Tag Archive for: medical oncologists

HCP Roundtable: Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care

HCP Roundtable: Breaking Barriers and Cultivating Clinical Excellence in Endometrial Cancer Care from Patient Empowerment Network on Vimeo.

What are obstacles faced by healthcare providers (HCPs) treating endometrial cancer patients and families? How can HCPs foster a culture of innovation and continuous improvement in clinical practice? Dr. Radhika Gogoi of Karmanos Cancer Institute and Dr. Charlotte Gamble of MedStar Health unravel the complexities of endometrial cancer care, providing HCPs with the insights and tools needed to navigate challenges effectively and to deliver optimal care to their patients and families.

See More from EPEP Endometrial Cancer

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Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients

Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients?

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Addressing Disparities in Gynecologic Oncology | Key Challenges and Solutions

Overcoming Barriers: Empowering Underrepresented Groups With Endometrial Cancer

Overcoming Barriers: Empowering Underrepresented Groups With Endometrial Cancer

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients or EPEP Program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician patient communication and to overcome practice barriers. In this endometrial cancer healthcare provider roundtable, we are discussing breaking barriers and cultivating clinical excellence in endometrial cancer care. 

This program aims to improve healthcare provider awareness of screening and access disparities to specialized care in endometrial cancer, while also addressing solutions to overcome practice barriers such as lack of awareness, outdated practices, and inertia. Today, we’ll talk about some of the complexities of endometrial cancer care and we’ll provide healthcare providers with the insights and tools needed to navigate challenges effectively.

Our discussion will cover enhancing healthcare provider awareness of diagnostic and access disparities to specialized care in endometrial cancer, actionable strategies to overcome practice barriers in endometrial cancer care and empowering providers through fostering a culture of innovation and continuous improvement in clinical practice. 

It is my privilege to be joined by Dr. Radhika Gogoi from Karmanos Cancer Institute. Dr. Gogoi is a dedicated clinician and cancer researcher focused on exploring the Hippo pathway in gynecologic cancers, aiming to uncover novel therapeutic approaches. Thank you so much for joining us today, Dr. Gogoi.

Dr. Radhika Gogoi:

Thank you, Dr. Rochester, and thank you for having me. It’s great to be here.

Dr. Nicole Rochester:

It’s also my honor to be joined by Dr. Charlotte Gamble, gynecologic oncologist at MedStar Washington Hospital Center and MedStar Southern Maryland Hospital. Dr. Gamble is dedicated to taking care of patients who have historically been marginalized and are vulnerable to poor health outcomes. Her research examines the role of safety net hospital systems in gynecologic cancer care. Thank you so much for joining us today, Dr. Gamble.

Dr. Charlotte Gamble:

Thank you so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

So we’re going to start today’s discussion by diving into enhancing healthcare provider awareness of diagnostic and access disparities in endometrial cancer care. And I want to start by just framing the current situation. Black women are twice as likely to die from endometrial cancer when compared to their white women counterparts.

There is no current screening test for endometrial cancer, and diagnosis is usually made after patients present with symptoms. Sadly, the list doesn’t end there. So I’m going to start with you, Dr. Gogoi. What are the primary barriers to accessing specialized care for endometrial cancer that you’ve observed in your practice and perhaps in others?

Dr. Radhika Gogoi:

So thank you for that question. I guess I just want to start by just level setting a little bit and talking about specifically endometrial cancer disparities. So unlike other gynecologic cancers, which actually have been shown to be decreasing in incidence, endometrial cancer is actually one of the cancers that is increasing. We know that low grade endometrial cancers really have an excellent prognosis, but higher grade endometrial cancers really have a much poorer prognosis.

And that’s the specific subgroup that seems to be increasing in all women. Black women, again, as you mentioned, have the lowest survival rate, and that is even when corrected for the specific type of endometrial cancer and the stage of endometrial cancer. So with that sort of background and problem, the question really becomes how do we allow and educate our patients about the barriers that they face when accessing specialized care?

And so some of the barriers, at least that I’ve noticed, and certainly in the hospital that I practice in is really as you pointed out, that there is no good current screening test. Black women tend to have a delayed onset from the time of their symptoms, which in this case is really postmenopausal bleeding to actually obtaining a diagnosis.

And there are studies that have shown that some of that is education or there is an understanding that perhaps postmenopausal bleeding is not as significant an issue, doesn’t lead necessarily, to obtaining healthcare which as you can appreciate then delays the onset of the diagnosis. There is also that Black women present with more advanced disease. This is, again, likely due to the delay in diagnosis and the delay from diagnosis to getting treated.

Dr. Nicole Rochester:

Thank you. Thank you, Dr. Gogoi for level setting and for getting us started with a better understanding of those disparities. And I’d love to go to you, Dr. Gamble. In your experience, what are the primary barriers to addressing specialized care for endometrial cancer?

Dr. Charlotte Gamble:

Yeah, thank you so much.  I’ll just add some additional context. I think there are so many places in which these barriers can happen. So as Dr. Gogoi alluded to, sometimes that can happen at the patient level due to just not recognizing that having irregular, unpredictable bleeding, bleeding after menopause, bleeding even before menopause has happened, but really heavy bleeding or heavy periods that any sort of abnormal, heavy irregular bleeding is not normal and has to be evaluated in a timely fashion. But that’s at the patient level.

And sometimes, people have competing priorities where they might recognize that it’s a problem but not be able to make it to their doctor’s office. Have other kinds of things that are happening in their day-to-day lives where they just are not able to prioritize their own health. We also see then how the system can affect that.

If someone hasn’t had a gynecologist in years, or their gynecologist said, bye, you don’t need to see me anymore because you’re over the age of 65, you no longer need pap smears and they’ve fallen out of care, or patients who don’t have health insurance or patients who live really far away from their doctors. Accessing the healthcare system in the year of our Lord 2024 is actually really, really hard. If you lack the resources or lack the wherewithal to navigate that.

Additionally, what we see on the healthcare standpoint is that maybe patients do actually access the healthcare system. They call the gynecologist’s office. They call their primary care doctor, and they’re told by an admin staff or someone else that hears them, but that says, okay, fine, we’ll get you in, but it’s going to be in about three-and-a-half months.

And so sometimes those barriers and those delays come from the health system in general, which is also a challenge. And then even after they present to their doctor, sometimes they’re told, “Okay, let’s go ahead and let’s get an ultrasound first, and based on what your ultrasound looks like, then we’ll decide if we need to do a uterine biopsy to diagnose you.” But we also know that for certain types of these uterine cancers, specifically the really aggressive ones, that sometimes their ultrasound might look totally fine, but there still can be cancer underlying there.

And so I think that there are multiple barriers to getting even. That’s before the diagnosis even happens much less what comes after the diagnosis is had, how one gets from their gynecologist to a surgical subspecialist called the gynecological oncologist that Dr. Gogoi and I, this is our field. And there are multiple barriers and referral pathways there. But that’s to give a little bit more context that these things might start at the patient level, but the healthcare system, unfortunately, can contribute in rarely challenging ways to the barriers that patients face.

Dr. Nicole Rochester:

Thank you both for that. I think we have a really good idea of the breadth of this issue, and I appreciate both of you pointing out that there are patient level factors, but there are also system level factors that come into play. And, Dr. Gamble, you just kind of ended by talking about referrals.

So I’m going to pick up there. And let’s talk about referral patterns. And I’ll start with you for this question. How do those referral patterns impact access to specialized care gynecologic oncologists like yourself and Dr. Gogoi for women who are diagnosed with endometrial cancer and specifically for those underserved populations?

Dr. Charlotte Gamble:

Yeah, this is a complicated question and multi-layered. Again, I think big picture referral patterns. We know that there are barriers for patients who live rurally. We know there are barriers for patients who don’t have insurance or their insurance might be, they might be underinsured. And so there’s kind of system level barriers that we see on the macro level in some of our referral pathways.

And occasionally, sometimes patients with gynecologic cancers will actually be referred to not gynecologic oncologists, which are surgical subspecialists that work specifically with gynecologic malignancies, but might be referred to a general surgeon first, or a general gynecologist who may or may not know kind of what they’re getting into in terms of the care. I think what I’ve noticed in real life is that when I’m getting referrals, sometimes I’m getting a text message, sometimes I’m getting an email, sometimes getting a message in the medical record system, and the referrals are coming in many different ways.

Occasionally, patients are calling themselves. And so the ways that referrals actually then happen in real life and how those spread to kind of the macro levels is really interesting to me. It can be very complicated, very complex, and I think this is where the role of having healthcare navigators comes into play where folks can really assist patients in getting to the right surgical subspecialists.

Dr. Nicole Rochester:

Absolutely. And we know there’s a lot of evidence for the role of healthcare navigators in other disease spaces and specifically in cancer. So I appreciate you mentioning that. We’ve talked a little bit about patient level factors, and we’ve talked about system level factors. We haven’t talked a lot about maybe some provider level factors.

And I want to talk about cultural competency and the role that that plays in addressing disparities in endometrial cancer, specifically with regard to diagnosis. And I’m going to start with you, Dr. Gogoi on this one. And if you can share the role that you believe cultural competency plays in addressing some of these disparities that we’ve been talking about.

Dr. Radhika Gogoi:

Yeah, so I think you heard from us a little bit that oftentimes some of the symptoms that our patients have had are either ignored, or patients haven’t had a chance to fully address them, or the providers haven’t fully evaluated kind of the importance of their symptoms. And I think, so again, I think nurse navigators community educators are essential in sort of educating our communities about the importance of seeking care when you have sort of the symptoms that Dr. Gamble talked about and in a really timely fashion. I think that that’s really important as well.

So I think it obviously, cultural competency is important in sort of all facets of a patient’s journey as they kind of have the diagnosis through their treatment. But I think that the other place is really once they enter the healthcare system being aware and mindful of sort of healthcare mistrust both from the provider, from the institution, from a much larger governmental level and being aware of that distrust and really trying to take time to address their concerns.

That specifically at least comes up a lot in terms of clinical trials where we know that minority populations, Black patients are met vastly underrepresented. And so I think specifically in that area, there is really the opportunity to do a much better job in providing transparency about the trial design, about recruiting specifically minority patients. Interestingly, a lot of these landmark trials actually didn’t include race as a measure. And so we know that they’re underrepresented, but we actually don’t know how much minority populations are underrepresented. So important to really understand where patients are coming from when they enter a healthcare institution.

Dr. Nicole Rochester: 

Absolutely. Thank you. Thank you so much for that. Dr. Gamble, can you speak to awareness? You spoke about the fact that sometimes patients are referred to perhaps the wrong provider. You know, there was that sent, you mentioned to a general surgeon instead of to a gynecologic oncologist. And so we can imagine that there may be some challenges both in the primary care setting and perhaps even among general obstetrician gynecologists. So can you speak to how we can elevate the level of awareness to enhance healthcare provider awareness of diagnosis and access disparities and really appropriate referral patterns?

Dr. Charlotte Gamble:

Yeah, absolutely. I think it’s a tough question. I think it’s, again, like all things, it’s a little bit nuanced. Sometimes, again different levels of providers, different parts of the country, everybody practices a little bit differently. So everyone knows once you get a cancer diagnosis, you should probably go to a cancer specialist. And so generally, that’s coming to a gynecologic oncologist generally, or that’s sometimes that’s going to a medical oncologist. But occasionally, sometimes patients will have symptoms where it’s just abnormal bleeding, and they’re seeing a general gynecologist who then does a hysterectomy, and there’s a surprise diagnosis of an endometrial cancer.

Usually they’re, hopefully, they’re not making it too much to kind of the general surgery pathway our general surgery colleagues are awesome, but it’s kind of a different kettle of fish and the type of hysterectomy that’s needed and the type of specific surgery that’s needed to include lymph node assessment is different for somebody who’s getting a cancer surgery for uterine cancer compared to, let’s say, for fibroids or for adenomyosis or a non-gynecologic cancer situation.

