Thriving With Prostate Cancer | Tools for Navigating Care and Treatment

Thriving With Prostate Cancer | Tools for Navigating Care and Treatment from Patient Empowerment Network on Vimeo.

How can you thrive with prostate cancer? Dr. Tanya Dorff discusses prostate cancer treatment and developing research, side effect and symptom management, and shares advice and resources for coping with emotional issues.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff here.

See More from Thrive Prostate Cancer

Download Resource Guide

Related Resources:

Tools for Partnering in Your Prostate Cancer Care

Tools for Partnering in Your Prostate Cancer Care 

Understanding Advanced Prostate Cancer Treatment Approaches

Understanding Advanced Prostate Cancer Treatment Approaches 

What Is Advanced Prostate Cancer?

What Is Advanced Prostate Cancer? 

Transcript:

Katherine:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar is part of our Thrive series, and we’re going to discuss tools to help you navigate life with prostate cancer. Before we meet our guest, let’s review a few important details. The reminder email you’ve received about this program contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar.

At the end of this program, you’ll receive a link to a survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars. And 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.

Well, let’s meet our guest today. Joining me is Dr. Tanya Dorff. Dr. Dorff, welcome. Would you please introduce yourself?

Dr. Dorff:

Thank you. Hi, I’m Tanya Dorff. I’m a medical oncologist and section chief of the genitourinary cancer program at City of Hope, which is near Los Angeles, California.

Katherine:

Excellent. Thank you so much for taking the time to join us today.

Dr. Dorff:

My pleasure.

Katherine:

Like all of the webinars in our Thrive series, we start with the same question. In your experience, what do you think it means to thrive with prostate cancer?

Dr. Dorff:

Well, that’s a big question. As a medical oncologist, my job is to try to strike a balance between cancer control and quality of life, and I guess that’s how I would put thriving with prostate cancer. It’s not always just about what is the PSA doing, but it’s also about, ‘How are you getting around your day-to-day life activities, and are you able to do the things you enjoy?’ So, treatments can be very effective. They can also have significant side effects, and we spend a lot of time day in and day out trying to help men strike a good balance.

Katherine:

Thank you for that, Dr. Dorff. Let’s move on to how prostate cancer is treated. This webinar is mainly focused on advanced prostate cancer. But before we get into treatments for more advanced disease, let’s do a quick overview of early-stage prostate cancer options. First, some prostate cancer patients are often put in active surveillance. What does that mean?

Dr. Dorff:

Active surveillance is different than what some people think it is. So, some people think it means we’re not going to treat the cancer, that we’re just going to let it take its natural course. It’s actually quite active, as the name implies. We’re really trying to get to know a person’s cancer and understand whether it is a cancer that will ultimately need to be treated, in which case we will intervene with definitive treatment, whether that be radiation or surgery, but the goal is to find those patients whose cancer is not very aggressive and may never need to be treated so that they can avoid the possible risks that come from definitive local therapy.

Katherine:

So it’s more like a watch-and-wait situation?

Dr. Dorff:

But it’s…I, again, view it as a little bit different than that. Watch and wait is “let’s just let it do what it’s going to do.” Active surveillance is what I call a getting-to-know-you period. Let’s understand whether these clinical features that have signaled that your cancer may be low-risk, may not need treatment – let’s see if that really plays out, let’s make sure we haven’t missed anything, and if your cancer needs treatment, we’re going to treat it.

Katherine:

Okay, that’s good to know, thank you. When it is time to start treatment, what types of approaches are available for early-stage prostate cancer patients?

Dr. Dorff:

Localized prostate cancer or early-stage prostate cancer can be cured with either surgery or radiation, and we actually view these to be equally effective options. Sometimes people have the misconception that if they’re getting radiation to treat their localized prostate cancer, they’re being relegated to a noncurative or a less effective option. It’s actually not the case. We don’t have truly good, randomized, head-to-head studies.

You can find retrospective studies, people looking back at 2,000 patients treated at this institution or that institution, and you can find a study that pretty much says whatever you want it to. You can find some that say surgery’s better, some that say radiation’s better, but in sum, we sort of view them as being equally effective options. And so, they just have different side effect profiles, and so, we often counsel patients who are considering which local treatment to receive to look at what their current urinary function is, what their goals are for their long-term function, both urinary and sexual, and use that as a guide, as well as their age, their other health conditions, and those kinds of factors. 

Katherine:

Let’s turn now to how advanced prostate cancer is treated. First, what does it mean to have advanced disease?

Dr. Dorff:

Advanced prostate cancer signals cancer that’s come back after curative intention or has presented de novo in a way that means we don’t currently have a tool to cure it. That’s at least how I view advanced prostate cancer. You could take a broader definition and consider some high-risk localized patients who need multimodal therapy, but to me, it’s really signaling a shift from something we’re aiming to cure versus something we’re aiming to manage, so that can manifest just as a PSA that’s rising, what we call biochemical recurrence, or it can manifest as visible metastatic disease.

Katherine:

What does “locally advanced” mean?

Dr. Dorff:

So, “locally advanced” means that it hasn’t metastasized, but it might be involving the local structures, like the seminal vesicles or the bladder or some of the regional lymph nodes, the pelvic lymph nodes.

Katherine:

How is advanced prostate cancer treated?

Dr. Dorff:

The cornerstone of treatment for advanced prostate cancer has really been hormone therapy. I think there’s a lot of negative stuff out there on the internet about hormone therapy that I think does a disservice to patients because hormone therapy is truly very, very effective and, for many men, can be quite livable.

I have patients who live more than a decade on hormone therapy, and they’re running their businesses and they’re raising their grandkids, they’re traveling, they’re running 10Ks, they’re doing all the things that they might want to be doing. That’s not to say there aren’t side effects, but hormone therapy is an effective cornerstone, and I really hope people won’t dismiss it offhand because of the negative things they’ve heard or read about it.

Katherine:

What about other treatment classes?

Dr. Dorff:

Most of our other treatments are really layered on top of hormone therapy. We may get to a point – 10 years from now, I don’t know, sometime in the future – when we don’t start with the hormone therapy, so a lot of patients come in asking about the new radiopharmaceutical, the Lutetium-177-PSMA that got approved last year, or about whether chemotherapy can be used. They can be, but they’re really layered on top of hormone therapy, so the hormone therapy is the first treatment, it’s the most effective right now, and then it’s continued as we swap out – we add a novel hormonal agent like abiraterone (Zytiga), or enzalutamide (Xtandi), or one of the others.

When that is no longer effective, we swap that out, we might use chemotherapy or the radiopharmaceutical. There’s also an immunotherapy that’s been around for more than a decade called sipuleucel-T, and now there’s the targeted therapies – the PARP inhibitors – as well for select patients.

Katherine:

Where do clinical trials fit into treatment?

Dr. Dorff:

That’s a great question. I’m so glad you asked. Clinical trials some people mistakenly believe are your last choice, like you’ve gone through every single treatment we have, and then you go to a clinical trial. That’s not the case. Some of the biggest advances in prostate cancer have been when we’ve taken drugs that work in a more advanced resistance setting, like a second- or third-line, and when we move them right up front, first-line, we dramatically amplify their benefit. We dramatically improve survival.

So, if we don’t think about a clinical trial in the first line, we’re going to miss the opportunity to not only develop those new treatment paradigms, but actually participate in them ahead of when they become the new standard of care down the road.

Another misconception that people have often about clinical trials is that they are always randomized, there’s always a flipping of the coin in assignment of different treatments, and that they may include a placebo. So, most of our clinical trials at this point do not include placebo. Because we have so many effective treatment options, we’re more and more frequently comparing either two drugs against one, so everyone’s getting at least one effective drug, or we’re not comparing at all, but everyone’s getting some new treatment or some combination of treatments when we’re working out dosing in that scenario, like a Phase II.

