease, the population in which it impacts the care and the treatment? 

Dr. Nyame: 

You know, prostate cancer is the most common cancer in men that is in a solid organ. It affects about one in nine men over their lifetime, and probably the biggest advance or change we’ve seen in the disease occurred in the late ‘80s with the introduction of the PSA test. What that allows us to do is detect cancers very early in their natural life history, if you will, and that gives us the opportunity really to provide treatment when there’s…with an opportunity for cure. The downside to that is not all prostate cancers are the same, we know that some prostate cancers are diseases that men will die with and not from…meaning that some of these cancers that we detect don’t need any treatment or intervention. This means that a lot of research that has occurred in the last decade or two has been focused on helping us determine which cancers deserve treatment and which ones we can watch safely and so some of the biggest advances have been diagnostic tests such as radiology imaging, so we’ve seen things like MRI really come into the mainstay of prostate cancer diagnosis and treatment up front. We have very exciting nuclear medicine scans. 

So, you might hear the term PSM-A as a new test that’s really going to disrupt and change the way the prostate cancer diagnosis and treatment is made. We also have genetic testing that we can do on blood samples, urine samples, and tissue, that might give us some very exciting information about one’s risk of dying from prostate cancer, which ultimately is what we want to know when we’re offering treatment to someone.