Good morning. My name is Ron Piela. I am 64 years old. I live in Hayward, Wisconsin, which is a small town, northwest portion of Wisconsin. And I am retired. I've been retired for about four years. And prior to that, I spent the vast majority of my time, 30+ years, in pharmaceutical and medical device, starting in sales. And then actually went to the business side and worked in what's called managed care, which is the liaison between pharma companies and medical device companies and the insurance companies. So, my job was to make sure products and pharmaceuticals got paid for by your insurance company. So, that's where I spent the majority of my career.

My family has a history of cancer. My father died of lung cancer at 74, my mother died of ovarian at 67, my brother died of pancreatic at 50, but no prostate that we are aware of. I had symptoms after the second COVID shot. So I had reactions to the COVID shot, and I was going through a variety of tests, a ton of different tests from different physicians to try and find out what was wrong, how to resolve these issues caused by the last COVID injection. And one of which was I got a follow-up PSA. And my PSA was at 4.1, but it had doubled in the last 18 months from two.

And so, the urologist said we really should take another look, so we did a MRI. He didn't like the way the MRI looked. That led to a biopsy. And so 12 snips later, excuse me, 16 snips later, they found out that six of them were cancerous. And that was in April 2022, when I was diagnosed at that particular time.

Well, I shared with my wife obviously, and I shared with my son. I didn't share with any other family members, although I do have two family members who are nurses, at least not in the beginning. I just started to do research. I wasn't really surprised, to be honest with you. I think it's like one-third of the people, at least in the U.S., will have some kind of cancer at some time in their life. So, I was a little surprised because we hadn't had any prostate. And I was relatively young, or thought I was relatively young. After researching now for years, there's lots of people, lots of men a lot younger than me that have it.

So, it certainly was initially... I mean I was concerned obviously, but it's prostate cancer. So having had a brother die in six months from pancreatic, having a father die in less than six months from lung, the prognosis for prostate cancer is actually very good. If you're going to get cancer, melanoma is the first and then prostate is the second, in my opinion.

The urologist was obviously the person that had done the biopsy and confirmed the diagnosis. I then went to Johns Hopkins for a second opinion. And one thing I would encourage people is get second and third opinions always. So, at that point it was really radiation versus surgery.

And the other thing people need to understand about prostate cancer, and again, this is my personal opinion, but I know a lot of people share it, urologists are primarily surgeons and they want to operate. You won't get a clear picture of radiation therapy from a urologist in my opinion. So, you need to seek out other physicians. So in my case, I sought out a radiation oncologist, and actually three of them. So, I was working with three different hospitals/centers of excellence. Two near me and I mean fairly decent size, and then the large one in the Twin Cities where I am only about two hours from the Twin Cities.

And so as a result, it came down to me, radiation was the best option. The side effects for surgery are much worse than radiation in my opinion. Radiation has come millions and millions of miles from where it was even five to 10 years ago. So, I had made the decision to do radiation. At that time I was 60 years old. And so, the only additional input that may have changed that were the scans to determine whether the cancer was held within the prostate. All three of my oncologists, all three of my urologists all had indicated, we don't see anything. There's a little graying on the MRI, but we don't see any reason why to think it shouldn't be contained within the prostate. So, they would schedule a standard bone scan and a standard pelvic CT.

At that time, I had started to do tons of research. And that's the other thing I would advise anyone in this position, whether it's prostate cancer or anything regarding your health, you need to research, research, research. The internet is a super valuable tool. You can find out tons and tons of information.

So prior to the scans, I had then found out about the PSMA. And I had to my doctors and said, "I would like to get this test." And they said, "Well, you don't need this test. You're going to have the bone scan and the pelvic scan." And I said, "But those aren't as specific as the PSMA." Now, what you have to understand is this was all in probably July 2022. The PSMA scan had only been out for less than a year. Two of my urologists had never even heard of it.

And so I said, "Here's the situation." And having been in pharmaceuticals for a number of years, I was trained to read studies. And so in addition to researching, you can find studies and you can research. And I found out that this PSMA is much, much more specific to finding specific prostate cancer. So we then began a long, somewhat long journey to add a PSMA test to my final diagnosis.

As I mentioned, I'm in a small rural community, but I do have a very large hospital system two hours away and then a very large cancer center two hours away. And then in the opposite direction, I'm two hours away from the Twin Cities. So, I had gone to all three of my teams. They're my teams, they work for me. That's their job. And I asked them. Well, two of the two nearest ones didn't offer it. There really wasn't any convincing of them because they didn't offer it.

