PROSTATE PROS invites Alex Scholz, CEO of the Prostate Cancer Research Institute (PCRI), to discuss how the PCRI helps educate men and caregivers. Scholz gives us a look inside the PCRI’s annual and mid-year patient conferences, the PCRI helpline, and all the ways they provide free, expert-reviewed information on all aspects of prostate cancer.
ABOUT THE PCRI: The Prostate Cancer Research Institute’s mission is to improve the quality of prostate cancer patients’ and caregivers’ lives by supporting research and disseminating information that educates and empowers patients, families, and the medical community.
Register for the 2019 Patient Conference: pcri.org
Dr. Scholz: Welcome to PROSTATE PROS podcast we’re guiding you to treatment success and avoiding prostate cancer pitfalls. I’m your host, Dr. Mark Scholz, here with my co host, Liz and today’s guest, Alex Scholz.
Alex: Thank you it’s really great to be here.
Liz: Dr. Scholz, can we get some insight first into what the PCRI is, since you are one of the original co-founders?
Dr. Scholz: Yeah the PCRI was founded by Dr. Steven Strum and myself. Over 20 years ago to help patients learn about prostate cancer. As everyone has learned already, prostate cancer is very complex. And it’s a strange throwback, the world of prostate cancer, sort of a backwards industry because it is the only type of cancer where surgeons are operating in the primary care position. So, Dr. Strum and I, being medical oncologists, thought early on that it would be very helpful to provide education resources for patients as they are reflecting on all their many different treatment options. Our first employee was Harry Pinchot, called “Helpline Harry.” Harry would answer phone calls from all over the country from men who are interested in selecting their different treatment options.
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Liz: We’ve talked a little bit about the support men get at the PCRI conferences. I wanted to follow up on that with Alex Scholz who is the CEO of the PCRI. Welcome, Alex, we are glad to have you today.
Alex: Thank you so much for having me.
Liz: Alex, I’d love to hear a little bit more about the helpline, but the 2019 Patient conference is coming up fast, so can we talk a little bit about that first?
Alex: Absolutely. September 6th, 7th, and 8th we have the prostate cancer patient conference and there’s a lot of conferences out there on prostate cancer but what sets this conference apart is that it is absolutely, 100% designed with the patient and the caregiver in mind. Our job is to make sure their questions get answered and there is a lot of information in prostate cancer around lifestyle, side effects, and treatment and we want to make sure that they get to have their questions answered by experts. So from all over the world we have experts coming in those types of treatments, in those types of situations to guide these patients to the right choices for themselves.
Liz: So, I went to the mid-year conference in March and it was my first experience with PCRI and I got to sit in on a couple of talks. I was getting the answers to questions I didn’t really know I had. And a lot of those I didn’t know a lot about where I didn’t know a lot about testosterone and hormone therapy. So, I’m curious in the annual conference if there will be more on that or what topics are you covering?
Alex: Yes, there will. So, our job at the September conference, you mentioned the mid-year that’s in March. So, we have two conferences every year, one in the spring and one in the fall. And the fall conference is really designed to cover all topics of prostate cancer, so we will be covering testosterone, hormone therapy side effects, we’ll be covering advanced treatments, you know active surveillance with Gleason 6, there is no aspect of prostate cancer that isn’t covered. And how that is designed is through our staging system. The audience themselves takes our quiz which is six questions and they are separated into groups according to their stage. The benefits of that are number one that they get to hear about all the treatments available to them with in that stage not just one, so it’s not divided into treatment. And they also get to talk to other prostate cancer patients who have been through similar situations because they are all in the same room together and then hear from an expert in that stage themselves who can speak to any question that they ask. The entire conference is designed with that format in mind as well as all the other information they need to know about diet, lifestyle, nutrition, supplements, everything, including exercise and we try to cover every aspect.
Dr. Scholz: I’m glad Alex mentioned the quiz. This was implemented in our conference for the first time last year and the power of being able to speak to a subgroup of men with the same stage is amazing. When I’m speaking to a general prostate cancer audience, I often have to remember that I have men in the room that have practically harmless types of prostate cancer and others that have life threatening types of prostate cancer. Almost like different illnesses. And it can be quite confusing speaking to such a diverse group. What a pleasure it was talking to a segment of men who have the same type of prostate cancer. Our September conference this year is going to follow that format again.
