Testicular Cancer Survivors Find Community and Healing Through Foundation and Patient Summit - Connor O'Leary & Charles Freeman McCluskey

January 11, 2024

Zach Klaassen hosts a discussion with Connor O'Leary and Freeman McClusky, both testicular cancer survivors. They delve into the history and mission of Testicular Cancer Foundation (TCF), emphasizing its focus on education, awareness, and support since its inception in 2009. The conversation highlights the importance of community and brotherhood among survivors, with TCF playing a pivotal role in providing a supportive network. Both Mr. O'Leary and Dr. McClusky share personal experiences, underscoring the impact of TCF in their lives and the lives of others. They discuss the TCF Summit, an annual event that fosters education, emotional support, and camaraderie among survivors. The summit's recent iteration in Las Vegas is praised for its educational sessions and the opportunity for survivors to connect and share experiences. The discussion concludes with a call to action for both patients and providers, emphasizing the need for ongoing support and awareness of the challenges faced by testicular cancer survivors.


Connor O’Leary, The Testicular Cancer Foundation

Charles Freeman McCluskey, MD, Wellstar MCG Health, Macon, GA

Zachary Klaassen, MD, MSc, Urologic Oncologist, Assistant Professor Surgery/Urology at the Medical College of Georgia at Augusta University, Well Star MCG, Georgia Cancer Center, Augusta, GA

Read the Full Video Transcript

Zach Klaassen: Hi. My name is Dr. Zach Klaassen. I'm a urologic oncologist at the Georgia Cancer Center in Augusta, Georgia. I'm joined by two close friends and colleagues. I'm joined by Connor O'Leary, who is the Chief Missions Officer for The Testicular Cancer Foundation, and Dr. Freeman McClusky, who is one of my residents at Wellstar MCG Health, and I'm delighted to have both these fellows join us today to discuss the Testicular Cancer Foundation, discuss the patient summit, and testicular cancer survivorship in general. So, thank you both for joining us today.

Charles Freeman McClusky: Thank you for having us.

Connor O'Leary: Yeah. Thank you, Dr. Klaassen.

Zach Klaassen: So, first question, I'll direct at Connor. So, give us a little history and background on the Testicular Cancer Foundation. How long has it been around for? What's some of the core statements that you guys have?

Connor O'Leary: Sure. Yeah. So, it was founded in 2009 by Matt Ferstler, who was the CEO at the time, whom you've met. He was diagnosed with cancer. He was from the Houston area and when he was diagnosed, he was frustrated that he wasn't even aware that he was susceptible to a disease like this. At 19 years old, cancer is the furthest thing from your mind. And so for him, he felt like, "How did I not know about this? How was I not taught this in school? How did my parents not know about this?" And so, he, at the time, was a college student, going through marketing, and decided that he was going to start a foundation that focused on some of the things that he thought were lacking in the testicular cancer community. And so, TCF, the three pillars, are education, awareness, and support. And so, we provide shower cards.

At the time, early days back in 2009, 2010, he was trying to get legislation put in place for providing some of this material in schools, and as time has gone on, we're still heavily focused on that education and awareness piece, but we've really gravitated more towards that support side, and ensuring that these men that are diagnosed have the proper support that they need as they're going through a cancer diagnosis, many of the times, which is at, like I said, an early age.

Zach Klaassen: Right.

Connor O'Leary: And so that's really kind of who we are in a nutshell and what we focus on.

Zach Klaassen: That's great. I want to direct this to both of you guys. We'll start with Freeman. You guys are both testicular cancer survivors. I know that's not disclosing anything that you guys disclose to everybody, and your honesty and opinions are much more important than mine as a provider, and I think I'd love to hear how the role of TCF has supported you personally. Let's start with Freeman.

Charles Freeman McClusky: Absolutely. So, I was talking to Connor about this yesterday. How did I find TCF? I know it was through Facebook, but I think it started with a Google search and I went around on our meeting last night and asked everybody, "How'd you guys find TCF?" And there were a couple of people that were like, "I'm pretty sure it was a Google search." But you get diagnosed with a disease like this, and you're young, so you're certainly not prepared, but then with the treatment and everything, and surgeries, that all of that is quite possible when you get a diagnosis like this, you have to kind of put things on pause, and it's really, really hard to put life on pause, especially when life is actually going pretty well. I was in medical school and was really stoked to be taking these rapid-fire exams, and all of a sudden, I had this to deal with.

