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Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing?

Why Should You Ask Your Doctor About Prostate Cancer Genetic Testing? from Patient Empowerment Network on Vimeo.

Why is it genetic testing important when it comes to prostate cancer care? Learn how test results could reveal more about YOUR prostate cancer and may indicate that one treatment may be more effective than another.

See More From INSIST! Prostate Cancer

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Transcript:

Why should you ask your doctor about genetic testing?

The test results may predict how your prostate cancer will behave and could indicate that one type of treatment may be more effective than another type.

Genetic testing identifies specific gene mutations, proteins, chromosomal abnormalities, and/or other molecular changes that are unique to YOU and YOUR prostate cancer.

There are two main types of genetic tests used in prostate cancer:

  • Germline or hereditary genetic testing, which is conducted via blood or saliva and identifies inherited gene mutations in the body. Germline mutations are present from birth and can be shared among family members and passed on to subsequent generations. Results can identify whether you could be at risk for another type of cancer or if your family members may need genetic counseling and testing to guide their own cancer risk.
  • The second is somatic or tumor genetic testing, which is performed through testing tumor tissue or by testing cancer cells/DNA extracted from blood to identify gene mutations that are unique to the cancer itself. It is also commonly referred to as genomic testing, biomarker testing, or molecular profiling. Somatic mutations are NOT inherited and are NOT passed on to subsequent generations or shared among family members.
  • Depending on your history, your doctor may order one–or both–of these types of tests.

So why do the test results matter?

Both germline and somatic mutation testing can identify the presence of certain genetic mutations that may help to guide your treatment plan, and germline testing specifically can inform cancer risk for you and, potentially, family members.

  • In some cases, mutations can indicate that a newer approach, such as targeted therapy or immunotherapy, may work better for you.
  • Results of these tests may also help you to find a clinical trial that may be appropriate for your particular cancer.
  • And, genetic testing results could also show that your cancer has a mutation or marker that may prevent a certain therapy from being effective, sparing you from getting a treatment that won’t work well for you.

How can make sure you have had essential biomarker testing?

  • First, always speak up and ask questions. Remember, you have a voice in YOUR prostate cancer care.
  • Ask your doctor if you have had or will receive genetic testing, including germline and somatic testing, and how the results may impact your care and treatment plan.
  • Ask whether your family members should meet with a genetic counselor or undergo testing to help gauge their risk of developing prostate cancer.
  • And, finally, bring a friend or a loved one to your appointments to help you process and recall information.

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

Expert Perspective on the Future of Prostate Cancer Treatment and Research

Expert Perspective on the Future of Prostate Cancer Treatment and Research from Patient Empowerment Network on Vimeo.

How has prostate cancer treatment and research changed over time? Expert Dr. Maha Hussain shares her perspective about treatment and research progress, the role of the patient, and how to advocate for more research progress in the future.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

See More From INSIST! Prostate Cancer

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Treatment Options for Advanced Prostate Cancer

How Does Genetic Testing Impact Prostate Cancer Care?

An Update on Prostate Cancer Treatment and Research


Transcript:

Katherine:

Dr. Hussain, how do you feel about the future or prostate cancer research, and what would you like patients to know?

Dr. Hussain:

First, let me say that I would love for the patients to know that they are a partner, a most critical partner in the process.

That we need to continue the research and investment in research. It is research that will end up curing cancer. Wishful thinking will not do it. And patient volunteering, which I think is remarkable across all cancers. The business I’m in, the way that drug discovery and evolution often happen because patients volunteered. And without testing these new treatments and combinations, we will not be able to get better results.

And I will tell you that, when I started my training, the median survival for patients with resistant prostate cancer was on the magnitude of about nine months. Now it is three years-plus. Now, you could argue, well, that’s not huge. But that is a huge change because, again, we’re picking up the cancers much earlier. And the patients who had, as I mentioned, metastatic disease, again, the longevity then at the time I was in training, but even afterwards, was give and take in the three years. And now we’re talking six-plus years.

And so, there’s been tremendous progress. And really partnership with the patients and their families and supportive others is very critical, and investment in research. So, yes, advocate constantly for more investment in research.

How Does Genetic Testing Impact Prostate Cancer Care?

How Does Genetic Testing Impact Prostate Cancer Care? from Patient Empowerment Network on Vimeo.

Genetic testing has taken on a vital role in prostate cancer care. Expert Dr. Maha Hussain provides insight about genetics and biomarker testing, how results are used in determining treatment options, and key questions to ask to ensure the best care.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

See More From INSIST! Prostate Cancer

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Treatment Options for Advanced Prostate Cancer

Understanding Prostate Cancer Staging and Progression

How Do Genetic Mutations Impact Prostate Cancer Treatment Options


Transcript:

Katherine:

Many patients are confused about the role of genetics and biomarker testing in prostate cancer care.

For people who haven’t heard of some of these terms before, let’s go into the definitions. So, what is genomic or biomarker testing, first of all?

Dr. Hussain:

So, I think there’s one thing. Maybe I can explain because the wording can be confusing. So, there is the genetics, and there is the genomics. The genetics would be what we inherit from our families. So, this would be present in our body. The genomics testing would be to look for what the structure of the genes of the cancer itself, cancer cells itself. Now, that doesn’t mean that this was inherited. It’s just that this is a renegade, and it evolved. And that is what is going to show up.

The reason these two are important, both of them have implications potentially for treatment or perhaps clinical trials. And again, with the PARP inhibitors, the BRCA-like genes will have implications for treatment sort of for resistance cancers.

With regard to the genetics, the implications are for, again, inheritance of family and potential risk for blood relatives. Now, there are panels that are FDA-approved for the purpose of genetic testing. And the requirement or the indications right now, anybody who presents with metastatic disease or an aggressive disease and diagnosis, the recommendation is to proceed with the genetic testing, certainly counseling and testing, because there are some people who prefer not to be tested. And that’s something else.

What I tell my patients is this, even if the testing is done and it was negative for inherited genes that might put the patient family at potential higher risk, the fact that a person has prostate cancer by default puts potential, adds risks to family, to blood relatives.

And the risks aren’t just for the males with regard to prostate cancer, but certainly breast cancer, ovarian cancer, pancreatic cancer potentially, and things of that sort. So, this is where I think a patient needs to be discussing with their doctors. And certainly, there are many centers that have genetics counselor, and so that’s where I generally refer my patients to. I counsel them myself, and then refer them also for more discussions with genetics counselor.

Katherine:

What exactly are genetic mutations? And how do they impact a treatment path?

Dr. Hussain:

Well, I think, again, it’s the changes that happens in specific genes that may promote the aggressiveness of a cancer. And so, the BRCA gene is one of the oldest genes that have been identified in breast cancer. And essentially, the body regulates itself.

And when cancer cells come up and they sort of – the body no longer sustains that regulation, the genetic regulation in those cancer cells. Those cancer cells will behave the way they want to. That means that they’re going to grow faster. That means they could be resistant to treatment and things like that. And so, that’s what we check for, these alterations. And there are certain medications that would allow – and again, in prostate cancer, it’s not a lot. It’s just, as I said, right now the only things that are proven is the PARP inhibitors. This is essentially to kind of gang over the cancer cell, preventing from allowing it to repair itself so it can continue to grow.

Katherine:

Some patients may not know if they’ve received these important tests. So, for patients that aren’t all that sure, what key questions should they be asking their physician or their specialist?

Dr. Hussain:

So, I would say when it comes to the genetics testing, I believe a patient has to consent.

Because again, we live in the U.S., and this is a private matter for the patient. So, this generally has to be the case. Otherwise, depending on the institution, sometimes some tests will require for the overall testing for looking for any genetic alterations, general tumor alternation. Different centers have different things. But the patient should ask and say to their doctor, “Have my cancer genes been tested? Have my genes been tested? And if they have, what are the results?” Because we generally share with the patients once it’s been done.

The other things I should point out, some of the good things that have happened recently. Up until recently, when it comes to the tumor genomic testing, tissue was required. Nowadays, the FDA has approved blood tests that several companies now run that can actually collect blood sample and basically test it for circulating tumor cell genes there.

Now, no testing is 100 percent perfect. But in situations like patients with prostate cancer who may not have recent tissue or adequate tissue for testing, certainly doing the blood test to verify if there is anything reflective of the genes of the cancer, and that may allow for potential actionable-type treatments. Again, up until now, this is more going to apply for potential clinical trials or resistant metastatic disease.

Treatment Options for Advanced Prostate Cancer

Treatment Options for Advanced Prostate Cancer from Patient Empowerment Network on Vimeo.

What are treatment options for advanced prostate cancer? Expert Dr. Maha Hussain provides a breakdown of hormone therapy and explains how targeted therapy is used in prostate cancer care.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

See More From INSIST! Prostate Cancer

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Transcript:

Katherine:

Now that we understand how test results can help inform a patient’s cancer and how it may behave. Let’s discuss how they can affect treatment options for men with advanced disease. First, let’s do a brief review of the treatment types currently available. There’s hormone therapy, right. What else?

Dr. Hussain:

Perhaps, it’s simpler if we focus on advanced disease, specifically metastatic disease.

So, if that’s the deal, then the backbone of treatment is hormone treatment. And it really is. We call it hormone, but technically it’s an anti-hormone. What we’re trying to do is shut down the hormonal pathway that stimulate the testes, which is the factory that makes testosterone. So, we are looking at shutting down testosterone production from the testes in order to starve the cancer.

Now, the male hormone is produced predominantly – somewhere about 95 percent of it is made by the testes, and then there are about 5 percent-ish that comes from other sources. These are, again, male hormones like the adrenal gland and so on. And there was a while ago some research – I want to say from the MD Anderson crowd, but this is two years ago – that suggested also that the tumor may start to make sort of in-house production of male hormone to support itself.

Now, having said that, again, testes continue to be the source of the majority of the male hormone. And so, historically, the first data that showed benefit was actually by surgically removing the testes, which is what we call orchiectomy or bilateral orchiectomy. And then medications began hitting the market and were evaluated in the late ’80s and then 1990s, beginning with Lupron – which by the way, in the ’80s, it was an injection that the patient had to give themselves every day, which is remarkable.

But even then, there is a personal preference by patients to go and take injections as opposed to go through surgery with orchiectomy. But still, I would say for some patients it may be an option until it ought to be discussed as an option. Then what we know is this, is because of the

potential other sources for the male hormone, the concept of what we call combined androgen depravation was being evaluated.

And again, this goes back to the ’80s when the first drug was flutamide and then bicalutamide, and there are other drugs that became. And they kind of added a sprinkle, I call it, to survival. But it wasn’t dramatic, huge differences in survival. And so, generally, while we used it, everybody believed in using it. Moving forward, the drugs like abiraterone, enzalutamide, apalutamide are the three hormonal drugs that have demonstrated conclusively really an advantage in terms of prolonging life when added to the Lupron.

So, what I tell my patients is that, when it comes to hormone treatment there is really no way around it. You can delay it. Some people are exploring for some patients who don’t have a lot of cancer, maybe a couple of areas, maybe just do targeted radiation and then leave the person alone to buy them some treatment-free time.

And, to me, this is where the discussion that has to happen with the patient. What is the objective? Is the objective to kind of be ahead of the game and maximally treat the cancer with the hope of prolonging life? Or is the objective to delay treatment? And I would tell you that, with these types of conversation, nine out of 10 or 9.5 out of 10 men opt for moving aggressively up front with management. So, that’s that.