So, clinical trials are really an option at any stage of prostate cancer, even at diagnosis for localized disease all the way through, and truly, I hope people would consider looking at those as options because that’s where some of the most innovative treatment options are going to become available to them.

Katherine:

Yeah. What sorts of questions should patients ask their doctors about clinical trials?

Dr. Dorff:

There are a few really basic things to ask about any clinical trial that you’re being presented as an option. One is is there a randomization? Is there a treatment assignment where some people get one treatment and some people get another treatment? Another one is is there a placebo? I think if we just get those questions up front, right away, then people may be more open to hearing what’s happening in the rest of the trial.

Our informed consent documents are reviewed by ethical consultants and are really meant to inform about risks more than benefits, so the other thing to really ask the provider is what’s the goal of the trial, because that’s often not clearly communicated in an informed consent. Why did the people who designed this trial think it was a good idea? Is there science behind it, is there clinical data behind it, and do you think this is something that, in the future, could end up being the new way that prostate cancer is treated?

What is it about me that you think makes me a good candidate for this trial? What’s been your experience? – even though it’s more anecdotal, but it’s often nice to hear from a physician “I have patients on this trial, they’re having these types of side effects, they’re having these types of benefits, and we can’t know what will happen for you, but at least I have a sense of how things are going on this trial.”

Katherine:

Yeah, those are great questions. What about cost? Is that a question that patients should ask about?

Dr. Dorff:

Patients often do ask about that. Costs are really complex in this medical care landscape that we have in the United States. Clinical trials – I think there’s a lot of misunderstanding about costs. Some people think that everything is paid for by the clinical trial, which is not true.

There is a system by which we assign things that will be paid for by the clinical trial – anything that’s novel and only being done as part of the trial versus things that would be done anyway if you were not in the trial and if you were just receiving regular care, such as your PSA test, your clinic visit, your CAT scan potential, or your bone scan.

So, there are some costs that are not covered, and in that case, if a patient has an insurance plan where they have copays for a clinic visit or for a CAT scan, those aspects that are not felt to be unique to the clinical trial and are getting billed to standard insurance – that means they’re still going to have those copays, but anything that is unique, if there’s an extra set of scans, if there are extra clinic visits, those get billed to the study, and the patient should have no extra cost on that basis.

Insurance companies should view clinical trials very favorably, because they’re often getting some clinical care paid for. They’re getting extra treatment at no cost, so anything that’s new on the treatment plan in the clinical trial is free to the insurance company on the patient, it’s paid for by the study, so it’s a good deal, generally speaking, and more importantly, there’s legislation that really seeks to ensure that regardless of your insurance, you should have access to clinical trials because they are felt to be often the best way to have your cancer treated.

Katherine:

Yeah. Dr. Dorff, are there emerging therapies that are showing promise?

Dr. Dorff:

There are a lot of emerging therapies. People all over the country and all over the world are working to find new and better ways to treat prostate cancer. So, the breakthrough radiopharmaceutical last year of the Leutetium-177-PSMA is the first, but not the last, I believe, in that field. There are other antigens we can target rather than PSMA, there are other particles we can use rather then Lutetium-177, and so, there are currently clinical trials looking at different constructs.

Take a winning strategy, and then tweak it a little bit to see if you can make it even better, right? Similarly, the PARP inhibitors, which are FDA-approved for prostate cancer, are being studied in different types of clinical trials to try to expand the number of patients who can benefit from them and amplify the benefit – so, moving them earlier, increasing the types of patients who are appropriate.

And there are additional targeted therapies, like the PI3-kinase AKT inhibitors, the CDK-46 inhibitors, that are being looked at in combination with our standard hormonal drugs that I think could end up being big advances depending how the results play out. There’s a novel class of drugs, the antigen receptor degraders, which also look tremendously promising in clinical trials and are in Phase III testing in some cases, and then, some additional ones are a little earlier in testing.

And then, there’s immunotherapy, which is at the heart of my research at City of Hope. Immunotherapy offers the promise of using your own immune system to control the cancer or eradicate the cancer, so we’re looking at different strategies, from oncolytic viruses, to bi-specific T-cell-engaging antibodies, to CAR-T cell therapies in hopes that we will find something that can really induce a big, deep, durable, long-lasting remission for patients.

Katherine:

That’s really promising. What about treating symptoms of the disease itself, like bone pain?

Dr. Dorff:

Bone metastases are the predominant pattern of spread, and so, what really drives the story for a lot of our prostate cancer patients during their journey with cancer has to do with bone complications – not always pain, but unfortunately, there can be pain pretty frequently.

So, we start by trying to protect the bones early on. We know that when we use our hormonal therapies, osteoporosis can develop, so we want to avoid that. I’ve had patients where their cancer was well-controlled, but they had an osteoporosis fracture that they were miserable from, so it starts at the beginning, at protecting the bones, checking a bone density scan and/or using a bone-supportive agent like zoledronic acid (Zometa) or denosumab (Xgeva), and then, in the metastatic setting, as the disease progresses, we intensify that use of bone-supportive agents.

We sometimes end up using radiation therapy, which is primarily external-beam traditional kind of radiation, but there is also the radiopharmaceutical Radium-223 (Xofigo), which delivers the radiation kind of more internally through the bloodstream to areas of the bone that are active from the prostate cancer, and sometimes we end up needing something even like surgery, but the bones are a major part of the story.

Katherine:

Yeah. What about sexual dysfunction? Are there approaches that can help?

Dr. Dorff:

So, this is generally an area that’s managed more by urology. There definitely are things that urologists do to help patients who have lost sexual function due to prostate cancer treatments. They can involve medicines, they can involve slightly more invasive things like a suppository or an intracavernosal injection. There are also more mechanical ways, like a pump device or a penile implant, but generally, anything beyond the first level, which is Viagra, will be handled more by a urologist than a medical oncologist.

Katherine:

What is palliative care, and how can it help men with prostate cancer?

Dr. Dorff:

Palliative care is something that we think about more towards the end of life, where we’re focusing on cancer symptoms more than treating cancer. However, some studies have shown – very prominent studies – that early palliative care in some malignancies is associated actually with better survival, meaning that paying attention to the patient’s symptoms is actually a really important part of keeping them well and keeping them alive as we treat the cancer.

So, more and more, we’re starting to integrate palliative care earlier in the disease.

I think that can sometimes signal a little alarm for patients – “Oh, I’m being referred to palliative care, that means my doctor doesn’t really think they can treat my cancer anymore” – and it’s gonna take some education to really help people transform their thinking about palliative care as a strategy that’s not for the end, but something that really should be part of our treatment all along.

So, our palliative care team, or what we call supportive medicine at City of Hope, uses treatments to manage pain. They have a broader spectrum, they’re more focused on all the different modalities to treat pain, so an oncologist or urologist can treat pain, but when we refer to palliative or supportive medicine, you get just that extra expertise, especially if people are having a lot of side effects from pain medicines, but our supportive medicine doctors aren’t only pain management doctors.

They help with other symptoms, like nausea or constipation, to some extent urinary symptoms for my prostate cancer patients, although we rely heavily on urology for that, and also just the existential, or spiritual, or emotional components.

Our supportive medicine team typically includes not only an MD, an advanced practice provider like an NP, but also someone from psychology, someone from social work, because dealing with cancer is really stressful and challenging, and in an ideal world, palliative care is not only taking care of the symptoms of the cancer that are physical, but also helping the whole being, the whole family unit that’s going through this experience have less emotional distress as well.