So, it was an immediate saving grace for me to find the Testicular Cancer Foundation on the internet because all of a sudden, I had a virtual room of guys who all had these germ cell tumor diseases, who are doing well, who had experience, and a lot of hope and advice to offer, and it was all of a sudden like, "Oh, this is normal. Here's a group of guys from all over the country," from Sacramento to Pennsylvania, southern folks, and it was this immediate community. And so, that's for sure the biggest thing for me, is it's like, I guess, the science that goes behind how support groups are helpful, where you have a group setting of support group. It's like that, but it's also a brotherhood of friends who are in the similar trenches, if you will.

Zach Klaassen: Yeah. That's great. And Connor, you obviously have survived yourself, but also taken a leadership role in TCF. How has it affected you, and been influential in your life?

Connor O'Leary: Yeah. It's been huge for me, honestly. It's something that I didn't think I needed when I was diagnosed, but after being on the other side, it's something I so badly wish I had. I was diagnosed in 2009. I hopped on board with the Testicular Cancer Foundation probably five or six years later. And to see the impact it has on guys that find TCF, when they're immediately diagnosed or soon thereafter, I've never found a guy that's been like, "Oh, man. Yeah, this group is cool." It's always, "Oh, I'm so grateful I found this group." And the guys that didn't find it until five, 10 years later are like, "I wish I had this when I was diagnosed." And that's the category I fall into, to see the impact this has. Freeman said it perfectly. It's this brotherhood, and you get guys from all walks of life, and I literally mean all walks of life. Geographically, economically, socially, politically, but all of that goes out the window when you hop on a call with these guys and everybody just gels and vibes and it's such an open, welcoming community.

It truly is a brotherhood. And I'm grateful that we have that for these guys and that resource, and it's something that I really wish I had, but I'm grateful I have now because life after cancer, you go in remission, and it's not just like, "Oh, you're good." There are so many by-products, as we all know, that I think a lot of times there's kind of a gap there, and we can talk about this a little bit later, but so many guys struggle with life after cancer, and that's not necessarily addressed on the hospital, the doctor level, which I think is a gap that needs to be filled, but I'm very grateful, obviously for my role as the Chief Mission Officer, but I'm a beneficiary of this group myself as a survivor.

Zach Klaassen: Yeah. That's great. I think somebody who's passionate about testicular cancer patients from a provider standpoint, and that you guys host a patient summit, which is a phenomenal experience. I was fortunate and humbled enough to be invited to be a part of it this last year, and we'll get into that a little bit, but how long has that been going on for and what was the genesis to bring people together in one location at least once a year?

Connor O'Leary: Yeah. Great question, Dr. Klaassen. The TCF Summit was really a spinoff of a program that we originally called The Speaker's Bureau. So we would get a small group of guys, of survivors. At the time, it was in Austin, but the goal and the mission of The Speaker's Bureau was to train guys how to share their story so that we would then have boots on the ground across the country. That they could share their story, that they could raise education and awareness, and ultimately put TCF on the map on a national scale, but what we found was these guys were still struggling. Even though they were testicular cancer survivors, they had issues that they hadn't worked through, that maybe hadn't been addressed, and we thought, "Man, we really need to rethink this and create an all-encompassing program to get guys in the same room."

A lot of guys have never met somebody else that has been through the disease face-to-face, which is crazy. And so we thought, "Let's create something that's welcoming, that gets the community together, that has an education piece to it." So, fantastic folks like yourself who are willing to share their expertise. But it started out as something that's snowballed into this big TC family get-together, which is pretty amazing.

Zach Klaassen: Let's focus on the most recent one. We had it in Las Vegas in September of 2023. I'd like to ask both of your opinions on what the highlights were from that meeting, and I certainly was absolutely blown away at the raw emotion, and the support, and just how much I learned from being there as a provider, and how that's changed my practice, but maybe we'll start with Freeman. How would you sort of recap this most recent summit?

Charles Freeman McClusky: Absolutely. This was my third summit, or really fourth, 'cause sometimes we have mini gatherings that end up being just as meaningful. I think we called it a mini summit. But anyhow. As I've been to a few, I realize why Connor has no anxiety at all about people opening up, people sharing their feelings, and talking. They're not being just crickets in the audience because you just go to a couple, and you realize it starts out with a lot of people who've been to them before saying, "Hey, it's good to see you." Most of us haven't seen one another except online until we have one of these meetups.

