My name is Henry Cornelius and I'm 55 years old. I was diagnosed August 13th, 2021 with Gleason nine PSA 42 prostate cancer. I had all 10 out of 10 cores were positive and began treatment with surgery at MD Anderson, radical prostatectomy, and began ADT. On November 10th, we started Abiraterone November 21 and then radiation, 40 treatments of IMRT here at Dana Farber in Boston. And so I'm about nine months out roughly from the treatment. My wife's also 55. We have an 11 year old daughter and it was an incidental finding. I had been actually fishing off in the Gulf of Mexico, offshore fishing, and I had a hemorrhoid. And so I went into see my doctor, my primary care physician, and he said, hey, while you're here, how about let's do some blood work? And I said, great, let's do some blood work. And he called me, he had to have been ashen faced.
He called me and he said, your PSA is 42. And he said, have you been riding bikes lately? And I said, no, I've not been riding bikes. And he said, well, this could be bad. And I want to get you back in for a repeat. And so I went back in for a repeat and it was confirmed. My PSA was over 40 and I immediately started researching and I was crying because I just thought it was a death sentence of the immediate nature. And I went to go see a regular urologist. And my hometown is in Birmingham, Alabama. And I went to go see him. And he said, yeah, this can be bad, but it might not be. And I remember being amazed. How can this not be anything but challenging? I left that fellow who I went to college with and went to UAB.
That's the teaching hospital in Birmingham, Alabama. It's the University of Alabama at Birmingham. And from there, we just went through the normal workup. We got the biopsy scheduled and when the biopsy results came in, which I've alluded to earlier, were full of a lot of delightful, challenging information. And then we began all the scans that guys in my position end up having the bone scan, CT scans of the abdomen and pelvis and chest, and an MRI as well that confirmed the big lesion and the probable seminal vesical invasion. And so that was the diagnosis.
Devastated is how I felt. Our daughter, we went through four rounds of IVF to have her, and it's just the three of us. And I knew from my reading what a challenge it was going to be. And so just destroyed. I mean, I didn't think I had that many tears, so I truly was crushed, but I'm lucky. I've been given a second chance to live an authentic, full life that a lot of people don't get. And I was lucky through my faith and my family and my friends to get to that place relatively quickly. And it really, I think, set the tone for all the hard work that was to come so devastated, but then hopeful. Yep.
I knew that with this very aggressive and I think somewhat rare as the pathology later confirmed with the lymph node involvement, but no bony or visceral metastases that I needed to get to a center of excellence. And I knew Dana Farber was an option, Memorial, Sloan, Kettering, Fred Hutchinson, out in Seattle, MD Anderson. That was a self-directed thing. And that is one piece of advice that I would encourage everybody to really focus in on self-advocacy. And so I self referred to MD Anderson and to Dana Farber. My team at UAB, who I love, they're at the center of everything. They didn't send me out there.
So how I ended up there was research and my mom had had multiple myeloma and ultimately died after surviving for 10 or 12 years. And she also went to a center of excellence. And so that informed my decision making process. Interestingly, I had appointments at both places. They were set by coincidentally on September 28th, the same day, I sent my pathology report to both. And the next day MD Anderson had me moved up to September 9th. I was telling somebody when you get a pathology, this from my biopsy, that challenging you go to the front of the line, I suppose. So that's how I ended up at MD Anderson first.
The very first thought was how long am I going to live? That was my question was how long do I have? And it that's something that continues to creep in through the course of the treatment. And it's something I would encourage people maybe not to focus so much on. I know I'm getting ahead a little bit, but that wasn't terribly productive. At first, it was necessary to inform and drive the treatment decisions, but there are no guarantees. You could die in a car wreck. I could die tomorrow across in the street. And so my very first question was, how long do I have?
Resources like UroToday, and others reading medical journal articles, talking with my wife and trying to understand the science behind the disease, what drives it, what contributes to its aggressiveness or not. And talking with all of my doctors to try to give myself the best possible chance of surviving. The single biggest piece of information that I wished I'd had at the front end was a PSMA scan, which is a molecular driven way to analyze where the cancer is. Unfortunately I haven't. And that's the single biggest regret that I have about this.
I began ADT on November 10th and then added Abiraterone on November 21st. My PSA responded precipitously and has been below the cutoff, the threshold, that sensitivity level that is thought you need to have for the PSMA scan to work. The number of treatments I've had from my diagnosis to the present day is 46. That's 40 sessions of intensity modulated radiation therapy, surgery, the biopsy, and then repeated scans of various types. My surgery was on September 21st at MD Anderson in Houston. And it was a five day trip. I went out and had all the pre-work ups, the blood analysis, what's your cardiac function, all the traditional things that one has to do to prepare for a major surgery. We were expecting a three hour procedure. It ended up going six hours. I had an extended pelvic lymph node dissection. The surgeon took 27 nodes, eight of which it later turned out were metastatic, and amazingly I was discharged the next day.
I don't say amazingly in a bad way. It was just the advance of medicine is amazing. After the discharge, I stayed in Houston for a few days to make sure that I was recovering well from the surgery and that there were no complications. I was discharged home with a urinary catheter and an abdominal drain because of the extended lymph node dissection. And that put out as much as a thousand cc's of fluid a day. I had the abdominal drain for 44 days and I had the urinary catheter for five. So after discharge and the three days in Houston, I was at home and continued walking. They had me up walking five hours after the surgery, walking around with my pole that had my IVs in. And I continued walking every day. I had a wonderful pink polka doted bag that I carried my urinary bag in.