Katherine:

Yeah. Well, that leads us perfectly into the next section, which is about emotional support. Beyond treatment, another large part of thriving with prostate cancer is dealing with the emotions that come along with the diagnosis, like fear and anxiety. Whether it’s the stress of being in active surveillance or worrying about progression, many patients need help coping emotionally. Why do you feel it’s so important for patients to share these emotions with their doctor or their healthcare team?

Dr. Dorff:

I think it’s a conversation that’s not held enough between patients and their physicians, and if we don’t remember to ask our patients, we will just focus on the medical because that’s our main wheelhouse, that’s what we’re best at. So, if a patient brings forth that they’re having some emotions related to the cancer, it is helpful to us in remembering – we ought to do everything 100 percent all of the time, but let’s face it, we’re physicians with time pressures and certain areas of comfort and expertise. So, if a patient brings it up, that is super helpful because then we know someone’s needing assistance, which probably every patient is, whether they tell us or not, but that triggers us to then offer appropriate referrals.

And also, it tells us they’re open to it. If we have to ask every patient, “Are you having any emotional distress?”, even if someone answers yes and then we make a referral, they may not have actually been ready for it or open to it. So, having the patient come forth and raise that, I think, is really helpful and important.

Katherine:

Many prostate cancer community members are interested in learning more about their cancer and are hungry for information. For men who are newly diagnosed, are there educational resources that you recommend?

Dr. Dorff:

There are several good patient-focused or patient-facing educational resources for cancers generally. So, the American Society of Clinical Oncology, or ASCO, runs a patient-facing website called Cancer.net.

They also produce a lot of educational materials. So, for instance, we have some handouts in our clinic rooms produced by ASCO that really just help patients understand, okay, when you’re having diarrhea related to cancer treatment, here are some strategies. So, there’s lots of good information from them. There’s also a group specific for prostate cancer called Prostate Cancer Foundation.

So, they are an organization that works a lot in funding new research in prostate cancer, but they also put out some really helpful publications, again, that are aimed at prostate cancer patients, and really kind of covering the whole spectrum of disease, as well as more holistic aspects which are really important, things like diet and exercise and how that plays into overall wellbeing and health during prostate cancer treatment. So, we keep some of those little booklets in our rooms as well to hand out to patients, but they’re probably available by request online as well on one of the Prostate Cancer Foundation websites.

Katherine:

Yeah. What about resources for prostate cancer patients who are already really knowledgeable about their disease and want to stay up to date on the latest research and treatment? What’s available for them?

Dr. Dorff:

There are some conferences that seek to educate patients on a little higher level. It can be challenging because not every prostate cancer patient is at the same place, but they can look for some of those conferences. Frankly, they can follow Twitter or some of the other social media.

Sometimes prostate cancer support groups also will bring in speakers who try to provide updates about emerging treatments, or where the research is going, or where the field is going. So, most big cancer centers are gonna have a support group.

Obviously, it’s very variable, and sometimes they may focus more on the psychosocial aspects, but I do think a lot of them will include people like me, who are just trying to connect with the cancer patients on various levels about the latest and greatest.

Katherine:

We received some audience questions prior to today’s webinar, and I’d like to go through some of them with you. Bob asks, “Does androgen deprivation therapy cause cognitive issues?”

Dr. Dorff:

So, androgen deprivation therapy is another way of saying hormone therapy. We’re lowering testosterone, which is an androgen, and the question about cognitive issues is a good one. If you look in the literature, it’s not been well documented, and part of that is because our patients tend to have age and other comorbidities that can lead to changes in cognition happening at the same time as they’re being treated for prostate cancer, but also because the tools just haven’t been very good.

The tests where we measure how your brain is working have traditionally not been very good. There are some better tools that have been developed, and we’re hoping to be able to – with some ongoing studies – better define are there cognitive changes? If so, how severe are they, how common are they, are they more common with one drug versus another? Very basic questions.

I will say in my own practice, after 15 years of treating prostate cancer, I do believe that some patients experience cognitive changes during ADT. They can be mild, like taking longer to remember someone’s name or walking into a room and forgetting why you’re there, which, frankly, happens to all of us when we’re not having our best days, but obviously, I do see that a little bit more with prostate cancer patients who are receiving hormonal therapy.

For some of my really high-functioning patients, it can be helpful to use a drug that treats attention because some of the cognitive dysfunction actually ends up being an issue with attention. So, we use drugs like methylphenidate (Ritalin) or dextroamphetamine mixed salts (Adderall) to support patients who need to be really focused, and I’ve had many patients tell me that that has made a huge difference for them, so it’s not going to solve the overall changes that may happen in the brain on the basis of the hormonal deprivation, which we know happens from animal models, but it can help in the short term so that men can continue to function at a high cognitive level, despite ADT, when needed.

Katherine:

Yeah. George wants to know, “Are there any advances in imaging that patients should know about?”

Dr. Dorff:

Yes. So, the PSMA PET scans – so, these are a nuclear medicine imaging that looks for prostate cancer using a protein called PSMA, and there are several of them, there’s the F-18-based one called Pylarify, and then there are the Gallium-68 versions, Illuccix and Locametz, so those have been revolutionary. They can see prostate cancer in much smaller quantities, so we use them a lot for rising PSA after prostate surgery or radiation to see where is his small amount of cancer, and hopefully, we can treat it better by seeing it earlier.

They are also now being used to select patients for potential benefit from a treatment like Lutetium-177-PSMA, which obviously won’t work if the cancer doesn’t have that protein, so the imaging helps see who’s got the protein, who can benefit from the treatment. So, that’s the biggest imaging advance. There are some others, like using MRI fused to ultrasound for prostate biopsy at diagnosis. There’s also another kind of PET scan called a fluciclovine PET scan, which we still sometimes use because not 100 percent of prostate cancers have PSMAs, so sometimes we need something a little bit different.

Katherine:

Antonio had this question. “I heard that statins – cholesterol-lowering drugs – could help fight prostate cancer. Is that true?”

Dr. Dorff:

There’s been a lot of interest in the statins because in addition to having those positive effects against cholesterol, which are helpful when hormonal therapy that we use for prostate cancer disrupts our lipids, they have these anti-inflammatory properties that are being looked at in a number of different research avenues.

And then, there has also been a new, evolving understanding that they interfere with some hormone-binding compounds in the body, and so, could augment the effect of androgen deprivation therapy.

So, there has been interest in prospective studies because the literature we have right now is really retrospective, so we can’t really tell a patient which statin drug or what dose and for how long would be associated with a positive benefit, and we don’t really yet know how to use them proactively during someone’s treatment, but I will say if you’re starting on hormone therapy or ADT, having your lipids checked and getting on a statin if your lipids are not in a good range is really important anyway to just protect your cardiovascular health, and then, maybe we’ll find out that it does actually help your prostate cancer treatment be more successful as well, but I would say those data still need to be fleshed out a bit more.

Katherine:

Thank you for those answers, Dr. Dorff. I appreciate it. And please continue to send your questions to question@powerfulpatients.org, and we’ll work to get them answered on future programs. As we close out our conversation, Dr. Dorff, I wanted to get your thoughts on where we stand with research progress. Can patients truly thrive with advanced prostate cancer?

Dr. Dorff:

Absolutely. I would say in the 15 years I’ve been treating prostate cancer, I’ve really seen a transformation from a disease with a short lifespan and a lot of symptoms to a disease where people can actually thrive, living more than a decade even with advanced or metastatic prostate cancer, because the treatments have gotten so much better, and I think also potentially due to the increased awareness on the part of physicians about helping people stay healthy during their longer-term treatment. So, definitely, my patients today live longer and better than my patients did when I started treating prostate cancer.

Katherine:

Well, it seems like there’s a lot of progress and hope, then, for prostate cancer patients.

