Hi, I'm Jeff Pawlak. I was diagnosed on October 31st, 2013 and at the time I was 61 years old. I went for a routine urology exam because I had kidney stones in the past. And my doctor had been doing PSA tests over the years because of my age, and my PSA came out to be 10.4. She did a DRE, which is a digital rectal exam, and everything felt fine. And she even said to me, I would send you home if I didn't have this high PSA because it had doubled from 4.0 over a year. She set up a biopsy for me. I went and had the biopsy and 2% of the 12 samples that they took tested positive for prostate cancer. When they looked at it, it was a Gleason 7. Okay. Yeah, that's all right. I knew what that was.
And then she referred me to an... I would call it oncology surgeon, who also works in the urology department. And we sat down, went over the options and in reality the only option was surgery. I couldn't do watching or Lupron wouldn't work, so it came down to doing a robotic prostatectomy. I took a couple of months to get a handle on that and schedule it. And because I have been married to an oncology nurse who works in the GU clinic, the same place that I was going, and I knew a lot about prostate cancer. The sad thing for me, or maybe it was even good, it was a double edged sword because I would hear stories of the good outcomes and then I'd hear stories of the not so good outcomes.
The only few questions I had was I was concerned about sexual intercourse and about leaking. I had always heard for both of those, how you are now, this is not going to improve it. I'm not going to have better function sexually or I'm not going to stop leaking if you have those kind of things.
I decided on the surgery. I had the robotic prostatectomy. Came out of that and at the end of the recovery period they did my PSA again and it was elevated. Then we went on to the next step that they had and that was, "Well Jeff, the only thing you can do now is radiation." I met with RADONC doctor, made a plan, went through all that, went through 36 treatments. Came out of that, and in between I did have Trelstar shots.
And after that a couple months went by because I had to wait for all of the Trelstar to be out of my system before they give me another shot or say it's gone, and then put me on for two years of Trelstar. I got done with the radiation that came out my PSA level was still elevated. In the meantime, I got the pathology report from my prostate tissue. I was a T2 but I had a Gleason 9. He explained to me what the Gleason 9 was, how aggressive those cells are. It was like "Okay, what are we going to do?" They put me on Trelstar. I had three six month shots and that brought it down to undetectable. In between while I was taking the Trelstar, I started looking up what it was, what the chemicals were, what they were putting in me, because I was coming in every six months for a shot. And I had done some research and I had found out that in Europe one of the first things that they recommend to gentlemen in my position was get an orchiectomy.
I read on it, I talked to the doctor, I says, "I would like you to take my testicles out. I just don't want to keep coming for these shots." They did that. Everything was fine and then they put me on by bicalutamide. So I was on bicalutamide for four years before it failed. And then I was coming in every three weeks to check it, check my PSA. Now, I'm on Erleada that you see on TV, or what is commonly known as apalutamide. And it'll be three years in December that I've been on apalutamide and my body has reacted really well to these two drugs.
The only drawback is when I started the drugs I had to come in every three months, have a PSA. I come in, make sure it's still undetectable, and you just get in this routine and it can be tiring after a while but I'm alive so that's the good thing. Where I sit right now is I'm still on apalutamide. My doctor and I have already a plan. We've had a plan all along as to what's next. She's got two different paths for me to go down next. And what that does for me is it makes it so much easier to live with.
The only time I get a little anxious is when I turn the calendar and I see that, oh it's time for another blood test and I go in and I can't forget that I have cancer because I'm taking oral chemo every day. But it's goes to the back of my mind and I live a better life but I know it's there and I know that one day unfortunately she's going to come along and probably say I can only give you morphine now after we go through everything that's out there on the market that can help me and that I can afford.
That's kind of where I'm at right now is I'm coming up on three years. It's getting close to maybe the cells figuring it out and starting to attack me in different ways. But luckily there are a couple other medications that are out there that I can go to next. The other positive thing is nothing is metastatic, so the treatments I've had, they've kept it in the prostate margins wherever. I also had genetic testing and I do have BRCA2 and that really helped me understand what was going on and I wish I would've had that information prior to being diagnosed with prostate cancer.
And the simple reason I say that is one, being married to an oncology nurse, that's a whole different world. You learn so much about all kinds of other medications. But two, my grandmother and my mom both died of pancreatic cancer. I know probably more about pancreatic cancer than I do about prostate cancer because I knew it was familial and that I had a really good chance of having it. But I didn't know my medical history from my parents or my grandparents. That was just something that wasn't talked about. Once I had the genetic testing that just explained a lot of things to me and it helped me understand why, where it came from, and that's where I'm at today.
Some of the experiences I had going on this journey, I like to tell people because the cancer clinic uses me as a resource for people that are on the fence for men that should I have this, should I have that? And the first two things they want to talk to is about sexual erections and leaking. And I usually just bring it up right to the front and say, "Let's talk. Okay? Here's what happened to me. My sexual function was fine, you have dry ejaculations... Something I didn't know about, I learned on my own, and it's been okay. And if it doesn't work, there are so many other things that I've learned about over the years that you can do all the way up to implants."
