I'm Tom Hulsey. I was diagnosed with prostate cancer on my birthday in 2015. I was 61 years old, and it was a complete shock to me. I lost my grandfather to prostate cancer, so obviously, it was in the family. That really kind of prompted me to keep my annual checkups and all.
I was filled with so many emotions when I heard those words because I never expected it. I was angry. I was embarrassed. I was scared. Most of all though, I felt like a fraud because I had always been viewed as a very fit and healthy, and lived healthy lifestyle. That's the way people looked at me, and so it was very embarrassing. At the same time, I did not share my story at the time. A lot of lessons learned in my journey, but one thing I did not do, it took me over a year before I told anybody about my diagnosis, and it nearly did me in.
A lot of lessons learned from my journey. One of them is that you should talk about it and seek a support group, and I did not do that. I kept the emotions bottled up. I was very isolated. I was incredibly depressed, and I had mentally checked out, but I was able to turn things around. Now I have become a big advocate for men's health issues, specifically prostate cancer.
Well, I had always been very proactive with my health and getting checked. I had my annual PSA and DRE, digital rectal exam, every year, and everything was fine, but I had a great benchmark. Went in for my test in 2014, and my PSA was elevated, but at the time, my urologist said, "Don't worry about it. You just have an infection in your body, but let's check it again in six months."
I went back in six months and my PSA was elevated even more. He said, "Okay, let's come back in three months." I went back in three months, and it was elevated again. He said, All right, well we need to... Since the PSA is not an absolute, it's just a guide, but something could be wrong. Let's go ahead and do a biopsy."
At the time, cancer was the furthest thing from my mind. I just didn't think there was any way that I could be diagnosed with cancer. I mean, I felt like I was Superman at the time, so it was a complete shock when I heard the words again, on my birthday, that I had prostate cancer. I was just so overwhelmed with so many emotions.
Compounding my angst was the fact I had just witnessed my best friend lose his four year battle to prostate cancer. That was absolutely gut wrenching to witness what he went through. At the time, I did not want to go through what he went through. It was a very tough, isolating time. Any kind of medical diagnosis can be overwhelming, and it definitely overwhelmed me at that time.
I was Stage 2, Gleason score of 7. From that point, even though I was suffering, I still did my research. I did a lot of due diligence on the different options available to me because one of the advantages of having the prostate cancer caught early is you have more options available to you. I did end up having a robotic prostatectomy. The reason that I did that was at the time, I just wanted the cancer out of my body. What really made me go to make that decision was after witnessing what my best friend went through. I did not want to go through what he went through. Since it was early stage, the cancer was contained within the prostate. That's the direction I went.
At the time I was... Well, I was going to beat it, and I actually was physically ready for the surgery. Maybe not mentally yet, but physically, I was ready for it because I was very physically active and I trained. I was getting ready for to do an Iron Man, which is what I had been doing, prior to my diagnosis. I was very fit, but I trained for it because I knew the recovery was going to be rough. But again, physically, I was good, but mentally I still was not there. That kind of comes later.
I did confide in a couple people about my diagnosis and one of my friends, good friends that I confided in, knew that I was an Ironman competitor. He said, "You need to remember the motto of the Ironman, which is anything is possible, and you need to set goals for yourself to get beyond these dark days that you're in right now." It was really at that time when I really shifted my mindset. I started setting goals for myself to get beyond these dark days. My long term goals were one, I wanted to be around to walk my daughter down the aisle. Number two, I wanted to be able to get to the start line of another Ironman. 17 months after my prostatectomy, I achieved both those goals.
For me, it involved really changing my mindset from realizing that I still had control, and changing that mindset was so important for me. Just getting to the operating table required that change and mindset for me because as I mentioned earlier, I was ready to give up, but I had motivation out there. To me, it's all about setting goals and focus on going forward, which is what a growth mindset is all about, is it's focusing on the positive, and visualizing what it is like to be out there. I'm not advocating you have to go out and do an Ironman or anything, but setting small goals and maybe just getting off the couch and walking around the block. I mean, everybody's different, but you've got to set goals, and knowing that you're going to get through these dark days.
After that, I actually turned my focus toward advocacy and helping other men. I wanted to pay it forward, and I wanted to be able to share my lived experiences to give other men hope and inspiration. In fact, part of my motivation was my wife encouraged me to write a blog about my journey because I had kept everything bottled up. I wrote a blog, and the first response came back from a gentleman in New Zealand. I had given him hope and inspiration. Then more and more responses were coming in. But at the time, I wasn't trying to change the world, but for me to write about it was just so in incredibly therapeutic.