I think, again, I’m on the receiving end of all of this, so I see patients who have made it to my doorstep and gotten kind of through the hoops and the barriers, but there’s definitely those out there that we know from the data somehow ended up with their surgery, not exactly in the appropriate hands.

And it’s hard to say, I don’t know if I actually even have advice for like how this is supposed to happen. I think we need to understand kind of the as Dr. Gogoi alluded to earlier, just kind of how prevalent endometrial cancer is right now and how the rates are rising and that abnormal bleeding has to be taken very seriously. And the thing that I harp on the most is a normal ultrasound does not mean there’s nothing else to explore there. There has to be a tissue biopsy.

And really impressing that on both patients as well as the first kind of people that they see, either their primary care doctor or even a nurse practitioner, a physician assistant. Just because there’s a normal ultrasound does not mean that your work is done. And we have studies to really demonstrate how that can delay patient’s care and missed diagnoses can happen. So it’s hard to answer your question, to like, how do we fix the referral pathway system? I don’t know the answer to that, and maybe Dr. Gogoi can speak to that, but I will say from like a screening standpoint, since there’s no great screening test, an ultrasound is not, might be the first step, but it’s definitely not the only step and it cannot be the last.

Dr. Nicole Rochester:

I appreciate that. As you were talking, I was thinking like this needs to be a major awareness campaign, not just for healthcare providers, but for patients as well. You know, this idea that abnormal or or postmenopausal bleeding is never normal and make sure your doctor gets a tissue biopsy and not just an ultrasound. Dr. Gogoi, we’ve talked already about some of the obstacles and barriers faced by patients. Can you talk about some of the obstacles or barriers that are faced by healthcare providers when treating endometrial cancer?

Dr. Radhika Gogoi:

Yeah, I think that the one other barrier that sort of comes up a lot specifically in terms of maybe even in terms of getting a patient to their referring providers or a G1 oncologist is transportation. I find that transportation is a huge issue for our patients. And it’s mostly associated with cost. So I think that one of the things that really, that we can do as a community is to somehow provide means or ways for our patients to get to us once they’re diagnosed. It’s hard enough to get them to us but when they’re facing challenges of cost and transportation, that becomes even more challenging.

So I think that that’s from a patient standpoint. And then, and then I think what Dr. Gamble mentioned about really the barriers for providers is really education around ultrasound and how those how specifically perhaps even in Black women, that it’s not as predictive of endometrial cancer risk and that an ultrasound alone is not enough of a workup for a number of these patients to rule out some underlying pathology. So that’s huge, and again mistrust of the medical profession is something that all healthcare providers deal with. And allowing time for patients to ask their questions, to be transparent about what it is that you’re doing and why I think goes a long way towards overcoming those challenges.

Dr. Nicole Rochester:

Thank you both for that. I think we’ve gotten a lot of information around the causes of the disparities and some actions that we can begin taking. Are there any unforeseen or outdated practice-related barriers that may hinder your work and that of your colleagues? And on that same note, are there any solutions or actions related to those? And I’ll start with you on this one, Dr. Gamble.

Dr. Charlotte Gamble:

Well, starting all the way back, I think an outdated practice is not listening to patients, and not recognizing your own privilege as a provider. I think that to Dr. Gogoi’s point that she’s mentioned a couple of times now, I have innumerable patients that just felt that they were not listened to felt that they couldn’t…that their stories were not being heard, that they faced no’s, no’s, no’s at multiple levels in trying to seek care for abnormal bleeding, and come to me very frustrated and kind of weary. And I think just really understanding how vulnerable patients are when they’re seeking care, and being cognizant of the privilege that we have as healthcare providers is something that is more contemporary compared to an outdated practice of being very paternalistic.

I guess sometimes I have had patients who are like, yeah, I was told that I needed a biopsy and I just…the way that they told me and the way that they said that it had to be done tomorrow, it freaked me out, and I couldn’t do it. And it’s just kind of unfortunate when the recommendations might be correct, but the way in which it’s being delivered is not being received by the patients in a way that they’re able to be receptive to.

I think another outdated practice again that I harp on that I’m such a strong believer in is like just the role of the ultrasound. I really, I don’t like it. I hate it. I think it’s useful for knowing uterine size and maybe if there’s some kind of stuff inside the uterus, but abnormal bleeding either before menopause or after menopause has to have a tissued biopsy. So I think that’s outdated to just get an ultrasound and have the patient come back, because it continues to perpetuate delays in care, and I think disparities to an extent. Another outdated…no, I don’t know. Is there anything else, Dr. Gogoi, that you’d add to this?

Dr. Radhika Gogoi:

I feel like this is a lot lot older now. It used to be at one point that we used to do all our endometrial cancer patients with open surgery. I think that now, I guess it’s even more outdated than outdated. Most of the surgeries are now pretty much done either minimally, invasively laparoscopically or robotically. There are obviously extenuating circumstances to both of those things, but I think approach to surgery is also sort of evolved.

The treatment paradigm for patients with advanced endometrial cancers has evolved even more so in the last maybe two years or so with the role of immunotherapy. So encouraging our patients to be educated about their options, both for route of surgery, for treatment and to make sure to ask those questions at the time of their office visit I think is something that we should all encourage.

Dr. Charlotte Gamble:

I would dovetail from that and also say, to kind of harken back to some of the other things we discussed in terms of referral pathways and things like that, and just how gynecologic oncology care is delivered in different parts of the country, there are various models for this, and so classically, patients who have gynecologic cancers, including endometrial cancer are managed solely by the gynecologic oncologist, meaning a surgical subspecialist like myself or Dr. Gogoi, who not only do the surgery, but also deliver if patients need it chemotherapy or specialized systemic therapies afterwards, sometimes with a component in partnership with a radiation oncologist.

But there are parts of the country by institution or by geography where the care that comes after the initial surgery done by the gynecologic oncologist might be shared with a medical oncologist who may or may not actually have super sub-specialized training when it comes to gynecologic cancers, because again, historically, this has been an area that’s been managed really by our subspecialty.

And so I encourage patients as well as referring doctors, et cetera, et cetera, to make sure that whoever, if there’s additional therapies that are needed after the hysterectomy is done, such as chemotherapy or immunotherapy, as Dr. Gogoi alluded to, that that is done in partnership with a gynecologic oncologist, because our field is kind of driving where so much of the contemporary understanding of how to manage these conditions long-term is coming from. And to make sure that if a medical oncologist is doing this, they feel very competent. They do this all the time, and they’re working in close partnership with their gynecologic oncology colleagues.

Dr. Nicole Rochester:

Wonderful. Thank you for that. So as we talk about outdated practices, I guess the other side of the coin is innovation and continuous improvement. And so I’ll turn this question to you, Dr. Gogoi. How can healthcare providers and hospital leaders foster a culture of innovation and continuous improvement? So that’s some of these outdated practices that you all, that you and Dr. Gamble, discussed are really no longer a thing?

Dr. Radhika Gogoi:

Yeah. So I couldn’t agree more.I think that some of those innovative approaches really come from enrolling in clinical trials. And so I think that the importance of having minority populations, equally represented in clinical trials is essential. Otherwise we’re not going to make the progress that we need to make to really equal the playing field here, so to speak. So I think that that really is a huge player trying to educate patients about clinical trial options, being transparent about what those look like, who benefits, what the data suggests, why it’s important to me is again, really key.

Dr. Nicole Rochester:

Wonderful. And Dr. Gamble, if we were to be specific, are there any healthcare provider to healthcare provider strategies, anything that you’ve seen work, maybe things that you’ve done yourself, innovative approaches or protocols with regard to this idea of innovation and continuous improvement?

Dr. Charlotte Gamble:

Yeah, I think different institutions have different cultures, and I think having institutional culture that embraces change that is, desires to be on the vanguard of advancing science, and the science could be in terms of bench research. It could be in terms of clinical trials, it could be in terms of healthcare delivery, really trying to advance and push forward. The science and how we get the best care to our patients in the most timely fashion I think is really important. Culture is hard to change, and we all work in institutions that have various different cultures. I think that healthcare provider to healthcare provider, I think open lines of communication are great. I tell folks, text, call, email, whatever you need to do to get patients in a timely fashion is necessary.

I think the understanding of we are one person working within a team is really necessary. So patients might say, oh, Dr. Gamble this, Dr. Gamble that, but I always, always, always tell them that I cannot do this work without my nurse navigator, without my fellow, without my residents, without my inpatient floor nurses, the oncology nurses, and really understanding that oncology care specifically is a really big team sport.

And healthcare leaders, when we’re thinking about things from a system level, I think sometimes have different like just help making sure that everybody understands how much of a team sport that this is. How much the radiation oncologists, the medical oncologists interface with us on a regular basis, I think is really important. And to understand that we’re all in this together to deliver the best care to our patients. I really think the role of health, like nurse navigators and lay navigators needs to be further pushed forward within our field, including not only gynecologic oncology, but just gynecology in general, and that’s some of the work that I’m doing from a research standpoint now. And so I’d love to see the role of navigators be fully embraced and somehow reimbursed by healthcare systems in general.

Dr. Nicole Rochester:

Absolutely. Well, it is time to wrap up this roundtable. I have really enjoyed talking with both of you as always. I have learned a lot. I’m sure that our audience will learn a lot from this conversation. And before we go, I’d love to get closing thoughts. So I’m going to start with you, Dr. Gogoi. What is one takeaway message that you would like to leave with the healthcare professionals who will watch this program?

Dr. Radhika Gogoi:

So I guess the one takeaway would be that, as I think about my role in sort of disparities prevention, if you say it is really as an educator, and so the importance of community education on symptoms, on diagnosis, on treatment approaches, I think it’s essential that we don’t think of ourselves as a silo. I’m not just, but I’m part of the larger community as Dr. Gamble spoke about. And to be part of that larger community means that I need to be within that community and function within the community. So whether it’s me, community navigators, health educators to really play a role in educating our patients about how to approach their symptoms.

Dr. Nicole Rochester: 

Wonderful. Thank you, Dr. Gogoi. And what about you, Dr. Gamble, what’s your closing thought that you would like to leave with the audience?

Dr. Charlotte Gamble: 

Yeah, I think for healthcare providers in general, I think the thing that I think is most important is, again, being able to listen to patients, working and encouraging the systems that we are housed into, be able to be responsive to them, so that if patients are educated, do know that there’s something wrong. They’re able to not only get a hold of someone, but also be listened to and heard and taken seriously. And we have a lot to do in that regard. So I think just understanding again, our role and how privileged we are to be in our jobs, in this line of work, and being able to leverage that to listen to patients and get them the timely care that they need.

Dr. Nicole Rochester:

Wonderful. Well, thank you both again, Dr. Gogoi, Dr. Gamble, thank you for this enlightening conversation. We’ve learned so much about endometrial cancer. I think for me, the main takeaway is postmenopausal bleeding, abnormal irregular bleeding is never normal. It needs to be evaluated. You both spoke about the importance of biopsy and not just an ultrasound, and in fact that ultrasound can be normal.

And with regard to disparities, I really appreciate both of your thoughts around community education, and this being a team sport and listening to our patients. So again, thank you so much for being here today, and thank you all for watching the program and tuning into this Empowering Providers to Empower Patients, Patient Empowerment Network program. I’m Dr. Nicole Rochester. Thanks again for watching.


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

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

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

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Transcript:

Lisa Hatfield:

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

Rafael Santana-Davila: 

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

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

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


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Clinical Trials As a Prostate Cancer Treatment Option | What You Should Know

Clinical Trials as a Prostate Cancer Treatment Option | What You Should Know from Patient Empowerment Network on Vimeo.

Should you consider participating in a prostate cancer clinical trial? Dr. Sumit Subudhi explains the clinical trial process, addresses common trial patient concerns, and provides key advice for trial participation. Dr. Subudhi also shares an update on promising prostate cancer research.

Dr. Sumit Subudhi is an Associate Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

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Transcript:

Katherine Banwell:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to discuss prostate cancer research advances and the role of clinical trials and moving treatment developments forward. Before we meet our guest, let’s review a few important details.   

