Prostate Cancer Archives

Prostate cancer is the most common cancer in men in the US, after skin cancer. Almost all prostate cancers are adenocarcinomas (cancers that begin in cells that make and release mucus and other fluids). Prostate cancer often has no early symptoms.

More resources for Prostate Cancer from Patient Empowerment Network.

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

Ask the Prostate Cancer Expert: How Is Prostate Cancer Diagnosis and Treatment Evolving? from Patient Empowerment Network on Vimeo.

 What should prostate cancer patients, care partners, and underserved patients know about? Watch as expert Dr. Yaw Nyamefrom the University of Washington shares insight about prostate cancer detection, screening guidelines, specific concerns for Black men, support groups, and clinical trials to work toward better health outcomes for all. 

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


Related Resources:

How Has the Onset of Prostate Cancer Evolved?


Transcript:

Sherea Cary: 

Hello, we are here with Dr. Nyame. I have a few questions for you. Dr. Nyame, how has prostate cancer evolved over the last decade regarding the onset of the disease, the population in which it impacts the care and the treatment? 

Dr. Nyame: 

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

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

Sherea Cary: 

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

Dr. Nyame: 

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

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

 Sherea Cary:

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

Dr. Nyame: 

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

Sherea Cary:

Thank you so much for sharing the information about the BRCA gene as well. I’ve heard information about the BRCA gene, but I always hear it in relation to women, I’ve never heard it in relation to a connection with prostate cancer. 

That is very interesting to know. What does a multi-discipline approach to prostate cancer look like? 

Dr. Nyame:

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

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

Sherea Cary: 

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

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

Dr. Nyame: 

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

Sherea Cary: 

Thank you. What differences do you see in terms of aggressiveness for cancers in different… Various populations?  

Dr. Nyame: 

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

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

Sherea Cary:

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

Dr. Nyame: 

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

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

Sherea Cary:

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

Dr. Nyame: 

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

Sherea Cary: 

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

Dr. Nyame: 

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

Sherea Cary: 

Thank you so much for spending time with us today. I appreciate you sharing your knowledge. 

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

Related Resources

How Does Genetic Testing Impact Prostate Cancer Care?

Treatment Options for Advanced Prostate Cancer

What Is a Prostate Cancer Genetic Mutation?


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

Advanced Prostate Cancer: David’s Clinical Trial Profile

Advanced Prostate Cancer: David’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Prostate cancer patient David received a diagnosis at stage IV during a routine PSA check. Watch as he shares his prostate cancer journey, his experience with clinical trials and treatments, and his advice to other patients about lessons learned about prostate cancer side effects and the impacts of clinical trials.

See More From Patient-to-Patient Diverse Prostate Cancer Clinical Trial Profiles

Transcript:

David: 

Hello, my name’s David. I am 58 years-old.I was diagnosed in 2016 with prostate cancer, I had no actual signs or symptoms of prostate cancer, it was only found due to Army doctors, I had something wrong with me, which had nothing to do with the cancer. They did a PSA check, and my PSA came back at 1050, where it should be around 0. From that I then got sent to a local hospital where I had tests, I had biopsies to open my prostate, which found out I had stage IV prostate cancer. 

From there I got asked would I like to go to the Christie County Hospital in Manchester, UK. From there, they offered me the trial called the STAMPEDE trial. This trial was used in different procedures, which is already around, we use them together to try and extend people with prostate’s life. I got to turn the arm where it was also attached with chemotherapy, followed by 20 sessions of radiotherapy. This happened over three, four months, which after that brought my PSA down, but only to round 20 odd. From this after a couple of months, my PSA started to rise fairly quickly. I then got put onto the drug called bicalutamide (Casodex). This lasted a couple of months, because my cancer is so aggressive, it started to grow. I then got put onto another chemotherapy, cabazitaxel (Jevtana). After my first session of the cabazitaxel, I then got a CT scan and from this we found out the growths were still growing. 

