My name's John Burke. I'm from the Boston area. 62 years old. Just had a birthday on April the 17th, Easter Sunday. I was born on Easter Sunday as well in 1960. It was kind of a round the block journey.
Well, my prostate cancer was diagnosed. I consider myself an extremely healthy guy for my age, or even when I was young I was a healthy guy. I was always a believer in the yearly physical, and I did it yearly, religiously. I submitted to my regular yearly physical with look down my throat, look in my ears, things of that nature, and a blood test. I went on my way that day, and there was a summary sent to my home of my glucose levels, my cholesterol levels, blood pressure and things of that nature. There was a small note at the bottom that my PSA, which I'd never referred to in my life, I was 54 years old, slightly elevated. The note said, probably not an issue, but something we should keep an eye on. I would like to revisit this in 90 days.
I thought it was like anything else, you recheck it. Not even knowing what PSA level dealt with, I just thought it was just another number. My cholesterol could have been high. They wanted to arrest it before it became an issue. I waited the 90 days. I made the appointment, simple blood tests, and the original number that excited the doctor to have me recheck it was a 5.1. After 90 days, it had gone to 5.7. Once again, the number's meaningless. I just knew that that's what they were. I waited to advice from what was my primary care physician. He immediately saw that and brought me in for a consultation. We discussed what the numbers meant.
He said to me that it appeared that I had prostate cancer. My first question was, we had never even talked about it before, how did it get to where it is, with the interval between my physicals was only a year? Then I asked the question, "Well, if we're concerned about it now at 5.2, what was it last year? What was it last year?" Just like where's Jimmy Hoffa? Knowing he was never able to answer that question. Never provided me with the information. And so, what I concerned myself with was where am I now? What is going to happen? Then at that point in time, in my mind, as I look back, the thing that had the most impact on any ensuing treatment was that with every test, with every suggestion of any test, it was always greeted with speculation.
Well, the next part of the journey was we need to biopsy. One month to schedule the biopsy. You submit to the procedure, seven to 10 days for them to read it, and then another month to get the appointment to discuss it. I did a biopsy and, naturally, waited for the results of that. I was told that it was a high grade tumor in the prostate gland up deep inside. It wasn't like it was tangent on the outside, and it was in these particularly... They divided the prostate gland to quadrants. It was in quadrant five out of 12. There could be no doubt that that's what it was.
I don't scare easily, but I was certainly, "You're a doctor. I'm trusting you. I want you to just tell me the truth. Factual driven, data driven, because I've got a lot at stake here. I've worked my whole life preparing for retirement. I'm just only recently married." I wanted to make sure I made the right decision for my family. Immediately, the doctor told me of the side effects of each one of these procedures, and he said, "If you do nothing, you could die or maybe you won't. You could do a prostatectomy, but you'll live a life of incontinence, maybe. You should have no problem living like an athletic full lifestyle, maybe. Your sexual life will be full, but not always." There were many other coins with two sides.
Then he immediately said, "There is one other procedure that we could interest you in. Only take about an hour. You'll walk out better than you were before. You'll a full life and you won't even have a scar on your body. But it's not approved in the United States for medical or insurance purposes, but they are doing it in the United States and there are very, very few people who do it. There are very, very few of these machines available." I said, "Oh my God. Well, that certainly sounds favorable to what the two previous options." I said, "My wife and I, we need to talk about this, and if you could direct me to who might have this type of equipment available. We need to interview them. See if I'm a candidate for such a procedure."
And then, with the biggest smile on his face, he said, "Would you know? I just happened to have bought one, and I do have one here and it's available to you." I said, "Well, that certainly sounds like a miracle." He said, "Well, if you want to live a decent life, I think this is what you should do."
I previously mentioned that it was 2015. It was my first exposure, and now we're in 2017. My PSA rate is now over 20 and it's doesn't appear to be slowing down. We went down to Florida and we had the procedure done, and the doctor claimed that it was an utter success. Couldn't have been any better. I got a really good look. I assure you're going to be fine, and I felt fine. I wore a catheter for seven to 10 days, and I was in the gym the next day. Within hours after the HIFU surgery, I walked five miles on the beach in Sarasota. I felt on top of the world because I advocated for myself. I developed a relationship with these people and I put my trust in them, and the money was secondary at that point. I would've paid double. I would've paid double. Life went on and it was behind us.
Around July, the medical staff from the HIFU office, they suggested that 90 days had ensued, they wanted to have a look at it. How do you feel? I feel great. How's your sex life? Couldn't be any better. Like it never happened. A friend of mine and my best friend, we were friends since we were children, he said, he would laugh, he goes, "Are you sure they did anything to you?" He goes, "Because you feel great." I go, "I don't know. I was knocked out." He goes, "They might have just been fooling with you." I go, "No." I go, "I feel really good."