Dr. Dorff:

Absolutely.

Katherine:

Thank you so much for joining us today, Dr. Dorff. I really appreciate it.

Dr. Dorff:

Thank you. I hope people found it helpful.

Katherine:

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 being with us today.

What Questions Should You Consider Asking Your Prostate Cancer Care Team?

What Questions Should You Consider Asking Your Prostate Cancer Care Team? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients have engaged conversations with their healthcare team? This animated video reviews key questions patients can ask to help them navigate their treatment and care decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.  

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

Thanks for joining us! In this video, Niki and I are going to walk you through key questions to ask your prostate cancer team as you navigate your care decisions. 

First of all, it’s helpful to ask your physician how much experience they have treating prostate cancer patients. If appropriate, you may want to consider a second opinion. 

Niki: 

And it’s important to also have a deeper understanding of your disease by asking: 

  • What stage and grade is the prostate cancer? Has it spread beyond the prostate? 
  • Are there additional tests that you should undergo to provide a fuller picture of your disease? 
  • What educational resources are recommended to learn more about prostate cancer? 

Anthony: 

Once you understand more about your diagnosis and disease, then it’s time to really understand what steps could be next.  

And, if – and when – your disease does need to be treated, you should feel engaged in deciding on your treatment plan.  

Niki: 

That’s right. You can start by asking if treatment needs to begin right away or if you will be monitored for any changes. 

  • Then, establish the goals of your treatment plan. Based on your diagnosis and stage of disease, is the goal to try to cure the cancer or to manage the disease symptoms?  
  • Ask what treatment options are available to you and which approach is recommended for YOUR disease? 
  • And inquire if there is a clinical trial that could be right for you.  
  • Finally, ask what your options are if the initial treatment doesn’t appear to be effective or if your disease progresses. 

Once you know your options, ask about the potential short term and long-term side effects of each approach and how they may be managed. 

Anthony: 

You should also find out how your lifestyle may be impacted. For instance: 

  • Find out how each approach could impact your daily life, including your sex life, and for how long. 
  • You may also inquire about how treatment may impact fertility and if you should speak with a fertility specialist. 
  • Ask about the financial implications of each approach and whether there are resources for financial assistance. 

Niki: 

That’s great advice, Anthony. We hope these questions give you a good starting point for engaged conversations with your team. Remember, you may have more questions related to your individual situation, these are just a starting point to help.

Anthony: 

Don’t forget to download the guide that accompanies this video. It will have a comprehensive list of the questions we have reviewed. 

And visit powerfulpatients.org/PC to access more videos with Niki and me. 

You Have a Role in Your Prostate Cancer Care Decisions

You Have a Role in Your Prostate Cancer Care Decisions from Patient Empowerment Network on Vimeo.

What role do patients play in their prostate cancer care decisions? This animated video reviews the shared decision-making process and outlines steps for patients to engage in their care.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

What Questions Should You Consider Asking Your Prostate Cancer Care Team?

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.   

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

Thanks for joining us! In this video, we’re going explain why you should take an active role in your prostate cancer care and review steps to help you engage in the decisions that need to be made. 

Niki: 

That’s right, Anthony.  

Which leads me to the term “shared decision-making.” You may have heard of this term already – basically, it means that you and your healthcare team collaborate on care decisions and the goal is to have YOU be at the center of these decisions. 

Anthony: 

That’s right! For example, when it was time to discuss my care plan, my doctor walked me through the considerations of each approach and how each option could impact my lifestyle. I asked questions and shared my goals during the conversations. And I felt HEARD. 

Niki: 

Exactly – that’s shared decision-making in action. When you are living with cancer, often the risks and benefits need to be weighed to decide which course of action could be best for your individual disease. So why is it so vital to be an active participant? Studies show that patients who engage in their care may have better outcomes and experiences1. And it will help you learn more about your disease and move forward with confidence. 

Anthony: 

Now that you know what shared decision-making IS and why you should become a partner in your care, let’s review steps that will help you become more engaged: 

The first, and most important step, is to educate yourself about your disease.  

Niki: 

Your doctor’s office can be a great source of information and resources, so it’s a good place to start. And there are also several advocacy groups that provide educational materials, for instance: [links on screen as they are read]: 

  • Patient Empowerment Network, the creator of this video. 
  • The Prostate Cancer Foundation. 
  • The Prostate Cancer Research Institute. 
  • The Prostate Health Education Network, which focuses on services and support for Black men. 
  • And ZERO-The End of Prostate Cancer. 

Anthony: 

Once you learn more about your prostate cancer through resources like these, you will feel more empowered to voice your opinions. Remember, it’s important to speak up and ask questions at each stage. 

Niki: 

So, what else can you do to be a partner in your decisions? 

  • First, make sure you understand and communicate the goals of your care before making any decisions. 
  • Then, make sure you are informed about your options and ask for supporting materials if you need clarity. 
  • And ask how your lifestyle may be impacted by each approach. 
  • You should also discuss the risks and benefits of each option. 
  • Request resources to aid in decision-making and information that can help determine the best route for your individual disease. 
  • As always, bring a friend or family member and discuss your options with loved ones. 
  • Finally, remember YOU are at the center of your care. You should feel comfortable with any choice before you move forward. 

Anthony: 

Now that you’ve watched this video, make sure to download the guide that contains highlights of this discussion – and you can print it out or save it on your computer to reference in the future. 

Niki: 

Visit powerfulpatients.org/PC to access more videos with Anthony and me. Thanks for joining us! 

Building a Relationship With Your Prostate Cancer Healthcare Team

Building a Relationship With Your Prostate Cancer Healthcare Team from Patient Empowerment Network on Vimeo.

Who are the potential members of your prostate cancer team? This animated video reviews the key providers who may be involved in your care and provides tools for confidently communicating with team members.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi, I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with prostate cancer. Thanks for joining us! 

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

In this video, we’re going to walk you through the members of your prostate cancer healthcare team – and share tips for building strong relationships and communicating more effectively. 

Niki: 

When it comes to prostate cancer, you need a team that collaborates on all aspects of your care. And it’s vital that you utilize ALL the members. After all, they are there to help you. 

So, who IS on your team? 

There are several different providers who may be involved with your prostate cancer diagnosis and care: 

  • Let’s start with a urologist. This is a doctor who specializes in the male reproductive organs and can perform prostate cancer surgery. Some are also trained oncologists – urologic oncologists – who are specially trained in cancer. 
  • Then there could be a radiation oncologist. This team member specializes in treating prostate cancer with radiation. 
  • Next, there may also be a medical oncologist. This is a physician who is trained in non-surgical prostate cancer approaches, such as hormonal therapy and chemotherapy. 
  • And, finally, your primary care physician should also be kept in the loop. 

Anthony: 

And beyond your doctors, there is a whole team of supportive professionals to help you along the way. For instance: 

  • A nurse like Niki can provide you with information to help with decisions and share advice for managing day-to-day issues, including symptoms and side effects. You may also want to work with a nurse navigator, who is specially trained to help guide you through your cancer care. 
  • A social worker can help you navigate the details of your care and suggest support resources for you and your family.  
  • And a palliative care specialist can work with you on helping to relieve symptoms, pain, and even stress-related issues like anxiety and depression. 

Niki: 

 There are several other team members you can rely upon, including: 

  • A pharmacist, who can dispense prescription medications and inform you of their use and potential side effects. 
  • A genetic counselor, who has special training in helping patients understand their genetic testing options and the potential impact of the results.  
  • And don’t forget mental health professionals. Treating your mental health is just as important as treating the prostate cancer itself.  

Anthony: 

Exactly. I struggled emotionally when I was diagnosed, so I reached out to the social worker, who connected me with a counselor and support groups. Seeing a professional and joining a group made feel less alone and more hopeful.  