One really didn't know very much, and I no longer included them in the team after we got to treatment. The second one, the regional cancer center, very knowledgeable doctor, he's like, "Absolutely. If you want to get it and you can get insurance to pay for it, go for it." He says, "But I don't think insurance is going to pay for it."

So, then I went down to the Twin Cities. The Twin Cities obviously is large, much larger. They had facilities that would offer it. But again, my physician there, my oncologist said, "They're not going to pay for it." And I said, "Well, I've done this for 30 years. It's what I was trained to. Give me all the information that you have, give me the scans, and I'll talk to the insurance company."

So, I actually talked to the insurance company and found out the criteria that they have. And because of this cloudy margin on the MRI, that opened the door within the criteria from the insurance company. And actually, it was a relatively easy process. It only took me less than a week to convince them, which is rare, but it fit the criteria so they really couldn't argue very much. So, my doctor was shocked. He was like floored. And so he is like, "Great, let's schedule it."

So I had the standard bone scan and the CT scan scheduled for one Friday, because I could get those done locally. And then a week later, I needed to travel to the Twin Cities to get the PSMA done. So I get the results from the first scan, bone scan and pelvic scan, and they're fine. They show nothing. My oncologist is like, "This is fantastic. This is what we anticipate. It's within the prostate." I've got 90% chance of cure. Things are looking good.

A week later I go get the PSMA. And one good or bad thing about modern technology is I get the results before my doctor does because I go online, I have online accounts. So 24 hours after the PSMA scan, I pull up my results and I have five lymph nodes that are blaring white that show cancerous cells outside, not only outside the prostate, but actually within the pelvic area. So, it's not even regionalized. It's not local, as they would call it. It's regional, depending on who you talk to. Obviously, very bad news.

I talked to my oncologist, talked to two of the teams, and I immediately go from a stage 2, 90% curable prostate cancer to a stage 4. And at that point, I didn't know if it was A or B, I didn't know A versus B, but it was a stage 4, which obviously stage 4 is not... You don't want to have cancer, you don't want to have stage 4. So, that was a tough week. That was a tough week. So that then changed the entire treatment plan. 100% everything was out the door and we started from scratch.

PSMA, it's a piece of cake. I mean there's nothing... It is just like an MRI. I mean, I had no issues with radiation, I just didn't have any issues with it. I researched it. It's a very safe test. You wouldn't know the difference between an MRI. It's the same situation. I didn't have any issues at all. No concerns. It's very easy, in and out. I can't remember how long it took. Might've been 45 minutes start to finish. The best analogy is just like an MRI.

My Gleason score is only seven. So initially, the biopsies showed there was only six of 16 biopsy snips that were, so a low number. And of those six out of the 16, the vast majority were three plus four. Now, when I sent those out to Johns Hopkins, I got a little different. They went four plus three for the majority, which kind of moved me from stage two to stage three, but it was still Gleason seven. And again, I had a very low PSA and I had no symptoms, none. So all of those factor into the doctors and their defense saying that it's not going to be an issue, it's within the prostate, we don't see any metastatic spread.

And so once I was diagnosed with metastatic stage 4, I then was educated by my physician about 4A versus 4B, which to me is a huge distinction, and for most people it should be. So 4A means that it's stage 4, it's metastatic, it's outside your prostate, but it has only gone to lymph nodes. 4B is it's going to lymph nodes, organs like liver, spleen, and bones. So 4B is the worst you can get. That's when you're going to have to end up getting chemo at least or other various... You have to treat the most aggressively with 4B. I luckily, was 4A. And the other advantage of the PSMA test is it shows the size of the tumor.

Now, it was never 100% confirmed that those five spots that lit up were cancerous, but it really didn't matter because it took treatment. In terms of your question about treatment, it took surgery off the table 100%, even though I wasn't going to have surgery. Surgery, it was off the table, 'cause there's no way they could go and get those lymph nodes. They're just too small. So my doctor had said, "They're really small. You were going to do radiation anyway." 'Cause I looked at brachytherapy as well and decided against that. And so went, it's known by different names, but standard direct beam radiation. So, I went for 25 treatments. So every day, Monday through Friday, I'd drive an hour and a half and went for, excuse me, 28 treatments, five and a half weeks.