Then I had an MRI done in Dorchester, Massachusetts, and the results were forwarded to the doctor in Sarasota, Florida. He said, "Well, I think something has gone beyond anything I could control." I couldn't imagine what, because of all the assurity that he'd give me. But I said, "What could it possibly be?" He said that there was another high grade tumor, or maybe he even speculated that he didn't really see the first one well enough, was now lodged in my seminal vesicle and that it was significant issue.
Well, I certainly said, I said, "What happened?" Then I stopped. I said, "Well, we need to move on. We need to progress and we'll fight about that later." I said, "What are we going to do right now?" I said, "I need to come down. You need to perform another procedure to get this right this time." And then, he just said no, that it was beyond the scope of anything that he could do and that it was now time to take it to a different level. Nothing of the level of which he was able to help with. Good luck to you, and if there's anything we can do, please get ahold of us. Then, he sent me a $250 bill for the consultation on the phone and left me with that.
That was just started as a low, came to a high, and now we're back to a low again. I went back to my primary care physician and I described everything as I just have on this film. I had maybe a five or six year relationship with him and I, in a rare moment of reaching out for help, I told him, I said, "Listen, I never had a father. I don't have anyone that I can count on. I don't have an uncle or a trusted family member that we can walk. Can you help me?" Explained to him everything that had happened since I left his office last and I needed him at the moment. I was at my wits end. I had exhausted myself to get this far. Mentally, I had had enough.
I asked him if he could help me, "Could he help me?" I could see him shaking his head and I said, "Don't worry about the money." I said, "I'll pay you, just book it as if it was a medical appointment." I said, "I assure you, the money's not the issue," that I needed a lot of help. He told me that he wasn't able to help. The best he could do was offer a handshake and say, "Let me know how you do in the end. Let me know how you make out." I said, "Okay, okay." As I walked out the door, I said, "You know what? You are on your own here." I'd already been through this first chapter and I realized that, you know what? I was so emotionally driven by what was offered me but that's not going to happen again. It's serious business now. I asked for help, you're not getting it. I'm not going to hope for it. It's not coming. I needed to start advocating for myself and be more stern in my decisions. Once again, the research process started.
My wife and I, we made appointments with two separate two medical teams. One at the Beth Israel Deaconess Center in Boston and one across the street at the Dana Farber Cancer Institute. So this was within 30 days of the reoccurring bad diagnosis. So we scheduled them both for the same day. One was at 10 o'clock. One was at one o'clock.
Our first appointment dealt with a surgeon who was going to use a CyberKnife procedure. And he laid out for me exactly what he would do. He understood the circumstances that got me here. He knew if anyone knew it was him. He examined me superficially. Declared me to be a perfect candidate. He reviewed my... Because previous to this, I had had bone scans, MRIs, x-rays, blood work, because that is all what led me to the first HIFU procedure. Months and months of testing.
So he assured me that it couldn't be any better for my situation, quick turnaround, minimal scarring, back to work in 10 days, no loss of income, no loss of lifestyle. He expounded on the information that was presented to him saying that I was a Gleason score seven, perfect candidate, perfect candidate for his procedure of which he'd done hundreds. And we listened with a few pointed questions because my wife and I thought we were experts at this point in time for all we'd been through. We knew the language as much as them. So I thanked him for his time. He told me that he could have me booked for surgery and then in and out within the next two weeks. And we were both so excited that we felt he had denounced the HIFU procedure, but he could rectify it for me.
So we thanked him for his time and went outside to discuss it, because we now have some interim time before our next appointment at the Dana Farber Cancer Institute. I was also aware that one of the options was hormone replacement or chemotherapy and radiation. But they were so prohibitive because they were saying 36 months of hormonal replacement therapy and multiple rounds of radiation. So I was certainly trying to avoid that because of the long term side effects of the hormonal replacement therapy.
So immediately my emotions took over again and I wanted to opt for the CyberKnife, but we decided to just take an hour, discuss it and we would talk to the staff at the Dana Farber, which we did. We came and we met Dr. Pomerantz, Dr. Nguyen, and a host of other people who were there to answer all our questions. They had seen the data that I had presented to all these other medical staff. They were aware of the same information that each one of these other people had seen. And they asked me about my interview about the CyberKnife. And I said, I was in favor of it. And they were, in unison, each of the doctors shook their head. They were aware that I told them it was a powerful presentation and we recapped everything and the exact words that the surgeon used.
And what it was is the surgeon missed a key part of the data. And I don't know if he missed it or if he chose to ignore it. He stated my Gleason score as a seven. My wife and I are both fully aware that it was a nine. We had discussed it. And we both gave him a little bit of a mulligan because we said, well, maybe the seven looked like a nine and you just misspoke. It was that simple. That's what we told each other that he had misspoken. It was just a small error in speech because what could possibly be the difference between a seven and nine on these grand scales? I assured myself it couldn't have been that big of a deal.