And then I had my abdominal drain and the people in the neighborhood were complimenting me on my bag and just continued exercising every day. And the most frustrating thing was having these tubes coming out of me. Once the urinary catheter came out, which was an absolute delight, which I recommend to everybody to enjoy at one point or another. It didn't hurt when they took it out, which was awesome. Small victories like that have been amazing. The abdominal drain was frustrating, because it didn't feel like I was making any forward progress. And when you're putting out a liter of fluid a day coming out of your belly, and then I couldn't make forward progress until eventually, finally, day by day it got to the point where I could take it out. My radiation treatments began January 16th. I flew up to Boston, January 14th, got everything where I was going to live situated.
Where am I going to get my groceries from? And then that began on January 16th on a Friday. And every day I went to the Brigham and Women's or to Dana Farber. And it really was painless and not at all a hassle. The radiation therapists were great. The typical day, I just had to show up with an empty rectum and a comfortably full bladder. I love the term comfortably full, and that was so that you're trying to move the rectum and the bladder away from the radiation field. And every day came, met with my therapist, got on the table. And from beginning to end, it was no more than 15 to 20 minutes. And then I left and went to go find some good Thai food to eat. My current quarterback is Mark Pomerantz. He's a genitourinary medical oncologist at Dana Farber here in Boston.
And I had seen a video of Dr. D'Amico and Dr. Pomerantz and Dr. Kibel, a surgeon here at Dana Farber, and my wife and I, Staci and I, were struck by the hopeful tone and the positive vibes really from both of them. And I remember my wife, it was Columbus Day, she said, you should message them with your pathology report. And I did. I sent the surgical pathology report out to D'Amico and Pomerantz and D'Amico wrote me back 15 minutes later on that holiday and said please come to Boston. We want to see you. And so I met with D'Amico first. I know you asked me about my experience with Pomerantz, but that's how we got to see Pomerantz to begin with. And he was wonderful, is wonderful. Just we sat down and went through the options and we decided, we agreed, concurred with his recommendation that we try Abiraterone on top of my ADT.
And he was, and I think remains hopeful, that the radiation performed an outsized role in trying to corral the ponies, so to speak. These are my words, not his. He would probably cringe right now, but with the ADT combined with the radiation, he's hopeful, and as are we. One of the key pieces of advice that I would give to guys with prostate cancer generally in particularly advanced prostate cancer is to self advocate. And I think there's a fine line between being informed and being overwhelmed.
I knew from reading papers that Dr. D'Amico was a thought leader in this field. And I knew from your website and others about the marvelous research that he and others do. And I literally we stumbled on this video that they recorded here in 2019, and it's about an hour and 40 minutes. And it was basically about how far treatments in advanced prostate cancer have come in such a short time, but it ended with this. Dr. D'Amico wrote hope and he told a story about how his dad, when he was a young man, had given him some valuable advice. Dr. D'Amico had gone to his father with some problem. And what do I do? This is bad. This is challenging. What do I do? And Dr. D'Amico's father said, "Well, son, do me a favor, write down a couple of sentences about how you feel right now and what the problem is, and then come back in a few weeks or few months and tell me how it turned out."
And in the video, Dr. D'Amico says, You know, I've got books, stacks, and stacks. All my life I've done this. And invariably, every time it put me on the course that I needed to be on and things ended up differently and better. It nudged me to the place where I needed to be. And he said, so something, when that seems bad and a challenge at first, when you get to the other side may in fact not be. And that instantly, I mean, it was at that moment that we messaged them and it is, for my personal journey. I wouldn't trade where I am right now for anything in the world.
If I could go back and not have cancer, but be where I was at that time versus where I am now in terms of intentional living, appreciating people and my family in ways that I never really did before. And it's a shame that it required a two by four with big nails driven through it to hit me over the head to get me onto that path. So that's how I got to see Dr. D'Amico and Dr. Pomerantz. The tactical piece of advice is that PSMA scan before you begin hormonal therapy. And the other piece of advice I would give to patients is to take things minute by minute. It's such a cliche. I never appreciated like I do now.
Alabama's football coach is a guy named Nick Saban, and he's got a term called the process. And the process is essentially, don't look at the scoreboard. Play this play right now in this moment. Be where your feet are. Be in this play right now. Don't worry about the play that came behind you. Don't worry about the next one. Be in this moment right here. And so the analogy for me is life. And for guys who are diagnosed, who are greeted with this challenge of a Gleason nine advanced prostate cancer, the scoreboard is life. Don't think about whether you're going to die tomorrow. Be in this moment right now, living your best life. I learned an interesting phrase down in Costa Rica called, I'm going to mangle the pronunciation, PortAvilla. Live right now, live this moment your best life with your friends and your faith and your family and the rest will take care of itself. Self-advocacy, it's invaluable.
And through a simple resource like Euro today, and I that's just happened to be the very first one that I stumbled on. But the advice I would give to patients is you have to self advocate. To self advocate you have to be educated. And so that's what I would urge men to do and then get to a center of excellence and getting to a center of excellence, whether it's Dana Farber, MD Anderson, Sloan, Kettering, UCSF, wherever you choose, just get to a center of excellence and get to see a genitourinary oncologist. Live your life. That's all you can do in a situation like this and be grateful for everything that you have. It sounds so cliched, but the warm cup of coffee over there, hugging your wife, and petting your dog. I know that sounds goofy, but those moments, those life moments that I never appreciated before, now I'm trying to.