My name's Harold Recard, I'm 77 years old. I was born in Pennsylvania and I migrated to Milwaukee, Wisconsin in 1968. I was originally diagnosed with an elevated PSA during, of all things, an employment physical. First time as far as I know that I'd ever had a PSA. And the doctor just picked up that my PSA was 4.7. And at that time, 4.7 was something to raise everybody's eyebrows. So I really didn't think much about it. I told my wife and she was not excited about it either, and she was in healthcare. And the doctor at that time, who I had no relationship with, he was just a doctor who was giving me a physical. He said, "Well, I think you ought to get that checked out." So I went to a urologist on a referral, and the urologist after doing an exam and whatever else, he said, well, "I think we ought to do a biopsy." He said, "I think that your prostate may be enlarged a little bit, and just with that PSA we ought to do a biopsy."
So I went back and he did a biopsy, and didn't hear anything from him for a couple days. And I was sitting with my wife in our family room and he called me and he said, "Harold, I have some pretty bad news for you." And I said, "Really?" He said, "Yeah." He said, "The results of your biopsy came back and you have a relatively aggressive form of prostate cancer." But he says, "I think that it's still encapsulated and I don't think it's spread at all." This was 1998, and so this being 2022, I've had this for 24 years and managed to survive so far.
I looked at my wife and she looked at me and we just shook our heads. I just could not believe that this was happening. So at that time, I would've been 53, 54 years old. And he said, "You have three options for your treatment," He says, "We can do radiation, we can do what they called at that time, even if they use this treatment anymore, but they can do the pellet, insert pellets, which was a modification of the overall radiation treatment. And he said, "or we can take it out." And within five minutes, Diane and I said, "Yeah, we're going to take it out because that's the operation and that will take care of it."
Okay. So I think within a month I had my prostate removed and my PSA never, ever went down to zero for whatever reason, never went down to zero. The surgeon did an excellent job. At that time there was always a question about whether he would have any ability to connect up my nerves and whatever that would allow me to resume a relationship with my wife. And he came into the recovery room while I was coming out of the anesthetic and he just whispered in my ear and he said, "We got everything." And he says, "I was able to do a good job on your nerves too." So just a wonderful feeling at that time. But he gave me one last sentence, which has proved to be prophetic. He says, "You never know about the floaters. There may be some floaters that escaped during the operation."
Never thought about it. Never thought about it after that.
(Active Surveillance) - So for about 11 years my PSA was just dawdling around. It started out at like 0.5, very, very slowly, was going up very slowly, maybe a quarter of a point a year or half a point a year, something like that. And it was nothing to really worry about until it got to, I think it was 2.7 to 3.0, something like that. That was in 2010. And at that time, my personal physician who was monitoring it for me said, "We ought to go back to that urologist and see what he thinks about this." By that time the urologist that had done the prostatectomy on me had retired, but one of his cohorts in the practice, the practice was still alive. I went to see him and he said, "Well, with this information and with your history and everything else we should go into a radiation protocol." So I went to another oncologist who was a specialist supposedly in radiation, and we set up a series of 35 treatments, five days a week, seven weeks of treatments. Toward the end, very, very difficult because radiation takes a lot out of you.
I didn't realize how much radiation really took out of you at that time, but it did. It took a lot out of me, but got through it. And I got finished with that, and the oncologist came back in about two months and he said, "Geez, I have some bad news for you." I can only stand so much bad news. But anyhow, he said, "I have some bad news for you." He said, "We didn't get it. Your PSA has only gone down nominally like one point." But he said, "That's not enough." He said, "It should be zero or close to zero, between zero and a half a point."
And I said, "What options do I have?" He said, "Well, right now, I think that you want to maybe just take a little time off." He said, "This is not going anywhere fast, but maybe you ought to take a little time off." Well, at that time, my son who lives in Columbus, Ohio, was doing some charity work and he had been in contact with somebody at the Ohio State University Cancer Center and knew him on a first name basis and just mentioned it to him and said, "Hey, can you do anything?" And I think within two weeks, three weeks, I had an appointment at Ohio State and my file was transferred down there, and they looked at it and I had a whole day with an oncologist down there who was a prostate cancer specialist.
And after the whole day, we sat down, talked about it, and his best option was, well, he said, "What we'll do is we'll watch this until it gets to a, I'm going to say a critical phase, maybe a five, six, something like that. And then we will take away all your testosterone." And I always joked with my wife. "Yeah, they're going to turn me into a woman." To which she didn't think that was a lot of funny, That wasn't that funny for her. But anyhow, she said, "Yeah, I think that's probably what's going to happen."