And then after that, I immediately started on what was supposed to be three years of the beloved... Hormone treatment, depending on what name you know it by. Started out on Lupron injections, ended up going to, excuse me, Eligard, which is a form of Lupron. And then ended up switching to Orgovyx, a pill version after one year. So the treatment went from simple radiation or surgery, to now a minimum of radiation plus three years of hormone therapy. Which for those that know, basically my testosterone went from 600 something to seven in less than six months.

So at that point, I shared it with the rest of my family. I come from a fairly large family. And two of my older brothers had already passed away, but my brother who's nearest to be four years older, he actually went and got his PSA checked. And he actually has since, they found some cancer cells and he actually had surgery, but they found it within the prostate. So, it helped him. My brother-in-law was in a similar situation.

So it certainly is when you find out it's metastatic, that's a huge blow. I mean, psychologically, emotionally, my wife was very upset, my son was very upset. But I've learned a long time ago, it is what it is. There's certain things you can change, there's certain things you can't change. I can't change it, there's nothing I can do. There's nothing I could have done, there's nothing I can do. It is what it is, so I'm going to deal with it and I'm going to deal with it in the most positive fashion that I can. And I'm going to research and research and research.

And I'd find tons of studies and I would take studies to my doctor, my radiation oncologist, and he would sit at our meetings, and he would explain. I would send them to him and he was just fantastic. And he'd say, "Yes, this is applicable. No, this isn't applicable." And then we talk about the studies that showed positive results. And he was very positive. Which is the other thing, if you don't have a doctor that's positive, get a new doctor.

It was difficult, but it is what it is. Having had other family members die so quickly from cancer, and even as metastatic, we're still looking at a fairly high survival rate for the next four to five years. But it changed things. We changed our lifestyle. We had traditionally saved a lot of money. We've been very fortunate. We started spending more money, we started giving more money away. We started buying less stuff and doing more experiences, more vacations, which took a little bit different outlook on life. Not huge because we did a lot of that before, but it definitely, it made you think. I mean, so my new target was, it changed the way I was going to take social security, changed a lot of things. I mean, I was diagnosed at 60. My goal is right now to live to 75.

Radiation wise, I know some people have side effects with it. I didn't have any side effects with radiation. I had three young gals that took care of me. I would go up there, it was an hour and a half drive, it was a 15-minute process. People at the cancer center were fantastic. I just didn't have any issues with that.

The hormone therapy replacement, that's another matter. I guess I wouldn't wish that on anyone, any man. I understand what hot flashes are now. So, it takes your testosterone. Like I said, mine went down to seven. So you lose muscle mass, you have very low energy, you're fatigued, you can get significant weight gain. Those are primarily the major symptoms of, side effects that you're going to have of hormone therapy. And it's difficult, it's very difficult.

When you go from 600 plus testosterone to seven there are significant changes, significant, you lose enthusiasm, you lose... Sex life is a whole different matter. It's just a very difficult situation. I had high cholesterol already, so I was on some cholesterol meds. I have high blood pressure as well, so I was on high blood pressure meds. So primarily what we did in the advice of my oncologist was, I worked out, I lifted weights at least three to four times a week.

And exercise as much as you can, but the weightlifting, because you'll lose muscle mass. I mean, you're going to lose muscle mass. You're going to gain weight, but you're going to lose muscle mass. And I could just see it in my arms and my shoulders. I grew up on a dairy farm and I'm not a huge guy, but I'm fairly muscular. I could just see it. I could just see me losing muscle mass. So working out, lifting weights, your doctor should tell you all of this.

There's a lot of online discussion about diet, and I'm not going to comment on that. I really haven't changed my diet a lot. I don't eat a lot of processed foods, but we like to eat wild game and we like to eat meat. And people can do what they want with the diet portion. But for me, it was physical exercise, weight lifting, and just trying to keep busy.

And then also, I incorporated an afternoon nap. I'd get tired. I'd never took naps in my life. Like I said, I grew up on a farm. I'm used to working, working a lot, but I'd take a two-hour nap in the afternoon. And for the first little while, I kind of felt guilty about it. And then I thought, "The heck with it. I'm just going to take a nap." So, I'd take a two-hour nap, and that would help. And since I'm retired, I can do that. And my wife is retired as well. And those are really the things that I did that helped me deal with the side effects.