Niki: 

And last, but not least, a care partner or loved one is another core member of your team.  

Anthony: 

Absolutely! Whether it’s a friend or family member, having someone with you at appointments or to talk about your options is beneficial. 

Now that you know who may be on your team, let’s talk about strengthening communication. By communicating effectively, you can learn about your disease and become an active partner in care decisions. Here are a few tips to help you: 

  • First, make sure everyone on your team is aware of your care goals. 
  • And bring someone to appointments to help you write down important information and make sure to request post-visit summaries to help you retain the information. 
  • Ensure you have access to your patient portal and use the messaging service to communicate directly with your team members. Ask follow-up questions about your appointment if necessary. 
  • Finally, it’s essential to speak up in appointments. Your team wants to hear your questions and know how you are doing. It could help them adjust your care plan. 

Niki: 

Thank you for joining us – we hope you feel more empowered! And remember to download the guide that accompanies this video to review what we discussed. 

Understanding Your Prostate Cancer Diagnosis

Understanding Your Prostate Cancer Diagnosis from Patient Empowerment Network on Vimeo.

What do you need to know about your prostate cancer diagnosis? This animated video reviews the diagnosis process and provides steps for working with your healthcare team to understand your individual disease.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi! I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with prostate cancer.  

[Disclaimer on screen: Patient experience depicted in this video is fictional.] 

Anthony: 

In this video, we’ll help you understand prostate cancer and how it is diagnosed and staged. 

Niki: 

So, what is prostate cancer exactly? It starts when cells in the prostate gland grow out of control, forming a cancerous tumor.  

It’s the second most common cancer in American men. And while it can be serious, there are options available for prostate cancer care.  

Anthony: 

And there are certain risk factors that may make you more likely to develop prostate cancer, such as: 

  • Your age. 
  • Your race and ethnic background. For instance, Black men are more likely to be diagnosed with prostate cancer than men of other races. 
  • Your family history and your genetics.  

Niki: 

That’s right, Anthony. Now that we have a better understanding of what prostate cancer is, let’s move on to how it is diagnosed.  

Your healthcare team will use a variety of tests to better understand your disease. 

For example, A PSA test [PSA: Prostate-Specific Antigen on screen] and a biopsy may be used to confirm a diagnosis. And imaging tests—like an MRI or CT scan—are used to find out if the cancer has spread. 

These test results also help your doctor stage your disease. Staging helps indicate the location of the cancer, whether it has spread beyond the prostate, and its impact on other areas of the body. It may also assist in guiding a patient’s treatment plan.  

When staging prostate cancer, doctors may consider: 

  • The size of the primary tumor and where it is located. 
  • They’ll also factor in if the cancer has spread to nearby lymph nodes or other parts of the body. 
  • The patient’s PSA level is also used in staging. This test measures the amount of prostate-specific antigen in the blood. 
  • And finally, the cancer’s grade, which is based on the Gleason score. A Gleason score measures how likely the cancer is to spread and whether it is aggressive. 

Anthony: 

Thanks for explaining that, Niki. So, what are the stages of prostate cancer?  

Niki:

Great question!  

  • Prostate cancer stages begin at stage I, which indicates a slower growing disease that is confined to the prostate. 
  • And stage II means the cancer is only in the prostate, but the disease may have an increased chance of growing or spreading.  
  • Stage III prostate cancer indicates that the tumor has spread to areas close to the prostate and may be considered locally advanced.  

Anthony:   

And I was diagnosed with stage IV prostate cancer, which means it has spread beyond the prostate and is considered advanced prostate cancer.  

Niki: 

That’s right. And because prostate cancer staging is complicated, it’s important to review test results with your doctor to understand your stage and grade. If you don’t understand your diagnosis, make sure to ask questions and request resources to help you.  

Anthony: 

Here are some additional steps you can take to feel more confident about understanding your diagnosis: 

  • First, ask about the stage of your prostate cancer and whether it is aggressive. 
  • And confirm that you have had all relevant testing to inform an accurate diagnosis, including genetic testing, if appropriate. 
  • Then, be sure to review the test results together with your team to make sure you understand how they impact your care and treatment options. 
  • Also, ask about your Gleason score and how it impacts your decisions.  

Niki:

And find out how experienced your physician is in treating your type of prostate cancer and consider seeking a second opinion with a prostate cancer specialist. 

Anthony: 

Finally, don’t hesitate to request support resources to help you cope emotionally with your diagnosis.  

Niki: 

Visit powerfulpatients.org/pc to view all the videos in this series and download the guide that accompanies this video to review what we’ve discussed.   

Anthony: 

Thanks for joining us! 

Tools for Becoming an Educated and Empowered Prostate Cancer Patient

Tools for Becoming an Educated and Empowered Prostate Cancer Patient from Patient Empowerment Network on Vimeo.

What steps can you take to become an empowered prostate cancer patient? In this animated video, you’ll learn tools for self-education and self-advocacy to help you partner in your care decisions.

Download Resource Guide

See More From Shared Decision Making: Navigating Prostate Cancer Care

Related Resources:

Building a Relationship With Your Prostate Cancer Healthcare Team

You Have a Role in Your Prostate Cancer Care Decision

Transcript: 

Niki: 

Hi! I’m Niki, and I’m a prostate cancer nurse practitioner. And this is Anthony, who is living with advanced prostate cancer.  

Together, we’re going to guide you through a series of videos to help you learn more about prostate cancer and give you steps to play an active role in your care and treatment decisions. 

First, I want to introduce you to the organization responsible for this video—the Patient Empowerment Network—or “PEN.”  

PEN’s mission is simple. It’s to provide cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in their goal of receiving the best, most personalized care available.  

[Patient experience depicted in this video is fictional.]

Anthony: 

So, what does it mean to be an empowered patient? The World Health Organization defines it as “a process through which people gain greater control over decisions and actions affecting their health.”1 

When I was first diagnosed with prostate cancer, I was overwhelmed, and I didn’t feel comfortable sharing my concerns and opinions. But through finding out more about my disease, working together with my team and learning to advocate for myself, I felt more in control and more confident speaking up. 

Niki: 

Exactly, Anthony. One of the first steps to becoming an empowered patient is to educate yourself about your disease. You can start learning about your prostate cancer by:  

  • Making sure you can access your online patient portal, if available, so you can view your medical records, communicate with your healthcare team, and access resources when you need them. If you don’t know how to use the patient portal, just ask your doctor’s office – they should have a set of instructions on hand. 
  • You can also visit credible prostate cancer advocacy groups to learn about your condition. These organizations are typically an excellent source of information and support. Ask your healthcare team for recommendations.  

Remember, online information is never a substitute for medical advice. You should always consult your doctor about what you’ve learned. This will become easier as you get a better understanding of your disease and feel more comfortable sharing with your healthcare team. 

Anthony: 

That’s right, Niki. But, as I learned firsthand, speaking up is not always easy. Here are some tips that helped me: 

  • Write down your questions before your appointments. Visit powerfulpatients.org/pc to access office visit planners to help you organize your notes. 
  • And, try to bring a friend or loved one to your appointments to help you remember information and to take notes for you. 
  • Another tip is to be honest about how you feel and share any treatment side effects or symptoms you may be having with your healthcare team. Your doctor wants to know how you are doing and may be able to help you if you are having issues.  
  • It’s also a good idea to consider a second opinion to help you feel confident in your care and to provide piece of mind. This is especially important if you feel like you are not being heard. 
  • And, lastly, you have a voice in your care decisions. Don’t hesitate to ask questions – YOU are your own best advocate.  