Now, the one thing I should point out, one of the trials that also was a landmark trial in this disease was the study CHAARTED, which was an intergroup clinical trial at the time it was designed, led by ECOG, and the PI was Dr. Chris Sweeney. I was part of the team that worked on the design also of the study.

And that was a trial that looked at adding docetaxel to hormone therapy, versus hormone therapy alone, to try to see if it adds something. Historically, all the chemotherapies prior to that that were added to hormone treatment for patients with newly diagnosed metastatic disease had not delivered. And docetaxel did.

However, one thing I should point out, based on that trial – and I don’t want to go into too much details for the sake of time – the patients that seemed to be benefiting were the patients that had more aggressive, more disease in their system. And so, liver metastases, lung metastases spread in the bone at different areas, not like few isolated areas in the spine or the pelvis, but much more than that.

And so, for the patients who have what we call high-volume prostate cancer based on scans – and I’m happy to explain what that means if it’s needed – these are the patients that I would offer either the docetaxel plus hormone treatment, which is the injection, or the injection plus the hormonal pills that I mentioned earlier.

Katherine:

What about targeted therapy? How is that used?

Dr. Hussain:

Okay. So, let’s begin with the molecularly targeted therapy. So, as we speak right now, for patients who have newly diagnosed metastatic disease that we call hormone-sensitive, molecularly targeted therapy is not standard of care. So, I would encourage patients who may qualify for clinical trial to be involved in those. The flipside is – we can talk about it – is that molecularly targeted therapies, specifically with PARP inhibitors have pretty much entered in the space of prostate cancer with a couple of drugs that were FDA-approved.

The other way of targeted treatment, which would be what we refer to targeted radiation, this would be a different story. This is not systemic treatment. This is a local treatment. And what is done is basically if patients do not have a lot of cancer in their body based on scans, and only certain areas, and they are starting systemic therapy, they can certainly consult with a radiation oncologist to target radiation to areas that are visible on scan. So, if somebody has a couple of, let’s say, pelvic bone lesions, maybe a lymph node, and they are already starting systemic therapy, they can consult with a radiation oncologist focal radiation. And so, that would be the general scheme.

Understanding Prostate Cancer Staging and Progression

Understanding Prostate Cancer Staging and Progression from Patient Empowerment Network on Vimeo.

What are the stages of prostate cancer? Expert Dr. Maha Hussain provides an overview of prostate cancer stages and progression – and explains scans that detect disease to aid in optimal care.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

See More From INSIST! Prostate Cancer

Related Resources

How Does Genetic Testing Impact Prostate Cancer Care?

Treatment Options for Advanced Prostate Cancer

Expert Perspective on the Future of Prostate Cancer Treatment and Research


Transcript:

Katherine:

Dr. Hussain, we’re going to spend most of this conversation talking about advanced prostate cancer. But before we move on, would you give us a brief overview of the stages of prostate cancer?

Dr. Hussain:

Absolutely. So, with any cancer, we count sort of like four stages. But I would say in prostate cancer the biggest thing is when the cancer is newly diagnosed, which could be confined to the prostate or locally advanced, meaning the cancer has gotten outside the capsule of the prostate but still within that pelvic region.

There is the group of patients who have pelvic lymph nodes at time of diagnosis. And of course, that is the patients who have systemic disease, which would be technically stage four. Now, the systemic disease implies any abnormality that is found on scans that is beyond the public region. So, that could be lymph nodes in the back of the belly. That could be thoracic lymph nodes. That could be neck nodes. That could be lung lesions, of course, or bone, or liver.

Now, the most common area where the cancer goes to is really – when we talk about metastatic disease – is the bone. And then lymph is another area where the cancer goes to. Prostate cancer that is confined to the prostate is curable in the vast majority of patients. There is a category of men who undergo surgery or radiation, and then their PSA begins to go up afterwards.

And this is what we call biochemical relapse. And this is a situation where we know that, in all likelihood obviously, especially of the patients who have had their prostate out, that the cancer has spread. With the current imagine, a good chunk of times, we do not find anything because we’re able to pick up PSA that goes from undetectable to 0.2 to 0.3, but there’s not enough cancer to show up on the scans. We’re hoping, obviously, the better scans, the PET Axumin scan, the PSMA scans are going to help us to identify sites of metastases.

But this is a group of men where if there is no cancer visible and the only thing we’re dealing with is PSA that’s going up, if they’ve had surgery, then

there’s room for what we call salvage therapy with radiation and hormonal treatment. The case is a bit different if there’s only just the prostate – if radiation was given previously. And of course, we talked about metastatic disease.

Katherine:

Once someone has been diagnosed, what tests are used to help understand the aggressiveness of their disease and their overall prognosis?

Dr. Hussain:

Well, I think there is different basic things, as in, what was the extent of the cancer? How did it look under the microscope? And what is the PSA levels? So, these are the general things. There are different sort of genomic panels that the urologist will use to kind of decipher and other things to kind of help with figuring out aggressiveness and things like that. What I would say is this, is a patient who is diagnosed and has a cancer, and at a minimum has what we consider a Gleason 7 prostate cancer – so, that’s the scoring system that is done with the original Gleason score, or the new patterns where it’s talking about intermediate risk to high risk – to me, this is a cancer that needs to be treated.

And again, that’s all to do with if a person has other comorbidities, they have some other terminal condition that’s a separate story. But talking generically, that would be when we would recommend. And these are the patients that are generally not seen by the medical oncologist. They’re seen by the urologist, and then they can refer them to radiation oncology also for consultation.

Is the COVID Vaccine Safe and Effective for Prostate Cancer Patients?

Is the COVID Vaccine Safe and Effective for Prostate Cancer Patients? from Patient Empowerment Network on Vimeo.

 What do prostate cancer patients need to know about COVID-19 vaccines? Expert Dr. Maha Hussain discusses COVID-19 vaccine safety and effectiveness — and what she’s seen with COVID-19 vaccination with her patients.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

See More From INSIST! Prostate Cancer

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COVID Vaccines: What Do Prostate Cancer Patients Need to Know?


Transcript:

Katherine:

Is the COVID vaccination safe and effective for prostate cancer patients?

Dr. Hussain:

The answer is yes and yes. So, I have to say, by default, I deal mostly with older men. Age brings in other comorbidities. And certainly, while I see all kinds of shades of gray in terms of the disease extent, going all the way from newly diagnosed all the way to end-stage disease, the bulk of the patients I end up seeing tend to have more systemic disease and have other issues going on. And I have to say, surprisingly, less than a handful of my patients had the infection.

Only one required hospitalization with supportive measure, but not even needed incubation; however, he needed a lot of CPAP and other respiratory support. I’m not aware of any of my patients or my colleague’s patients who deal with prostate cancer that have died from COVID. So, I would say that’s the good news and that we have not seen a big hit in the population that I deal with.

I also know that I would say 99.9 percent of my patients have opted to be vaccinated, and they have tolerated the vaccine just fine. There’s only one case, which I actually even saw just this week, who had been vaccinated but have a very, very severe end-stage disease with significantly compromised bone morrow, who got infected but hospitalized for a few days and is recovering.

And so, I would say just by the pool of patients I see, my answers are yes and yes.

Katherine:

Very good. Thank you.

Dr. Hussain:

And I would encourage all the audience to go get vaccinated. I myself am vaccinated. And I’ve advised all my family members to be vaccinated, just to clarify that too.

Prostate Cancer Treatment and Research News

Prostate Cancer Treatment and Research News from Patient Empowerment Network on Vimeo.

Prostate cancer experts recently gathered at the American Society of Clinical Oncology (ASCO) annual meeting to share research updates. Expert Dr. Maha Hussain reviews clinical trial findings presented at the meeting, potential treatments for FDA approval, and credible sources for prostate cancer research information.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

See More From INSIST! Prostate Cancer

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Transcript:

Katherine:

I’d like to start by asking about developments in prostate cancer research and treatment. Experts recently gathered at the annual American Society of Clinical Oncology meeting, also known as ASCO, to share their research.

So, what were the highlights from that meeting that you feel patients should know about?

Dr. Hussain:

I think probably perhaps I can focus on two major – what I would consider major highlights, and those were the results from two randomized Phase III clinical trials.

One of the trials is called the VISION trial. And the VISION trial was a Phase III randomized trial evaluating lutetium-PSMA-617 treatment in patients with metastatic castration-resistant prostate cancer. And the delightful thing about this study is that that study was positive. The PSMA story has been really going on for a few years now. And there’s the PSMA for purposes of scans, imaging, to assess the cancer. And the FDA just approved a PSMA PET imaging this year.

I think it was in May when it was approved. And that would help better define if the cancer is spread or not, and it help with the decision regarding treatment. But the second part is treatment purposes, so identifying the cancer location and trying to attack it with a specific sort of targeted attack to the tumor is really important.

And so, the FDA is currently looking at this particular agent. And I am hopeful that we will hear soon from the FDA, hopefully before the end of the year, and maybe – who knows? – maybe by summer, middle summer or end of summer. Because I do think that would be a major benchmark in there. And so, that’s one thing.

The other clinical trial that I thought was interesting from a data perspective – and for disclosure, I am one of the investigators on this study. And this was an intergroup Southwest Oncology, or SWOG, sponsored clinical trial. So, it’s a federal study that Dr. Aggarwal presented. And this was a study that was aiming at maximizing, again, the anti-tumor therapy with the use of a drug which I call is the younger brother of abiraterone.

So, abiraterone is a drug that is FDA-approved and has been around for several years right now for both castration-resistant prostate cancer and certainly hormone-sensitive metastatic disease. And so, TAK 700 (Orteronel) is a younger brother, I call it, of abiraterone (Zytiga). And one of the potential advantageous when this trial was designed was the fact that you don’t need to use prednisone. And the trial was completed. It was a national clinical trial. And what was interesting is that there is certainly what appears to be a potential benefit, but not in terms of the conclusive based on the way the study was designed.

Having said that, what I thought was remarkable is that patients who basically were only on the control arm was LHRH therapy, so this could’ve been like leuprorelin (Lupron), goserelin (Zoladex), or something like that plus bicalutamide, which is what we call combined androgen deprivation. And that was sort of like the strongest control arm we could do at the time when the trial was designed.

Remarkably, the patients who were on that arm had a median survival of basically 70 months. That’s the median. That’s the bell-shaped curve with the number in the middle. Seventy months is probably the longest ever in any other randomized trials in this disease space, in the hormone-sensitive space. So, that tells us is that men are living longer with prostate cancer, even though it’s metastatic disease; and, yes, it’s not necessarily curable, but men are living longer. And it’s a function of all of the better treatments that are supportive care and everything that was going on.

And so, the control arm, as I mentioned, was the 70.2 months. The actual experimental arm was about 81.1 months. And again, I don’t know where things will go from this. Obviously, I’m not the sponsor not the FDA. But the point here is that men are living longer, and so wellness and health become even more so important than we ever did. And as I tell my patients, every day you’ll live longer. The odds of living longer is there because of better treatments coming on.

So, to me – not to take too much time from the interview – to me, these were the two highlights: new, approved – I’m sorry, new treatment that I’m hoping will be FDA-approved and, obviously, the fact that men are living longer.