The reminder email you 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 will receive a link to a program survey. This will allow you to provide feedback about your experience today, and it will help us plan future webinars. 

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

Well, let’s meet our guest today. Joining me is Dr. Sumit Subudhi. Dr. Subudhi, thanks for being with us. Would you introduce yourself? 

Dr. Subudhi:

Hi. I’m Sumit Subudhi. I’m an associate professor in the GU Medical Oncology department at MD Anderson Cancer Center. And I exclusively treat patients with advanced prostate cancer. And I’ve been doing it for about a decade. 

Katherine:

Thank you. I’d like to begin with an update on prostate cancer research. Would you walk us through the newer classes of treatments that are showing promise? 

Dr. Subudhi:

Yeah, in clinical trials, there are classes of drugs known as androgen receptor degraders. And so, the androgen receptor is a protein that basically is the mouth of the prostate cancer. That’s how I like to describe it. And it actually allows testosterone, which is the food, to be eaten by the mouth, and it actually helps the cancer grow. 

And what these drugs do is they actually degrade or break down the mouth of the cancer. And, therefore, it starves the cancer to death, and that’s actually the concept. And they seem to be showing some exciting activity in clinical trials, especially in those patients who are resistant to the second-generation hormonal drug that you may have heard of already, such as enzalutamide (Xtandi), apalutamide (Erleada), and darolutamide (Nubeqa). So, I think is something that we’re looking forward to seeing more data on. 

Another class of drugs are antibody drug conjugates or ADCs.  

And these are what I think of as heat-seeking missiles. So, one part of the drug actually recognizes the cancer, and the other part of the drug actually has a payload that sort of releases a bomb or sort of like chemotherapy-type agent right where the cancer’s located and kills the cancer in that way. And we’re seeing some great clinical activity in prostate cancer with this class of drugs. 

And then the final one is bispecifics, and in particular T-cell bispecifics. So, T cells are part of the immune system that actually help kill the cancer.  

And, unfortunately, prostate cancer, like some other cancers like pancreatic and glioblastoma, have few T cells inside it. And, therefore, a lot of the immunotherapies that many people have heard about, such as ipilimumab (Yervoy) and pembrolizumab (Keytruda), they’re not very responsive in patients with prostate cancer. And it’s because there’s few T cells in prostate cancer.  

What the T-cell bispecifics do is they actually have one part of the drug that actually recognizes the cancer and the other part that recognizes T cells. So, like a bulldozer, it brings T cells right into the prostate cancer and helps kill the cancer that way.  

Katherine:

Now there are some inhibitors as well. Is that correct? 

Dr. Subudhi:

Yeah. So, the immune checkpoint inhibitors have been around for a while. And, basically, in combination, they seem to be more effective in prostate cancer. But when given alone as monotherapy, they’re less effective. 

Katherine:

Are these treatments specifically for patients with advanced prostate cancer? 

Dr. Subudhi:

All of them are actually in trials in patients with advanced prostate cancer. And I define advanced prostate cancer as either having metastatic disease, meaning the cancer has spread to other parts of the body outside of the prostate.  

Examples include lymph node, the bone, the lung, the liver. But there are so few trials in patients with locally advanced prostate cancer. What I mean by that is they have high-grade prostate cancer, but it’s local, or it’s just in regional lymph nodes. And some of these classes of drugs are being evaluated in that setting as well. 

Katherine:

Let’s shift to talk about your research. What are you excited about right now? 

Dr. Subudhi:

So, my research focuses on immune checkpoint therapies, which are the inhibitors that you were referring to and understanding how to make them work better in prostate cancer. 

And we’re finding out that in prostate cancer there’s about 20 to 25 percent of patients that appear to respond to this type of treatment. But these are patients that don’t have a lot of bone metastases. And these immune checkpoint inhibitors are given in combination. So, they’re not given alone. They’re given with either a combination of anti-CD34 and anti-PD-1 or some other form of that. 

Katherine:

Prostate cancer research really can only move forward through clinical trials and patient participation in those trials. Can you briefly explain what a trial is for people who may not be familiar with the term? 

Dr. Subudhi:

That’s a great question. My own father has prostate cancer. And he had the same exact question when he started his journey in that. 

And so, what I explained to him is that clinical trials are experiments. They’re experiments that are done in our patients.  

So, they’re drugs that are thought to mechanistically kill the cancer cell or at least change the environment around the cancer cell to help people live longer. But these drugs were actually tested in mouse models or in tissue models. And we don’t know if they actually work in patients. 

And so, in clinical trials, we’re actually testing whether these drugs are safe and whether they’re efficacious or beneficial to our patients. So, I want to be very clear. When patients go on clinical trials, we don’t know if it’s going to work on them. And that’s something that they should know that they’re showing a lot of courage and risk in joining these trials.  

But the other point I want to make is that every standard of care drug that is out there actually went through the clinical trial process, and they were approved because they showed benefit in a group of patients. 

Katherine:

Well, how can a prostate cancer patient benefit from participating in a trial? 

Dr. Subudhi:

One of the key benefits is that you get access to drugs that may actually prolong your life or even cure you and that you wouldn’t have access to in trials.  

And so, some of my patients, unfortunately, they’ve exhausted all the standard of care choices that are out there. And the trial’s the only option left versus leaving it up to natural causes of demise from prostate cancer. And so, clinical trials give other opportunities to potentially live longer and have a great quality of life. 

Katherine:

So, they could offer some hope. 

Dr. Subudhi:

Definitely. As far as I’m concerned, yes. And, actually, with my patients, I try to not wait while they’ve exhausted all the treatments to start them on clinical trials, because I feel like we may be able to save some of these treatments in our back pocket for when they’re too exhausted to be coming to our clinic so often. And so, I like to actually try to get them enrolled in clinical trials early on in their journey with prostate cancer. 

Katherine:

I’d like to define some clinical trial terminology to help patients further understand the process. Let’s start with the phases. What occurs during each phase?  

Dr. Subudhi:

So, great question. Phase I is the safety phase. So, all we’re trying to do is find the right dose of the drug that is actually safe to give in the patients. And we’re looking for the maximum tolerated dose. And once we find that dose, then we use that dose to go to Phase II of the trial. And Phase II trials are looking at efficacy. So, looking to see whether the trial is giving you any clinical benefit, meaning the cancer’s shrinking or even disappearing. 

Katherine:

Go on.  

Dr. Subudhi:

And then the third phase is Phase III where you’re testing the current drug, experimental drug, to either standard of care or to a placebo to see whether or not you get a benefit, either a progression-free survival benefit or overall survival benefit. And so, those are the three phases of clinical trials.   

Katherine:

What are the different types of clinical trials? 

Dr. Subudhi:

So, they’re controlled trials. Actually, I should back up. So, there’s open-label trials where everyone that enrolls in the trial will get the experimental drug. So, there is no control arms in these trials. Then there is the control trials where you can either get the drug, or you may get a placebo or standard of care drug.  

There are some trials that allow for crossover, meaning that if you’re in the placebo or standard of care arm, if your cancer progresses, you can actually cross over and get the experimental drug. But I just want to be clear that not all clinical trials have crossover. And if you’re in a control trial, I think that’s an important question to ask your doctors about that. 

But the reason why we do the control trials is that we’ve learned that using historical controls – for example, we’re doing a lot of combination studies with chemotherapy, such as docetaxel (Taxotere), which was FDA-approved in 2004. So, if we’re using historical data from almost 20 years ago, it’s not the same thing as our patients that are being treated with docetaxel now, because their treatment landscape has changed so much, and our patients have changed so much. 

And so, for that reason, control trials give us a better sense of how effective this experimental drug is doing as opposed to comparing it to a historical perspective. 

Katherine:

What other types of clinical trials are available? 

Dr. Subudhi:

So, there are a few other options. So, we talked about open-label where everyone’s guaranteed to get the drug. We talked about a controlled study where you will either get one drug or another. And another type is a randomized trial where a computer decides whether or not you’re going to actually get one drug versus another. It’s not your doctor because a lot of people think that I’m making that decision, and I’m not. It’s actually a random computer. 

And some trials have 1:1 ratio, meaning a 50 percent chance that you’ll get the experimental drug versus the control drug. But other trials have 1:2 ratio or 1:3 ratio. So, that’s something that, again, you have to ask your physician of how these trials are being randomized. 

Katherine:

Well, in a randomized clinical trial, the patient isn’t going to know what drug they’re being given. 

Dr. Subudhi:

Actually, that’s not true. 

Katherine:

Oh, it’s not. 

Dr. Subudhi:

So, you bring up a great question. So, there’s a double-blind randomized clinical trial where not only the patient doesn’t know, but even the physicians and the nurses. No one except for the pharmaceutical company that’s running the trial actually knows who’s actually getting which drug. And it’s only towards the end of the trial that we unblind, and then we share that information. Well, the pharmaceutical company first shares it with the medical team who then shares it with the patient. 

Katherine:

I see. Are there other common clinical trial terms that you think patients should know about and understand? 

Dr. Subudhi:

I think for now those are… 

Katherine:

…they’re the most important?  

Dr. Subudhi:

I think to me those are the most important. And I think that sometimes too much information can bog us down.  

Katherine:

Well, speaking of information, there is a lot out there, some of which may not be very reliable. And that could lead many patients to having misconceptions about clinical trials. Let’s walk through a few common concerns we’ve heard from our community about trials. 

One frequent question is – will I receive a placebo instead of a real treatment? And, first, I’d like you to define placebo. And should this be a concern for patients? 

Dr. Subudhi:

Right. So, placebo is a drug that looks similar to the experimental drug. For example, if the experimental drug is a blue pill, then the placebo will be a blue pill. But it will be a pill that should have no known biological activity.  

If the experimental drug is given intravenously and you get it in a liquid bag, then the placebo will also come in a liquid bag. So, it will look the same. And that’s why both the medical team as well as the patients or their families will not know which drug the patients have received, meaning the experimental drug or the placebo. But the placebos are meant to not have any biological activity. 

Katherine:

So, it shouldn’t be a concern to patients then.   

Dr. Subudhi:

Well, the concern that most of my patients share with me when they hear about placebo-controlled trials is, “Well, if I’m not going to get the experimental drug, why should I do this? I mean what benefit does it have for me?” And so, I tell them that one of the benefits is that we are watching you very carefully. 

Because we don’t know sometimes which drug you’re getting. But in some control trials, like a randomized control trial, we will know because I’m not blinded.  

If you’re in the arm that’s only getting chemotherapy, well, you know you’re not getting an oral pill. So, it’s very clear to the patient what they’re getting. But if they’re getting an oral pill that’s a placebo, we’re watching them very carefully.  

So, we’re watching the patients very carefully in these placebo-controlled trials. And they’re coming in often so that we’re not going to miss any devastating things happening from the cancer. In fact, we’ll pick it up earlier than if they were just getting a standard of care outside of a trial. And for that reason I tell that my patients, “Don’t be worried.” And I always make sure that I have a backup plan. 

So, the backup plan is either they’re going to cross over, meaning the trial allows for them to cross over to get the experimental drug. Or I have another trial that I know that they will qualify for. Or the third alternative is that I actually have a standard of care drug that I’m ready to give them the second I have it so that they don’t have to have those concerns. 

Katherine:

That’s really great information to have. Patients also often have questions about safety. So, what are the risks of clinical trial participation? 

Dr. Subudhi:

So, safety is a major issue, especially more into the Phase I. The Phase I trial, if you remember, are the trials where we’re dose escalating, meaning we start off with a small cohort of patients, maybe three to five patients. And we give one dose of the drug. We see if it’s safe. If it’s safe, then we go to the next dosing level. And we just keep going until we find a dose that may be too toxic or too unsafe for our patient. 

So, in the Phase I, we have less information, especially in the first-in-human drugs. But in those cases, we are watching you carefully to make sure that nothing bad happens to you. 

But the problem with those trials is it requires a lot of time at the institution or with your doctor. For example, I’m doing a bispecific trial where we have to keep the patients inside the hospital for eight days, purely for safety reasons. They’re not getting the drug for all eight days. But we’re just keeping them under observation so in case anything bad happens we’re ready to react because we know that if something bad happens at their home in that first eight days, it could actually risk their lives. 