So after this, I then got put on a drug called abiraterone with [inaudible] which is a stand-only. I was on this for 22 months, which was very good, it brought my PSA down to eight, which is as low as it’s ever been. Like I say, it lasted 22 months, but then the cancer started to come back quite a bit, so my oncologist actually said there’s no actual normal treatment left for me, and asked would I like to go on to trials, clinical, a first stage clinical trial, right away I said yes. My first clinical trial was a Carrick called Carrick, this lasted six months, but again, the cancer started to grow again, so I came off of this. I then have four weeks, no trials at all. It’s what called a clean-out where you can’t have any drugs at all in between trials. I then went on to what was called task 368-1, this lasted longer which lasted seven months. That again, the cancer starts to grow again. So, then I got on this one called CellCentric For the the CellCentric trail, they put you back on to abiraterone, which normally you don’t, wouldn’t take past one to two months… for me, it’s carried on working again. It’s now on seven months of working until it stops working, I can’t go on the new drug called CellCentric. 

For me, this is cool because it’s still working, the old drug, and it’s a very…let’s say there’s not a lot of side effects except for what steroids [inaudible]. So at the moment, we’re just seeing how it goes. I have scans every eight weeks, a CT scan and a full body scan from each time they come back, they then decide what’s happening next…and that is my journey up to now, which is five-and-a-half years later. 

With the clinical trials, I feel really good at the moment, because as I said, the trial [inaudible] and abiraterone (Zytiga) is not a drug that causes a lot of side effects. Through other trials have been, they are very intense, and that’s what they always warn people, which are overnight stays when you first take the drugs, so they are very tiring, you have to have blood done overnight all the way through the night, you get BCGs to make sure your body is not reacting to the drugs, and then the side effects of the drugs after.  So, they are very intense, but also, I am still here, I did not expect to be here. October, this year October I got told I would not be here three years ago, so it shows what clinical trials can actually do for you.  I’m still here, I still live a very good life. We go walking, the wife and I quite often, and we did three, four-mile last night, and we just enjoy our lives. 

People don’t realize…a lot of men don’t talk about it the physical side and the sexual side of prostate cancer, the treatment, because your libido to go, and it just causes a [inaudible] of your testosterone. You don’t feel like…and it’s a closeness that you lose… Amanda’s been unbelievable, she’s been there for me all the way through. She’s my rock, she’s the one went down down, she pushes me, but then she has days where she’s down. And this is where people need to realize the partners will improve the encounters much as the patient. And this is some of them we talked about…we’re very open about people where we talk about it. We have our days, the last couple of days I’ve been down. But she’s there to try and help me get back, and I try and do it for her when she is…and the family is the same, having the family support, when I’ve been to appointments, I get phone calls, quite a few, I get messages how are things going. And it’s just nice knowing that people do care, we have friends who keep in touch all the time, make sure everything’s okay, and you need that support of your family and friends. 

It’s very important for them to be there with you. 

The clinical trial to me is drugs that normally are not being used on humans before. They’ve only been tested in the laboratories. So, the first stage is a dosage stage where they check in and see what a person can actually take…so different people have different amounts of the dose.  And then from there they go to the expansion stage, and that is when they bring more people, and they know what dose to give people. Well, it’s to find new drugs, which can help other people in the future, as well as myself…I always say to myself, “This could help someone in the future, live for longer, stay longer with their family, be there longer.” It’s helping me other months, as I say, but it’s also to help other people in the future, something that’s not been used with people before.  

What I would say to other people who are thinking of going on clinical trials and the families is go for it. They are done so carefully, you’re checked all the time, your bloods are checked, your health is checked, your [inaudible]. It’s something that you can stay longer with your family. There could be cures in the future with this as well, no one actually knows, and it’s something people should not be scared of doing. Like I said, I’m on my third trial, and I will keep on going, I know there are more trials for me after this. And I will keep on going. 

Advanced Prostate Cancer: Gary’s Clinical Trial Profile

Advanced Prostate Cancer: Gary’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Advanced prostate cancer patient Gary was an athlete in the first Oncology Olympic Games in Rome. Watch as Gary shares his prostate cancer journey, benefits and knowledge he’s gained from clinical trials, and his advice to others considering participating in a clinical trial. 