Katherine:

How can patients keep up to date on the research that’s going on?

Dr. Hussain:

I’m a bit biased, obviously. I’m a member of ASCO.

And what I would recommend to my patients is to look at the cancer.net website. The cancer.net is a website that is an ASCO-generated website specifically for patients and families to review. It is vetted. The committees are not run just by physicians, oncologists, a multidisciplinary team, but also patient representative. So, the lingo and the presentation are lay-friendly, I call it, there.

The other part I would say, the NCI website, and the American Cancer Society, the American Urological Association. I would say there’s a lot of stuff on the media. The difficulty is vetting what is sort of fake, what is not so accurate, or bias versus there. I also think that the NCCN has also some resources for patients.

And one thing I always tell patients: explore, look, but make sure that you talk to your doctor about the meanings of everything because sometimes it can be not – it could be misleading, I should say, or maybe not very clear on what the implications are.

How Can Prostate Cancer Patients and Providers Help Ensure Quality Care?

How Can Prostate Cancer Patients and Providers Help Ensure Quality Care? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients and providers help ensure quality care? Host Dr. Nicole Rochester asks Dr. Petros Grivas to share insights about available patient resources and ways that providers can help extend improved prostate cancer diagnostics and treatments to patients for better care.

See More From Best Prostate Cancer Care No Matter Where You Live


Related Resources:

How Can I Get the Best Prostate Cancer Care No Matter Where I Live?


Transcript:

Dr. Nicole Rochester: 

So, Dr. Grivas, how can we ensure that a patient’s geographic location doesn’t dictate the quality of care that they receive? 

Dr. Grivas: 

A very important question for sure, and I think as you point it out, we have touched upon this before, but I think it is definitely much more to be said and done. More importantly, I think the location has to do with multiple differences in social constructs, right? The location of the distance from a cancer center with expertise is one thing at the time to get to the cancer center is related to that, and also the social support that the patient may have, if for example, a particular treatment, for example, a clinical trial, the requires a weekly visit to the cancer center, is that the feasible thing for the patient who lives miles and miles away in the rural areas of Oklahoma or somewhere else. Can we design clinical trials that are more friendly to these scenarios that require less frequent visits. Can we provide, if possible, funding for housing closer to the cancer center, and there are examples of cancer centers doing that. They provide temporary housing for the patient to be able to be close to the cancer center, so they don’t even worry about going back and forth across the state lines sometimes. 

The other thing, of course, is insurance coverage, and again, this can have some relation to location, and it’s something we have to think about, how can we help our patients who have significant co-pays because of the recommended insurance to that location being supported by foundation or all other funds that the cancer center or the state, or again, other foundations, we have. The other issues about diagnostics and treatments, there has been some interesting discussion about particularly prostate cancer, about access to what we call next generation sequencing, which is a diagnostic test aiming to profile or fingerprint the cancer DNA to look for particular mutations that the cancer may have that may lead to a particular treatment options. 

 If, for example, mutation A is present, can we use a drug X that might be relevant in that context of a mutation and a recent data that was presented at ASCO 2021 showed that if you look at those mutations, they’re not very different between, for example, white and Black patients, there are similar types and frequencies of mutations. What is different is access to the test and, of course, access to the therapy of the test. So, I think we have to do a better job bringing ourselves to the community, extending our opportunities to the patient to get connected with the healthcare system, and they’ll build bridges to bring the patient and closer to the cancer center offering those tests. Work with patient navigation to help patients understand the significant value of the follow-up, but also provide them with a way that there’s equitable access to diagnostics and treatments. 

What Are Key Prostate Cancer Questions to Ask Care Team Members?

What Are Key Prostate Cancer Questions to Ask Care Team Members? from Patient Empowerment Network on Vimeo

What are key prostate cancer questions to ask care team members? Host Dr. Nicole Rochester and Dr. Yaw Nyame, and Dr. Petros Grivas provide information about vital questions to ask care providers about prostate cancer diagnosis and treatment options to work toward improved quality of life and equitable healthcare.

See More From Best Prostate Cancer Care No Matter Where You Live


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What Barriers Do Prostate Cancer Patients Face When Seeking Care?

How Can Prostate Cancer Patients and Providers Help Ensure Quality Care?


Transcript:

Dr. Nicole Rochester: 

I’d love for each of you to share maybe a couple of key questions that patients, our care partners facing prostate cancer should ask of their treatment team to ensure that they’re receiving appropriate care. 

So, we’ll start with you, Dr. Nyame. Any key questions that patients should be asking their care team when they seek treatment or diagnosis of prostate cancer? 

Dr. Nyame: 

Absolutely, I think that there’s a long list. Actually, I’ll tell you, my new prostate cancer diagnoses visits are usually my longest because there’s a lot to consider. I do think depending on what you’re having done and what you’re being considered for, so let’s say in the localized setting, prostate cancer is confined to the prostate, and you’re thinking about treatment like a surgery or radiation therapy, you really want to know what that center and what that provider’s experience is because we have a lot of supporting evidence that the more people doing this…no one’s going to be surprised by what I’m about to say, but the more that someone does is the better they’re going to be at it. Okay, and so making sure your team has a good experience with what you’re seeking to have done is important, and I think it’s well within your rights as a patient to understand that, so I think advocate for that. Secondly, I think basic questions, just to understand the relationship, I think…I like it when patients want to know a little bit about me because I’m going to be…they’re going to be in my hands. And so again, the importance of that relationship building and your visit is crucial. 

Lastly, I think when you come to the visit, have a list of questions based off of what you’ve researched and write them down, I find my most sophisticated patients or crossing off questions as I’m talking, because they came prepared and so that preparation…the act of doing a little bit of reading, there are a lot of resources, the Prostate Cancer Foundation, for instance, has a very nice patient guide that’s written by patients and language that’s really digestible and edited by experts, and so going through that and coming with your list of questions, I think is a really important thing for your visit, and those are just a few things I can think of that can lead to a meaningful clinic visit and exchange. 

Dr. Nicole Rochester: 

Excellent, I’m a huge fan of questions and being prepared for visits. What about you, Dr. Grivas, are there one or two key questions that you feel patients or their care partners should ask? 

Dr. Grivas: 

Great answers by Dr. Nyame, I totally agree. I think started with the basics, “What this diagnosis means for me, what is the current extent of the cancer,” we call the states, and “What is the outlook, what is the overall prognosis or at least estimate of the outcome?” That’s a reasonable question to ask and again some places more detail, some others may not, and it’s important for us also to ask the base and what they want to know, how much they want to know, I would take in things of them, they want to know the entirety of the information because it makes…help them make decisions. The other, I think it’s important point, “What are the treatment options and what is the intent of the treatment, what are we trying to achieve by giving treatment, Are we trying to cure, eradicate or eliminate the culture, are we to prolong life, are we trying to improve quality of life or are we just trying control the cancer? So, what are the goals of the treatment and what are the metrics of success, so what will be a successful outcome of that treatment? How do we measure that?” And I think it’s also important. 

Two more points, I would if I may. I think, again, going back to the importance of genetic counseling even more in prostate cancer, I think we recognize the importance in the aspect of patient treatment because some treatment options may depend on finding mutations. But also, the importance of the family, how much can prevent cancers in the brother family, close and extended family, if we find the mutation, can we set this mutation for other family members and do screening to prevent cancer prevention is ideal if we can do that and I think that’s a good discussion, so the patient can come to the visit if possible, by doing some homework about the family history. It’s hard for of us now, what’s happening in that chasm, right? But we do have the time to be informed of the importance of the question, this can help and expedite in our resources like to genetic counseling. And the last points, research, I want to again make the point, we should all do a better job to offer innovative clinical trials to patients across races, and it should be a very important point again equitable healthcare. And the patient should ask are clinical trials an option for me and do I have a clinical trial option? And I think it’s a great question, and hopefully this can help the patient get to integrative treatment, but also help the field. 

The research would get important answers, and the important answers can be for all the community and the specific populations, if we do trials, clinical trials with only the white patients, do we have the answer for the Black patients, or we have the answer for both and other races and ethnicities as well. 

Dr. Nyame: 

And I do want to take this opportunity to add one more thing because Dr. Grivas was talking about what does your treatment mean for you, and in this discussion about prostate cancer, we cannot talk about what questions do you bring without mentioning the impact, quality of life of our treatments? And I think that sometimes this is the elephant in the room that leads to the decision to not pursue treatment, and so I want to take this opportunity as the urologist to say this is the time to talk about what treatment is going to do for sexual function. This is the time to talk about what treatment means for your urinary symptoms and quality of life, a good and healthy discussion around these things need to happen during your visit, because I think sometimes what patients expect to have happen with treatment and reality don’t match. And you have an expert in front of you that can really give you some input as to what to expect, and in a similar vein, when you meet with survivors, these are some of the things that I know patients tell me they’re worried about, and these are people who are living it, that can give you really valuable information on that piece of quality of life, and I hope that those conversations can help us close that treatment disparity that we see between Black men and white men with prostate cancer. 

What Are Some Practical Solutions to Prostate Cancer Care Barriers?

What Are Some Practical Solutions to Prostate Cancer Care Barriers? from Patient Empowerment Network on Vimeo.

Are there practical solutions to removing prostate cancer care barriers? Host Dr. Nicole Rochester, Dr. Yaw Nyame, and Dr. Petros Grivas provide insight on how solutions to barriers can be approached and share some support resources for improved patient outcomes.

See More From Best Prostate Cancer Care No Matter Where You Live


Related Resources:

What Barriers Do Prostate Cancer Patients Face When Seeking Care? 


Transcript:

Dr. Nicole Rochester: 

Let’s shift to solutions and what are some of the solutions that you all recommend for some of these barriers, as physicians, a lot of that is going to be out of your purview, but I’d love for each of you to suggest any solutions for our patients and care who may be facing some of these barriers, so this time we’ll start with you, Dr. Nyame. 

Dr. Nyame: 

This is an area where I think we need to do better in collecting information to understand where the need is, and so I think there is a very much a need for translational health services or patient-centered research, where we do the simple thing, if I was going to open up a lemonade stand in the middle of Seattle, I’d probably ask a few people what their needs are around lemonade before I open the stand, and I think in medicine, we often offer our services and solutions without having had that simple conversation of What are the needs? I think in addition to that, we have to understand that equitable care might mean offering additional services for certain populations, so for us at our cancer center, for instance, we’ve recently instituted a patient navigator program, something that’s been around for a long time, and other sites but it’s allowing us to do that, go through that exercise of providing some equitable care by helping people coordinate appointments, find their way to financial resources that might support them, and just to be there as a support in the very difficult time of having a new cancer diagnosis, so I think that’s a well-proven and well-established method for helping people get access to care. 

The other thing I’ll add is that we make decisions, I think as humans, we make decisions through community, and sometimes that’s our partner, sometimes that somebody at the gym, sometimes that’s a co-worker, and there are a lot of really fantastic patient advocacy networks that exist that can help people find this new community, and I think cancer patients share a very unique bond and in a very unique way to communicate with one another because they’re living through this particular diagnosis, and so for in the case of prostate cancer, especially prostate cancer in Black men, you have the Prostate Health Education Network, you have Zero Cancer, you have Us TOO, you have the Prostate Cancer Foundation, probably leaving some advocacy groups off and I’m probably going to get in trouble, but I think that there’s that opportunity to reach out to others and just learn…what did you go through, what worked for you? How can I meet my goals of care through just conversation with other patients and survivors, and I’ll try to leave something for Dr. Grivas to the conversation because clearly I could go on and on. 