Niki: 

That’s great advice, Anthony! We’ve covered a lot. So don’t forget to download the guide that goes with this video—it can help you remember what we’ve discussed. 

Anthony: 

And visit powerfulpatients.org/PC to view more videos with Niki and me. Thank you for joining us!  

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial from Patient Empowerment Network on Vimeo.

Dr. Andrew Armstrong, director of prostate cancer research at the Duke Cancer Institute, provides expert advice on what questions prostate cancer patients should ask when considering participation in a clinical trial. 

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More From Prostate Clinical Trials 201

Related Resources

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials?

Why Should Prostate Cancer Patients Be Empowered

Why Should Prostate Cancer Patients Be Empowered?

How Can Prostate Cancer Patients Access Clinical Trials

How Can Prostate Cancer Patients Access Clinical Trials?


Transcript:

Katherine Banwell:

What are some key questions that patients should ask their healthcare team before even participating in a clinical trial?  

Dr. Armstrong:

I think number one is what are the alternatives that I would have if I did not participate in the clinical trial? What are the standard of care therapies? And prostate cancer now has a vast menu. There is two different types of chemotherapy. There are two different types of target radiotherapy, that’s Pluvicto and radium. There’s immunotherapy, with Sipuleucel-T and other immune therapies. There are multiple hormonal drugs. There are precision medicines, like I mentioned, for men with certain hereditary types of prostate cancer. So, it’s important to hear what the standard of care is, and many patients don’t necessarily even hear that. 

And then based on what patients have already seen and what’s the expectation? Risks and benefits around those. 

And then on top of that, research can complement that or either replace or come after those standard of care approaches. Certainly if a patient has exhausted the standard of care approaches, a trial can offer real benefits. 

It’s important to ask about risks. What have other patients experienced going into that study? What kind of toxicities, good or bad? What other – what’s the evidence that it has helped people before? If it’s never been studied in people, the evidence might just come from the laboratory. But hearing about why is this so promising, why have you chosen to invest so much time and energy in this trial, is a good question. 

And then if you’re hearing about a trial and you’re making a decision to travel, sometimes asking questions about whether the trial will cover your lodging or transportation, gas money, airport travel. Some trials do do that. 

You can also look on clinicaltrial.gov for sites that are near you. So, many centers open the same trial in a different state, so you can look on that website to see if there’s a trial near you for what you’re looking for.  

How Can Prostate Cancer Patients Access Clinical Trials?

How Can Prostate Cancer Patients Access Clinical Trials? from Patient Empowerment Network on Vimeo.

Dr. Andrew Armstrong shares trusted resources for accessing information about prostate cancer clinical trials and reviews common barriers to participation.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More From Prostate Clinical Trials 201

Related Resources

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials?

Why Should Prostate Cancer Patients Be Empowered

Why Should Prostate Cancer Patients Be Empowered?

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial


Transcript:

Katherine Banwell:

Yes, yes. How can patients find out about a trial that might be right for them? 

Dr. Armstrong:

There’s several sources. One is through their doctor. You know, their doctor can be their navigator. They will be connected either within a cancer center or be connected to a cancer center that’s in their region. So, getting a referral to a cancer center can be that open door to hearing what trials a big cancer center might offer. 

If patients are willing to travel longer distances, there are websites like clinicaltrials.gov where patients can search and find a trial, find a coordinator, find a principal investigator or doctor, contact them, and then either drive or fly to that site to access that trial. Not every patient has that means. 

But that’s certainly a resource that many patients and their family members can use to seek out those trials. And I certainly have patients that have found me in that way. 

But it’s probably more common for patients to come to you through a referral from their doctor because many sites in the community don’t have access to those clinical trials, but they know who does.  

Katherine Banwell:

What are some common barriers to accessing clinical trials? 

Dr. Armstrong:

The most important one is probably transportation. Some trials are close by, and some trials are very far away, and resources can be a major barrier. The cost of transportation, of having to be near a trial site, can be a major barrier. We wish we had all of the trials everywhere, but that’s not possible. Some trials are available at Duke, but are not available for example in Baltimore or Boston or California, and vice versa.  

Each academic institution may have their own trials. There are going to be some big trials that are available everywhere. These are like global Phase III studies. And really just talking to the physician, maybe getting a second opinion about which trial may be right for you in a certain circumstance is really part of the shared decision-making process. 

So, travel, socioeconomic status, cost concerns, those are barriers. But most clinical trials will pay for the experimental drugs. They will not charge you more money to participate in the study. And most insurance companies will pay for your participation in that trial, so that should not be a major barrier, but transportation can be. So, sometimes patients will find trials near a loved one or a family member so they can stay with them during the trial participation. 

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials?

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Andrew Armstrong explains how prostate cancer clinical trials work and discusses why patients should feel confident exploring this option at any stage of their cancer journey.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More From Prostate Clinical Trials 201

Related Resources

An Overview of Prostate Cancer Treatment Approaches

An Overview of Prostate Cancer Treatment Approaches

Why Should Prostate Cancer Patients Be Empowered

Why Should Prostate Cancer Patients Be Empowered?

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial


Transcript:

Katherine Banwell:

At what point should a prostate cancer patient consider participating in a clinical trial? 

Dr. Armstrong:

Sure. If you look at the National Comprehensive Cancer Network, NCCN guidelines, you’ll see that clinical trials should be discussed along all parts of the journey. 

And that’s because clinical trials often can change how we think about cancer, how we treat cancer, can improve cure rates, can improve survival. Most of our drugs and treatments that have been successful in all cancer have been the result of clinical trials. 

And it’s not always appropriate, though. We have very many treatments that can cure patients, and we don’t want to interfere with that, but sometimes a clinical trial can layer on top of that cure rate. 

But many patients, their cancer becomes resistant to proven therapies. That’s certainly an area where clinical trials can make a big difference, either to put off chemotherapy or more toxic therapies, or in patients who have exhausted proven therapies. That’s certainly appropriate. 

But sometimes clinical trials do not involve placebos. They involve combination therapies, they involve layering on top several approaches to try to improve the survival on top of standard of care.  

And so as a director of a research program, we have all sorts of trials. They come in Phase I, Phase II, Phase III. Really only the Phase IIIs involve placebo controlled or controlled trials. Phase II tend to be early studies, where everybody gets a therapy and it’s preliminary to determine efficacy. Phase I is really trying to determine the safety and dosing of an experimental drug. But patients can benefit across the spectrum. 

So, it’s important, particularly if you have advanced disease, to go to a site, like a comprehensive cancer center, for a second opinion to see if there is alternatives to what you might get in the community.  

Katherine Banwell:

Yes. What would you say to someone who might be hesitant to participate in a trial? 

Dr. Armstrong:

Participation in a trial involves shared decision-making, just like being diagnosed, embarking on initial treatment, even embarking on standard of care treatment. Everything is shared decision-making in terms of risks and benefits.  

Sometimes a trial is not in a patient’s best interest, and it’s important for a physician to be upright about that and up front about the risks of a trial. 

I think when patients have exhausted proven therapies, it’s quite appropriate to talk about therapies that might be in the research pipeline that are showing some promise, that have demonstrated at least success in the laboratory or in small numbers of patients coming before.  

For example, in 2022, a brand-new drug just got approved called Pluvicto, or PSMA lutetium. This is a new smart bomb for prostate cancer. Just last year it was a research drug, but this year it’s successful and being used in the clinic. All those hormone drugs I mentioned earlier, those were research drugs five years ago. So, we don’t make advanced, we don’t extend lives without participating in research. We’re not happy with the way things are, we want them to be better. 

And the only way to make them better is by studying them. And not all of these trials are successful, unfortunately, but many are, and that’s why we are seeing men live longer and have better survivorship nowadays. 