The sexual function, the incontinence, and number three, and one that a lot of people don't like to talk about is depression. I suffer from all three of those. Again, I call it the new normal, if you will now. I've accepted that. It was through the incredible support I received from my wife through all this that really, really got me through.
After the surgery, of course the recovery, itself, was rough, but I was physically prepared, and I eventually became mentally prepared with that shift in mindset that I mentioned. Again, by then my focus was on helping others. To quote Jackie Robinson, "A life is not important except in the impact it has on other lives." I've taken that quote really to heart. That's really what I'm doing with my life now.
I've had three life threatening illnesses in my life, prostate cancer being one of them, and they have given me a wonderful perspective on life. There's nothing more gratifying in life than making a positive difference in other people's lives. That's really what I've dedicated myself to, by giving people hope and inspiration by sharing my lived experiences.
I was very diligent in doing my research on the different options. Again, I interviewed specialists for different types of treatments, whether it be radiation, the prostatectomy, seeds and everything.I was very well versed. I like to say that an educated patient is a smart patient, but the one thing that I had regrets about, or something that bothered me though is these different specialists I interviewed though were advocating for their own specific treatment rather than what was best for Tom.
Again though, I was driven by the fact of what I'd witnessed with my friend and why I went with the treatment I did. One option that I was not aware of, and I understand that a lot of men are not aware of it, are clinical trials. I would like to have been made aware of clinical trials and what is a possible course of action, looking at the side effects and all. I was a typical patient. I was not aware of what a clinical trial was. I couldn't have told you what that meant, back when I was originally diagnosed, but I have learned so much about the benefits of a clinical trial. Compared to standard of care, you get a lot more attention, if you will. The care is taught top notch, and so just a lot of advantages. One of the things I have that learned through what my experience is that men who have gone through clinical trials typically are very well versed on their diagnosis and the options available, and typically have a higher level of a successful outcome, if you will.
For newly diagnosed, ask questions. Ask a lot of questions, understand what your risk factor is, understand the options, understand the side effects with the different options. Am I going to be hospitalized? Is it going to affect my quality of life? Activities that I currently perform, can I continue to do that? I always encouraged men, especially newly diagnosed, to check out reputable resources like the ZERO website. It's a great resource, whether you're newly diagnosed or you're evaluating different treatments.
One big difference though, small but big difference between my friend Bill and myself when it came to detection, as I mentioned earlier, I was on top of the PSA and getting it checked every year. Bill skipped a year in getting his PSA checked, and his widow will tell you today, that's what ultimately killed him because it had spread outside of the prostate. So again, just being diligent. I'm not really sure I could have done anything different.
Men typically don't like to talk about it, especially with health issues, and especially a health issue that's below the belt, if you will. Don't keep those emotions bottled up inside. Seek help. Seek a support group. Secondly, again, a cancer diagnosis is so overwhelming and can be very isolating. Don't let yourself go down that path. Get your regular annual checkups. Don't skip them. If you're aware of something, think something is wrong with your body, get it checked and get a second opinion.
The thing about prostate cancer, and I liken this to heart disease, which I've experienced, in the early stages, is typically what I call a silent killer, because there typically aren't symptoms in the early stages. When you do start exhibiting symptoms at all, it's probably progress to a later stage, so your options are more limited. I would definitely recommend, again, listening to your body. You've got to be your own best health advocate and be proactive.
I've met so many men over the last few years that have suffered, if you will, in silence and all. Just to give you a quick example, I was seeing another doctor for something else and after we were done with my appointment, he closed the door and shared with me, said, "I've been fighting prostate cancer, but I don't want any of my patients or even my staff to know that I have prostate cancer, because it would ruin my business." There's a stigma out there when it comes to prostate cancer, but I hear stories similar to that.
It is something that many men will experience in their life, but you've got to have, I think, have the conversation, whether it be with in a support group or with someone else that you know that has been through it. Again, it all goes back to that just being isolated and all, but you've got to open up about it. There's so many men are scared of... Many of them would rather die than have go through prostate cancer. I mean, that's their manhood you're talking about.
You got to be proactive with your own health and get checked. I will say that I'm a seven year prostate cancer survivor, and I owe those seven years to early detection.