Liz: You can find that quiz at keytopc.com
Dr. Scholz: Let me just jump in here. The changes that are going on in imaging have been revolutionary over the last ten years, as Alex pointed out. 3T MRIs have completely altered the way we think about diagnosing prostate cancer and it’s been a great upgrade, a lot safer, a lot more accurate than the old fashion random biopsies. Another big imaging breakthrough is called the PSMA PET Scan. These new PET scans are not yet FDA approved, but they are available at a variety of centers across the country through clinical trials. What’s remarkable is these scans are able to localize prostate cancer in the body when the PSA is less than one. We’ve never had technology like this before. So, this is coming and it’s going to affect all of the stages and the way we manage prostate cancer going forward. I’m sure we will be having information at the conference to help patients understand better what this scan can offer them.
Liz: I went into the Mid-Year conference with kind of a narrow focus on wanting to learn more about testosterone therapy. And you talked a lot about different topics that will be at the yearly conference that I’m really excited to learn more about and I’m sure the same thing will happen when I go in and I have all these questions I didn’t know I had and I learn a whole bunch of new information about prostate cancer and men’s health and I’m just excited to see what’s going to happen at the yearly.
Dr. Scholz: One thing we haven’t mentioned about the conference is our fearless leader, Dr. Mark Moyad from Michigan University. Dr. Moyad has really carried this conference on his shoulders for a number of years. He provides such clear, scintillating insights , and does a great job at drawing the best out of these speakers. And he’s got a wonderful sense of humor. We all have a really good time together.
Liz: Ok, Alex, what feedback are you getting from these yearly conferences?
Alex: Every year with these conferences we do surveys afterwards in order to find out did the patients questions get answered, what topics are they looking for, did the caregivers needs, were they met? And so our conference, being designed for patients, we rely heavily on that feedback in order to adjust our topics and the design of the conference and future conferences. So some of the feedback we got is they loved the staging, so like Dr. Scholz mentioned, we did that for the first time, breaking out the sessions into staging sessions for our breakouts. They really appreciated that, but they wanted more on diet and lifestyle, they wanted more on incontinence and erectile dysfunction and things like that. Things that surround prostate cancer are affected in prostate cancer. Every year we take that feedback and we design it. So this year we have every topic, again we have the stages, but we are also going to be covering you know, what do you do in chemo situations and radiation, hormone therapy, you know immunotherapy, what’s out there in the world. The new advances in the medical system is so exciting what’s happening in the medical field with all these new drugs coming out. You know they have all these new second generation hormone therapies, so we are going to be covering that. The new advances, the latest information and we feel it’s really important the patients stay up to date because they may think “oh I know the standard treatments out there” but so much has changed in the landscape that they don’t know the new treatments that are coming out and it can be applicable to them. That’s really our focus.
Liz: It has a focus on new treatments and probably new imaging techniques. I know that’s something I got asked a lot at the conference was “Where do I find facilities to get imaged at?” And the great thing was is I had just looked at your website, and I had found your imaging section. Can we talk a little bit about that?
Alex: Yeah, so you can find that at PCRI.org/imaging basically what that is for is patients who need to see their prostate, they want to know what’s going on and see the size of their prostate, is there any cancer nodes and not have a random needle biopsy, but have a targeted biopsy, that’s the reason we designed this. We are very passionate that they don’t get random needle biopsies. That they get targeted biopsies, and so we wanted to provide a list of centers, according to state that have 3T, which is 3 Tesla MRI machines that will give them the best pictures so they can have educated conversations with their doctor and their doctor can help them decide on the best form of treatment by seeing where the cancer is at. So, we have a list according to state, they can just click on their state, it will scroll down automatically and we try to make it as user friendly as possible.
Liz: We get a lot of comments on our social media from men saying “I wish I had known more before deciding on treatment,” or, “I rushed into treatment before these resources even existed” and one thing about the PCRI’s website that’s really cool is that it’s organized by stage. If I know I’m a TEAL, I can click on the teal square and then I’m just directed right to all the information, including new information about TEAL and it’s just a really easy way to stay organized and up-to-date. So the book, Key to Prostate Cancer is also organized by stage, so that is a really great resource. If you don’t have access to pick that up, you can also find the staging quiz on keytopc.com
Alex: So, on PCRI.org, you know, we mention the quiz and people taking it at the conference but we actually have it on our website as well and the staging system, so they can answer those six questions, and get to their particular stage. And it’s become very popular, it’s only been out for about a year and a half to two years and we’ve had about 13,000 people take it and it’s been really interesting just seeing the effect that has on the patient, being able to just answer six questions, know what stage they are in and see what treatments are available and again the side effects that are associated with lifestyle. You know, you’re not going to have some in a Gleason 9 being offered active surveillance when they are obviously in a more advanced stage and so, being able to bring clarity to that situation through the staging system is something we’re really excited about.