See More From Patient-to-Patient Diverse Prostate Cancer Clinical Trial Profiles

Transcript:

Gary: 

My name is Gary, I’m 66 years old and in January 2011, I was diagnosed with stage IV metastatic prostate cancer. 

I started my journey after the diagnosis, It was quite hard to take because I didn’t have symptoms, and it was a complete shock, and I found out by accident by being in hospital with pneumonia. When I found out, the team came around to talk to me, and they said there are lots of things open to me, like new medications, chemotherapy, radiotherapy, and clinical trials. So it started off very positive, and that made me feel positive about it as well. I started off on hormone treatment and my PSA over a few months went down from 255 down to 12. In October of that year, I started on an infusion every four weeks to strengthen the bones and stop osteoporosis. So that was an important move. Then my PSA started rising again, it crept up to 83. So I was only on hormone treatment, and that was when they offered me the PREVAIL trial. I looked up on the Internet about the trial when it was a trial that was known as MD-310 at the first stage of firm tests in America, and then they were rolling out the stage two tests, so I discussed it with my family. 

And we decided it would be a good move. And so I signed up for the clinical trial, and I started the trial on the 23rd of December. Being a 50/50 placebo versus drug, I didn’t know whether I was going to be on the drug or not. Come the new year after of couple of months, I started feeling better and my PSA started going down again. I felt more energetic and my consultant agreed with me when I said I thought I was probably on the drug because there’s a difference. It actually was the one thing that I’ve done that changed my life because I had a future, I felt better which I was a bit worried about doing because of the prognosis when they said it was up to two years depending on if I go to a good treatment. And the longer I was on the drug, the better I felt. I had side effects. I was clinically castrated by the drug, because it cuts off all the testosterone apart from that. 

I had a very, very good life. My wife and I’ve been married since we’ve been 19. We got married in 1974, and we’re solid as a rock. She is my rock all the way through this. Sometimes it’s harder for her, I think, than for me, because she’s watching what I’m going through. But after I’ve been on it for so long, we got really confident, and life was completely normal. And then came my first grandchild in 2014, and closely followed by the second one, two years later, and then the third one last year in lockdown, and they have made it such of my life such a joy. So I’m so thankful for deciding to go on a clinical trial. I would recommend clinical trials because you’ve got the basic treatments, but clinical trials can make a big difference, because although they are not tested drugs they’re probably the drugs of the future. 

And you can get on the ladder early and be on these drugs, and instead of giving it…giving me about three years, it worked for nine years. So it gave me nine years of worry-free life. I’ve had my ups and downs, I had some phases of [inaudible] radiotherapy here and there, but it was…it really did make a massive difference to my life. And I don’t think if I hadn’t gone on that clinical trial, I don’t think I would have been here now.  I relish every single minute I’m here and if another clinical trial, that would suit me came up tomorrow, I would definitely think about going on that one as well.  

Advanced Prostate Cancer: Willie’s Clinical Trial Profile

Advanced Prostate Cancer: Willie’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Prostate cancer patient Willie was diagnosed in 2021 at the age of 65. Watch as he shares his prostate cancer story from diagnosis to how he’s doing today, his experience with a patient navigator and a clinical trial, and his advice to both Black men and to all others with prostate cancer.

See More From Patient-to-Patient Diverse Prostate Cancer Clinical Trial Profiles

Transcript:

Willie: 

My name is Willie. I’m 65 years old. In 2021, I found out that I had prostate cancer. 

 I would like to explain about the experiment that I went through in prostate cancer. Some that was, I was afraid of because that word cancer and that word to me, out of all my life, I done heard that, all I thought about was death. It kills you. You’re not going to live. And I was trying to find out where and how I got cancer, and I didn’t get no idea until I was able to sit down, talk with my navigator and what procedure I would have to go do in order to help me with my cancer. So they gave me some choices. One I didn’t like because I had to be hung upside down for four hours, and I didn’t think I can do anything like that at my age. And next, they told me cancer, radiation, and I was scared of that because it was like burning fire. And I had seen other people how it done them and their skin, and it put fear in me. So, I decided to go and talk to my doctor. 