Nicole Rochester: 

Dr. Grivas? 

Dr. Grivas: 

I’ll tell you that I’m learning every day from Dr. Nyame, his fantastic work in this important topic, and I think he covered the answer so well. If I can just add a few more things just to expand on this of sorts, and these are things that already he’s doing in his programmatic development in our institution as well. I think one of the important things we have to acknowledge all of us is the issue of systemic racism and implicit bias that I think you referred to Dr. Rochester. I think the more we talk about, the more transparent we are with it, the better because we can think about what are unconscious or subconscious thoughts that we may have, you know, “This patient doesn’t care about themselves. Why should we go the extra mile to help them?” We should go the extra mile to help them, because this patient may have less inside of the situation, and they need more resources and as a healthcare system, we should try to earn that patient, right? We should not let that patient go, because every patient matters, right? And I think every life matters. I think that’s important. I think overall a systemic issue to discuss. The other thing is getting our sense of the community, and I think the examples of studies we have done in the clinic and other areas that we try to utilize the wisdom and the help of local leaders in those communities for example, underserved populations go to local churches or barber shops or gyms as Dr. Nyame mentioned and collaborate, work with the local leaders and see how we can have a dialogue with the patients there? How can we establish this trust that may be missing, how we can convey that health is important, and prevention is important, and treatment is important, how can we help with financial constraints, right? How can we get patients to the cancer center without them having to worry about how to get there, how can we reach out and have screening in the present county screening in the community, if it’s indicated then access to care telemedicine, and that brings an issue, do the patients have equipment for telemedicine, a computer, we take it for granted, but it may not be. So given those resources, organizing some local centers with this Men’s Health Day, just to get people in a room and educate them, but also learning from them what are the barriers to take it into account, not talk down to them, but learning with them and from them. 

The other thing is research and that will have to do a better job to include an offer in an equitable manor clinical trials to our patients including patients from different races and we are doing, I think, overall, okay, but we are not doing enough, we have to do better in order to provide this opportunities to our patients and the role of patient navigators is great. We can set examples, and we have patients who feel much more comfortable when they have a patient navigator. Sometimes if it happens to be in the same race with a patient then the patient feels more comfortable. They have someone that they can trust or it will be easier to talk to, and I think we should definitely improve and work harder to provide access to research inequitable manor to our patients. The last point I would say is, patient co-pay assistance programs and foundations, I think we can definitely include more resources to our patients, philanthropy, foundation support and state programs in order to give those patients the resource they need again to achieve this holy grail, which is equitable health care. 

What Barriers Do Prostate Cancer Patients Face When Seeking Care?

What Barriers Do Prostate Cancer Patients Face When Seeking Care? from Patient Empowerment Network on Vimeo.

What barriers do prostate cancer patients face in gaining access to care? Host Dr. Nicole Rochester and Dr. Yaw Nyame and Dr. Petros Grivas share their perspectives on factors that impact access to care and ways some barriers can be removed to improve prostate cancer care.

See More From Best Prostate Cancer Care No Matter Where You Live


Related Resources:

How Can I Get the Best Prostate Cancer Care No Matter Where I Live?


Transcript:

Dr. Nicole Rochester: 

Drs. Nyame and Grivas, we know that location, socioeconomic status, insurance, financial hardships, lack of urologists in rural areas, geographic distance services and access to transportation all play an important role in the outcomes for patients and families facing a prostate cancer diagnosis. So, I want to start with our first question, and we’ll start with you, Dr. Grivas, what are some of the barriers, both prostate cancer patients and their care partners face when seeking care? 

Dr. Grivas:

The number of those factors have to do with the location of the patient as you mentioned, patients regardless of race, if they live in a rural community, then they have less communication or contact with a medical care system, and that’s in all reality there’s data suggesting that a cruelty to states this access to care issue is becoming more and more noticeable, and the distance involved in some ways to get a medical facility, let alone a specialized medical facility, specialized in-person culture. It can be a big problem. The other issue that we have seen many times, again, in some communities more than others, is a healthcare literacy and the preventive mindset as I call it, and that again, can transpire across races, but maybe even more intense in some of the populations. And when I talk about health literacy and preventive mindset, it’s about the relationship, an individual of the healthcare system, and sometimes the distrust, right, that may take place and also the, I would say comfort that the patient has to enter and access a medical care system that they can allow the providers to take care of them, and these are real, I would say, examples that we have seen based on having this concern of letting sales be taken care of in a medical system, competing problems and barriers include financial contraction, that’s a big one.  

Insurance coverage. We know that patients who…I would say social determinants of health may have not very good coverage, and this may be restricting award medical facilities that they can access, and also the cost of care, co-pays, for example, when diagnostic tests or acute interventions for orderly available agents can be a big carrier and no compliance can be diminished with co-pay. Of course, you mentioned many other factors, transportation issues, finding coverage of work, getting day off work can be a problem for some patients, and also the cost of transportation or lodging or parking sometimes can be a problem or even the anxiety to go to a big city and deal with a traffic, of course. So there are many factors, of course, but I think we have to have a systematic approach how to catalog them and address them in a comprehensive way, and I think there are some improvements and we can talk about them today, for example, telemedicine and others, but I think the list is long, and we have to keep an open mind and engaged patient advocates in cataloging those barriers. Maybe Dr. Nyame can comment further in that regard. 

Dr. Nicole Rochester: 

You covered a lot of ground, and I appreciate that. Dr. Nyame, I’d love for you to either add to that list or maybe expand based on your perspectives. 

Dr. Nyame: 

Dr. Grivas didn’t leave me with much to cover, which is great. I think what you hear, in his answer to that question is that this is really a social issue, and I think when we talk about inequities in health, we have to recognize that race in this country, and many places around the world really reflects a social construct, and so the things that really predict how people are going to be able to utilize our services and how well they’re going to do reflect that greater social context, and so to me…you have to meet the patient where they are. And the strength of the relationships that you can build between the healthcare system and the communities that are at risk, especially the ones that have the highest disproportionate risk of bad outcomes or not being able to utilize services is important. And so the barriers include all the things we talked about, but a lot of them that we’ve talked about have been very much healthcare-facing, so we talk about transportation, what we mean that in the source of transportation to our facilities or we talk about money, but we talk about money and the ability to pay for our services, we also miss the other ways in which those social barriers and factors impact the ability to prioritize one’s health. 

Dr. Nyame: 

And so that is a really big problem. And something that we also need to put in the context of this conversation. I think when we take the covers off and we really see what our patients’ lives are like, sometimes we recognize that it’s not just about their ability to utilize the services that we provide, but that there are bigger issues at hand that also need addressing. Those aren’t in Dr. Grivas and I’s domain, but I think we have to understand those things to meet our patients where they are. 

Dr. Nicole Rochester: 

Absolutely, I really appreciate that both of you have really focused on those social determinants of health. I appreciate you mentioning racism, and the fact that the patients being able to prioritize their health, I think historically in medicine, we have blamed our patients for not taking care of themselves, so to speak, without a full appreciation of all of these barriers that both of you have just identified, so I really appreciate that. 

Guide: Which Prostate Cancer Treatment Is Right for You? What You Need to Know

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How Can I Get the Best Prostate Cancer Care No Matter Where I Live?

How Can I Get the Best Prostate Cancer Care No Matter Where I Live? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients ensure they get quality care even if they live in rural areas? Noted experts, Dr. Petros Grivas and Dr. Yaw Nyame share advice and discuss how to receive optimal care no matter your geography or financial status. Learn about resources and digital tools you can utilize to ensure better care no matter where you live. 

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Related Resources:


Transcript:

Dr. Nicole Rochester: 

Hello and welcome. I’m Dr. Nicole Rochester, your host for today’s Patient Empowerment Network program, and we are so happy that you’ve tuned in. Today we’re going to be talking about how prostate cancer patients can truly get the best care no matter where you and your family live, we’re going to talk about things like how can I remove roadblocks in my care to gain access to state-of-the-art treatment? Will my insurance limit me if I wanna get a second opinion as a care partner, how do I best advocate for my loved one and is a clinical right for me? The answers to some of these questions we receive revolve around awareness, feeling empowered to ask questions and connecting to the right resources at the right time. In this program we’ll be learning just that as we meet our experts. It is my honor and privilege to be joined by Dr. Petros Grivas, Associate Professor and clinical director of the genitourinary cancer program at the University of Washington. And Dr. Yaw Nyame, Assistant Professor in the Department of Urology at the University of Washington. Thank you so much for joining us today, gentlemen. 

Dr. Nyame:

Thank you for having us. 

Dr. Grivas: 

Thank you so much for having us. It’s an honor and pleasure to be with you. 

Dr. Nicole Rochester: 

It is my honor as well. Please remember that this program is not a substitute for seeking medical care, so please be sure to connect with your healthcare team on the best options for you. Now, let’s take a few minutes to set the stage and give a brief overview of barriers in the way of achieving equitable prostate cancer treatment. Doctors Nyame and Grivas, we know that location, socioeconomic status, insurance, financial hardships, lack of urologists in rural areas, geographic distance services and access to transportation all play an important role in the outcomes for patients and families facing a prostate cancer diagnosis. So, I wanna start with our first question, and we’ll start with you, Dr. Grivas, what are some of the barriers that prostate cancer, let me do that one again. What are some of the barriers, both prostate cancer patients and their care partners face when seeking care? 

Dr. Grivas: 

Thank you so much. These are really important discussions, and I’m glad we’re doing this program. I think you covered a number of those barriers in your introduction, and I would definitely agree with all of them because many of them are important. The number of those factors have to do with the location of the patient as you mentioned, patients regardless of race, if they live in a rural community, then they have less communication or contact with a medical care system, and that’s in all reality there’s data suggesting that a cruelty to states this access to care issue is becoming more and more noticeable, and the distance involved in some ways to get a medical facility, let alone a specialized medical facility, specialized in-person culture. It can be a big problem. The other issue that we have seen many times, again, in some communities more than others, is healthcare literacy and the preventive mindset as I call it, and that again, can transpire across races, but maybe even more intense in some of the populations. And when I talk about health literacy and preventive mindset, it’s about the relationship, an individual of the healthcare system, and sometimes the distrust, right, that may take place and also the, I would say comfort that the patient has to enter and access a medical care system that they can allow the providers to take care of them, and these are real, I would say, examples that we have seen based on having this concern of letting sales be taken care of in a medical system, competing problems and barriers include financial contraction, that’s a big one. 

Insurance coverage. We know that patients who… I would say social determinants of health may have not very good coverage, and this may be restricting award medical facilities that they can access, and also the cost of care, co-pays, for example, when diagnostic tests or acute interventions for orderly available agents can be a big carrier and no compliance can be diminished with co-pay. Of course, you mentioned many other factors, transportation issues, finding coverage of work, getting day off work can be a problem for some patients, and also the cost of transportation or lodging or parking sometimes can be a problem or even the anxiety to go to a big city and deal with a traffic of course. So there are many factors, of course, but I think we have to have a systematic approach how to catalog them and address them in a comprehensive way, and I think there are some improvements and we can talk about them today, for example, telemedicine and others, but I think the list is long, and we have to keep an open mind and engaged patient advocates in cataloging those barriers. Maybe Dr. Nyame can comment further in that regard.  