Why Should Prostate Cancer Patients Be Empowered?

Why Should Prostate Cancer Patients Be Empowered? from Patient Empowerment Network on Vimeo.

Prostate cancer researcher Dr. Andrew Armstrong explains how he empowers his patients and describes the positive benefits of speaking up in your own care.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More from Engage Prostate Cancer

Related Resources

Prostate Cancer Shared Decision-Making_ How Does It Work

Prostate Cancer Shared Decision-Making: How Does It Work?

An Expert’s Perspective on Emerging Prostate Cancer Research

An Expert’s Perspective on Emerging Prostate Cancer Research

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial


Transcript:

Katherine Banwell:

How do you empower patients? 

Dr. Armstrong:

Well, I empower patients by talking and listening. So, listening probably the most important part. Just getting to know somebody and their family is empowering them. You’re understanding their values, their preferences, understanding what side effects they’ve experienced in the past, what comorbidities or health conditions they’re facing, what their fears are. You know, what spiritual values they might bring, what support systems they might bring.  

Every patient is different, and part of a consultation is getting to know the person in front of you, and that empowers them to be honest. Empowers you to be transparent and get to know them so that you can help them sift through a complex decision. 

Giving information is really important, so I do a lot of talking as well as listening. 

But giving information back to the patient about risks and benefits of treatment A, B, or C or no treatment is critical. And then there is a lot of then listening to that shared decision about what might be right for that patient and navigating it. 

Katherine Banwell:

Why is it important for patients to be empowered? 

Dr. Armstrong:

It’s important for patients to be empowered, because this can often be a life-threatening decision. It’s important because this is ultimately their decision for their body, and making this decision can have major consequences that patients have to live with. Doctors empower patients to make the right decisions so they’re comfortable and don’t have regrets looking back on life and these important decisions. Whether this is picking surgery or radiation, or picking initial surveillance, or enrolling on a trial, or starting hormonal therapy. 

I think each decision sometimes is reversible, but sometimes is a big decision that can’t be taken back, and making sure that that patient feels empowered, that they don’t have regrets later, that they’ve gotten all the information to make an informed decision is really critical. 

An Expert’s Perspective on Emerging Prostate Cancer Research

An Expert’s Perspective on Emerging Prostate Cancer Research from Patient Empowerment Network on Vimeo.

What do prostate cancer patients need to know about emerging research? Dr. Andrew Armstrong discusses developing treatments and their potential impact on prostate cancer care.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More from Engage Prostate Cancer

Related Resources

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials?

How Can Prostate Cancer Patients Access Clinical Trials

How Can Prostate Cancer Patients Access Clinical Trials?


Transcript:

Katherine:

Are there any recent developments in treatment and research that patients should know about? 

Dr. Armstrong:

Absolutely. I would say the number one research advance has been the use of these really strong hormonal therapies in earlier and earlier disease setting. So, you may have heard of drugs like Zytiga or abiraterone, or Xtandi or enzalutamide, apalutamide or Errleada, or derolutamide or Nubeqa. Those are mouthfuls. Those are very potent hormonal pills that when used in men with advanced disease improves survival. 

And the data has supported the fact that the early use of those agents extends life even more than waiting until hormone resistance develops.  

So, if you are unlucky enough to have metastatic disease and you’re in need of hormonal therapy, giving injections that lower testosterone, which is the fuel for most prostate cancers, and then blocking testosterone with some of these newer pills extends life by years, not months. And it does so with pretty good quality of life over time.  

Of course, there are negative consequences of having no testosterone, and it’s important as part of shared decision-making to review those side effects and how that can impact quality of life negatively while extending survival.  

So, that’s a major advance. Another major advance is genetic testing and personalized medicine. In men with advanced prostate cancer, it’s now uniformly recommended that all men get hereditary testing to figure out if they inherited prostate cancer risk genes.  

These are genes such as the BRCA I and II genes, BRCA II being the most common. And these are not just breast or ovarian cancer genes. It’s important for men to realize that you can inherit these from a mother or a father, that they can create risks for multiple cancers, not just female cancers, but prostate cancer in particular. 

And now we have guided therapies, targeted therapies that can improve survival in men with these certain mutations, and if you are found to have those mutations, your family members could be tested so that they could be screened, and cancer can be picked up earlier, and perhaps they could be cured rather than suffering the fate of a more advanced diagnosis. So, really important both for yourself and for family members. 

So, those are two major advances. A third one is imaging.  

Imaging keeps getting better and better. We used to just do CAT scans, bone scans, very insensitive tests that in men with advanced disease have a hard time seeing prostate cancer, even when it’s spread. But with the advent of new technologies, like PSMA PET scan, that got approved last year. So, very new technologies. That’s transforming the way we visualize where cancer may be hiding, and for men particularly that have high-risk disease or recurrent disease or even resistant disease, we’re using those scans to guide therapy. 

An Overview of Prostate Cancer Treatment Approaches

An Overview of Prostate Cancer Treatment Approaches from Patient Empowerment Network on Vimeo.

How is prostate cancer currently treated? Dr. Andrew Armstrong provides an overview of treatment options for prostate cancer patients across various stages of the disease.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More from Engage Prostate Cancer

Related Resources

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials

Should Prostate Cancer Patients Consider a Treatment in Clinical Trials?

An Expert’s Perspective on Emerging Prostate Cancer Research

An Expert’s Perspective on Emerging Prostate Cancer Research


Transcript:

Katherine:

What are the treatment options that are currently available for prostate cancer patients? 

Dr. Armstrong:

It’s a really important question, and I would say it depends. In early disease, when cancer is picked up early, many patients are cured. Prostate cancer is the number one survived cancer in the United States. It’s important to realize that and kind of take a deep breath and realize that most patients beat prostate cancer. Only about one out of six men will suffer a relapse or develop metastatic disease or Stage IV disease that requires more of a lifelong journey of therapy. 

So, most men come into this because they’ve been screened by their primary care doctor. They had a high PSA, they underwent a biopsy, they were found to have cancer.  

And the first decision, particularly for example at our Duke multidisciplinary clinic, the first decision that we always share with the patient, and as part of shared decision-making, is we give information about prognosis and risk using the PSA level, the biopsy information, staging information if imaging is done.  

And then giving a category or a risk group to that patient can help them decide what are the options that are nationally recommended, internationally recommended by evidence-based guidelines. The most important decision is whether that prostate cancer needs treatment right now at all, and the initial observation or active surveillance is a very valuable “first do no harm” approach for men with very low risk or low risk types of prostate cancer. With a low-grade cancer, low PSA, low stage, and that’s about a third of all patients.  

That’s a huge number of men are told they have cancer, but they actually don’t need initial treatment. 

And they need to be explained to, why we’re not going to treat that cancer, why it’s so safe, and why mortality is not high in that patient population when we don’t treat it, and how we do active surveillance. For example, imaging with MRI, repeat biopsies. And a lot of patients do appreciate that because they’re not undergoing surgery or radiation and they’re not being harmed by those treatments. That would be called overtreatment. That’s not for everybody, though. 

So, just like prostate cancer comes in different flavors, treatments come in different flavors. So, there’s things where the Gleason score is higher, the stage may be higher, the PSA is higher, and the risk to the patient is higher. And when we get into that more intermediate- and high-risk situation, treatment is going to be necessary. But then we’ll have a menu of treatment options that is important to talk through. Typically surgery, radiation, sometimes alternatives to that. 

Sometimes combinations with hormonal therapy, which we call systemic therapy. The drugs that work throughout the body. 

Katherine Banwell:

What about for patients who have advanced disease? 