I want to be healthy. And when I started my cancer treatment, it was the scariest move. When they put a gown on me and laid me on that bed, they put these machines on me, and I had to lay there, and they mark me where they want to set it up, or where the cancer was at, they’re going to do the radiation. I didn’t understand it. I really needed help in my house, I was so sick, I own a bed, it’s a pull-out bed out of my couch. So I went to a bag, a bean bag to be able to lay on each and every day I was just under that much pain, and it was miserable to me, and I kept on working on it. I didn’t want my hair to be falling out. I didn’t want my body to be deformed all that was on my mind, and I decided to go and do this radiation. And now I can tell anybody I know it’s scary, I have experienced it, but it’s really after you get done with it, you’ll be so happy that it makes you feel like you were one time before, you’re back to your normal, you’re you. 

My reason to take the clinical trial, because I had fear in me about prostate cancer, and I did not know where and what it would be like of carrying this. So I had in my mind that I wasn’t going to do it. I couldn’t sleep at night. You know one…and how is it going to, how is this cancer going to hit me? I’m laying in the bed, “What’s it going to do? What should I do? How should I sleep to keep from worrying about me and this cancer?” I’m running back and forth to the bathroom, couldn’t eat and appetite gone and I got to the point, I’m going and take this test. So I called the navigator and he and I discussed this, and he convinced me.  

A clinical trial to me is the work of getting you with your prostate taken care of. I experienced a lot of goodness after I realized what this was really about.  The clinical trial, it really made me happy to be a part of it because I just didn’t believe that after learning about that word cancer, I’d feel good. I’d feel like I ain’t got the cancer, and that’s what that clinical experience showed me, and made me feel like. So, I’m happy with it. 

My advice to men, especially Black men, I advise them to check themself, your whole body, you need your health taken care of, if you want to be able to be out here and live with this prostate cancer. One thing I do know about Black men, they are afraid when it comes to taking care of themself as though they can look in the mirror and see all about themself and tell you whether there’s something wrong or not, but you can’t do that. I advise all men, not just only Black to take time out, talk to your provider. A lot of us got it, and we don’t even know we are carrying this around with us, but you like to go out and have fun, smoke your cigarettes, drink and do all your partying, but you’re still carrying that death weight on you. We don’t need that cancer, prostate. And I would advise all men, take time out and check yourself out, because it’s a good thing in life to do as being…want to be here on earth amongst other good men. And I would like to say, please do this, I’m a living witness. 

Look at me. I feel just the way I look and I’m serious to tell you to take that time out for yourself. 

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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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

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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.

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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.

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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. 

How Can BIPOC Prostate Cancer Patients Protect Themselves Against Care Inequities?

How Can BIPOC Prostate Cancer Patients Protect Themselves Against Care Inequities? from Patient Empowerment Network on Vimeo

How can BIPOC prostate cancer patients help protect themselves against care inequities? Host Dr. Nicole Rochester and Dr. Yaw Nyame share their perspectives about factors that work against equitable care for some BIPOC patients – and how patients and providers can work toward improving care for better health outcomes.

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


Related Resources:

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


Transcript:

Dr. Nicole Rochester: 

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, I am doing a lot of research on, and I think the statistics are so grey. Black men are 80 percent 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 with 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 ethnicities 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 going to 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 Johns 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 genitourinary cancer specialists, 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 race is when you check the 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 U.S. 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. 

How Can Prostate Cancer Providers Help Empower Patients?

How Can Prostate Cancer Providers Help Empower Patients? from Patient Empowerment Network on Vimeo.

 How can prostate cancer providers help empower patients? Host Dr. Nicole Rochester and Drs. Yaw Nyame, and Petros Grivas share their perspectives on how health providers can work with patients to empower them to make more informed decisions in their treatment journeys toward optimal prostate cancer care.

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


Related Resources:

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

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


Transcript:

Dr. Nicole Rochester: 

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?  

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 PSMA in San Francisco. Do you have it in Seattle? If you don’t have it in Seattle, I’m going to 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 daytime, 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-ly, 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: 

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.