Dr. Zachary Klaassen:
Hi, I'm Zach Klaassen, a Urologic Oncologist at the Georgia Cancer Center in Augusta, Georgia. We are live, filming at the 2024 American Urological Association Annual Meeting in San Antonio, Texas. I'm delighted to be joined today by prostate cancer patient advocate, Tom Hulsey. Tom, thanks so much for joining us today.
Tom Hulsey:
Glad to be here. Dr. Klaassen.
Dr. Zachary Klaassen:
So we're going to talk about advocacy, and you have a wealth of experience. We joked offline, we could probably put a 30 to 60-minute conversation together. But tell us about your journey. You were diagnosed in 2015. How did that affect you? Who was important in your support group as you went through your prostate cancer journey?
Tom Hulsey:
Well, I heard the words you never want to hear on my birthday in 2015, that I had prostate cancer. And it was a gut punch. There were so many emotions for me because I had always been viewed as being very fit and healthy.
Dr. Zachary Klaassen:
Sure.
Tom Hulsey:
I took care of myself, very proactive.
Dr. Zachary Klaassen:
Yeah.
Tom Hulsey:
Which is part of my story too about being proactive. But for me emotionally though, it was very, very tough. Part of what compounded my anxiety is I had witnessed my best friend lose his life to prostate cancer just the year before.
Dr. Zachary Klaassen:
Wow.
Tom Hulsey:
And so, for me mentally, I was in a pretty dark spot back then. But I eventually overcame that. I changed my mindset and my outlook. But again, there were some pretty dark days there. And I was a typical guy too, in that I did not want to talk about it.
Dr. Zachary Klaassen:
Sure.
Tom Hulsey:
And a lesson learned for me through all that. But I did not share my journey with anyone for over a year.
Dr. Zachary Klaassen:
Yeah.
Tom Hulsey:
And so, I took my journey alone, which was a mistake I made. But it was something that I went through on my own. And I know a lot of men do, and that's really why I'm here today to...
Dr. Zachary Klaassen:
So at that one-year point, who did you engage with after you changed your mindset, as you mentioned. Who was sort of core to your team after that point?
Tom Hulsey:
I confided in a close friend who had overcome his own health challenges, and he knew of my doing the Ironman.
Dr. Zachary Klaassen:
Sure.
Tom Hulsey:
And the motto of the Ironman is, "Anything is possible."
Dr. Zachary Klaassen:
Okay.
Tom Hulsey:
And he took me by the shoulder and said, "Tom, you need to remember the motto of the Ironman, "Anything is possible," and set goals for yourself to get beyond these dark days. And quit feeling sorry for yourself."
Dr. Zachary Klaassen:
Sure.
Tom Hulsey:
And it was really at that point when I changed my mindset really from, "Poor, pitiful me," a fixed mindset, to more of a growth or what I call a winning mindset.
Dr. Zachary Klaassen:
Yeah. That's excellent. I want to talk a little bit about cardiovascular risk factors. You mentioned in your book, which we'll talk about as well, you had some cardiovascular events after your prostate diagnosis. Maybe not related, but nonetheless an important topic. The number one cause of mortality in the United States among men is still cardiovascular disease. And what people don't often know is that even among localized prostate cancer men, cardiovascular disease is still the number one cause of mortality. So just talk about your overall fitness, your health, you talked about Ironman, and what the importance of cardiovascular awareness is as well.
Tom Hulsey:
I think that cardiovascular fitness and awareness is paramount. I wouldn't be sitting here right now if it wasn't for the fact that I took my fitness and all very seriously, including leading up to my prostate cancer diagnosis. And post-prostate cancer, I was always very proactive. And that helped me in my prostate cancer recovery was being physically fit.
Dr. Zachary Klaassen:
So I want to talk about your book, The Winning Mindset That Saved My Life. You wrote the second edition during the pandemic. What sort of take-home points from this book can you share with our listeners?
Tom Hulsey:
One of the first things I did after I decided to make people aware of my prostate cancer journey was I wrote a blog.
Dr. Zachary Klaassen:
Yeah.
Tom Hulsey:
And it positively impacted so many men. The first response I got back from that blog was from a gentleman in New Zealand. I had given him hope and inspiration. And after writing several blogs, several people said, "You ought to share your story because it's so inspirational, and you ought to write a book." But at first I was skeptical. I was not an author, but I thought, "Well, if I can write a book and positively impact one person with my story, then that's really my definition of success." And that's what really motivated me. And I was doing this too in the memory of my great friend who lost his life to prostate cancer.
Dr. Zachary Klaassen:
Sure.
Tom Hulsey:
Because I don't want other men and their families to go through what he went through. But the story is built around my Ironman journey, because the Ironman has been my attribute for so many things including overcoming fear, determination, overcoming physical and mental obstacles. And so again, that was really my motivation to really share my story and to give hope and inspiration to other men and their families.