So, in those cases, some trials, if we’re concerned about safety, you’ll be spending more time in the doctor’s office or in a hospital being evaluated. So, that’s the one negative. But sometimes, the trials that can be more exhausting as far as the amount of time it takes you away from your home and family are the ones that have the most reward. 

Katherine:

Well, what protocols are in place to protect patients? 

Dr. Subudhi:

So, when they sign up for a protocol, we are instructed to give them our best information. So, let’s say it’s a first-in-human drug. Well, usually, first-in-human drugs are tested in other mammals, such as monkeys, and we look for toxicities there. And we have signs of what’s going to happen. Sometimes, a first-in-human drug is part of a class of drugs, like I talked to you about T-cell bispecifics. 

Well, there’s several T-cell bispecifics out there. And we’ve learned that this class of drugs has a unique set of side effects that they all tend to have. Some have it more, and some have it less. 

But when we’re discussing this with you or the patient, we are actually going to go through each and all of these side effects. Now, me personally, my patients that go on my trials, they all get my cellphone number so they have 24/7 access to me because I know they’re taking a risk. And it’s a lot of courage to go on these trials. And it’s scary. And I want to make sure they don’t feel like they’re ever alone. 

Katherine:

Another common concern we hear is that a clinical trial is only considered when there are no other treatment options available for a patient. What are your thoughts on this? 

Dr. Subudhi:

There’s a lot of my colleagues in the field that feel that way. And I know a lot of patients’ misconceptions are also that way. And that’s partly because of Hollywood and movies and TV shows that we watch. But I think that many people, especially in the medical field, think of clinical trials as the last resort. 

And I actually disagree with that. I think that I like to actually start my patients with one or two standard of care treatments. But after that, really start putting clinical trials in between. And we have to remember that there’s not always a clinical trial available that the patient actually meets the criteria for.  

So, it’s always disheartening in clinic when I meet someone for the very first time who was referred to me because they exhausted everything. And we just don’t have any clinical trials available, or they’re so weak from the cancer and all the prior treatments that they don’t qualify for a clinical trial. And then I really don’t have anything else to give them.  

So, my personal approach is to try to put clinical trials in between and always have something in my back pocket so that if they get a bit exhausted or they want to spend more time with friends and family, they can get the standard of care treatment. 

Katherine:

If a patient is interested in participating in a trial, what’s the best way to find out which trials might be available for them and right for them? 

Dr. Subudhi:

So, that’s a great question. I think number one is always ask your oncologist, and they’re a great resource. But also, there’s websites. So, for different types of cancer – so, example, I do prostate cancer. So, the Prostate Cancer Foundation or PCF.org is a wonderful resource that will give you a list of cutting-edge trials. 

In addition, the government has clinicaltrials.gov. And that’s where you can actually type in your cancer type and different criteria, and you’ll get a list of trials. 

Katherine:

That’s good to know. What questions should patients ask their healthcare team when considering joining a trial? 

Dr. Subudhi:

I would ask them, “Would you do it yourself if you were in my situation?”  

Katherine:

Very good. 

Dr. Subudhi:

I think that’s a very important thing to ask.  

Katherine:

Are there barriers that interfere with patients’ access to clinical trials? I think you touched on this but maybe if you have anything to add.

Dr. Subudhi:

Yeah. So, travel can be a major barrier. And that’s something that the pharmaceutical industry understands. And, therefore, some of the trials, especially the multicenter trials, actually allow for travel cost. That sometimes includes flights, driving, hotels, food.  

So, that’s something that’s important to ask because sometimes when we’re thinking about clinical trials, we’re so anxious in the doctor’s office. And then it’s not until we go back home when we’re trying to figure out how do we get the resources to come so frequently. You’ll find out that’s sometimes travel costs. 

The other thing is underrepresented minorities are something that we’ve been doing a relatively poor job recruiting to our clinical trials. Part of that is just from history that we didn’t have the safety rules in place that we do now. And underrepresented minorities were affected negatively in some of the earlier trials.  

And the other thing is just the resources of getting to and from their homes to our cancer site as often as they need to because they may be the sole breadwinner in their homes and things like that. So, there are resources to try to help do this. But I still think we have to do a better job. 

Katherine:

Can trials be coordinated between a local doc and the institution? 

Dr. Subudhi:

So, most trials cannot. Most. But there are some that can. So, if it’s a standard of care treatment, sometimes we can have the safety visits done with the local doctors. But every time they’re going to get the treatment they have to come see us at the institution that is actually running the trial.   

But most of the time, what I tell all my patients is, “I want them to have a local doctor.” Because if there’s something that happens in the middle of the night, I want to be able to say, “You’re going to go to this emergency room where this doctor works.” And then when they go there, as soon as they get admitted into the emergency room center, I talk to the ER doctor, and I say, “This is what I want to be done. These are how these drugs work.” 

Because they’re not going to know what these experimental drugs are. They’re not available in the community. So, I just think it’s important to have communication, especially for our patients that are out of state. MD Anderson is in Houston, Texas. And Texas is so big that a lot of my patients live six to eight hours away, and they’re still in Texas. 

Katherine:

Oh, wow. So, what are your thoughts on what could be done to overcome the barriers that some patients are experiencing? And are there resources available?  

Dr. Subudhi:

So, the pharmaceutical companies are putting in more financial resources as well as a diversity resource. And when I say diversity resources, those outreach programs just to make sure that the communities that are underserved are hearing about the clinical trials because if you don’t hear about it you’re never going to join it. So, one thing is just knowledge. 

And then, number two, we’re trying to create financial resources. For example, there’s Angel Flight as one example where they will pay for the flight for you. And they’ll put you on maybe a chartered plane or something or a smaller plane to defray the cost of traveling by air. So, there are things out there, but we still need a lot more. 

Katherine:

But one thing patients could do is talk to their healthcare team about what resources are available for them.  

Dr. Subudhi:

Absolutely. Absolutely. 

Katherine:

Before we end the program, Dr. Subudhi, I’d like to get your final thoughts. What message do you want to leave the audience with related to clinical trial participation? 

Dr. Subudhi:

First of all, thank you for even thinking about it. That’s the one big step. And for those of you who actually take the next step and actually join a clinical trial, again, thank you for being so brave. 

I think it’s a gift that you’re giving to other fellow patients with cancer. And it’s also a gift that you’re giving to the scientific and medical community, because we are learning by your participation in the trial. And I want you to know whether the trial worked for you or does not work for you, regardless, we’re going to learn something that’s going to help change outcomes in your cancer. 

Katherine:

Dr. Subudhi, thank you so much for taking the time to join us today. 

Dr. Subudhi:

Well, thank you. I really appreciate it.  

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 programs in the future. To learn more about prostate cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thank you for being with us. 

What Does Active Surveillance Mean for Prostate Cancer?

What Does Active Surveillance Mean for Prostate Cancer? from Patient Empowerment Network on Vimeo.

Prostate cancer care may include active surveillance, but what does it mean exactly? Expert Dr. Tanya Dorff explains this approach and how it is used to monitor patients with prostate cancer.

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

 

Related Resources:

How Is Early Stage Prostate Cancer Treated

What Are Advanced Prostate Cancer Treatment Options


Transcript:

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. 

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.

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. 

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.  

Thriving With Prostate Cancer: What You Should Know About Care and Treatment

What does it mean to thrive with advanced prostate cancer? Dr. Rana McKay discusses the goals of advanced prostate cancer care, reviews current and emerging treatment options, and shares advice for playing an active role in healthcare decisions.
 
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:    

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to focus on how patients can aim to live and thrive with advanced prostate cancer. We’re going to discuss treatment goals and the role patients can play in making key decisions. 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 guests today. Joining me is Dr. Rana McKay. Dr. McKay, welcome. Would you please introduce yourself?

Dr. Rana McKay:     

Of course. Thank you so much for having me. My name is Rana McKay and I’m a GU medical oncologist at the University of California San Diego.  

Katherine Banwell:    

Excellent. Thanks so much for taking time out of your schedule to join us. Since this webinar is part of PEN’s Thrive series, I’d like to ask you from your perspective, what do you think it means to thrive with advanced prostate cancer?

Dr. Rana McKay:        

That’s a very good question and I think that’s what um, a lot of patients want to actually you know, do in their day-to-day existence. I think it means that they are combatting their disease. They’re taking a proactive role in um, you know, uh tackling um, their illness. They um, are uh, attentive to sort of doing the activities of daily living that really bring them joy and satisfaction and happiness and setting up a treatment plan that is a mutually agreed upon treatment plan with their clinician. That they have buy-in on. That their caregivers have buy-in on. That allows them to do the things that they love to do while keeping their cancer at bay.

Katherine Banwell:    

Okay. Thank you for sharing your insights. Before we move onto treatment, I mentioned that this webinar is focused on advanced prostate cancer. What does it mean for prostate cancer to be considered advanced?

Dr. Rana McKay:        

So, generally what that means is that the cancer may have spread outside of the body – outside of prostate to other parts of the body such as the bone or the lymph nodes which is a common location where prostate cancer um, uh, can go. Additionally, it may mean that the cancer may have come back after um, it was initially treated with an intent um, to cure um, a patient. But then you know the PSA demonstrates um, that you know, there’s a rise in the PSA and the cancer is recurrent.

Katherine Banwell:    

As you mentioned uh, appropriate treatment is part of thriving. We’re going to talk about treatment approaches. But first, how would you define treatment goals?

Dr. Rana McKay:       

So, you know when I look at defining treatment goals it’s focusing on what do we wanna achieve from the standpoint of the cancer? Meaning, you know, what are objectives that are associated with patients living longer?

And then what are objectives um and strategies that we can set-up to make sure that patients are living better? So, I think the treatments are basically set-up to basically help you achieve those two goals. What can we do to help you live longer and feel better?

Katherine Banwell:    

Yeah. Well, let’s walk through the types of treatments that are used today to treat advanced prostate cancer. What are the treatment causes and who are they appropriate for? Let’s start with surgery, for instance.

Dr. Rana McKay:       

So, surgery is something that’s utilized uh, early on when people are diagnosed with cancer. It tends to be utilized when the cancer has not necessarily spread to other parts of the body but is still localized within the prostate itself or maybe there’s just some little bit of breakthrough in the capsule. Sometimes it can be used in people who have involvement of the prostate cancer in the lymph nodes. But it’s generally not utilized in people who have cancer that’s spread to other parts of the body.

Katherine Banwell:    

Mm-hmm. What about other treatment classes? What are they?

Dr. Rana McKay: 

So, radiation can also be utilized. Radiation is a treatment modality that can be used for people with localized disease and um, also it can be utilized for people with advanced disease to treat the primary tumor.

Additionally radiation therapy can be used to help treat symptoms um, if there’s a bone lesion causing pain or other areas that are causing discomfort. Sometimes radiation to those areas um, can um, mitigate pain. When I think about the treatment classes for prostate cancer um, they generally break down into several categories. The first um, um, most predominant category is the hormonal therapy category. Hormonal therapies are really the backbone of treatment for men with prostate cancer and they include the more traditional hormonal therapies that really work to just drop testosterone. So, just LRH – L – LRHA agonists and antagonists and also, they include um, newer hormonal therapies in the form of pills that really target um, strategies at also affecting testosterone function and testosterone production. Another class is also the chemotherapy agents. There are two FDA approved chemotherapies for prostate cancer that are life prolonging and um, uh there’s a certain role for uh, chemotherapy for people with advanced disease.

There’s also immunotherapy that can be utilized. Um, there’s a um, uh, vaccine therapy that’s actually one of the first uh, FDA vaccines for any solid tumor that’s proving in prostate cancer that can be utilized. There’s also radio pharmaceuticals.