Dr. Nicole Rochester: 

Thank you so much, Dr. Grivas, yeah, you covered a lot of ground, and I appreciate that Dr. Nyame I’d love for you to either add to that list or maybe expand based on your perspectives. 

Dr. Nyame:

Dr. Grivas didn’t leave me with much to cover, which is great. I think what you hear, in his answer to that question is that this is really a social issue, and I think when we talk about inequities in health, we have to recognize that race in this country, and many places around the world really reflects a social construct, and so the things that really predict how people are going to be able to utilize our services and how well they’re going to do reflect that greater social context, and so to me… You have to meet the patient where they are. And the strength of the relationships that you can build between the healthcare system and the communities that are at risk, especially the ones that have the highest disproportionate risk of bad outcomes or not being able to utilize services is important. And so the barriers include all the things we talked about, but a lot of them that we’ve talked about have been very much healthcare-facing, so we talk about transportation, what we mean that in the source of transportation to our facilities or we talk about money, but we talk about money and the ability to pay for our services, we also miss the other ways in which those social barriers and factors impact the ability to prioritize one’s health. 

And so that is a really big problem. And something that we also need to put in the context of this conversation. I think when we take the covers off and we really see what our patients’ lives are like, sometimes we recognize that it’s not just about their ability to utilize the services that we provide, but that there are bigger issues at hand that also need addressing. Those aren’t in Dr. Grivas and I’s domain, but I think we have to understand those things to meet our patients where they are. 

Dr. Nicole Rochester: 

Absolutely, I really appreciate that both of you have really focused on those social determinants of health. I appreciate you mentioning racism, and the fact that the patients being able to prioritize their health, I think historically in medicine, we have blamed our patients for not taking care of themselves, so to speak, without a full appreciation of all of these barriers that both of you have just identified, so I really appreciate that. 

So we started slightly to talk about solutions, but let’s shift to solutions and what are some of the solutions that you all recommend for some of these barriers, and like you said, as physicians, a lot of that is going to be out of your purview, but I’d love for each of you to suggest any solutions for our patients and care who may be facing some of these barriers, so this time we’ll start with you, Dr. Nyame.  

Dr. Nyame: 

This is an area where I think we need to do better in collecting information to understand where the need is, and so I think there is a very much a need for translational health services or patient-centered research, where we do the simple thing, if I was gonna open up a lemonade stand in the middle of Seattle, I’d probably ask a few people what their needs are around lemonade before I open the stand, and I think in medicine, we often offer our services and solutions without having had that simple conversation of What are the needs? I think in addition to that, we have to understand that equitable care might mean offering additional services for certain populations, so for us at our cancer center, for instance, we’ve recently instituted a patient navigator program, something that’s been around for a long time, and other sites but it’s allowing us to do that, go through that exercise of providing some equitable care by helping people coordinate appointments, find their way to financial resources that might support them, and just to be there as a support in the very difficult time of having a new cancer diagnosis, so I think that’s a well-proven and well-established method for helping people get access to care. 

The other thing I’ll add is that we make decisions, I think as humans, we make decisions through community, and sometimes that’s our partner, sometimes that somebody at the gym, sometimes that’s a co-worker, and there are a lot of really fantastic patient advocacy networks that exist that can help people find this new community, and I think cancer patients share a very unique bond and in a very unique way to communicate with one another because they’re living through this particular diagnosis, and so for in the case of prostate cancer, especially prostate cancer in black men, you have the Prostate Health Education Network, you have Zero Cancer, you have Us TOO, you have the Prostate Cancer Foundation, probably leaving some advocacy groups off and I’m probably gonna get in trouble, but I think that there’s that opportunity to reach out to others and just learn… What did you go through, what worked for you? How can I meet my goals of care through just conversation with other patients and survivors, and I’ll try to leave something for Dr. Grivas to the conversation ’cause clearly I could go on and on. 

Nicole Rochester: 

Dr. Grivas? 

Dr. Grivas: 

I’ll tell you that I am learning every day from Dr. Nyame. He’s fantastic work in this important topic, and I think he covered the answer so well, if I can just add a few more things just to expand on this sorts. And these are things that already he’s doing in his programmatic development in our institution as well. I think one of the important things we have to acknowledge is the issue of systemic racism and implicit bias that I think you referred to Dr. Rochester. I think the more we talk about, the more transparent we are with it, the better because we can think about what are unconscious or subconscious thoughts that we may have, you know this patient doesn’t care about themselves. Why should we go the extra mile to help them? We should go the extra mile to help them because this patient may have less inside of the situation, and they need more resources and as a healthcare system, we should try to earn that patient, right? We should not let that patient go because every patient matters, right? And I think every life matters. I think that’s important. I think overall a systemic issue to discuss. The other thing is getting our sense of the community, and I think the examples of studies we have done in the clinic and other areas that we try to utilize the wisdom and the help of local leaders in those communities for example, underserved populations go to local churches or barber shops or gyms as Dr. Nyame mentioned and collaborate, work with the local leaders and see how we can have a dialogue with the patients there. How can we establish this trust that may be missing, how we can convey that health is important, and prevention is important, and treatment is important, how can we help with financial constraints, right? How can we get patients to the cancer center without them having to worry about how to get there, how can we reach out and have screening in the present county screening in the community, if it’s indicated then access to care telemedicine, and that brings an issue, do the patients have equipment for telemedicine, a computer, we take it for granted, but it may not be. So given those resources, organizing some local centers with this Men’s Health Day, just to get people in a room and educate them, but also learning from them what are the barriers to take it into account, not talk down to them, but learning with them and from them. 

The other thing is research and that will have to do a better job to include an offer in an equitable manor clinical trials to our patients including patients from different races and we are doing, I think, overall, okay, but we are not doing enough, we have to do better in order to provide this opportunities to our patients and the role of patient navigators is great. We can set examples, and we have patients who feel much more comfortable when they have a patient navigator. Sometimes if it happens to be in the same race with a patient then the patient feels more comfortable. They have someone that they can trust or it will be easier to talk to, and I think we should definitely improve and work harder to provide access to research inequitable manor to our patients. The last point I would say is, patient co-pay assistance programs and foundations, I think we can definitely include more resources to our patients, philanthropy, foundation support and state programs in order to give those patients the resource they need again to achieve this holy grail, which is equitable health care. 

Dr. Nicole Rochester: 

I love that you all are focusing on equity, which as we know, is giving every patient what they need in order to achieve their optimal health, and as both of you have stated, that’s very different than equality, and so this concept that we really have to meet our patients where they are, and that some of our patients may be a little bit more than others, and that’s okay, in fact, that’s really what we have to do in order to eliminate these disparities, so I really appreciate both of your thoughts and that’s a great lead in to our next segment, which is really focused on racial and ethnic disparities, and both of you have kind of touched on this a little bit already, so we know that there are as with every other type of cancer and every other disease, there are significant health disparities with BIPOC patients, and so Dr. Nyame, I’d love for you to talk about specifically with prostate cancer, some of the disparities that you see in your practice and in your research, and then what are some things that patients of color can do to protect themselves from these inequities? 

Dr. Nyame: 

This is a very important topic for me, it’s something that I am very passionate about, and as Dr. Grivas alluded to am doing a lot of research on, and I think the statistics are so grey. Black men are 80% more likely to be diagnosed with prostate cancer. So the average man in the United States has a one and nine lifetime risk of being diagnosed prostate cancer, that’s probably one in six or one in seven black men. Black men are twice as likely to die from prostate cancer compared to men of other races and ethnicity in the United States, and a lot of this is driven by the social milieu and factors that we’ve talked about today. What troubles me is when we talk about these statistics, I fear that that in of itself is crippling for some black men. If I have this diagnosis and I’m not gonna do well. Why should I do anything? And I can tell you that the literature and all the research that we do, and it gets refreshed every 10 years or so, someone will do the study and it shows that if we have Black men and men of other races or white men, and we give them the same treatment for the same level of disease, that the outcomes are actually very similar, and a better way to state that for me is if you’re diagnosed early and you get the treatment that you should get irrespective of your race, it seems like outcomes can be quite good. 

And so a lot of what we see with regards to prostate cancer inequities are driven by lower treatment rates and probably an impact of lower quality care. And when I say that, what does that mean? Well, do you get your care at places like the Seattle Cancer Care Alliance or the Cleveland Clinic, or John Hopkins or MD Anderson, where you have providers who are expert and do a lot of prostate cancer care, or are you being seen by someone in the community who I guarantee is an excellent clinician, but doesn’t have the same resources and the same expertise in the sense of being focused on one disease process or one set of cancers, for instance, we are genital urinary cancer specialist, a fancy term for being cancer doctors of the plumbing system, but because that’s all we focus on, we know a lot about the process we know what works, and we know what the standards of care. So I think when you can get the right treatment at the right time, and you can get it from teams that are really specialized in this, that our outcomes are going to not care about what your self-defined races when you check box. 

The problem is, how do we get… How do we close that gap that exists currently that doesn’t allow people to get that care, and I think we’ve talked about rurality, so I think… I grew up in Oklahoma, and I could see that if you are in the sticks in Oklahoma and you’re not near a cancer center, like something down in Dallas, that your care might be impacted, but… Especially if you have to travel a lot and it’s expensive. But we have major US cities like Los Angeles where you may share a zip code with a millionaire but use very different health services, so it’s not always a reflection of how far you have to travel, but it also is factors about how welcoming institutions that provide high quality care can feel for populations like our BIPOC populations who sometimes have been the subject of medical experimentation and lower quality care sometimes because they might not get shuttled to the same services historically, and I think we have a lot to undo to rebuild the trust that is required to have black men not be fearful of seeking care from us, but be trusting. 

Dr. Nicole Rochester: 

Absolutely, and certainly the COVID pandemic has really brought that whole mistrust and distrust to light, so I appreciate you touching on that. We’re going to move to talk about treatment access, and I love how this conversation is flowing because so many of these elements have already been discussed, so we’re gonna talk about treatment access for prostate cancer patients, and we know that sometimes the barriers that patients face, as you mentioned actually limit their access to quality care and to appropriate treatment. So, Dr. Grivas, how can we ensure that a patient’s geographic location doesn’t dictate the quality of care that they receive? 

 Dr. Grivas: 

A very important question for sure, and I think as you point it out, we have tasked upon this before, but I think it is definitely much more to be said and done. More importantly, I think the location has to do with multiple differences in social constructs, right? The location of the distance from a cancer center with expertise is one thing at the time to get to the cancer center is related to that, and also the social support that the patient may have, if for example, a particular treatment, for example, a clinical trial, the requires a weekly visit to the cancer center, is that the feasible thing for the patient who lives miles and miles away in the rural areas of Oklahoma as Dr. Nyame mentioned or somewhere else. Can we design a clinical trial that are more friendly to these scenarios that require less frequent visits. Can we provide, if possible, funding for housing closer to the Cancer Center, and there are examples of cancer centers doing that. They provide temporary housing for the patient to be able be close the cancer center, so they don’t even worry about going back and forth across the state lines sometimes. 