Dr. Armstrong:

The word “advanced” can mean different things to different people. Advanced can mean metastatic disease. It can mean disease that’s not curable. But advanced can also mean that it’s high risk. That the disease is still confined to the prostate, but it’s aggressive, and that if it’s not handled quickly with a multidisciplinary approach, for example, it has a high risk of occurrence.  

So, advanced disease can mean aggressive, in need of treatment. Sometimes it can be cured if it’s confined to the prostate. Sometimes it requires more than just one treatment modality, such as surgery followed by radiation, or radiation plus some of the newer hormonal therapies.  

For men with stage IV disease, that means disease that has left the prostate and gone to distant sites, we have very effective therapies that can still control this type of advanced disease for many, many years, so it is important to realize how far we’ve come with all of our therapies and to reassure the patient and their family about the good prognosis, even in the worst-case scenario, for many patients. 

Prostate Cancer Shared Decision-Making: How Does It Work?

Prostate Cancer Shared Decision-Making: How Does It Work? from Patient Empowerment Network on Vimeo.

Prostate cancer researcher Dr. Andrew Armstrong describes the benefits of the shared decision-making process and encourages patients to take an active role in their care.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More from Engage Prostate Cancer

Related Resources

Why Should Prostate Cancer Patients Be Empowered

Why Should Prostate Cancer Patients Be Empowered?

An Overview of Prostate Cancer Treatment Approaches

An Overview of Prostate Cancer Treatment Approaches

An Expert’s Perspective on Emerging Prostate Cancer Research

An Expert’s Perspective on Emerging Prostate Cancer Research


Transcript:

Katherine:

Patients may have heard the term “shared decision-making” Let’s go into – let’s define it, though. What is it, and how does it work? 

Dr. Armstrong:

Sure. So, if you imagine you’re a patient faced with the daunting task of a new cancer diagnosis and trying to navigate decision-making around treatment, or whether you need a certain test, and those tests or treatments have harms and they have benefits, shared decision-making is really the process of communication. You know, open, transparent communication between the doctor or provider and that patient and their family and supportive spouse and others, significant others, so that everybody has complete information around the risks and benefits of a certain treatment course or management course.  

In prostate cancer, this would mean for a newly diagnosed patient, commonly first giving information about what the risks of their cancer might be, but then what the risks and benefits of various treatment algorithms might be, and explaining in ways that a patient can understand those different journeys.  

Dr. Armstrong:

And ultimately the patient makes a shared decision-making with the doctor that’s in their best interest. 

Katherine Banwell:

In your view, what role do patients have in care decisions and why should they feel empowered to speak up and be a partner in their care? 

Dr. Armstrong:

Sure. Just like there’s many different types of doctors, there’s many different types of patients, and you have some patients that have PhDs, you have some patients that are not even sure what cancer is, and it’s really important to empower every patient to understand at a level that will help them make a decision. And some patients wish to have those decisions made for them. I hear that a lot. Some patients really just want to ingest the information, not make a rash decision 

Maybe get three or four second opinions, travel around to really get the right decision. And sometimes it can take a very long time. But every patient has a different journey, and it’s important for the provider, the doctor or the nurse practitioner or the surgeon, to really understand that patient and their values to help them arrive at the decision for themselves. Because sometimes treatment decisions may have equal efficacy but different side effects.  

For example, in prostate cancer, the most common decision is between active surveillance or a radical prostatectomy or radiation of different forms, or the robot versus the open procedure, or intensity modulated radiation or brachytherapy. And these are complex decisions, and I’ve had patients go for months without making decisions. And the shared decision-making approach really can help patients make a decision as quickly as possible. 

So that they can move on and either be cured from their cancer or make the best treatment decision. 

Katherine Banwell:

Dr. Armstrong, why is it so important that patients tell their doctor about any symptoms they’re experiencing? 

Dr. Armstrong:

Certainly symptoms may or may not be related to the prostate cancer, and doctors are well-trained to sift through all of that. You know, back pain could be from a herniated disc or arthritis, but it could be a sign of metastatic disease. Weight loss could be a sign of other metabolic problems, but it can also be a sign of really advanced prostate cancer. Urinary symptoms could just be a sign of a big prostate, may have nothing to do with the cancer, or it could be a big tumor that’s blocking off your bladder.  

So, being transparent and open and just describing what symptoms and letting that physician sort through that with you to help understand what symptoms may or may not be related to the cancer, that’s really important.  

Prostate Cancer Research Highlights From ASCO 2022

Prostate Cancer Research Highlights From ASCO 2022 from Patient Empowerment Network on Vimeo.

What should prostate cancer patients know about developing research? Dr. Rana McKay reviews news from the 2022 American Society of Clinical Oncology (ASCO) meeting.

Dr. Rana McKay is a medical oncologist at UC San Diego Health and an associate professor in the Department of Medicine at the UC San Diego School of Medicine. Learn more about Dr. McKay, here.
 
 

Katherine Banwell:

ASCO was held in June. Is there news from the conference that patients should know about?  

Dr. Rana McKay:

Yeah. So, I think some of the biggest therapies in prostate cancer that was one of the newest therapies that was just FDA-approved is Lutetium PSMA. It’s a radioligand therapy that targets specifically PSMA-expressing cells. It delivers a little bit of beta radiation to those cells. That therapy was approved this past spring, and there highlights at ASCO about the utility of this therapy. And again, there’s a series of novel compounds that are being tested in prostate cancer not yet ready for prime time but a lot of exciting work that’s being done to try to get new drugs that work better for our patients.  

Katherine Banwell:

Mm-hmm. Going back to ASCO and new developments, how can patients stay informed about research developments like – like these that happen at ASCO. 

Dr. Rana McKay:

So, very – very good. I think there’s a lot of networks for people with prostate cancer. I think one like I mentioned, the prostate cancer foundation it’s a wonderful community. That really focuses on making sure that up to date, you know, evidence-based data is distributed to patients in a manner that is – that makes sense. That’s there’s not a lot of medical jargon and so I think that the PCF is really a wonderful resource. ASCO itself also has, you know, patient interfacing, you know, materials through their website.  

American Cancer Society does as well. The American Cancer Society can also be a wonderful resource for patients that are newly diagnosed or going through treatment.  

Katherine Banwell:

It seems like there’s a lot of progress and hope in the field which is good. Dr. McKay, thank you so much for taking the time to join us today.  

Dr. Rana McKay:

Of course. My pleasure.  

What Is Personalized Prostate Cancer Medicine?

What Is Personalized Prostate Cancer Medicine? from Patient Empowerment Network on Vimeo.

What do patients need to know about personalized medicine? Dr. Rana McKay defines personalized treatment and discusses options available for advanced prostate cancer patients.

Dr. Rana McKay is a medical oncologist at UC San Diego Health and an associate professor in the Department of Medicine at the UC San Diego School of Medicine. Learn more about Dr. McKay, here.
 
 

Katherine Banwell:

Dr. McKay, how would you define precision or personalized medicine, and how close are we getting to personalized medicine for advanced prostate cancer? 

Dr. Rana McKay:

Yeah. So, what I – how I define it is the right treatment for the right patient at the right time. It’s basically, you know, based off of somebody’s genomic profile of their tumor and ideally that genomic profiling is done close to the time that that treatment is being initiated.  

So, within six months or 12 months of somebody starting a given therapy, we understand the genetic make-up of the tumor. The tumor has, you know, for example, a BRCA1 alteration, and we know that olaparib is a drug that can be utilized and has demonstrated efficacy for people that have that mutation and then we would use that agent. So, it’s basically trying to personalize therapy based on the genomic information of that tumor.  

And, I think we are getting there. There are actually trials now that are being launched that are biomarker driven trials with bio-marker selected therapies for patients based on – off of not just DNA but also RNA to help with allocating a given therapy.