Hi, I'm Bob Hollander. I am currently 67. I spent the adult part of my life as a pulmonary critical care physician with the VA where I practiced as the clinical teacher for most of the 38 years that I was with the VA.
I was diagnosed with prostate cancer at the age 52. Well, that's when I should have been diagnosed, that's when the pathways started. So I've probably been living with this now for 15 years. A couple years after I turned 50 and I realized it was time to do those mature, adult things that men need to do once they become of a certain age, I hadn't really seen a doctor before for pretty much of anything. And I made an appointment to see my primary, got scheduled for a colonoscopy, had my first PSA checked, and it came back a little high. And not having any reference point, my primary decided to repeat it a month or two later and it came back a little higher. So it was just outside of the normal range, in the lower end, but with the two tests showing what appeared to be a trend in the wrong direction, he referred me to a urologist for biopsy.
And I had the panel of biopsies, standard trans-rectal approach, 14 biopsies. And I was told that ... Let's see, what was I told? I was told it was negative, negative for cancer, not totally normal but negative for cancer. My PSA then was about four and a half. And I did my next follow up PSA two years later. So let's see, the initial one was 2007, now it's 2009, and the followup PSA was 95. And I'll have to be honest, I was scared because, I mean, what else could it be, PSA going from basically five to 95 in two years.
And when I went back to the urologist, I expressed that concern. I was like, "Man, just take it out." I mean, what else could it be, if the biopsy again comes back negative? And at that time I was assuming that there was cancer there the first time, it was just missed, even though he did it 14 times.
But he assured me that in his skilled hands, the biopsy would be definitive. So I had another standard panel of biopsies, the trans-rectal approach. And the results were the same, no cancer, not negative, but there was no cancer. And the urologist assured me that my PSA would always be elevated and to never check it again.
It was a year later. And this one morning, I remember it was November 4th, I do remember that. I went out to my backyard to do part of my usual daily workout. I'd put a climbing rope in my backyard from a tree, the sort of thing that you had in phys-ed class or they'd had in phys-ed class. And I would do a straight leg rope climb, sit on the ground legs in a V. And this one morning I went out and as I started to pull up, I felt this strange internal tug inside my pelvis. It wasn't a pain, but it was a sensation that I'd never had before. And I was like, "what the heck is that?" Because it didn't correspond to any anatomic structures that I knew of. I knew it wasn't a muscle. It was like, "Well, that's weird." And I continued to monitor it for the next week, and it was there every time. Every time I went to do my rope climb, there was this weird feeling that just didn't belong there.
So I called my primary, went in to see him, and I said, "There's something wrong here." And the truth is, what I was feeling was so trivial. It only bothered me when I worked out. It was the sort of thing where the doctor could have said, "Well, if it bothers me when you do that, well then don't do that." But my primary was actually a friend, a colleague of mine and he knew me well through the university. And I guess he trusted my own judgment enough to believe that there was probably something going on. And he sent me for a CT, an abdominal/ pelvic CT. And that's when it showed that I had large, bulky, metastatic disease filling my pelvis with some nodal spread up at the higher aortic nodes, whereas I refer to it as the node that got away. And my PSA then was 250, so at that point it was pretty clear that I had metastatic disease. Not pretty clear, it was clear.
And then I got referred for a CT biopsy, which was an interesting experience because now this is taking place at the university right across the street from the VA Medical Center where I had spent the past dozen years. And what was interesting was that during this biopsy, I mean there were people there surrounding me that I knew, including one young interventional radiologist who had been on my team as an intern a couple years before. So the diagnosis was made by CT biopsy. And it was a Gleason 8, which is pretty an aggressive biology form.
And then I was referred back, went back to my same urologist to initiate treatment. So that was the pathway to diagnosis.
When I was diagnosed, the questions that I had were probably just the basic existential stuff. It's like, "What now? What next? What's going to happen?" And mean, I was, it's 55 [inaudible 00:07:49] then this was all happening way earlier in my life than I was ready for. I had been kind of, I don't want to say a health freak, but yeah, probably a health fitness freak ever since high school. I worked out every day, I watched my diet. Before the diagnosis, I was still within a couple pounds of my high school wrestling weight. So I was deliberately doing everything I could to maximize my longevity. And here I was now with diagnosis of metastatic prostate cancer in my mid-fifties. It was like, "This wasn't part of my agenda."