The other thing, of course, is insurance coverage, and again, this can have some relation to location, and it’s something we have to think about, how can we help our patients who have significant copays because of the recommended insurance to that location being supported by foundation or all other funds that the cancer center or the state, or again, other foundations, we have. The other issues about diagnostics and treatments, there has been some interesting discussion about particularly prostate cancer, about access to what we call next generation sequencing, which is a diagnostic test aiming to profile or fingerprint the cancer DNA to look for particular mutations that the cancer may have that may lead to a particular treatment options. 

If, for example, mutation A is present, can we use a drug X that might be relevant in that context of a mutation and a recent data that was presented at ASCO 2021 showed that if you look at those mutations, they’re not very different between, for example, white and Black patients, there are similar types and frequencies of mutations. What is different is access to the test and, of course, access to the [inaudible] of the test. So I think we have to do a better job bringing ourselves to the community, extending our opportunities to the patient to get connected with the healthcare system, and they’ll build bridges to bring the patient and closer to the cancer center offering those tests. Work with patient navigation to help patients understand the significant value of the follow-up, but also provide them with a way that there’s equitable access to diagnostics and treatments. 

 Dr. Nicole Rochester: 

Thank you, thank you so much, Dr. Grivas and you’ve touched on something that I’m going to ask Dr. Nyame to elaborate on which is these fancy tests and these new technologies and things, and what we know is that a lot of times the patient themselves, if they are not aware of these particular tests, then because of all the disparities that we’ve talked about, they may not even be offered to them. And so a question for you, Dr. Nyame, how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options and diagnostic options that Dr. Grivas just spoke of? 

Dr. Nyame: 

You know that’s very challenging because Dr. Grivas, and I see this in our clinical practice, we have patients who are very savvy, that’ll come in and say that I’ve heard that there’s a PSM in San Francisco. Do you have it in Seattle? If you don’t have it in Seattle, I’m gonna go to San Francisco. And for every patient I had like that, who might be, Hey, have you read this latest article, I can have someone who has no idea of what’s going on with their diagnosis, and so how we create opportunities to bring those patients and know very little up to somewhere close, maybe not quite to the demanding the PSMA or a fancy scan level, but sophisticated enough to feel empowered in their health decision-making as something where I think we need to do research because we know that certain tools, navigation, advocacy groups can help in that arena, but I think that we need to understand what the tools are that patients want. What’s interesting is when you query patients, which we’ve done in a study and you say, What are the most pressing issues for you in your prostate cancer diagnosis, whether it’s in the localized setting or in the advanced or metastatic setting, the one thing that has resonated over and over again, irrespective of race is I need help making decisions, I need tools that will make it, me more efficient in how I make my decisions. And so I think without punting the answer too much, we need to do better, and I think part of that starts with listening. I do think that providers can be trained to provide that information in a more efficient manner. We do not… We as clinicians, are built into a system where the number of patients we see really correlates with how we get paid, and there’s not a doctor that doesn’t go to work excited to educate and build relationships with patients, that’s not the case, but there is a time crunch and I feel like in situations where there is a bigger gap and knowledge and understanding, we often don’t have enough time and built into our day to have the discussion, so for me, for a lot of my patients who I feel like have a lower understanding of what’s going on with regards to their prostate cancer diagnosis, it’s really important for me to build into our visit the understanding that whatever we don’t cover can be addressed at a later time and that we don’t have to make a decision with that at particular visit. So when I think about this, it’s sort of like your favorite barbershop or your favorite grocery store, your favorite sandwich place, the relationships matter. 

And I think when we talk about empowering patients to be advocates for themselves in their clinical visits, I think there needs to be an understanding from patients that if it doesn’t feel right, that they have options and to take their time in the decision. Prostate cancer, unlike other diseases, that Dr. Grivas and I treat doesn’t have to have the dial turn to 10 or 11 right away, and we need to make a decision because time is extremely sensitive, even in our most aggressive localized settings, which is what I treat, we have the opportunity to take weeks, if not months, to come to a decision. 

Dr. Nicole Rochester: 

Thank you, thank you so much, I appreciate that. And certainly as a physician who’s also a health advocate, I strongly agree with what you said about if the relationship is not working, that there are options, and I know that that may not always be the case depending on where patients live, but I regularly encourage my clients to sometimes you have to look somewhere else, sometimes you have to get a second opinion or maybe even fire your doctor if the relationship is not mutually beneficial, so I appreciate you sharing that. Dr. Grivas, do you have anything to add in terms of how patients can take a proactive approach to their healthcare and how they can build this confidence we’ve been talking about and express their concerns to their medical team? 

Dr. Grivas: 

I think Dr. Nyame covered it so well. I think it’s critically important for all of us to recognize that the finding out the why is probably the key to answer those questions, why there is this distrust, why someone is not paying attention so her own health because they have to try to make ends meet and keep family fed during the day time, and they don’t have time to think about their own health as Dr. Nyame mentioned before, at the same time, empowering the patient that they are the center of this relationship. 

Why doesn’t Dr. Nyame go to the clinic in the morning is because of patients, so our training is patient-centered and our practice is patient-centered and our research is patient-centered, so the patient should feel that right from the door, that this is a service to them. And we’re doing what we’re doing to help their life being longer, longer survival, as we call it, or better, better quality of life, and listening to the patient’s needs is important because of the time crunch that Dr. Nyame mentioned before, I think many of us, probably all of us are within situations where we don’t have enough time to listen advocate, what the person have to say, that’s why I think it’s important to have opportunities for separate visits and utilize better other mechanisms, exact mechanisms, patient navigation I think it’s a critical part of our care, social workers, case managers, financial counselors, nutritionist, genetic counselors, looking at genetics in for the disposition to cancer which is much more common than we think occurrences sometimes we be higher in some certain populations. Having this service available to patients, can help a lot because they will give them knowledge, and knowledge is power by itself, so give them the center, we’re here for them. Why they’re here, it’s because we want to help them and giving them also resources, they need to get now let’s information, when they feel they have more knowledge and they feel that they have control, they can communicate back and give feedback of how we can do better and also, what are the priorities of their needs, so we can address those, what matters to the patient, and this can apply to base and care, and also is what questions we’re asking? Research should be defined by patient priority, so all of those factors should be a dialogue with a patient, I think advocacy groups can be a great liaison to help us disseminate this concept and help again, empowering the patients. I struggle believe that explaining the why and giving knowledge, the data points in a simple and lay manner, can patients think being more in control. 

 
Dr. Nicole Rochester: 

Absolutely, thank you, both of you. I love the patient-centered focus, that is something that admittedly, we’ve gotten away from that to some degree in medicine because of the time crunches that both of you have mentioned, and I love that you said knowledge is power. So as we close, I’d love for each of you to share maybe a couple of key questions that patients, our care partners facing prostate cancer should ask of their treatment team to ensure that they’re receiving appropriate care. 

So we’ll start with you, Nyame. Any key questions that patients should be asking their care team when they seek treatment or diagnosis of prostate cancer. 

Absolutely, I think that there’s a long list. Actually, I’ll tell you, my new prostate cancer diagnosis visits are usually my longest because there’s a lot to consider. I do think depending on what you’re having done and what you’re being considered for, so let’s say in the localized setting, prostate cancer is confined to the prostate, and you’re thinking about treatment like a surgery or radiation therapy, you really want to know what that center and what that provider’s experience is because we have a lot of supporting evidence that the more people doing this… No one’s going to be surprised by what I’m about to say, but the more that someone does is the better they’re gonna be at it. Okay, and so making sure your team has a good experience with what you’re seeking to have done is important, and I think it’s well within your rights as a patient to understand that, so I think advocate for that. Secondly, I think basic questions, just to understand the relationship, I think… I like it when patients wanna know a little bit about me because I’m gonna be… They’re gonna be in my hands, and so again, the importance of that relationship building and your visit is crucial. 

Lastly, I think when you come to the visit, have a list of questions based off of what you’ve researched and write them down, I find my most sophisticated patients or crossing off questions as I’m talking, ’cause they came prepared and so that preparation… The act of doing a little bit of reading, there are a lot of resources, the Prostate Cancer Foundation, for instance, has a very nice patient guide that’s written by patients and language that’s really digestible and edited by experts, and so going through that and coming with your list of questions, I think is a really important thing for your visit, and those are just a few things I can think of that can lead to a meaningful clinic visit and exchange. 

 
Dr. Nicole Rochester: 

Excellent, I’m a huge fan of questions and being prepared for visits, what about you, Dr. Grivas are there one or two key questions that you feel patients or their care partners should ask? 

Dr. Grivas: 

Great answers by Dr. Nyame, I totally agree. I think started with the basics, What this diagnosis means for me, what is the current extent of the cancer, we call the states, and what is the outlook, what is the overall prognosis or at least estimate of the outcome, that’s a reasonable question to ask and again some places more detail, some others may not, and it’s important for us also to ask the base and what they want to know, how much they want to know, I would take in things of them, they want to know the entirety of the information because it makes… Help them make decisions. The other, I think it’s important point, what are the treatment options and what is the intent of the treatment, what are we trying to achieve by giving treatment, are we trying to cure, eradicate or eliminate the culture, are we to prolong life, are we trying to improve quality of life or are we just trying control the cancer, so what are the goals of the treatment and what are the metrics of success, so what will be a successful outcome of that treatment? How do we measure that? And I think it’s also important. 

Two more points, I would if I may. I think, again, going back to the importance of genetic counseling even more in prostate cancer, I think we recognize the importance in the aspect of patient treatment because some treatment options may depend on finding mutations. But also the importance of the family, how much can prevent cancers in the brother family, close and extended family, if we find the mutation, can we set this mutation for other family members and do screening to prevent cancer prevention is ideal if we can do that and I think that’s a good discussion, so the patient can come to the visit if possible, by doing some homework about the family history. It’s hard for of us now, what’s happening in that chasm, right? But we do have the time to be informed of the importance of the question, this can help and expedite in our resources like to genetic counseling. And the last points, research, I want to again make the point, we should all do a better job to offer innovative clinical trials to patients across races, and it should be a very important point again equitable healthcare. And the patient should ask are clinical trials an option for me and do I have a clinical trial option? And I think it’s a great question, and hopefully this can help the patient get to integrative treatment, but also help the field. 

The research would get important answers, and the important answers can be for all the community and the specific populations, if we do trials, clinical trials with only the white patients, do we have the answer for the black patients, or we have the answer for both and other races and ethnicities as well. 

Dr. Nyame: 

And I do wanna take this opportunity to add one more thing because Dr. Grivas was talked about what does your treatment mean for you, and in this discussion about prostate cancer, we cannot talk about what questions do you bring without mentioning the impact, quality of life of our treatments, and I think that sometimes this is the elephant in the room that leads to the decision to not pursue treatment, and so I want to take this opportunity as the urologist to say, This is the time to talk about what treatment is gonna do for sexual function. This is the time to talk about what treatment means for your urinary symptoms and quality of life, a good and healthy discussion around these things need to happen during your visit, because I think sometimes what patients expect to have happen with treatment and reality don’t match. And you have an expert in front of you that can really give you some input as to what to expect, and in a similar vein, when you meet with survivors, these are some of the things that I know patients tell me they’re worried about, and these are people who are living it, that can give you really valuable information on that piece of quality of life, and I hope that those conversations can help us close that treatment disparity that we see between black men and white men with prostate cancer. 