But he arranged for a whole bunch of tests to be done because they wanted to create a baseline of everything that we had at that time so they could track this. So I went through, again, probably five, six hours of tests, one of which was a bone scan, and I had been having some troubles with my wrists, carpal tunnel stuff. And as part of that they said, "Well, you ought to get that taken care of." So they recommended somebody that was in the Milwaukee area. And so I made an appointment with him. He said, "Yeah, I do this all the time, no problem." He said, "We'll, just set you up and get you in, but you have to have a pre-operation physical." I said, "Okay, here we go again." Pre-operation physical, which was a pretty good physical, and they took a few x-rays and I got a call from the physician's assistant that was in charge of doing that. And she said, "Something showed up on your x-ray."
I said, "What showed up in my x-ray?" She said, Actually, she says, "You have a mass in your left lung and we should really look at that and do something about it." So I went ahead and had my surgery done on my right wrist, and I was scheduled to go back and do my left wrist also, which I really never have gotten done. And they referred me to a heart and lung doctor.
And they looked at the x-rays and whatever else. He said, "Well, this looks like it's pretty cut and dry." He said, "You just have a mass in there and we've got to get it out." I said, "Are you sure this isn't prostate cancer?" He said, "Yes, I'm positive it's not prostate." I said, "Are you sure it's not prostate cancer?" He said, Yeah, I'm sure it's not prostate cancer." So I met with the surgeon and he said, the only thing we do for this is there's no reason to go in and radiate or whatever else as long as you are physically fit, we will just take out that lobe of your lung to get rid of it.
And I can't remember, the mass was maybe two or three centimeters, something like that. So I went in and had a lobectomy on my left lung. Of all things, he said, "Well, and now after this, we always recommend that you have a chemotherapy protocol set up." So I was referred to an oncologist, and this was down in Racine at Ascension, which at the time was St. Mary's, I think hospital. And that's where my personal physician was. And the oncologist was a very, very gentle and very, very nice man. And we got all set up for the chemotherapy. And it was like one of those things where you say, "There's something wrong here. There's something wrong here. There's something wrong here." Well, he looked at it after my third interview with him. Now at this point, he'd even taken me into the room and given me my chair, so to speak.
And he said, "Well, I'm not comfortable with this. I'm just not comfortable with it." He said, "I'm going to send you up to Froedtert Hospital to look at this." And I said, "Well, whatever you think." So he sent me up to Froedtert and they looked at and it came back. And they said, "Oh, well, what we need to do, and no, we don't need to do chemotherapy at this point. We'll do another round of radiation. Only this time we'll be up here on your chest." And the doctor in Racine I think said to them, "I want you to do a deep dive into this. I really do." So they somehow got the original slides and had their person look at it at Froedtert, and he came back and he said, "That's just prostate cancer."
He said, "He just metastasized and found its way up to your left lung." So he said, "I don't think radiation's what we ought to do because that means that it's in your body now. I mean, you've taken out that lump, but that means there's no reason to do radiation because we don't know where it is. We just don't know where it is." That was pretty devastating, really, really very devastating, because I didn't know of any clinical trials or anything else. I went to another oncologist at Froedtert who gave me the same story as the people at Racine who said, "Well, this is what we can do." Or I'm sorry, the same as Ohio. He said, "Geez, this is what we can do. We can take you off of testosterone and we can make you into a little girl. And 18 to 24 months from now, no more Herald." Now, they didn't say it that way but that's the way it came to my mind.
But he said, "if you want to go into a clinical trial, a friend of mine has a clinical trial going and that she might be interested in and it's a clinical trial for prostate cancer. And I said, "Man, I'll do most anything at this point." And that's when I met Dr. Kilari. And Dr. Kilari said all the right things. He said, "There's no placebo, there's no this." He said, "It has been successful in Europe. It's going to take us a clinical trial here to get it approved by the FDA. The medication has been working for a long time. Why don't you come see me?" In which I did. So that was 2000. Again, I may be off by a year, but I think it was either 2015 or 2016. With no placebo in the picture that means I was going to get the medication.