Dr. Zachary Klaassen:
That's fantastic. And I was looking at your website. I love the quote on this is, "Making a positive impact on humankind," which I think sums up, it sounds like your journey over the last 10 years. But has this always been sort of your motto? Or was it really sort of shaped and really sort of come to light based on your prostate cancer diagnosis?
Tom Hulsey:
It came to light based on the prostate cancer. I kept things to myself prior to my prostate cancer. But having prostate cancer, it really gave me a purpose and a passion. And as I mentioned earlier, it's all about helping other men and their families.
Dr. Zachary Klaassen:
Yeah.
Tom Hulsey:
And I want to make a difference in the world with my story, both with my cancer and my cardiovascular issues. Again, a lot of lessons learned there for me.
Dr. Zachary Klaassen:
Absolutely.
Tom Hulsey:
And I compare how getting ready for an Ironman and doing an Ironman is very similar to getting ready, say, for prostate cancer surgery or treatment.
Dr. Zachary Klaassen:
Yeah. That's great. I think when we look at all the stuff you've done, you've been involved in multiple organizations, lots of volunteerism, Prostate Cancer Foundation, reviewer over the CDRMP Grant process, just to name a few. What are some of the highlights of this aspect of your life since your prostate cancer diagnosis?
Tom Hulsey:
Well, as you mentioned, I've been part of the Prostate Cancer Research Program as a Peer Reviewer. And that was probably the most empowering thing I've ever done, because it really gave a voice to cancer patients. And it really was making a difference, because as a panel member, I had full voting rights. And so, my vote got counted every bit as everyone else's around the table.
Dr. Zachary Klaassen:
Yep.
Tom Hulsey:
But on the other hand, I've also done a lot of advocacy advocating for funding for the Prostate Cancer Research Program. And those two things go hand-in-hand.
Dr. Zachary Klaassen:
Sure.
Tom Hulsey:
You can't have one without the other. So I've been very gratified by what both my advocacy has done along with being the voice there with the Prostate Cancer Research Program.
Dr. Zachary Klaassen:
Yeah. That's great. I know you were very generous our time a couple years ago when we launched our Prostate Cancer Patient Voices website. You gave your story there. Any follow-up from what you said in that conversation? Have you had feedback on people watching that video? What's the impact of that been?
Tom Hulsey:
It really is the name. It's so aptly named, Patient Voices. And I've referred so many men to that website that are just starting their journey with prostate cancer. It's really a wealth of knowledge out there for them, a really good place. I wish I had had something like that when I was going through my prostate cancer journey.
Dr. Zachary Klaassen:
Yeah. I do the same thing in the clinic. I send all my patients there as well, because it really is... People want to hear from people like yourself.
Tom Hulsey:
Yeah.
Dr. Zachary Klaassen:
They listen to me, but they want to hear from you. And there's a lot of good literature there as well from the patient level, what's a Gleason Score? What is a PSA? And it really is an all-encompassing site directed at the patient.
Tom Hulsey:
And I think that's so important, because so many times doctors I think get wrapped up on treating the disease and forget there's a person back there-
Dr. Zachary Klaassen:
That's right.
Tom Hulsey:
... with psychological and social needs and everything.
Dr. Zachary Klaassen:
Sure.
Tom Hulsey:
And I always say that prostate cancer is more than just cancer of the prostate. It's cancer of relationships, your job, and just everything else in your life, and your self-esteem.
Dr. Zachary Klaassen:
Yeah.
Tom Hulsey:
And I've been there, so hopefully I'm making a difference.
Dr. Zachary Klaassen:
Yeah. That's well-said. It's been a great conversation. I'd love for you to wrap up with maybe a couple of take-home messages for our patients and maybe several for our providers as well that are listening.
Tom Hulsey:
For patients, I would say it's very important to have a support group around you.
Dr. Zachary Klaassen:
Yeah.
Tom Hulsey:
This is, again, one of my lessons learned, but you've got to talk to people about it. Because the diagnosis of prostate cancer, any cancer can be so overwhelming and isolating. And I was there. And again, you've got to talk about it. The power of prostate cancer patient voices, is an educated patient is an empowered patient. And that's so important so you can be proactive and understand the journey you're about to embark on. For doctors, I think the space has really evolved to more patient-centric now. And you've got to, again, as I mentioned earlier, look at the patient more than just as treating that specific disease.
Dr. Zachary Klaassen:
Yeah.
Tom Hulsey:
But again, looking at the whole mind, body, and spirit, if you will.
Dr. Zachary Klaassen:
Yeah. That's excellent. Tom, thanks so much for your time, for all that you do for advocacy, and we really enjoyed this conversation.
Tom Hulsey:
Thank you, Dr. Klaassen.
Dr. Zachary Klaassen:
Thanks.