And then as far as leakage goes, I go, Well, do you have any children?" And they go, "Yeah, I have children." Do you remember when your wife did Kegels, when she was doing these exercises to strengthen up her pelvic area and her bladder?" "Well, yeah." And I go, "That's what we do. We do Kegels and we do it all... And you can even time yourself as to okay, if I do have a little leakage, how long can I hold it before I have to go to the bathroom? I started at two hours and then I've increased it since then." But those are just the things that I would not have known to ask unless someone had told me about how to do that.
And a few other things I like to share with people is I always give them a couple tips. I go, "After the robotic surgery, I had to wear a catheter for a week and this catheter is not a flexible small one, it's a big one. I go in, I have it taken out, everything's fine... And they make you sleep on your back. I go home, I go to bed that night, put my Depends on, go to sleep. I'm sleeping on my back. One, two o'clock in the morning I feel this warm liquid all over my stomach and I go what? And I went in the bathroom and I just laughed and I said, God, you got me on that one. It's not going to soak into the pad if you're on your back. You have to then switch and sleep on your stomach." You learn these little tricks as you go along.
But I will say when I went through radiation, it was tough. It was tough because you had to drink a bottle of water and then sit there and hold it. But the staff was just great. If you can be kind to these people, it's just unbelievable what they have to see and go through every day. And the more kind you are to them they respond in ways you'd never explain. They'd say, "Okay, you're going to go in the CT machine, you can't move." They made a mold for me that locked my legs in so I couldn't move. And they played jazz music for me. I like jazz music. When I got done with all my treatments, one of the girls made a tape of all those songs I like and she gave it to me and it was like, these people are just the greatest people throughout the whole process that you could ever meet.
Some of them I'm friends with that I still see. Today, there are a bunch of people that I ran into at this conference that I hadn't seen for a few years; they were with my original team. And hugs, kisses, you're still alive, you're doing great, you're looking good. And it's just so rewarding to have made all these friendships. I've never hugged so many guys like I have when I was going through radiation and there were other guys there and it wasn't like we were all in a group doing it together. It was all staggered. Some people already had 15 treatments, I had one. Some had 30, I was on number two, and you get to meet all of these people and go from there.
I really don't have much regret for what I did. Making the decision about the orchiectomy was the first time I felt that I really made the decision and I had control over my body. But I've learned that even now today, I ask questions. I'm always looking to see what is out there, what could I do more to help me and to help people that come and talk to me. I look at us as pioneers. We're the pioneers, like the wild, wild west. We're the people that are going to help our sons, our grandsons and their children with whatever we can give the information to advance a cure for prostate cancer. And I don't know if it'll be my lifetime, but maybe in a lifetime it will be cured. I mean that would be really nice because I always look at it as I've seen guys that are friends of mine, they had the surgery, everything was fine, undetectable. Six years later they're in radiation, the prostate cancer has come back and they're devastated. And part of that was they weren't prepared for that.
They didn't know. They weren't educated on that this could happen. Or maybe they just said, "Okay, I'm undetectable. See ya," went through two years of Lupron and, "Everything's fine. I don't have to worry about it anymore." But the way it works that I've learned is it can come back. It can come back and bite ya. I've always tried to be really nice to people. I listen to what they have to say. People from the clinic still call me and we discuss what they want to discuss, and like I said, it's mainly those two things, but it's your body and you should have a pad of paper and pencil laying around. You think of something, write it down. There are no stupid questions on this journey.
Things have changed so much since I was diagnosed in 2013. The MRI biopsy is one of the greatest things if you have had the regular old biopsy, and it just... they're just making such advances that I hope I live for a long time to see it. And one of my biggest inspirations out of all of this has been Jimmy Vee, and a lot of you might know Jimmy Vee. And I have his tape and I listen to his speech every couple weeks. It gives me inspiration to not give up. Don't ever give up and just keep going.
The thing I would say to anyone that is struggling with what to do is one, ask questions. Be yourself. It's your body. I did have a gentleman once that I talked to and he sent his medical records to John Hopkins, to Cleveland Clinic to Moffitt. And I just said to him, it hurt me to say it, but I said, "Sir, you have cancer." He was looking for someone to tell him that it wasn't cancer. If you accept it, embrace it, and just be yourself. If you're outgoing, okay. If you're going to have bad days, okay. The next day's going to be a better day. I pray to God. I pray to God. I thank God every day. When I wake up in the morning or if it's in the middle of the night and have to run another bathroom, which becomes a habit after a while, you don't think about it. I talk to God a lot and I thank him for my life and that I can help other people.
And all I can say is, I wish you luck. I am really more than happy when I find out that friends have gone, they've gotten tested and everything is normal, that they don't have to go through this. Find yourself someone to hold onto, like my wife. She knows so much about cancer, but she knows when to be my wife. And that has always been really important to me and it's kept me strong.