I'm a big football fan and I think the quarterback analogy is good for folks. Again, it really helped me to be in the medical field from my career. And when you're dealing with a complex issue like cancer, you're going to be seeing multiple specialists from different, not only from different locations, but even within the same location. But you might have a urologist, then you might have an oncologist. And you would think that as a patient, you would think that they talk and coordinate, but that's not necessarily the case. And you can't assume that, let alone if you have another... If you're getting a second opinion from a different office or a different location, doctors don't... They have hundreds and hundreds of cases. They just don't talk to each other. And even those electronic medical records, they don't always do the best job of keeping up.

So my quarterback analogy is, you have to take charge of your care. You have to be the person that knows everything, and you have to make sure that all your physicians, regardless of specialty or location, are all in the same loop. So you need to make sure they understand what all the other physicians are doing, what the other physicians have told you.

If you go to doctor's appointments, I would strongly encourage you to tape record them. If the doctor won't let you do that, find a different doctor. Tape record them, take someone with you if you can. And then when you go see, let's say you saw your oncologist, and then you go back to see a urologist, take notes with you and talk to that urologist about what your oncologist told you. Don't assume that urologist knows what the oncologist told you, because a lot of times they don't.

So, you have to be the quarterback. You have to direct your teams, your physicians. They work for you. You have to direct them to make sure they understand everything that's going on so they can make the proper decisions within your care. Do not think that the doctor's going to do everything. He's going to go home to his kids at the end of the day, his wife and kids. You get to go home to your wife and kids at the end of the day. Trust me, he's got dozens and dozens and dozens of patients. And as much as they want to try and do a great job, they're really stressed in terms of workload as well. So, you got to coordinate. You got to be the quarterback. Everybody should report to you, and you should make sure you report out to everybody else.

Even though I have stage 4 cancer, I was very, very lucky. Because if I had not pushed for a PSMA, I would've ended up in this 10 to 20% camp of... And I think it's even higher after I talk to more people. Men would get diagnosed, they'd have a regular pelvic scan and a bone scan. It would show nothing. Doctor would either radiate the prostate or they'd cut it out.

And then three to four months later, the PSA would start going back up. And they'd find out that, well, normally it was surgery because the vast majority of men, particularly the younger, have surgery. That's because urologists recommend that, but then they would have to come back and do salvage radiation. And the reason they did was because it was outside the prostate, and they didn't know that because they just assumed that it was within based on the bone scan and the pelvic scan.

So I was lucky because I would've had, even if I had a radiation, they would've only radiated the prostate. They radiated my entire pelvic area. They would never have done that. And they targeted those five lymph nodes. They would never have done that without the PSMA scan. So now, I mean, this was back in middle of 2022. My doctor told me that they actually used my case in one of their conferences in Wisconsin and Minnesota. Apparently they had big conferences for oncologists. They used my case because it was one of the first cases where PSMA really changed the treatment plan.

And now, PSMA is a standard of care. So if I were diagnosed today, I would just tell my doctor, "I don't even want a bone scan or any kind of pelvic scan. I don't need them, I don't want them. All I want is a PSMA." You don't need all three. Insurance company doesn't need to pay for all three. PSMA is a standard of care now. And that's coming from my... It's my opinion, but my physicians have told me the same thing.

There's a lot of people out there that have cancer, there's a lot of men that have prostate cancer. I guess just research, research, research. Talk to people. Guys sometimes don't want to talk about those things. I understand that. Just kind of the male thing. Don't be afraid to ask questions. Talk, get online. You can do it anonymously. Get online, read, read, read. Research, talk to as many people as possible.

And everyone says that you got to stay positive, but you really do. I mean, if you're diagnosed with cancer, you have cancer. To me, you have one of two choices. You can either go, "Oh, woe is me and we'll mope around and okay, and then I'm going to die," blah, blah, blah. Or you can say, "All right, well, there's nothing I can do about it now, but what am I going to do in the future? What's the plan? Who am I going to get to help me? How am I going to do it? What's my best case? What's the best strategy? What can I do?"

Personally, I would opt for the latter to me. But that to me is the stay positive part. Just make an action plan, get people to help you. There's tons of support out there. Tons of groups, tons of organizations like yours, other organizations, your physician teams. Just get people to help you, don't try and do it yourself, and pick the best path and pray for the best results.

This interview was produced with the generous support of Blue Earth Diagnostics