So, these are specific agents that deliver um, a bits of radiation to specific areas. Whether it be radium 223 which targets the bone or the newest radio pharmaceutical, which was approved called uh, lutecium PSMA that um, basically delivers beta-radiation to little – sites of PSMA expressing cancer cells and the last category that I would highlight is the category of targeted therapy. There are uh, two targeted therapies for prostate cancer for patients who have like genomic alterations. Those include the drugs olaparib and rucaparib. So, as you can see there’s a wide spectrum of drugs that can be utilized to really keep this disease at bay.  

Katherine Banwell:    

Dr. McKay, for these treatment classes, what can patients expect as far as side effects?

Dr. Rana McKay:       

Absolutely. So, I think side effects – discussing side effects is a really important part of the discussion for selecting any one given therapy and in general, I think um, when we talk about the hormonal therapies one of the side effects that people can get is largely fatigue.

But a lot of the symptoms are related to low testosterone. And so, that may mean muscle loss, bone loss, um, you know, uh, hot flashes, um, fatigue, decrease libido, um… So, you those are things to consider with hormonal therapies. With the chemotherapies, I think the big ones we worry about are fatigue, risk of infection, um blood counts dropping a little bit, people getting tired, numbness and tingling in the hands and feet can occur, some swelling in the legs are common side effects for chemotherapy agents. With regards to the um, uh, immunotherapy with the vaccine therapy, it actually tends to be a fairly well tolerated treatment. Maybe some fatigue, rarely some dizziness or some lip – lip sensitivity, numbness with the – the process of kind of collecting the cells. But it actually tends to be fairly well tolerated.

The um, targeted therapies can cause fatigue. They can cause the blood counts to drop and can impact bone marrow function. There can be sometimes GI side effects. Nausea, um, rash, um and then the immune therapy, the pembrolizumab, that is FDA approved sometimes that can cause immune related adverse events which is kind of over activation of the immune system developing you know, what I’d call it as the itises. Colitis or pneumonitis which is inflammation of various organs and symptoms related to wherever that may be.

Katherine Banwell:    

When should a patient consider a clinical trial as a treatment option?

Dr. Rana McKay:        

So, I generally think that a patient should consider a clinical trial at almost every juncture that a – a clinical decision is being made. I think sometimes there’s this misperception that, “Oh. Clinical trials should only be utilized when I don’t have any other options.” Where in fact I would say clinical trials should be an option to discuss every single time a treatment is being changed. Um, because you know the ultimately the goal is to make sure patients are as I said, living longer and living better and um, you know, making sure that clinical trials are an option on the table at every juncture is really a key step in that process.

Katherine Banwell:    

What are the benefits of being part of a clinical trial?

Dr. Rana McKay:       

So, I think there’s a lot of benefits. I think um, you know, uh for patients with advanced disease it may provide access to drugs that they otherwise not necessarily have access to.

Um, so the standard of care therapies you know, we can prescribe those at any juncture. They’re standard of care. But clinical trials um, really offer an opportunity to experiment with a uh, uh another agent um, and doesn’t necessarily take away from the standard of care options.

I think um, the other thing is you know, I think a lot of patients with advanced prostate cancer, they um, they – want to give back to the community. They want to leave a legacy. They want to contribute to the science. They wanna be a part of that mission to make tomorrow better than today for men with prostate cancer and I think participating in clinical trials can really help achieve that goal. Um, and also benefit the individual as well.

Katherine Banwell:    

What about emerging treatments? Are there any that patients should know about?

Dr. Rana McKay:       

Absolutely. So, there’s a lot of treatments that I think are currently undergoing extensive testing.

There’s um, additional uh, targeted therapies um, for example CDK46 inhibitors that are being tested broadly in the um, um hormone resistant space and the newly diagnosed setting. Um, there’s um, also AKT inhibitors. There are other targeted therapies that are being tested. There’s novel hormonal treatments that target resistant pathways like the antigen receptor degraders. There’s a slew of immunotherapy options um, cell therapy, bi-specific antibodies that are also being tested. So, there’s a lot of really exciting and novel treatments that are looking at overcoming resistance for people with advanced disease.

Katherine Banwell:    

Hm. Do you recommend that men with advanced prostate cancer get the COVID vaccines and the boosters?

Dr. Rana McKay:       

Very good question and in general, I do recommend the vaccines. Especially for patients with advanced disease and those that are on therapy. Um, several studies have demonstrated that patients with cancer are at increased risk of having complications related to COVID and particularly patients that are on active treatment with cancer are at even greater riskSo, um, I would definitely recommend vaccination as a preventative strategy to prevent really complications related to COVID.

Katherine Banwell:    

Mm-hmm. Thanks, Dr. McKay. That’s helpful information. Since prostate cancer affects men differently. Let’s review what factors could impact which treatment is right for their individual disease. How about we start with symptoms?

Dr. Rana McKay: 

So, yeah. I mean absolutely. I think symptoms are definitely something that plays into effect.

Um, sometimes when patients are first diagnosed, they may not have symptoms. But, you know, boney pain. Um, Symptoms of urinary obstruction. You know, there’s specific um, uh, treatments and uh, strategies that we can deploy to help with those kinds of things. Um, you know other factors that I think I – we take into account when we’re making decisions about which agent should any one patient receive is where are there sites of metastases? Um, is there disease just in the bones and lymph nodes or are there other organs involved? Um, what’s the genomic make-up of the tumor? Um, there are certain treatments that we would utilize if someone had a certain specific you know, uh genetic make-up for their tumor. You know, other things that are really important are what kind of drugs has the patient seen before or has that tumor been exposed to? Because that also helps us strategize for what to give them in the future.

Katherine Banwell:    

Do you take into consideration the patient’s comorbidities and their age and overall health? Things like that? 

Dr. Rana McKay: 

Absolutely. Yeah. I think we need to absolute take that in account. I think – I think age is one thing. But I think functional status is um, just as – as important as the actual number itself because people are very different regarding um,  the things that they can do at various uh, age limits and so, that absolutely takes into account weighing the side effects of any given therapy and how that may interact with someone’s existing comorbidities and it may be something that we have to work with a team of other doctors to basically make sure that there is comprehensive, well-rounded care for any one patient.

For example, some therapies may increase the risk of hyper-tension or increase the risk of volume overload and so, if somebody has issues with that already we may have them see a cardiologist so we can make sure that um, you know, we’re kind of addressing the totality of the patient experience. 

Katherine Banwell:    

What do you mean by volume overload?

Dr. Rana McKay: 

Uh, volume overload I mean if they’ve got too much fluid on board. So, maybe if they have heart failure or something like that and we have a therapy that’s gonna cause them to retain fluid. And so then, we would have to work with a cardiologist to make sure that they don’t run into issues.

Katherine Banwell:    

Right. That makes sense. What are the common symptoms of advanced prostate cancer?

Dr. Rana McKay: 

So, um, you know, I would probably say there common symptoms and just because somebody has these symptoms doesn’t mean they have prostate cancer. But fatigue, weight loss, urinary symptoms, trouble urinating, you know, benign prostatic atrophy is one of the most common symptoms or most common conditions in men and um –

Katherine Banwell:    

What does that mean?

Dr. Rana McKay: 

Um, so sort of benign enlargement of the prostate. Um, you know that’s a common phenomenon that happens with age and it can affect somebody’s ability to urinate.

Um, but um you know uh, sometimes with prostate cancer it can also impact somebody’s ability to urinate. Their stream, their flow. Um, they may have rectal discomfort. They may feel tired, boney pains. Usually, I tell patients you know persistent progressive symptoms that are just you know not going away, not getting better. Those need to be looked at by a physician to evaluate further. 

Katherine Banwell:    

Mm-hmm. You mentioned genetic mutations. Should patients advocate for genetic testing if they haven’t had it already?

Dr. Rana McKay: 

Um, it all depends on uh, what kind of uh, where they are in the process. So, for most men who have advanced disease, they should undergo genetic testing of both their tumor, and it is also recommended to do hereditary testing for patients who have advanced disease. Um, and that information may not necessarily be utilized at the exact time that the test is done.

But it may be utilized down the road for treatment options at a later time point. Um…

Katherine Banwell:    

Mm-hmm. Once a man is undergoing treatment for advanced prostate cancer how are they monitored to see if it’s actually working?

Dr. Rana McKay: 

So, a lot of ways. So, one is by just you know, visiting with the patient. Making sure that their symptoms are in check. Making sure that they’re not developing new um, aches or pains that are worrisome. It’s by checking their labs um, in addition to their organ and bone marrow function. We would check their PSA. Um, and PSA isn’t the whole story. But it is one factor that contributes to us determining whether treatment may or may not be working. It’s also doing intermittent scannings. So, um, you know, uh, CT scans of the organs, of the lymph nodes. Bone scan and now we actually have PSMA based imaging which can be integrated to help um, assess uh, where the disease is and um, not yet being utilized to assess whether something is working because we haven’t really defined the criteria there.

But um, it can be utilized as well.

Katherine Banwell:    

Mm-hmm. 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 twelve 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 um, personalize therapy based on the genomic information of that tumor.

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

Katherine Banwell:    

What do you feel are the common obstacles to care for a man with advanced prostate cancer?

Dr. Rana McKay: 

So, I think that there can be a lot of obstacles with regards to um, you know, comprehensiveness of the care. You know it’s one thing to sort of, “Okay. This is the next therapy to treat you with.” But there’s a lot of side effects that can happen with any one given therapy and ensuring that there is open dialogue between um, uh a man and his – his clinician and caregivers.

You know, I think that that can sometimes be a hurdle. Like that open communication can be so important. It’s not just about picking the next best drug but it’s ensuring that there’s sort of comprehensiveness in care. I think a lot of um, you know, patients they may not necessarily know and they’re really kind of dependent on their clinician to sort of go through the compendia of options that may be available and why one may be better than the other for any one given scenario. So, I think it’s like that shared decision-making, that open dialogue.

Um, you know, I think also thinking about advocacy networks, I think um, you know, I can say things until I’m blue in the face like this is what being on ADT feels like. But I think sometimes actually connecting with another patient whose gone through the same experience who can kind of weigh in from the patient perspective like what it actually feels like, I think is not to say a hurdle. But I think we can do a better job as a medical community of making those networking connections available for patients so they can be a part of a broader community of individuals like them going through the same thing they’re going through.

Katherine Banwell:    

Yeah. It helps to know that there are others going through exactly what you’re going through or similar symptoms. We received a patient question prior to the program. What is the difference between my PSA level and Gleason score?     

Dr. Rana McKay: 

Yeah. So, very good question. So, Gleason score is something that is determined based off a pathologic assessment. So, it’s basically you know, a biopsy is done from the prostate or the – the surgical specimen from the removal of the prostate is looked at under the microscope and a Gleason score is based off what something looks like underneath a microscope and ideally, a Gleason score is given really only for the prostate – for tissue derived from the prostate.

So, if somebody has a bone biopsy for example or a lymph node biopsy, they’re not going to necessarily get a glycine score per se. It’s been – been validated from the prostate itself and ideally, also, an untreated prostate. So, if somebody has you know had radiation therapy and then has a biopsy, the Gleason score there is – there should not necessarily be a notation of what a Gleason score is. It’s really an untreated prostate. Now PSA is prostate specific antigen and it’s a protein that’s made from the prostate gland and it’s found in circulation. PSA doesn’t hurt any – the actual you know, molecule itself is – is innocuous. It doesn’t hurt anything. It’s just a marker of um, sometimes can be a marker of burden of disease in prostate cancer and I think sometimes we as clinicians do you know, you know a disservice to some patients because I think we fixate – we can fixate a lot on PSA.

But PSA is not the whole story and it’s one factor of several factors that we take into account in determining whether someone needs treatment or whether a treatment is working or not working.

Katherine Banwell:    

Why should patients feel confident using their voice in partnering in their care? Do you have any advice?

Dr. Rana McKay: 

Um, I mean it’s – it’s absolutely important for patients to share their perspective and for there to be shared decision making at every single juncture along the way. Even around decisions to not treat. So, you know, I think it’s a lot of um – there’s a lot of grays in prostate cancer and a lot of art in deciding what treatment to do and at what specific time and for any given patient given the values that that patient brings to the table, they may come back with a different decision compared to another patient. So, without the patient you know voicing what their values are it’s impossible to make a treatment decision.