Liz: I’ve put on my calendar September 6-8 for the conference so I’m clear that weekend.
Alex: That’s awesome, really looking forward to you being there. We’re really excited to have patients and caregivers come, it’s completely designed for them as we’ve mentioned. And if they’d like to come, they can register at PCRI.org our early bird registration ends September 1st. Come to the conference, get your questions answered, meet other people, meet support group leaders, experts, come meet the PCRI team, we would love to walk alongside you in this journey of prostate cancer and we are really passionate about you.
Liz: It is ok to pause this podcast, and go register now, it is PCRI.org so I’ve already registered for the September conference and I have a couple questions that I’m kind of excited to hear the answers for.
Alex: First of all, they can submit their questions to us beforehand as they think about them at PCRI.org/2019-conference and so we have a button there, they can just fill out their question, fill out if they’d like it to be for a specific speaker or just in general and we get all of those and bring them to the conference with us. At the conference in every single session we do allow time for Q & A. And so they can either use the question cards that’s provided to them in their program books, they can text us their questions, at the number in their program books, it’s also on the screens, and then they can email their questions at PCRI.org, so we have multiple ways for their questions to get answered. A lot of guys come and stand in line and when the speaker gets off the stage he’s always available to answer questions. And we also have what we kind of call the ‘press room’ after the speaker gets off the stage and Mark Moyad moderates some of the questions from the audience but also his own, the patients can go to the pressroom and the speaker will come and answer their questions there as well in person. And that’s a really great format because they get to hear what he’s telling other patients and those situations how it applies to them. So it’s a really good set up for that.
Liz: What are some common questions or, like, prostate cancer myths that you find a lot of people asking?
Alex: One of the myths that kind of happened with the government, you know, saying that PSA testing really isn’t relevant. That’s a myth. PSA testing is absolutely relevant. It may not tell you exactly what’s wrong but it is telling you there is something wrong. Your PSA is elevated, maybe you have BPH, prostatitis or it could be prostate cancer. So when guys call us and say“should I really get my PSA tested?” Yes, yes absolutely, please do so. So that’s one myth. Another myth we get is that Gleason 6, surgery in general, “Do I need surgery?” “Are the side effects really, my urologist is telling me that I’m going to have no side effects.” Really? Statistically, no side effects? Great, no, you will have some form of side effects most likely. A lot of guys call us and say, “When it comes to surgery, what do I need to know, what is he not telling me?” They do need to know that you don’t need to just rush to surgery, that you have time, you have time to make your decision. Thinking in that form, that’s a huge myth to me. There is time to make your decision, even in the most advanced cases. And surgery, no is most likely not your best option, and yes it will have side effects. Another thing I think is really important, especially in the rushing process, is that one of the things we get calls about is “Hey, my doctor says I have a rising PSA and he’s sending me to a random needle biopsy. And he’s telling me I need this right away and the urologist is saying I need this right away, is that true?” No, that is a myth too. So we already talked about the imaging, the 3T MRI imaging that they can do, so they can do a targeted biopsy and not have to have 14-12 cores in their prostate and maybe have 2-3 cores depending on the image and where they see the node and the possible cancer and really biopsy that section and not the entire prostate. Those are kind of the major things we hear a lot in prostate cancer that still surprise us. Like 3T MRI is all over the country, why are we not doing this standard? Yes, your PSA is a check engine light, you absolutely should be checking your PSA and using it to just say “hmm, something is a little amiss here, let me see what this is.” And, yeah, when it comes to surgery there is definitely a lot more side effects and unfortunately we get the calls from the men who are dealing with those side effects and were told that wasn’t going to happen. They are having erectile dysfunction and urinary incontinence and they are dealing with these issues and sometimes it’s permanent. You’ve got a guy getting surgery at like 52, and he’s having to deal with that for the rest of his life.
Liz: Yeah, a lot of those sound like people who have just fallen into all of the myths we hear about prostate cancer and are just getting this kind of treatment regret because of all the media and doctors beliefs around prostate cancer that maybe don’t know as much about it as a specialist does.