But then there's always at least half of the people there who have never been there before. They're nervous. So, it's just maybe just a little quiet, the breakfast of the first meeting in a hotel conference room, and then immediately one of us can go up on the stage and just say, "Hey. I'm going to share a little bit about my story, and focus on one aspect, like mental health," and you can just say to this group of guys, "Raise your hand if you've ever laid awake in bed, miserably concerned that your cancer had returned," or something like that. And everybody's going to raise their hand, or most people will raise their hand, and it's immediately this aha moment of, "Right. Everybody here understands this in a very intimate, personal way, and this is our chance to just get to know one another more, see where our stories align, talk about some things that we have a hard time talking towith other people, like our partners or our friends, that haven't been through this."

And it just naturally unfolds. So, there's always an education piece, which these survivors just love, because a lot of them, it was all a blur. Even if they liked their surgeon or liked their oncologist, it was a blur. It's like a black hole in their memory, and they're kind of like, "What happened to me, and why did I do three cycles, but this guy did two cycles of platinum chemo? Was I supposed to get an RPLND? I didn't, but seems like everybody I'm talking to here did." And it's just like, everybody has all these questions that they've just put out of their mind 'cause they're trying to just get over everything. And this is a huge chance for us to all learn about what has gone well for people, what hasn't, and how this disease is more complicated than it might seem at the surface level.

Everything gets addressed with the education part, and then the raw emotions. People who really need to speak about their story, but have not yet really had the opportunity, or the courage, or the right moment. It is the moment, the summit is the moment to do that, and it's rare for us to have a single person who doesn't, in some way, shape, or form, open up in a group setting, and there's no pressure to do so. And then the third component is just us having some fun. That, whatever deal that Connor and our colleagues have worked out with the Four Seasons, has been really fun recently to be in Vegas, because it's like a giant playground of bells and whistles and hilarious entertainment and the gambling stuff, which is always funny to watch people do that.

So, that's naturally made it very easy 'cause you just can wander out of the lobby, and there's funny stuff going on around. But what I've heard from before I joined in Austin, Texas, those were phenomenal meetups. Colorado. We had such a fun time in Nashville. This is a group that can have fun pretty much anywhere. We were even talking about a cheap cruise, would be a hilarious thing to do, but we don't know.

Zach Klaassen: How about you, Connor? Highlights from the last patient summit.

Connor O'Leary: Yeah. Yeah. Man, there are a lot, to be honest, Dr. Klaassen. I think for me, pinpointing a few of those highlights is getting a group of 50 testicular cancer survivors in the same room and having an open dialogue and free form discussion about what problems are they facing or what are they currently going through, and how can we help? You get all of these guys that genuinely want to help and make a difference. And like I said before, a lot of these guys, to be honest, were kind of dragged there from their significant other or their mom, and they were very reserved. They were hesitant to come. And to see them open up, to see the impact and the difference that this event can have on their lives, and had on their lives, is invaluable. We really focus on making this low-key, low pressure.

Our biggest goal, to be honest, education is very important, but it's to get these guys together, to let them have a fun time, and that's why we don't do it in a hospital. We try to pick somewhere that these guys can go out afterwards or beforehand, meet up with a few of the other guys, and have organic conversations, create lasting friendships, so when they get home, if they're having a problem, they know who they can call. They know somebody that can resonate, and that can understand what they've been through. And for me, that's what it's all about. Total transparency, before my first summit, I was involved in putting this event on, and I thought, "Man. Yeah, this is cool. This should be great." And then you get there and you realize, "This is something I really needed that I didn't fully grasp."

Zach Klaassen: Yeah.

Connor O'Leary: It's amazing. It's amazing. And so, we're absolutely doing it again, kind of going back and forth on two different locations. So, we will be announcing the 2024 summit. In addition, we do quarterly meetups. So, we have meetups around the country, geographically, strategically located for guys to get together on a quarterly basis if they want, and we do some fun activities. Obviously, there's an education and kind of awareness component to that, but more importantly, it's the support, getting guys together and letting them know that they're not alone.

Zach Klaassen: Yeah. That's fantastic-

Charles Freeman McClusky: Just to add.

Zach Klaassen: Yeah. Go ahead Freeman.

Charles Freeman McClusky: I was going to add to that and just say one thing for specifics with what you're asking about, to see you speak to us in Vegas in September '23, we had a mental health speaker, and then to see that y'all's PowerPoint is still talked about by the guys on a weekly basis, they're still referring to, "When Dr. Klaassen said," and just to realize, "Gosh, we really hit it out of the park," because different people were latching on to different parts of our educational materials and still talking about it. And then to see somebody show up for the first time, didn't even know what TCF was, and now they're on the meetings each week bringing people to our Skype meet that happens weekly, that they've found on Reddit and all these other forums that I'm not on, it's truly amazing. Sorry to interrupt.