And whether the medication worked or not, it was still medication that he told me had worked or was working in Europe where it was being used, which my wife and I said, "Well, we have nothing to lose at this point." Because the other was just a two year sentence. Gee whiz we're going to keep you alive for a couple years and then we can't do anything else for you. So it was a no brainer. And I've been on Enzalutamide and a dutasteride since then. So either six years that I've been on the drugs and here I am. And my PSA is still undetectable. I'm still in a clinical trial. They've reduced the amount of medication I get, which I've fought for a whole year, and finally he said, "I'm not going to give you the pills." So at that point I said, "Sure, if you're sure, because I'd rather keep living."
And he said, "No, no, I'm sure." He said, "I've reduced almost everybody else's pills here." But I am one of the oldest surviving patients that's been in the trial bar none as far as I know because I'm number seven in the trial right now. I started out with four Enzalutamide, one ADT or my Dutasteride, and now I'm at three Enzalutamide and one Dutasteride. I don't remember exactly, but I think my PSA was somewhere in the twos. I think within three months, six months it had dropped to undetectable.
So I mean, it's like this big weight came off of my shoulders and I mean you can live your life again. You really can. I've been concentrating on this trial. It is working for me. I've talked with the pharmacist that dispenses my drugs to me on a quarterly basis. He tells me that his father has been on Enzalutamide for eight years and he is good to go. Right now he's good to go. So he doesn't know what the timeframe is where the body will find a way to get around this drug. That's the best way I can put it, because as I understand it the Enzalutamide seeks out and encapsulates the prostate cancer cells so that they can't multiply.
I have not looked back because I was always hopeful that this would work out somehow. But early on I also made the decision that if this was it, then this was it. But I was hopeful that I could hang on long enough for something to happen within the scientific community that would lengthen my life.
So I don't think I would've done anything differently. I think I made the exact right decision to have my prostate taken out. I think that that's first of all something that is quick and it doesn't involve a lot of fatigue in the long term. It doesn't screw around with your immune system. It doesn't mess around with other things that may be involved with all that radiation. So having it surgically removed was the right thing for me to do. I mean, I would recommend it to anyone who would ask me because I think that's the way to go.
Anyone who I would talk to, I would say go to Dr. Kilari. Anyone, no matter what. Even if they had an inkling that there was something wrong. Never give up hope, number one. And you got to keep fighting number two. Number three, there are going to be side effects. There are side effects to the Enzalutamide that sometimes just tend to make you wonder about whether it's worth it or not. The fatigue at times is just crushing. Huh. I sat with Dr. Kilari, I said, "Look, I just need to know so I can make the right adjustments in my head."
But is this the new normal for me? Is that what this is? Is this the new normal for me or is this going to go away? But I need to know so I can get through this, what I need to do to get through it. And we had a very, very frank discussion, and we decided that if you were living a, I don't know, 15, 16 hour day before, that's not going to happen. That's just not going to be what happens to you from now on, because you will run out of gas somewhere between 10 and 12 hours, period. You just won't be able to do that. And it's not a matter of there's anything wrong with you, it's just that that's what's keeping you alive and you got to make some compromises for that.
And some days I feel really, really great and maybe I can go 12, 13 hours. Other days I don't feel really very great and maybe I only go eight hours, but I'm here. But that's just what has to happen for your body to fight this. And I asked, not Dr. Kilari, but I asked his PA I think two times ago when I was in for my quarterly, and I said, "Just tell me, does the Enzalutamide mean that I don't have prostate cancer anymore? Or does the Enzalutamide just mean that it's killing the prostate cancer, but I'm still having all the effects of prostate cancer." And she said, "Really, you have had prostate cancer for 24 years and your body has been fighting prostate cancer for 24 years. Now, some people say, Oh my God. But I look at that as saying, Geez, that's a real accomplishment that I'm able to play with my grandchildren.
I'm able to go see people. I may not have a full day like I'd like to have before, but I have a day. And not only that, it isn't all the time. It comes and goes. In a certain extent, you can make this what you want to make it. If you decide that you want to survive and if you decide that you can put up with a little bit of incursion into your normal life to save yourself, then this is something that you ought to do.
If you can't make those kinds of adjustments, then I'm sorry. But this is something that is going to have effects on you. It has to. It has to. Because this is a disease that's trying to kill you, and your body is trying to fight it as best it can, but it needs help. And the help is in the Enzalutamide and the dutasteride. So I'm looking at saying, gee, whiz, with all the treatments and everything I've had, I have probably 15 years that I didn't really, I won't say deserve. I think I deserved every year I got, but I have 15 years that probably wouldn't have been available to me if I hadn't had all this stuff. So it's been worth it.