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Liz: So the phone number for the PCRI’s help line is 310-743-2116. You guys are really giving out a lot of information. You have the conferences twice a year, you have the helpline…
Alex: One of the cool things about the conference too, is that our help line team we take calls from all around the country 24/7, seven days a week in emails and phone calls, answering prostate cancer questions, we’ve been able to build relationships with these patients and walk alongside them in their journey and those same prostate cancer facilitators are going to be at the conference. So they can talk to somebody over the phone and then meet them in person and have ongoing conversations. The patients come up that have been on helpline and go and find Jonathan or Bob or Sylvia, or whoever, Nathan who’s on helpline, “What do you think about that?” “I just heard the speaker say this, and I need clarity and I need you to, how does this apply to my situation since we’ve been talking about it?” It kind of brings the PCRI full circle a little bit when they get to meet whoever they’ve been talking to over the phone. And they’ve had advanced prostate cancer, and they’ve been through multiple treatments, but they’ve also been trained by Dr. Scholz and medical advisory board, and have trained in prostate cancer for months before they are ever even on a phone call with a patient. And so they’ve had a lot of experiences, they stay up to date, they shadow Dr. Scholz in clinic, so they get a lot of training, and our job is to make sure they stay up to date so they can tell you the latest information and really build it around your stage. Anyone, prostate cancer patients, we get a lot of caregivers, a lot of wives that call. And it is 100% free, we are definitely here for you. One of the other ways they can reach helpline is our email at helpline@pcri.org
Liz: So, I’ve read on the PCRI website that part of the mission is to make sure that providers and physicians are also kept up to date on the most recent advances in prostate cancer. And that’s also something we’re trying to do with this podcast. It’s definitely for patients and caregivers but it’s also for doctors in the hope that this information can kind of start to turn the industry and make everyone just be on the same page whether it’s with how we treat Gleason 6 or targeted biopsies. It’s important that doctors also stay up to date on this information and I think that nonprofits like the PCRI can help a lot with that because the information is easy to read and process quickly.
Dr. Scholz: We are at a time right now in the field of medicine that is expanding and growing at a faster rate that’s ever occurred in history. And the medical industry is not very well prepared to incorporate all this new information in their day to day practices. It’s just too much information. The responsibility then starts to fall back on the patient’s’ shoulders. You, yourself have to look out for your own health to make sure you are getting the latest, most up to date care. Today it really matters. When I first started doing this 20-25 years ago medicine changes were occurring at a snail’s pace. But now they are changing week to week, month to month. So the PCRI’s goal is to get all this new information out in an understandable format for the patients to be able to present to their physicians and to be able to get the most up to date care.
Alex: We have our website, PCRI.org as we mentioned and that not only has all of our articles, our newsletters posted there, we have lots of blogs, and the latest updates, press releases in prostate cancer. We also have our video library which is based from our youtube channel, so youtube/thepcri that’s our youtube channel, and currently we have gosh, at least 270 videos posted. We post three to five times a week on every aspect of prostate cancer and so the website is flooded with those videos as well. And we also have a prostate cancer staging series with you know, we have the quiz, but we also have a staging guide so we can mail all that out, we can email it to anybody that needs it. And that’s kind of the short version of Dr. Scholz’s book, The Key to Prostate Cancer. So it’s kind of a summary, it’s definitely not as in depth as the book but it’s a really great starting place. We send that to over 260 support groups in the country, and we actually present, have presentations that we send them every other month to help them stay educated. And we also are doing a webinar in June on Men’s Health. And so they can find more about that on the website at pcri.org, so we have multiple facets between the quiz, the video, the articles, and a lot of different media in order to be able to try to help prostate cancer patients learn in their form how they want to learn about prostate cancer in whatever media they prefer.
Liz: Again, we want to thank Alex for joining us today and telling us about all the different ways that the PCRI helps men get information. Alex, we definitely want you to come back after the conference and maybe you can fill us in on someone the important things that happened that listeners might have missed.
Dr. Scholz: This has been so much fun today, having Alex tell us about the PCRI. And I know we have a lot of good stuff for you all planned in the future. Don’t forget to subscribe so you don’t miss out on our next episode. We’re going to open the discussion with the ‘just cut it out’ mentality that is so pervasive in this field.
Liz: You can email your questions and topics you’d like to hear more on to podcast@prostateoncology.com that’s podcast@prostateoncology.com if you like what you hear, please rate review and subscribe on iTunes/Apple podcasts.