So, it is so critically important to have that open communication with your clinician.

Katherine Banwell:    

So, in addition to that – in conjunction with that, should men diagnosed with advanced prostate cancer consider a second opinion or consulting with a specialist?

Dr. Rana McKay: 

I think it’s always a great idea to get a second opinion. Um, you know, I think that um, you know, it will only empower individuals um, when they seek sort of a second opinion to either confirm um what their physician has already told them and then they have reassurance that they’re on the right path or maybe provide some new um, novel insights that they can take into consideration and just think about how that could be applied to them. So, you know, I think that a second opinion is always really valuable.

I will balance that by saying um, sometimes it can be detrimental if there’s lots of opinions because I will say that coming to a consensus when there’s lots of different specialists that are involved, and everybody makes the soup a little bit differently –

Katherine Banwell:    

Yeah.

Dr. Rana McKay: 

Sometimes that I think that can actually um, hurt patients in being able to actually come to a decision because then they’re like, “I don’t know what decision to make. This person said do this. This person said do that. This person said do that.” Um, and so that can sometimes be um, detrimental. But a second opinion, I do always encourage it. I do always value it. But I always want the patient to bring it back to me so I can share with them and discuss, “Okay. I understand. This is why x said X-Y-Z. This still aligns. This still doesn’t.” They need a quarterback like you know, it’s one thing to sort of get second opinions. But I think every man with prostate cancer should have a quarterback that’s driving their care and advocating for them.

Katherine Banwell:    

Yeah. How can patients find specialists near them?

Dr. Rana McKay: 

So, um, I will say that they are national comprehensive cancer institutes. They’re all across the country in rural areas and not. I think um, you know finding the closest NCI designated comprehensive cancer center close to you is probably a good place to start and identifying who is seeing um patients with genetic urinary malignancies or prostate cancer at that facility is a good place. I think the prostate cancer foundation is an excellent advocacy group for patients with prostate cancer. They have a tremendous amount of resources um, to help connect patients with um, clinicians, and other resources um, in their journey with cancer.

Katherine Banwell:    

How can caregivers best support their loved ones?

Dr. Rana McKay: 

So, I think being present is one of the first things. Um, you know, I think that uh, um, you know, uh, being you know, supportive, being present.

Like you know, attending the doctor – doctor’s visits. It doesn’t necessarily have to be every single doctor visit. But those critical doctor visits where um, you know clinical decisions are being made. I think it’s really important also um, to there may be some hesitancy on the part of patients to sometimes be open or vocal with their clinicians about various aspects of what they may be experiencing at home, or they may be undermining or sort of – I think caregivers can help in sort of giving an outsider’s perspective. “Well, this is how things are going at home,” and “You know this is how things are,” and “These are the things that we value and we’re gonna go on this family trip,” and “This is a big-ticket item for us. So, how can we work around planning a treatment plan that allows us to do that?” So, I think it’s really important.

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 um, Lutetium PSMA. It’s um, a radioligand therapy that targets specifically PSMA expressing cells. Um It delivers a little bit of beta radiation to those cells. Um, that therapy was approved this past Spring and there highlights at ASCO about the utility of this therapy. Um, 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 um, 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. Um, that really focuses on making sure that up to date, you know, uh, evidence-based data is uh, 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. Uh, ASCO itself also has um, you know patient interfacing you know, materials through their website.

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

Katherine Banwell:    

Mm. Before we end the program, Dr. McKay, I wanted to ask. Are you hopeful that men can thrive with advanced prostate cancer?

Dr. Rana McKay:       

Oh, I am absolutely hopeful that they can thrive. I mean that is um, the name of the game and I think there’s a lot of um, uh, people who can look to for motivation.

Um, uh, to basically show that despite treatment, despite having advanced disease patients can thrive and continue doing all of the things that they love that give them joy and satisfaction in their lives.

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.

Katherine Banwell:    

And thank you to all of our partners. To learn more about prostate cancer and to get tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks so much for joining us today.

Who Are the Members of a Prostate Cancer Care Team?

Who Are the Members of a Prostate Cancer Care Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Atish Choudhury explains which experts comprise a prostate cancer care team. Dr. Choudhury encourages patients to take an active role as a member of their care team.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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Transcript:

Katherine:                  

So, who is typically on a patient’s prostate cancer healthcare team?

Dr. Choudhury:            

Yeah. So, generally, the consultations here at Dana-Farber are multidisciplinary, with a medical oncologist, a radiation oncologist, and a urologic oncologist – so, a surgeon.

And so, if a patient is a good candidate for treatment to the prostate itself, then certainly, the surgeon and the radiation oncologist will talk about those treatments. And if the treatment is primarily with medications, then the medical oncologist will generally sort of take the lead. But there is often a role for local treatment to the prostate itself, even in cancer that’s spread beyond the prostate. So, that’s why the multidisciplinary consultation is so important.

Katherine:                  

Right. What do you feel is the patient’s role as a team member?

Dr. Choudhury:           

Absolutely. So, I think it is very important for the patient to make sure that they come into these multidisciplinary meetings with questions around “What is my stage?” “What are the choices?” “What do I expect with treatment? Without treatment? With the various treatment options?” And basically, to take in the advice that they’re getting from the different members of the multidisciplinary team, and really think about how that’s impactful for them and their goals for themselves and what they really hope for the short term and for the long term.

I think what gets tricky is that there’s really very not-great sources of information that’s out there online and in YouTube videos and things like that, and I think it does play an important role for the patient to really understand what are the real high-quality sources of information – they tend to come from academic medical centers like ours. And certainly, we do encourage second opinions at other high-quality, high-volume centers so that the patients understand that the recommendations that are being made are generally made based on the based data and with people with a lot of experience at treating their kind of cancer.

Katherine:                  

What about caregivers? How do they fit into the team?

Dr. Choudhury:             

Caregivers are critical because patients are not always the most expressive at, really, what their wants, and needs, and desires are. And especially when they’re on treatment, sometimes they’re not so expressive around the things that are bothering them on a day-to-day basis.

So, the caregivers are really important for communication with us to be kind of another set of eyes and ears in terms of kind of reporting what the patient’s symptoms are or what their goals or desires are that maybe they themselves don’t feel comfortable expressing. But they also play an important role in helping us with, kind of, lifestyle recommendations to the patient. Because certainly, much of the process of doing well with prostate cancer treatments is kind of lifestyle modifications – makes sure you’re eating healthy, exercising regularly – and the caregivers can play a very important role in making sure that patients stick to that kind of regimen as well.    

Katherine:                  

I would think one of the issues for a patient too is that just having a cancer can be overwhelming and can make it difficult for them to even remember all the questions and concerns that they have.

Dr. Choudhury:            

Yeah, that’s absolutely critical, and the caregivers play a very important role. So, often, people who are not partnered, for example, will just bring a friend to these appointments just to be that second set of eyes and ears.

How to Play an Active Role in Your Prostate Cancer Treatment and Care Decisions

How to Play an Active Role in Your Prostate Cancer Treatment and Care Decisions from Patient Empowerment Network on Vimeo.

What steps can you take to engage in your prostate cancer treatment and care decisions? Dr. Atish Choudhury discusses current and emerging prostate cancer therapies, reviews key treatment decision-making factors, and shares advice for self-advocacy.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center.
Learn more about Dr. Choudhury here.

Download Guide

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Using Your Voice to Partner in Your Prostate Cancer Treatment Decisions


Transcript:

Katherine:                  

Hello, and welcome. I’m Katherine Banwell, your host for today’s webinar. Today, we’re going to explore the goals of advanced prostate cancer treatment and discuss tools for playing an active role in your care decisions.

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. Joining us today is Dr. Atish Choudhury. Dr. Choudhury, welcome. Would you please introduce yourself?

Dr. Choudhury:        

Hello. Thank you so much for the invitation. So, I’m a medical oncologist at Dana-Farber Cancer Institute, and I’m the codirector of the prostate cancer center at the Dana-Farber/Brigham and Women’s Cancer Center. And I serve as the chair of the Lank Center for Translational Research as well, and ’t’s my pleasure to be here.

Katherine:                  

Thank you so much for taking the time out of your schedule to join us. Today, we’re talking about advanced prostate cancer.

What exactly does “advanced” mean in terms of this cancer?

Dr. Choudhury:          

Yeah. So, it’s actually a pretty broad term, and it can mean different things in different contexts. But generally, what it means is that it’s cancer that has extended outside of the confines of the boundaries of the prostate itself – either locally where it is into the surrounding fat around the prostate capsule or to local lymph nodes, where it could also spread to other parts of the body – like lymph nodes, bone, and other organs.

So, it can really mean different things depending on the context.

Katherine:                  

Before we get into the types of treatment available, let’s start by understanding the goals of treatment. What are the goals of advanced stage prostate cancer?

Dr. Choudhury:              

So, in general, the goal of treating any cancer is to a live a long, happy, healthy life with limited quality of life troubles from the cancer itself or its treatments. And so, for localized prostate cancer, that generally means treating with curative intent – that we give radiation or surgery, potentially in combination with hormonal treatments so that the cancer is taken care of and people can be cured and not need further treatments moving forward at all.

And there are situations, even in fairly advanced cases, where that’s a reasonable and accomplishable goal. And there are other situations that we might not be able to cure the cancer completely, but the treatments can be quite effective at keeping it under control and keep people with a very good quality of life so that prostate cancer is not a day-to-day burden for them and that they can survive with cancer for years, and years, and years.

Katherine:                  

It sounds like these goals would be determined with members of your healthcare team. So, who is typically on a patient’s prostate cancer healthcare team?

Dr. Choudhury:            

Yeah. So, generally, the consultations here at Dana-Farber are multidisciplinary, with a medical oncologist, a radiation oncologist, and a urologic oncologist – so, a surgeon.

And so, if a patient is a good candidate for treatment to the prostate itself, then certainly, the surgeon and the radiation oncologist will talk about those treatments. And if the treatment is primarily with medications, then the medical oncologist will generally sort of take the lead. But there is often a role for local treatment to the prostate itself, even in cancer that’s spread beyond the prostate. So, that’s why the multidisciplinary consultation is so important.

Katherine:                  

Right. What do you feel is the patient’s role as a team member?

Dr. Choudhury:           

Absolutely. So, I think it is very important for the patient to make sure that they come into these multidisciplinary meetings with questions around “What is my stage?” “What are the choices?” “What do I expect with treatment? Without treatment? With the various treatment options?” And basically, to take in the advice that they’re getting from the different members of the multidisciplinary team, and really think about how that’s impactful for them and their goals for themselves and what they really hope for the short term and for the long term.

I think what gets tricky is that there’s really very not-great sources of information that’s out there online and in YouTube videos and things like that, and I think it does play an important role for the patient to really understand what are the real high-quality sources of information – they tend to come from academic medical centers like ours. And certainly, we do encourage second opinions at other high-quality, high-volume centers so that the patients understand that the recommendations that are being made are generally made based on the based data and with people with a lot of experience at treating their kind of cancer.

Katherine:                  

What about caregivers? How do they fit into the team?

Dr. Choudhury:             

Caregivers are critical because patients are not always the most expressive at, really, what their wants, and needs, and desires are. And especially when they’re on treatment, sometimes they’re not so expressive around the things that are bothering them on a day-to-day basis.

So, the caregivers are really important for communication with us to be kind of another set of eyes and ears in terms of kind of reporting what the patient’s symptoms are or what their goals or desires are that maybe they themselves don’t feel comfortable expressing. But they also play an important role in helping us with, kind of, lifestyle recommendations to the patient. Because certainly, much of the process of doing well with prostate cancer treatments is kind of lifestyle modifications – makes sure you’re eating healthy, exercising regularly – and the caregivers can play a very important role in making sure that patients stick to that kind of regimen as well.    