But I'll tell you something kind of funny at the same time, very early in my internship, a few months into my internship, after having spent a few months at the VA Medical Center, I rotated to the medicine wards at at UCLA where I saw a completely different patient demographic and with completely different array of medical problems. And I realized that I could break medical problems into two broad categories. The first one was lifestyle related, just bad, bad lifestyle choices, smoking and drinking, drugs. And the other category was bad luck, probably things that at some level were environmental and genetic. And I realized in that moment that if I ever got seriously ill, it was going to be bad luck. So when I was finally diagnosed, I was thinking, "Yeah, bad luck
He initiated the therapy, androgen deprivation. So quarterly shot of triptorelin, oral bicalutamide. So he initiated it. And once I realized, well, this is what I'm going to be on until it fails, I stopped seeing him. And I asked my primary to refer me to an oncologist so I wouldn't have to see that guy again. And I didn't.
So I had a great initial response to androgen deprivation, as most men do. All the bulky nodes, all the bulky disease just kind of melted away, which was great. But we all know that androgen deprivation eventually fails. The implication being that there's still some cancer cells there that are busy mutating and adapting. A total of three years of androgen deprivation and I was miserable. Misery is relevant. One of the advantages or advantages, virtues of being an inpatient physician is that the opportunity for relativism is endless. As it is for all of us if you just follow [inaudible 00:14:14] and it's like, "Well, this is bad, but things can always be worse."
But yeah, it was just unpleasant. I gained weight. Libido was just, I mean, a guy without testosterone, not sure how much of a guy they still are. I gained weight in a funky distribution. I guess there are two things that I'm most angered by the urologist. The one that initially cared for me about, one was just the whole bad advice and the other, god, I wish he had told me that the gynecomastia, the breast enlargement that you're going to get from the androgen deprivation, that can be avoided if you get a little low level radiation to your breasts before the androgen deprivation starts. I wish he had told me.
So that's one thing I would pass along to guys, if you're about to start on the androgen deprivation, ask your radioncologist if prophylactic radiation to your breasts is right for you. So that was annoying.
I don't want to say I was obsessed with my body image, but I had worked hard to stay in shape my entire life. And now I'm on this therapy, which totally messes things up. You gain weight in this funky distribution, you grow boobs, small ones and I had actually always kind of been fond of small boobs in women. I hadn't planned on having my own. That was really weird.
And then while other parts are growing, other things shrink. And even after I got off of ADT, not everything grew back, that was it. So yeah, just the whole therapy, even though it's not like the life threatening chemotherapy that I was so familiar with seeing and people are familiar with, the therapy has just an array of unpleasant side effects.
Hot flashes, about three months into my androgen deprivation, I started with hot flashes. And I got them at 60 minute intervals. So I would have 24 just drenching hot flashes a day. I had to start carrying a notebook. Actually, I still have it, I have it right here. I used to use a manila folder, but they would start falling apart, so my wife actually got binder with my initials on it. So I'd be with my team during rounds and I would start to flash and I'd be just fanning myself furiously. Sweat would roll down my chest. 24 times a day, it would wake me up every hour. So I'd be up at 60 minute intervals, five, six times a night with hot flashes.
I had to change my sleep schedule. I used to go to bed at 11. I used to go to bed at 11 and get up at four to bike to the hospital. But my sleep efficiency had become, my sleep had become so disrupted, I had to move my bedtime from 11 till eight.
And so libido disappears, the whole idea of sex becomes just totally repellent. Nothing was... Hot flashes, weight gain, your junk shrinks, your sprouts boobs. But hey, at least the cancer went away, so I had that.
After three years of that, I got to come off this androgen deprivation. It was just, from a quality of life standpoint, I just wasn't happy. So I had reviewed the literature on interruption of androgen deprivation therapy. One or two of the articles that I had looked at had come out recently, the idea of stopping antigen deprivation following the PSA, and then starting it again once the PSA starts to rise to do interrupted therapy. And what I was seeing was that interrupted therapy was inferior to continued therapy, but the advantage of continued therapy was not that much.
So the advantage of being sustained therapy only amounted to a few months. And it was like, "All right, let me be comfortable and I'll sacrifice those few months." I was good with that. The thing that was really depressing about reading these articles is that the overall survival of these men on androgen deprivation was only a couple years. And I was like, "Well that sucks."