And the staff at the Dana Farber showed me that it was a big deal. That was I in no way a candidate for a CyberKnife procedure. That I was a Gleason score nine. I still dismissed the virality of the nine. I said, well, the scale must go to thousands. They assured me it only went to 10 and the 10 would possibly result in loss of life. It wasn't until that point in time that I understood the severity of where I was at. This was just no longer a let's get it done. It's not like my hand was hurting and I get a procedure to fix it. Maybe it hurts. Maybe it doesn't.
And so they assured me if I followed through with that CyberKnife procedure, it would end in a shortened life. That I had really no choice to live a higher quality life or a life at all, if I didn't submit to the procedure that they outlined. And it was for the first time that they used the term that my case was, they had done the numbers and the data didn't support any of these other procedures that I had gone through or considered until I sat right in the chair right there.
So I just had to, in a really quick decision, I had to decide if my marriage would survive that, if I could survive mentally, without breaking down what the side effects of the upcoming procedure was going to be. And I had to tell myself that you can do that. You can do that. And I was in there 11 days later to start the procedure outlined by the Dana Farber, hormonal replacement therapy. And 60 days later, full on radiation, high grade radiation for 42 days straight all the while working every day.
I would go to work, work all day, drive to Dana Farber, submit to the radiation procedure, go home, go to the gym and do it all again the next day for what seemed like forever. And I just remember sometimes doing it that you leave there cold, cold, New England winters. And you'd be in a dang parking lot, six stories underneath the ground, water pouring in and just say, how much more can I take? And just like now, I'd choke it back and I'd be a new guy by the time I got to the top and just do it all again the next day.
So when the radiation starts, it's a grind. 42 is a long way from your last one. But then when you hit 35, you feel like you got it. You hit 20 you know you're coming out on top. But the first one is significant. You go through the procedure, the drinking copious amounts of water. You're so uncomfortable that I've endured all sorts of pain, mental and physical. And that's one of the things when they bring you in the room and they couldn't be any more cordial to what your needs are, but you are on this mechanical device. You have no clothes on.
And when the door shuts, that's it. You just say, how'd I get here. And it's a gut check time at that point in time. You got to tell yourself either you're going to do it or you're not. So you get the first one out of the way. You just keep counting them off till you get to one. And that's what we did. That's how we handled it. I worked every day. I trained all the time. Not because I'm better, watch me do this. I treated it as just something else to do. It would be like getting home and shoveling the driveway, because it needed to be done.
I tried to just live my life the same, but it wasn't easy because there was the physical and mental side effects that, if you succumb to those, it would probably be okay if you did, no one would blame you, but you'd regret it after that you weren't tough enough to handle it. Because what it would be is you would be giving yourself excuses for the rest of your life. I drank too much because you don't understand that cancer. I had to quit my job because I couldn't do this. Well, you know what? Or you could just look at it the other way and just say, it's just something else you had to do to live a good life.
And then after the radiation, I do have to say that and the staff is very attentive and you're monitored all the time. But because of the highs and lows of getting to where we were, I kept waiting for them to say, you did the best you could, but it just didn't work out again, just like so many times in the past. So the physicals were every 15 days then after a couple good report cards, every 30 days, couple more good there every 60 days.
So I just saw Dr. Pomerantz in January and a man of his stature and his caseload. I said, doctor, you don't even remember, I said, I'm not sure if you remember, it's just five years ago that this all started. He goes, oh, certainly I remember. And he said, it's been 25 months since your testosterone has returned to normal levels and you're still returning almost zero PSA scores. He said, so we're going to say that you're in remission. First positive news that I had had before the day I submitted to my physical five years later, five years previous. So he was kind of looking at me funny as how come you're not elated. I said, because I'm still waiting for bad news. He goes, but there will not be any.
And then, it's just like so many times before, just book your next appointment. So I left and that day and I was happy and I was in the same parking lot, in the same dark parking garage by myself the same way. And there was two ladies there that I'd never met before in my life. And I just turned on them and I said, let me tell you something. They go, what? I said, I just got a clean cancer diagnosis. Everyone started crying and I thought I'd made it. And so that might be it. That might be all I have today.
My advice, which I hope you've paid attention or were enthralled by the previous part of this film is that almost like develop yourself into two personalities. You have one here is the patient. And one person here is the person who's going to direct. Don't reach out for speculative analyses. Don't tell people that are not of this specific business, even though you're tempted to tell them because maybe you want sympathy or maybe you want people just to understand what you're enduring, but don't do it. Stick to facts, develop a relationship with ever which, whatever procedure that you decide upon and devote yourself to those people.
Devote yourself to those people and what they've laid out for you and just hope that they are in it as much as you are. And I found that. It took me all those mistakes to get that far. That's the advice I would give. I would say, stay healthy, be the best patient you can be. Don't get sedate of the mind or of the body, because then you're just succumbing. You're giving yourself an excuse. And don't think like you're going to will this out of your body. It's a medical procedure. It's a scientific procedure, needs to be done. Don't shy away from it. Confront it the same way you would if somebody were confronting you and infringing upon you ready to take something from you. Then you need to be the best opponent that you can provide. That would be my advice. That would be my best advice.