Connor O'Leary: No. And if you don't mind me adding to that real quick, Dr. Klaassen, I think it's so important for us, when we bring out speakers, we want to bring out folks that are at the top of their industry, but also people that can relate to these men. So often we hear about guys that have had poor experiences with their oncologist or some of the team that has been involved with them through this journey. And so, for them to see somebody like a Dr. Klaassen or Dr. Campbell at MD or a Dr. Einhorn, whatever, that has this perspective on the cancer and this expertise, but more importantly, you see that person as a human, and somebody that can relate to you and that can have a genuine conversation and answer your questions, is invaluable. So, there are so many components and pieces to the summit that make it great, but having folks like yourself and medical professionals that are just cool people, that have a bedside manner, is huge.

Zach Klaassen: Well, from my side, I think it's all about meeting these young folks where they're at, and I think what I really took away from that personally, is there is the raw emotion. It's the five stages of grief, right? It's the anger. It's the, "Why me?" It's the just ability to see that, and you sit in a clinic with somebody who's being diagnosed, you know they're going through that, but to see that in different stages at that summit, when I tell you, I wish every testicular cancer, whether surgeon or medical oncologist, could go to that to see that, I think it would make them a better clinician and a better testicular cancer advocate.

So, this has been a phenomenal discussion. I want to wrap it up by, is there are certain some sort of take-home messages that you can give to either patients or providers out there? This is going to be watched by both patients and providers in the whole UroToday community. And so, I'll leave it to you guys having the final say. Why don't we start with Freeman?

Charles Freeman McClusky: I would just say that not every patient needs a brotherhood, but many of your patients, or to patients listening, many of you out there, would totally benefit from getting to know us and to be a part of our group. I think I really believe that one of the best ways to deal with the hardships of life, which are going to come whether or not you get a diagnosis of testicular cancer, life is full of hard things. Being of service to one another during this journey, during this walk of life, is one of the most healing and uplifting opportunities that we can have to better ourselves as a group and as individuals, and that's what I see this group as. It is a brotherhood, a group of guys whose one thing that unites us, that is even greater than the testicular cancer, is our desire to help one another with this whole thing.

So, just by showing up, you are being a part of that mission and it's therapy on a new level. For me, I don't know how I would've been able to heal the way that I did from my testicular cancer diagnosis. And I just think that there are a lot of guys out there that just need to know about this. We're on the internet every week. Come in and introduce yourself. If you don't feel like telling your story, then we'll tell you our story, if you want to be quiet. And then just for doctors to know that we exist and to tell your testicular cancer patients about us, and their parents.

Zach Klaassen: Yep. That's fantastic. Connor, the last word from Connor.

Connor O'Leary: Yeah, yeah, absolutely. I think for me, the most important message that I could send to testicular cancer survivors is that we're here for you. We understand what you've been through. We have a community of guys that meet every week, that have a WhatsApp chat, and you don't need to go through this alone. If you have questions, if you have concerns, and you want to talk to somebody that understands that from a patient level, you can find that here. And we've got guys across the nation that would meet you face-to-face. They would hop on a Zoom call. You might feel like, "I'm this tough guy, and I don't need this," but I promise you, the majority of people would benefit from talking to somebody who's been through it. So, for me, that would be my takeaway to somebody diagnosed, or even a cancer survivor. And then, I think from the provider side, the thing that I probably get the most consistently is that, and I can tell you firsthand, I experienced this.

I was finished with my treatment. You ring the bell, and they kind of tell you you're good to go, which just isn't the case. Personally, in talking to all of these folks and these men, there are struggles with life post-cancer, whether it's neuropathy, side effects from the chemo, their mental health, intimacy problems, the list goes on and on. And so, if we can foster relationships and make connections with these guys to ensure that they have the care that they need post-treatment, it would change the game for a lot of these men and fill some of the gaps that we try to provide. So, man, I can't thank you enough for everything that you do and for being the man that you are and the doctor that you are. Freeman, you're incredible. Yeah. Thank you, guys.

Charles Freeman McClusky: No, Connor. Thank you, man. Thanks to all of you guys from UroToday as well.

Zach Klaassen: Your time has been really, really important here and this is such a phenomenal platform on UroToday, and thank you both for your honesty and just your support and what you guys do.

Connor O'Leary: Thank you, Dr. Klaassen.

Charles Freeman McClusky: Our pleasure.