Katherine:                  

I would think one of the issues for a patient too is that just having a cancer can be overwhelming and can make it difficult for them to even remember all the questions and concerns that they have.

Dr. Choudhury:            

Yeah, that’s absolutely critical, and the caregivers play a very important role. So, often, people who are not partnered, for example, will just bring a friend to these appointments just to be that second set of eyes and ears.

Katherine:                  

Dr. Choudhury, we received this question from an audience member prior to the program: What is palliative care?

Dr. Choudhury:           

So, palliative care is really a branch of medicine that helps with symptom management. And so, that symptom management doesn’t necessarily have to be end-of-life sort of symptoms relating to death and dying. It can be just along the way to help with managing the symptoms related to cancer and its treatment, but also to be kind of another medical provider to help with communication of goals of care – what’s really bothersome, what’s really important – so that we kind of incorporate those wishes and desires into the management decisions that we make.

So, a patient does not have to be at end-of-life to engage with palliative care. Certainly, even earlier engagement with palliative care can be helpful to maximize quality of life along the treatment journey. But as symptoms become more bothersome, certainly, our palliative care colleagues can be incredibly helpful – not just in helping manage pain, but also nausea, also depression and psychological side effects. So, they’re a really critical part of our treatment team.

Katherine:                  

Yeah. I think we have a pretty good understanding and the goals of treatment. So, let’s walk through the types of therapy that are used today to treat prostate cancer.

If you would start with surgery?

Dr. Choudhury:            

Sure. So, surgery is a radical prostatectomy, and they take out the prostate – they take out neighboring structures called seminal vesicles, they take out the surrounding fat, and they’ll usually take out some neighboring lymph nodes as well. And there are advantages of surgery in that when the prostate is out, the pathologist can examine the whole prostate front to back, side to side, as well as those neighboring structures to really understand the stage of the cancer – “Where is it?” – and also, the grade – “Is it a high-grade cancer, a low-grade cancer, somewhere in the middle?”

And it really helps guide “What is the risk of developing recurrence afterwards, and are there further treatments that we should be giving after the surgery? For example, radiation to the prostate bed to decrease the risk of recurrences. Surgery does have its own set of potential side effects and complications, so it’s not appropriate for everyone, but in general, that’s the process.

Katherine:                  

What other treatment options? You mentioned radiation. What else is there?         

Dr. Choudhury:          

Yeah, so, radiation comes in two forms: there’s seed radiation, which is implantable little radioactive pellets that are implanted throughout the prostate. And then, there’s external radiation, and that can be given in several forms and over several schedules that it’s really important to discuss with the care team.

The other forms of treatment that people on this call might’ve heard about or read about are in a category called “focal treatments,” and these are basically ways to – and the term we use is a blade but zap – an area of the prostate using lasers, or high-intensity ultrasound, or with freezing an area of the prostate, or with something called “irreversible electroporation.”

These are basically all ways to, again, zap an area of the prostate either with heat or with cold with the intention of killing off cancer cells in an area. And the trouble is that none of these treatments have actually been demonstrated to improve outcomes related to prostate cancer compared to just surveillance alone. And it does complicate, sort of, the monitoring afterwards to see if something has come back.

But there might be very selected patients where there’s an area of cancer that’s seen on a scan – like an MRI – with no cancer seen outside of that area who might decide to pursue this possibility of focal treatment with the goal of maybe putting off the need for something like radiation or surgery. But that’s something that really should be discussed with a multidisciplinary team so that people really understand what they’re getting into in terms of risks and potential benefits.

So, those treatments are not really considered standard at this time.

Katherine:                  

What about hormonal therapy?        

Dr. Choudhury:   

Yeah, so, hormonal therapy plays a role in the treatment of prostate cancer, really depending on the stage and the other treatments that are being considered. So, for example, if a patient is going to surgery for a localized prostate cancer, in general, we wouldn’t use hormonal treatment either before or after the surgery unless they’re planned for radiation after the surgery.

However, for patients who have intermediate risk or higher localized prostate cancer and are getting radiation, then we will often recommend hormonal treatments, which are basically testosterone-lowering drugs, to make the radiation work as well as possible. And then, for patients who have advanced cancer beyond where surgery or radiation is going to be of help, then, hormonal treatments are important to treat the cancer wherever it is.

And that’s because prostate cancer cells, wherever they are in the body – wherever they’re in the prostate itself, or in lymph nodes, or bones, or other organs – depend on the testosterone in your body to supply a fuel – to support its growth and survival.

And so, lowering the level of testosterone in the body basically deprives the cancer cells of that fuel and starts a process of killing cancer cells even without any need for radiation, or chemotherapy, or things like that. However, hormonal treatments are not curative. They don’t kill all the cancer – they kill some and put the rest to sleep. And so, if you stop the hormonal treatment, the cancer will grow back, and that’s why it’s not a treatment on its own for localized prostate cancer.

And that’s also why, for prostate cancer that’s spread, we often add on additional medications to the testosterone-lowering drugs to be more effective at really killing the cancer wherever it is compared to the testosterone suppression alone.

Katherine:                  

Oh, I see. For advanced disease, what treatments are available for patients that are hormone-sensitive or -resistant?

Dr. Choudhury:           

Yeah, so “hormone-sensitive” means that the cancer has advanced, but the patient hasn’t started on testosterone-lowering drugs yet. And so, as I had mentioned, testosterone lowering is really the backbone of treatment of these patients. And so, there are additional treatments that have been demonstrated previously to be effective after testosterone-lowering by itself stops working, and these include a chemotherapy drug called docetaxel. And in addition, there are more potent hormonal drugs called abiraterone, enzalutamide, apalutamide, and darolutamide.

And the role of these other drugs is to block hormonal signaling within the cancer cells from hormones other than testosterone. And so, by doing the more potent hormonal drug in conjunction with the testosterone lowering, that leads to a much deeper response – much more tumor shrinkage – and, it turns out, also prolonged survival in patients treated with those combination treatments – compared top people who are treated with testosterone lowering alone and then receive these drugs later.

So, there’s something about treating more aggressively at the beginning in this hormone-sensitive state that plays out in prolongation of survival. And not only prolonged survival, but improved quality of life due to delaying the symptoms of cancer grown and progression.

Katherine:                  

Right.        

Dr. Choudhury:   

When we then talk about castration resistant disease, certainly we use the same classes of drugs, but then, there’s a wider armamentarium of things that we use that include, again, other kinds of chemotherapy.

There are radiation drugs, and an approved drug Radium-223. And there’s another drug on the horizon called Lutetium PSMA. There are immune therapy drugs – something called Sipuleucel-T – and then, this is also a situation where we do genetic testing of the cancer to understand if there’re certain –what we call “therapeutic vulnerabilities.”

Other treatment options that are available based on the genetics of the cancer that might be helpful in some people? And specific options include a chemo-immune therapy called “Keytruda” in a small subset of patients with particular genetic changes involving genes involved in mismatched repair of DNA. And then, there’s another set of targeted treatments called “PARP inhibitors” for certain sets of patients who have alterations in genes involved in homologous recombination repair of DNA.

So, that’s all very complicated, and so that’s why it’s important to get treated with high-volume providers of prostate cancer patients so that they’re really aware and onboard with these various treatment options that are available.

Katherine:                  

Yeah. Where do clinical trials fit in?

Dr. Choudhury:       

So, clinical trials can fit in anywhere along the treatment trajectory for prostate cancer. It’s not something that’s reserved for kind of late-stage disease. So, for example, for people with localized disease, there are different types of treatment strategies that might be available to maybe enhance the activity of the surgery or the radiation that’s planned. And so, we might consider a clinical trial even for localized prostate cancer.

And then, anywhere along the way, there are standard treatments that are available, and then, there are some experimental approaches that might be available. And the experimental approaches might be to add an additional drug to the standard or to actually – what we call “deescalate treatment” – give a little bit less of the medication and see if the outcomes are the same. And these are tests.

And so, the control arm, when there’s a randomized trial, is generally considered a standard of care. And then, the experimental arm is some alteration or deviation from that standard. But many of our trials are also single-arm trials where we’re testing some experimental regimen that all patients who participate in the trial will take part in, and it’s really important for the patient to ask, “What are the clinical trials available?” “What are the alternatives as far as standard treatments?” and “Are there other clinical trials other than the one that’s being discussed,” that might be appropriate for them?

Katherine:                  

Are there emerging approaches that patients should know about?   

Dr. Choudhury:        

Yeah. So, a lot of the emerging approaches are related to the genetics of the prostate cancer, as I just mentioned. And then, these different forms of radiation drugs – in addition to the ones that have already demonstrated survival advantage, there are other ones in the pipeline. And then, one thing that patients are very curious about is immune therapy approaches to prostate cancer.

Now, the standard kind of immune therapy drugs that are approved for lung cancer, and melanoma, and kidney cancers don’t tend to work particular well for prostate cancer. But there are many clinical trials trying to combine those kinds of drugs with other drugs or have newer approaches to immune therapies that patients with advanced cancer can certainly ask about.

Again, all of this is really experimental, and people need to understand that these sorts of approaches aren’t going to help everyone. But participating in a clinical trial allows our patients to contribute to knowledge that can be useful for other patients down the line.

Katherine:                  

Right. Now that we’ve delved into the types of treatment, let’s talk about what goes into deciding on an approach. What do you typically consider when determining the best treatment approach or option for a patient?

Dr. Choudhury:   

So, the starting point and the ending point is the patient themselves. And so, “the patient” means “What is their age? What is their fitness level? What are their activities? What’s the overall life expectancy? What are there other medical issues?” And then, we consider the cancer – “What is the stage? What is the grade? Where has it spread to, if it’s spread?”

And then, we try to incorporate all of those pieces with data – with clinical trials that have already been reported – and we have a lot of data in prostate cancer from patients who’ve participated in clinical trials, often randomized to one approach versus another, that gives us a sense of “What are the approaches that really benefit patients in terms of increasing likelihood of cure or prolonging the survival?”

And so, once we incorporate all of those things, we can come up with some treatment suggestions, and then patient preference on those suggestions obviously plays a very important role. But sometimes, we start down a line, and the patient is having troublesome side effects or it’s not working as well as we’d really hoped, and it’s important to be adaptive and to change things if things are not going down a route that we’d really hoped. So, that’s an ongoing conversation. It’s not that you make a treatment plan at the first visit and that’s the plan that’s stuck with throughout the whole course of things.

It’s a conversation at every visit on how things are going in terms of how the patients are doing and how the cancer is responding. And then, again, try to manage side effects as well as we can and adjust things if we need to along the way – and maybe switch to something that’s potentially going to be better tolerated or more effective, depending on what we see.

Katherine:                  

Right. It sounds like there are many factors to weigh when making this decision. I’d like to address a list of common concerns about treatment that we’ve heard from the community. So, I’d love to get your take on these. “There’s nothing that can be done about advanced prostate cancer.” Is that true?

Dr. Choudhury:           

So, that is very much untrue in that even patients with pretty advanced prostate cancer – even what we call “high-volume” kinds of prostate cancer – can live for years, and years, and years with appropriate treatments.

And the concern, oftentimes, is that the way that we get those years, and years, and years are with treatments that lower levels of testosterone, and I’m guessing that some of your questions coming up are related to concerns around side effects of treatment. But many of our patients tolerate those side effects pretty well and can live quite a good, and vigorous, and fulfilling life even with pretty advanced prostate cancer.

Katherine:                  

The next one: “Clinical trials are a last-resort treatment option.”

Dr. Choudhury:   

Yeah, so, as I’d mentioned before, clinical trials can be appropriate anywhere along the treatment trajectory of prostate cancer, and they are often being compared against standards which are often pretty good, but can we make them better? And certainly, participating in clinical trials isn’t for everyone, but for a long of our patients who are interested in seeing if an experimental approach might be beneficial to them or contributing some knowledge to patients down the line really do find trial participation to be quite fulfilling.

Katherine:                  

All right. The next one is: “Prostate cancer isn’t genetic, so I don’t need to be tested.” Is that the case?