 Dr. Nicole Rochester: 

Such wonderful points. This has been an amazing conversation. Thank you so much, Dr. Nyame and thank you Dr. Grivas for just illuminating so many important issues, just to briefly summarize, we’ve talked about the disparities that exist in prostate cancer, diagnosis and treatment based on geographic location, based on finances, insurance that is access and… Yes, even race and ethnicity, and you all have done a wonderful job providing solutions, we’ve talked about the importance of advocating for yourself and your loved ones, the importance of being educated and doing some research, coming to those visits with your questions, making sure that you form a relationship with your treating physicians and sometimes perhaps seeking someone else, if that’s not possible, so just… So many gems, and I just wanna thank both of you for spending this time with us today, and I wanna thank you all for tuning in to this Patient Empowerment Network program. I’m Dr. Nicole Rochester, and thank you for joining us. 

Dr. Grivas: 

Thank you. 

Which Prostate Cancer Treatment Is Right for You? What You Need to Know

Which Prostate Cancer Treatment Is Right for You? What You Need to Know from Patient Empowerment Network on Vimeo

What do you need to know before deciding which treatment is best for YOUR prostate cancer? Dr. Maha Hussain discusses the role of key tests in choosing therapy, including biomarker testing, provides tips for partnering with your care team and reviews recent research news.

Dr. Maha Hussain is the Deputy Director of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about this expert here.

Download Guide

See More From INSIST! Prostate Cancer

Related Resources

How Do Genetic Mutations Impact Prostate Cancer Treatment Options?

What Is a Prostate Cancer Genetic Mutation?

What Is a Prostate Cancer Biomarker?

 


Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today, we’re going to discuss how to access the most personalized prostate cancer therapy for your individual disease and why it’s essential to insist on key testing. Before we meet our guest, let’s review a few important details. 

The reminder email you received about this program contains a link to program materials. If you haven’t already, click on that link to access information to follow along during this webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars.  

Finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. 

All right, let’s meet our guest today. Joining me is Dr. Maha Hussain. Dr. Hussain, would you please introduce yourself? 

Dr. Hussain:

Sure. Thank you, Katherine. 

It’s my pleasure to join you. And to the audience, nice to meet you all virtually. My name is Maha Hussain. I am a genitourinary medical oncologist with a focus on prostate cancer and bladder cancer. And I am a professor at Northwestern University Feinberg School of Medicine, Department of Medicine, and endowed professor there. And I also serve as the deputy director for the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. 

Katherine:

Wonderful. Thank you so much for taking time out of your busy schedule to join us today. 

Dr. Hussain:

My pleasure. 

Katherine:

I’d like to start by asking about developments in prostate cancer research and treatment. Experts recently gathered at the annual American Society of Clinical Oncology meeting, also known as ASCO, to share their research. 

So, what were the highlights from that meeting that you feel patients should know about? 

Dr. Hussain:

I think probably perhaps I can focus on two major – what I would consider major highlights, and those were the results from two randomized Phase III clinical trials. 

One of the trials is called the VISION trial. And the VISION trial was a Phase III randomized trial evaluating lutetium-PSMA-617 treatment in patients with metastatic castration-resistant prostate cancer. And the delightful thing about this study is that that study was positive. The PSMA story has been really going on for a few years now. And there’s the PSMA for purposes of scans, imaging, to assess the cancer. And the FDA just approved a PSMA PET imaging this year. 

I think it was in May when it was approved. And that would help better define if the cancer is spread or not, and it help with the decision regarding treatment. But the second part is treatment purposes, so identifying the cancer location and trying to attack it with a specific sort of targeted attack to the tumor is really important. 

And so, the FDA is currently looking at this particular agent. And I am hopeful that we will hear soon from the FDA, hopefully before the end of the year, and maybe – who knows? – maybe by summer, middle summer or end of summer. Because I do think that would be a major benchmark in there. And so, that’s one thing. 

The other clinical trial that I thought was interesting from a data perspective – and for disclosure, I am one of the investigators on this study. And this was an intergroup Southwest Oncology, or SWOG, sponsored clinical trial. So, it’s a federal study that Dr. Aggarwal presented. And this was a study that was aiming at maximizing, again, the anti-tumor therapy with the use of a drug which I call is the younger brother of abiraterone. 

So, abiraterone is a drug that is FDA-approved and has been around for several years right now for both castration-resistant prostate cancer and certainly hormone-sensitive metastatic disease. And so, TAK 700 (Orteronel) is a younger brother, I call it, of abiraterone. And one of the potential advantageous when this trial was designed was the fact that you don’t need to use prednisone. And the trial was completed. It was a national clinical trial. And what was interesting is that there is certainly what appears to be a potential benefit, but not in terms of the conclusive based on the way the study was designed.

Having said that, what I thought was remarkable is that patients who basically were only on the control arm was LHRH therapy, so this could’ve been like Lupron, Zoladex, or something like that plus bicalutamide, which is what we call combined androgen deprivation. And that was sort of like the strongest control arm we could do at the time when the trial was designed. 

Remarkably, the patients who were on that arm had a median survival of basically 70 months. That’s the median. That’s the bell-shaped curve with the number in the middle. Seventy months is probably the longest ever in any other randomized trials in this disease space, in the hormone sensitive space. So, that tells us is that men are living longer with prostate cancer, even though it’s metastatic disease; and, yes, it’s not necessarily curable, but men are living longer. And it’s a function of all of the better treatments that are supportive care and everything that was going on.  

And so, the control arm, as I mentioned, was the 70.2 months. The actual experimental arm was about 81.1 months. And again, I don’t know where things will go from this. Obviously, I’m not the sponsor not the FDA. But the point here is that men are living longer, and so wellness and health become even more so important than we ever did. And as I tell my patients, every day you’ll live longer. The odds of living longer is there because of better treatments coming on. 

So, to me – not to take too much time from the interview – to me, these were the two highlights: new, approved – I’m sorry, new treatment that I’m hoping will be FDA-approved and, obviously, the fact that men are living longer.  

Katherine:

How can patients keep up to date on the research that’s going on? 

Dr. Hussain:

I’m a bit biased, obviously. I’m a member of ASCO. 

And what I would recommend to my patients is to look at the cancer.net website. The cancer.net is a website that is an ASCO-generated website specifically for patients and families to review. It is vetted. The committees are not run just by physicians, oncologists, a multidisciplinary team, but also patient representative. So, the lingo and the presentation are lay-friendly, I call it, there. 

The other part I would say, the NCI website, and the American Cancer Society, the American Urological Association. I would say there’s a lot of stuff on the media. The difficulty is vetting what is sort of fake, what is not so accurate, or bias versus there. I also think that the NCCN has also some resources for patients. 

And one thing I always tell patients: explore, look, but make sure that you talk to your doctor about the meanings of everything because sometimes it can be not – it could be misleading, I should say, or maybe not very clear on what the implications are. 

Katherine:

Right. One thing that’s a topic on the mind of many people right now is COVID. 

Dr. Hussain:

Yeah. 

Katherine:

Is the COVID vaccination safe and effective for prostate cancer patients? 

Dr. Hussain:

The answer is yes and yes. So, I have to say, by default, I deal mostly with older men. Age brings in other comorbidities. And certainly, while I see all kinds of shades of gray in terms of the disease extent, going all the way from newly diagnosed all the way to end-stage disease, the bulk of the patients I end up seeing tend to have more systemic disease and have other issues going on. And I have to say, surprisingly, less than a handful of my patients had the infection. 

Only one required hospitalization with supportive measure, but not even needed incubation; however, he needed a lot of CPAP and other respiratory support. I’m not aware of any of my patients or my colleague’s patients who deal with prostate cancer that have died from COVID. So, I would say that’s the good news and that we have not seen a big hit in the population that I deal with. 

I also know that I would say 99.9 percent of my patients have opted to be vaccinated, and they have tolerated the vaccine just fine. There’s only one case, which I actually even saw just this week, who had been vaccinated but have a very, very severe end-stage disease with significantly compromised bone morrow, who got infected but hospitalized for a few days and is recovering. 

And so, I would say just by the pool of patients I see, my answers are yes and yes. 

Katherine:

Very good. Thank you. 

Dr. Hussain:

And I would encourage all the audience to go get vaccinated. I myself am vaccinated. And I’ve advised all my family members to be vaccinated, just to clarify that too. 

Katherine:

Good. Good to know. Dr. Hussain, we’re going to spend most of this conversation talking about advanced prostate cancer. But before we move on, would you give us a brief overview of the stages of prostate cancer? 

Dr. Hussain:

Absolutely. So, with any cancer, we count sort of like four stages. But I would say in prostate cancer the biggest thing is when the cancer is newly diagnosed, which could be confined to the prostate or locally advanced, meaning the cancer has gotten outside the capsule of the prostate but still within that pelvic region. 

There is the group of patients who have pelvic lymph nodes at time of diagnosis. And of course, that is the patients who have systemic disease, which would be technically stage four. Now, the systemic disease implies any abnormality that is found on scans that is beyond the public region. So, that could be lymph nodes in the back of the belly. That could be thoracic lymph nodes. That could be neck nodes. That could be lung lesions, of course, or bone, or liver. 

Now, the most common area where the cancer goes to is really – when we talk about metastatic disease – is the bone. And then lymph is another area where the cancer goes to. Prostate cancer that is confined to the prostate is curable in the vast majority of patients. There is a category of men who undergo surgery or radiation, and then their PSA begins to go up afterwards. 

And this is what we call biochemical relapse. And this is a situation where we know that, in all likelihood obviously, especially of the patients who have had their prostate out, that the cancer has spread. With the current imagine, a good chunk of times, we do not find anything because we’re able to pick up PSA that goes from undetectable to 0.2 to 0.3, but there’s not enough cancer to show up on the scans. We’re hoping, obviously, the better scans, the PET Axumin scan, the PSMA scans are going to help us to identify sites of metastases. 

But this is a group of men where if there is no cancer visible and the only thing we’re dealing with is PSA that’s going up, if they’ve had surgery, then there’s room for what we call salvage therapy with radiation and hormonal treatment. The case is a bit different if there’s only just the prostate – if radiation was given previously. And of course, we talked about metastatic disease. 

Katherine:

Yeah. Once someone has been diagnosed, what tests are used to help understand the aggressiveness of their disease and their overall prognosis? 

Dr. Hussain:

Well, I think there is different basic things, as in, what was the extent of the cancer? How did it look under the microscope? And what is the PSA levels? So, these are the general things. There are different sort of genomic panels that the urologist will use to kind of decipher and other things to kind of help with figuring out aggressiveness and things like that. What I would say is this, is a patient who is diagnosed and has a cancer, and at a minimum has what we consider a Gleason 7 prostate cancer – so, that’s the scoring system that is done with the original Gleason score, or the new patterns where it’s talking about intermediate risk to high risk – to me, this is a cancer that needs to be treated. 

And again, that’s all to do with if a person has other comorbidities, they have some other terminal condition that’s a separate story. But talking generically, that would be when we would recommend. And these are the patients that are generally not seen by the medical oncologist. They’re seen by the urologist, and then they can refer them to radiation oncology also for consultation. 