Dr. Choudhury:        

No. So, it turns out that prostate cancer is actually one of our most heritable cancers. Somewhere between 40% and 50% of the predisposition to prostate cancer is actually genetic, or inherited based on family. So, the part that’s tricky and the part that is hard to maybe explain to patients is that a lot of that heritability is not encompassed in particular cancer genes in the way that many people are familiar with with breast and ovarian cancers, which are often linked to genes called “BRCA-1” and “BRCA-2.” So, a small subset of patients with prostate cancer do have alterations in that BRCA-2 gene, or BRCA-1, or ATM, or some other genes involved in breast and ovarian cancers.

And that does impact, potentially, their treatments down the line, and certainly is impactful for themselves, their siblings, their children as far as, potentially, screening recommendations for other cancers. But oftentimes, we’ll do one of these tests in patients who have a pretty extensive family history of prostate cancer, and they come out negative, and the patient is very confused because they clearly have a family history, but it’s because not all the risk of prostate cancer is actually encompassed in these gene tests that we run.

Katherine:                  

Ah, okay. The next concern is “I’ll lose all sexual function when I receive treatment.”

Dr. Choudhury:         

So, it very much depends exactly what the treatment is, and what’s being offered, and what the recovery is like.

So, for example, for patients who go into a prostatectomy and have very good erectile function, it’s not inevitable that you’ll lose your sexual functioning after a prostatectomy. There is a process – we kind of refer to it as “penile rehab” – of using medications like a Viagra or Sialis to restore the blood flow. You could use certain things like vacuum pump devices to restore the blood flow, and again, it’s not inevitable that people are going to lose their sexual functioning after a prostatectomy.

Even with testosterone suppression, while it plays a role in libido and erectile function, it’s not inevitable that people lose their libido and erectile function completely, even on these drugs. But certainly, more often than not, people will lose their erectile function on testosterone-lowering medications.

And so, there are alternative ways to get erections – involving, again, use of vacuum pump devices or injections that people can give themselves into the penis. People can have penile implant surgery to be able to get erections that way. And so, it’s really dependent on what the situation is.

Again, none of those more mechanical interventions are really ideal, but particularly when people have a defined course of treatment – for example, a surgery or radiation with a brief course of hormones – people can recover erectile function even after those sorts of interventions. And if they can’t, then we do have other approaches that will allow people to still be able to be sexually intimate with their partner after all of the treatments are completed.

Katherine:                  

Dr. Choudhury, one more concern: “My symptoms and side effects can’t be managed.”

Dr. Choudhury:           

Yeah. So, again, it’s very rare that we run into situations where there are side effects or symptoms that can’t be managed at all, in the sense that we have very effective medications against hot flashes, or moodiness, or pain, or –just fatigue. And certainly, lifestyle plays a big role in this. Also, a lot of the symptoms that people express are related to underlying depression and anxiety issues, and certainly, engaging with a mental health provider can be helpful in terms of managing those as well.

And then, there’s a lot of nonpharmacologic treatments – meaning nonmedication approaches that can provide people a lot of benefit in terms of their quality of life, and we have an integrative center called the Zakim Center for Integrative Medicine that helps with the relaxation techniques, and massage, and yoga, and acupuncture…

And people find different approaches to help manage these symptoms and side effects. And so, it’s very unusual where we run into a situation where the side effects are unbearable and unmanageable. Usually, we can manage them in some form of way that allow people to have, again, a good quality of life and a meaningful life, even on prostate cancer treatment.

Katherine:                  

Thank you, that’s really helpful. I’d like to talk about the term “shared decision making.” What does that mean to you, exactly?       

Dr. Choudhury:   

So, shared decision-making really means that when the physician conveys information to a patient, that the patient really understands what’s being said, and what, really, the alternatives are – and the real risks and the benefits of the different alternatives. And so, if a patient goes to see a surgeon and they say, “Well, we should take this out,” and there’s never really discussion of what the risks and benefits of the alternatives are –and the alternatives could be just watching, or radiation, or even more intensive treatment, then that’s not really shared decision making.

But what I think is not exactly shared decision making is when the patient is getting information from really non-knowledgeable or non-reputable sources and then starts to come up with conclusions based on hearsay or people trying to sell them a product that really hasn’t been FDA approved or really tested. And so, those are situations where when the information is really not good, then we can run into troubles with communications. But there are a lot of really excellent sources for patient information that’s available, and the Prostate Cancer Foundation is a really good source, and a lot of the academic prostate cancer centers are really great sources of information.

And so, being educated and asking good questions is really the best way for a patient to feel comfortable that they’re not missing anything and that they’re, again, having all the information that they need to make a good choice for themselves.

Katherine:                   

Do you have any advice to help patients speak up if they’re feeling like they’re not being heard?

Dr. Choudhury:           

Sure. So, I mean, there’s never any barrier to bringing up concerns with whoever that you’re seeing, and if you feel like whoever you’re talking to isn’t being receptive to those concerns, then certainly, second opinions are very useful. But if you see multiple doctors and they’re kind of telling you the same thing based on good evidence, then you probably have to take in what they’re saying, and process it, and see if it really does apply to your particular situation.

But any cancer doctor who really has your self-interest in mind will be very open to discussing the concerns that you have, so you should absolutely bring them up.

Katherine:                  

To close, Dr. Choudhury: What would you like to leave the audience with? Are you hopeful?

Dr. Choudhury:          

Yes. I’m actually incredibly hopeful. There’s been such a transformation in our diagnosis and management of prostate cancer compared to when I first started as an independent attending back in 2012. In the last ten years, there’s been so many new treatments that’ve been approved in the last decade and a lot of newer technologies available for staging patients – really finding where their prostate cancer is.

And newer technologies for treating the cancer wherever it is and in a really smart way. And so, we can really individualize our treatments for the patient that’s in front of us being a bit more intensive for people with higher-volume or higher-risk cancers, and actually potentially being able to back off treatment, and actually stopping some of the testosterone-lowering drugs in patients who are responding exceptionally well to the medications and the local treatments that we’re giving them.

And then, also, I’m really hopeful about the newer treatments and newer technologies that are on the horizon. We have newer – what we call “molecularly targeted agents.” We have new approaches involving immune therapies that are being tested – newer radiation approaches. And I feel like all of this put together allows us to, again, satisfy the goal of maintaining patients’ good, healthy, meaningful quality of life moving forward.

Katherine:                  

Yeah. Dr. Choudhury, thank you so much for taking the time to join us today.

Dr. Choudhury:           

Oh, you’re welcome. It’s so wonderful to have this opportunity.

Katherine:                  

And thank you to all of our partners. Please continue to send in your questions to Question@PowerfulPatients.org, and we’ll work to get them answered on 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.

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

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

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

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

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

Download Guide

See More From INSIST! Prostate Cancer

Related Resources

How Do Genetic Mutations Impact Prostate Cancer Treatment Options?

What Is a Prostate Cancer Genetic Mutation?

What Is a Prostate Cancer Biomarker?

 


Transcript:

Katherine:

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

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

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

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

Dr. Hussain:

Sure. Thank you, Katherine. 

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

Katherine:

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

Dr. Hussain:

My pleasure. 

Katherine:

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

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

Dr. Hussain:

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

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

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

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

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

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

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

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

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

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

Katherine:

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

Dr. Hussain:

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

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

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

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

Katherine:

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

Dr. Hussain:

Yeah. 

Katherine:

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

Dr. Hussain:

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

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

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

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

Katherine:

Very good. Thank you. 

Dr. Hussain:

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

Katherine:

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

Dr. Hussain:

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

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

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

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

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

Katherine:

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

Dr. Hussain:

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

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

Katherine:

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

Dr. Hussain:

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

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

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

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

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

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

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

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

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

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

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

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

Katherine:

What about targeted therapy? How is that used? 

Dr. Hussain:

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

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

Katherine:

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

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

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

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

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

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

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

Katherine:

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

Dr. Hussain:

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

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

Katherine:

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

Dr. Hussain:

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

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

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

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

Katherine:

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

Dr. Hussain:

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

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

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

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

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

Katherine:

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

Dr. Hussain:

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

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

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

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

Katherine:

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

Dr. Hussain:

My pleasure. And be well, all of you.  

Katherine:

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

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

Newly Diagnosed with Prostate Cancer? Consider These Key Steps from Patient Empowerment Network on Vimeo.

For those who are newly diagnosed with prostate cancer, figuring out what to do next can be overwhelming. Prostate cancer survivor Jim Schraidt outlines advice for patients to encourage self-advocacy and to access resources and support.

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

Related Resources

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Could You Benefit from Joining a Prostate Cancer Support Group?

How Can You Insist on Better Prostate Cancer Care?


Transcript:

Jim Schraidt:

If you’re newly diagnosed, get a second opinion on your biopsy slides. Because reading those slides is as much an art as it is a science. And we’ve had people who will come to our support groups who then went on to have their slides reviewed on a secondary basis. And it’s changed their diagnosis. In one case, a guy discovered that he actually did not have prostate cancer.

And in other cases, it’s changed the grading of the cancer that’s identified in the biopsy, which of course then impacts treatment decisions, whether it’s active surveillance, surgery, radiation, or systemic therapy. So, that would be the first thing. I think the other thing, and I that think this is true for most medical issues, is to get a second opinion, take the time to get a second opinion.

And in the case of prostate cancer, try to do it at a medical center that takes a multi-disciplinary approach to the disease. So, you would be meeting at the outset with a urologist, a radiation specialist, and perhaps a medical oncologist who can really take you through the options, the treatment options for your situation.

And then I guess the final of three items that I would say is find a support group. And even if you want to just join one of the virtual groups and listen and learn, that’s perfectly fine. But learn about the disease you have, and learn about the treatment options, and learn the things that you need to ask your medical practitioners to help you get the best outcome.

Because the happy patient is going to be the one that knows what he’s getting into and makes and accepts that as part of his decision and can focus after treatment on healing and not on treatment regret.

Caregiver Support: Taking Care of YOU

Caregiver Support: Taking Care of YOU from Patient Empowerment Network on Vimeo.

Prostate cancer caregivers support patients in many ways, but also need support for themselves. Social worker Linda Mathew details the role of caregivers and shares resources to help them maintain their own self-care.

Linda Mathew is a Senior Clinical Social Worker at Memorial Sloan Kettering Cancer Center. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

How Can a Prostate Cancer Social Worker Help You?

Why You Should Speak Up About Your Prostate Cancer Care

Tools for Managing Prostate Cancer Fear and Anxiety


Transcript:

Linda Mathew:

So, caregivers have a really important role in caring for their loved ones, so whether it’s their spouse, or a sibling, or a child, they – their role 1). Is to advocate as well for the patient in terms of saying, “Hey, you know what? Let me call the doctor’s office. This side effect was on the list, but I’ve noticed that it’s ongoing, so let me reach out to the office for you if you’re not feeling well.”

They are the eyes and ears for their patient or for their loved one in terms of just saying, “Something is not right. Let me call.” And, most of our nurse practitioners or nurse office practice nurses will say to the caregiver, “You are our eyes and ears when you’re at home. When the patient is here, we’re the eyes and ears for that person to assess what’s going on.”

But also, the caregiver really – sometimes, what happens is there’s a role reversal, so they become that emotional support for the loved one, the financial support, practical support, and also the spiritual support for their loved one, and we remind them that is your – that is a huge role to play, and there’s no handbook for it, but we have resources for you, so you’re not alone in that process.

And, the one thing we really stress is here at Memorial Sloan Kettering Cancer Center, we recognize the important role of our caregivers and how important they are to the loved one that they’re caring for. So, with that resource-wise, the social work department has a program called Reach for Caregivers, and it’s a hospital-wide program that we offer support groups as well as educational workshops.

And then, in November, being Caregiver Month, we put on a lot of different programs just for our caregivers to know we recognize you, we know you need the support, so here it is. So, in terms of support groups we offer, it’s all online because we know that sometimes, the caregiver is also working outside of the home, so to help meet them where they are, we’ve offered an online support group that they can tap into during their lunch hour, or even after work.