Katherine:

Now that we understand how test results can help inform a patient’s cancer and how it may behave. Let’s discuss how they can affect treatment options for men with advanced disease. First, let’s do a brief review of the treatment types currently available. There’s hormone therapy, right. What else? 

Dr. Hussain:

Perhaps, it’s simpler if we focus on advanced disease, specifically metastatic disease. 

So, if that’s the deal, then the backbone of treatment is hormone treatment. And it really is. We call it hormone, but technically it’s an anti-hormone. What we’re trying to do is shut down the hormonal pathway that stimulate the testes, which is the factory that makes testosterone. So, we are looking at shutting down testosterone production from the testes in order to starve the cancer. 

Now, the male hormone is produced predominantly – somewhere about 95 percent of it is made by the testes, and then there are about 5 percent-ish that comes from other sources. These are, again, male hormones like the adrenal gland and so on. And there was a while ago some research – I want to say from the MD Anderson crowd, but this is two years ago – that suggested also that the tumor may start to make sort of in-house production of male hormone to support itself. 

Now, having said that, again, testes continue to be the source of the majority of the male hormone. And so, historically, the first data that showed benefit was actually by surgically removing the testes, which is what we call orchiectomy or bilateral orchiectomy. And then medications began hitting the market and were evaluated in the late ’80s and then 1990s, beginning with Lupron – which by the way, in the ’80s, it was an injection that the patient had to give themselves every day, which is remarkable. 

But even then, there is a personal preference by patients to go and take injections as opposed to go through surgery with orchiectomy. But still, I would say for some patients it may be an option until it ought to be discussed as an option. Then what we know is this, is because of the potential other sources for the male hormone, the concept of what we call combined androgen depravation was being evaluated. 

And again, this goes back to the ’80s when the first drug was flutamide and then bicalutamide, and there are other drugs that became. And they kind of added a sprinkle, I call it, to survival. But it wasn’t dramatic, huge differences in survival. And so, generally, while we used it, everybody believed in using it. Moving forward, the drugs like abiraterone, enzalutamide, apalutamide are the three hormonal drugs that have demonstrated conclusively really an advantage in terms of prolonging life when added to the Lupron. 

So, what I tell my patients is that, when it comes to hormone treatment there is really no way around it. You can delay it. Some people are exploring for some patients who don’t have a lot of cancer, maybe a couple of areas, maybe just do targeted radiation and then leave the person alone to buy them some treatment-free time. 

And, to me, this is where the discussion that has to happen with the patient. What is the objective? Is the objective to kind of be ahead of the game and maximally treat the cancer with the hope of prolonging life? Or is the objective to delay treatment? And I would tell you that, with these types of conversation, nine out of 10 or 9.5 out of 10 men opt for moving aggressively up front with management. So, that’s that. 

Now, the one thing I should point out, one of the trials that also was a landmark trial in this disease was the study CHAARTED, which was an intergroup clinical trial at the time it was designed, led by ECOG, and the PI was Dr. Chris Sweeney. I was part of the team that worked on the design also of the study. 

And that was a trial that looked at adding docetaxel to hormone therapy, versus hormone therapy alone, to try to see if it adds something. Historically, all the chemotherapies prior to that that were added to hormone treatment for patients with newly diagnosed metastatic disease had not delivered. And docetaxel did. 

However, one thing I should point out, based on that trial – and I don’t want to go into too much details for the sake of time – the patients that seemed to be benefiting were the patients that had more aggressive, more disease in their system. And so, liver metastases, lung metastases spread in the bone at different areas, not like few isolated areas in the spine or the pelvis, but much more than that. 

And so, for the patients who have what we call high-volume prostate cancer based on scans – and I’m happy to explain what that means if it’s needed – these are the patients that I would offer either the docetaxel plus hormone treatment, which is the injection, or the injection plus the hormonal pills that I mentioned earlier. 

Katherine:

What about targeted therapy? How is that used? 

Dr. Hussain:

Okay. So, let’s begin with the molecularly targeted therapy. So, as we speak right now, for patients who have newly diagnosed metastatic disease that we call hormone sensitive, molecularly targeted therapy is not standard of care. So, I would encourage patients who may qualify for clinical trial to be involved in those. The flipside is – we can talk about it – is that molecularly targeted therapies, specifically with PARP inhibitors have pretty much entered in the space of prostate cancer with a couple of drugs that were FDA-approved. 

The other way of targeted treatment, which would be what we refer to targeted radiation, this would be a different story. This is not systemic treatment. This is a local treatment. And what is done is basically if patients do not have a lot of cancer in their body based on scans, and only certain areas, and they are starting systemic therapy, they can certainly consult with a radiation oncologist to target radiation to areas that are visible on scan. So, if somebody has a couple of, let’s say, pelvic bone lesions, maybe a lymph node, and they are already starting systemic therapy, they can consult with a radiation oncologist focal radiation. And so, that would be the general scheme. 

Katherine:

Many patients are confused about the role of genetics and biomarker testing in prostate cancer care. 

For people who haven’t heard of some of these terms before, let’s go into the definitions. So, what is genomic or biomarker testing, first of all?  

Dr. Hussain: So, I think there’s one thing. Maybe I can explain because the wording can be confusing. So, there is the genetics, and there is the genomics. The genetics would be what we inherit from our families. So, this would be present in our body. The genomics testing would be to look for what the structure of the genes of the cancer itself, cancer cells itself. Now, that doesn’t mean that this was inherited. It’s just that this is a renegade, and it evolved. And that is what is going to show up. 

The reason these two are important, both of them have implications potentially for treatment or perhaps clinical trials. And again, with the PARP inhibitors, the BRCA-like genes will have implications for treatment sort of for resistance cancers. 

With regard to the genetics, the implications are for, again, inheritance of family and potential risk for blood relatives. Now, there are panels that are FDA-approved for the purpose of genetic testing. And the requirement or the indications right now, anybody who presents with metastatic disease or an aggressive disease and diagnosis, the recommendation is to proceed with the genetic testing, certainly counseling and testing, because there are some people who prefer not to be tested. And that’s something else. 

What I tell my patients is this, even if the testing is done and it was negative for inherited genes that might put the patient family at potential higher risk, the fact that a person has prostate cancer by default puts potential, adds risks to family, to blood relatives. 

And the risks aren’t just for the males with regard to prostate cancer, but certainly breast cancer, ovarian cancer, pancreatic cancer potentially, and things of that sort. So, this is where I think a patient needs to be discussing with their doctors. And certainly, there are many centers that have genetics counselor, and so that’s where I generally refer my patients to. I counsel them myself, and then refer them also for more discussions with genetics counselor. 

Katherine:

What exactly are genetic mutations? And how do they impact a treatment path? 

Dr. Hussain:

Well, I think, again, it’s the changes that happens in specific genes that may promote the aggressiveness of a cancer. And so, the BRCA gene is one of the oldest genes that have been identified in breast cancer. And essentially, the body regulates itself. 

And when cancer cells come up and they sort of – the body no longer sustains that regulation, the genetic regulation in those cancer cells. Those cancer cells will behave the way they want to. That means that they’re going to grow faster. That means they could be resistant to treatment and things like that. And so, that’s what we check for, these alterations. And there are certain medications that would allow – and again, in prostate cancer, it’s not a lot. It’s just, as I said, right now the only things that are proven is the PARP inhibitors. This is essentially to kinda gang over the cancer cell, preventing from allowing it to repair itself so it can continue to grow. 

Katherine:

Some patients may not know if they’ve received these important tests. So, for patients that aren’t all that sure, what key questions should they be asking their physician or their specialist? 

Dr. Hussain:

So, I would say when it comes to the genetics testing, I believe a patient has to consent. 

Because again, we live in the U.S., and this is a private matter for the patient. So, this generally has to be the case. Otherwise, depending on the institution, sometimes some tests will require for the overall testing for looking for any genetic alterations, general tumor alternation. Different centers have different things. But the patient should ask and say to their doctor, “Have my cancer genes been tested? Have my genes been tested? And if they have, what are the results?” Because we generally share with the patients once it’s been done. 

The other things I should point out, some of the good things that have happened recently. Up until recently, when it comes to the tumor genomic testing, tissue was required. Nowadays, the FDA has approved blood tests that several companies now run that can actually collect blood sample and basically test it for circulating tumor cell genes there. 

Now, no testing is 100 percent perfect. But in situations like patients with prostate cancer who may not have recent tissue or adequate tissue for testing, certainly doing the blood test to verify if there is anything reflective of the genes of the cancer, and that may allow for potential actionable-type treatments. Again, up until now, this is more going to apply for potential clinical trials or resistant metastatic disease. 

Katherine:

Are there other important factors to consider, like a patient’s age, that can help them access the best treatment for their prostate cancer? 

Dr. Hussain:

Yes. And I think that age is one factor. What I say and what I tell my fellows, age is to be respected, but used to discriminate in terms of management. 

 We all age. And certainly, the body reserve is not the same. And so, that’s why I would say that has to be respected. But it doesn’t mean that we cannot treat patients. 

And I’ll tell you, it’s interesting. There are times where you have – I have a gentleman who used to run seven miles a day. He was 87 years old. This was in my days when I used to be in Ann Arbor at University of Michigan. And the gentleman came to me, and he said, “Dr. Hussain, I don’t feel good.” And I said, “Sir, why? What has happened?” “I can’t run like I did before.” And I said, “You’re not running?” “No, I am running. I’m just not able to do seven miles a day. I can do only four miles a day.” I’m like, whoa, that’s about 100% more than I do. 

Now, again, I’m bringing this as an extreme example. But for some of the oral agents, like the Olaparib trial, there were men in there literally late-’80s, early-’90s that were included in the clinical trials. Same thing goes for several of the other trials. 

I do think that functionality is important. So, if somebody comes to you so sick they are in a wheelchair, you really have to be very careful. And again, I’m just using kind of extremes. And so, you have to be careful by what you are able to do. And any time the doctor thinks the odds are going to be more harm than good, this is really where absolutely a situation where the physician needs to be careful about it, and the patient needs to understand it also. At the end of the day, it’s a shared decision. 

Katherine:

Before we close, Dr. Hussain, how do you feel about the future or prostate cancer research, and what would you like patients to know? 

Dr. Hussain:

First, let me say that I would love for the patients to know that they are a partner, a most critical partner in the process.  

That we need to continue the research and investment in research. It is research that will end up curing cancer. Wishful thinking will not do it. And patient volunteering, which I think is remarkable across all cancers. The business I’m in, the way that drug discovery and evolution often happen because patients volunteered. And without testing these new treatments and combinations, we will not be able to get better results.  

And I will tell you that, when I started my training, the median survival for patients with resistant prostate cancer was on the magnitude of about nine months. Now it is three years-plus. Now, you could argue, well, that’s not huge. But that is a huge change because, again, we’re picking up the cancers much earlier. And the patients who had, as I mentioned, metastatic disease, again, the longevity then at the time I was in training, but even afterwards, was give and take in the three years. And now we’re talking six-plus years. 

And so, there’s been tremendous progress. And really partnership with the patients and their families and supportive others is very critical, and investment in research. So, yes, advocate constantly for more investment in research. 

Katherine:

All sounds very promising, Dr. Hussain. Thank you so much for taking the time to join us today. 

Dr. Hussain:

My pleasure. And be well, all of you.  

Katherine:

Thank you. And thank you to all of our partners. If you would like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about prostate cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for joining us.