But then looking through the methodology and who these men were, I realized that my cancer characteristics weren't the same as them. So yeah, kind of put those dark thoughts behind me and sort of figured, "Yeah, I'm just going to come off therapy and start just following my PSA closely."
So stopped androgen deprivation and would check my PSA every three to four months in a procedure that I eventually, I refer to as laboratory roulette. And that was nerveracking, especially for the first couple years. Going in, getting the blood drawn and then waiting for the email notification that you have new lab results available, and then anxiously logging in to to see what the results were.
But after a few years of that and my PSA remaining stable, I started to relax a little bit and then just started to relax. And now I get my PSA checked every four to six months. And I still refer to it as laboratory roulette, but it's not quite as nerveracking as it used to be.
And in collaboration with my oncologist, after a year, I decided to get radiated to try and sterilize the residual disease, which is the kool aid that the radiation oncologists were feeding. And I thought, "Yeah, I'll drink that Koolaid. Please go ahead, try and sterilize all that." So the guy that was head of radiation oncology was somebody that came highly regarded. And when I met him, accompanying him was one of the radiation oncology fellows who I knew. He had been an intern on my team a few years before. Just a really bright guy, he really is. Somebody who had spent a month on my team, to have to see that person three, four years later as one of his patients, it was actually kind moving for both of us. Maybe both at one point might have cried together.
Anyway, out of all that came a treatment plan for six weeks, five days a week for eight weeks, initially a total of abdominal pelvic radiation and then the last two weeks just being concentrated on the pelvis. And I'll just tell you something kind of funny about the whole five day a week thing. So years before, actually when I was a pulmonary fellow, this goes back a few decades, and I'm reading literature, reading articles about lung cancer treatment, reading about radiation therapy for lung cancer treatment, and reading the methodology sections in these articles, one of the things that I saw was phraseology like the patient received 30 doses over six weeks. And doing the simple arithmetic it was like, "All right, they got treated five times a week for six weeks." Meaning they only got treated Monday through Friday. And I thought, well how convenient for the radiation oncologist? Because we all know that cancer doesn't grow on the weekends. I kind of kept that chuckle to myself. So when my radiation started and I was also on that five day a week thing, I again chuckled to myself. But once I got started on the radiation and I saw how it made me feel, I thought, "Oh my God, thank God it's only five days a week and I have the weekends to myself for the nausea to go away and for my appetite to come back."
So yeah, it was kind of a funny process. So I don't know how much you know about the mechanics of abdominal pelvic radiation for prostate cancer. So I was always scheduled for the first session in the radiation oncology center because that way I could finish up my session and then head back to the VA, which was literally just cross the street. So I would bike to the radiation oncology center and be there for the 7:30, eight o'clock appointment. And these two young women, the oncology techs would usher me in. I'd stripped down to a robe. And positioning is critical with any sort of radiation therapy. You want to make sure that the radiation goes exactly to where it's supposed to and nowhere else. So I had had a full body cast made of me, which I laid down into and it kind of locks you into this position. I had India ink dots on my chest so I could be lined up with these little laser beams that would come down and get me into exact position.
And one of the things that was done to minimize damage to collateral tissue as they radiate your pelvis, to make sure that the colon, your bowels don't get unnecessarily exposed is they insert this tube into your rectum and they blow it up. So the balloon inflates the colon and get some of the colonic wall out of the way of the radiation beam. And I had to look forward to this every morning for eight weeks. And I would kind of run these the same corny dialogue through my mind as I assumed the position. And one of them was, assumed the position, and then rectum, damn near killed him. Thank you sir, can I have another. And the other thing I kind of played in my head was a cartoon that I had seen, it was probably years ago, which I read for the cartoons. And it was a single frame panel of cows in the barn side by side, one of them getting milked and the farmer sitting on the stool right across from the one getting milk. And the cow getting milk turns to the next to him and adjacent stall and says, "Why does he always stop after the foreplay?" Anyway, these are the things that I thought as the woman inserted this tube and blew it up.
And then you sit there for 15, 20 minutes as the machine spins around and does its thing. I had my MP3 player with a short playlist with a few songs which had resonated with me deeply ever since high school. And I;d put my headphones or earplugs on, focus on the music as the machine did its thing. Lasted about 15, 20 minutes. They disconnected me from all the stuff and then I would get dressed and bike across the street to the VA and join my team.
The first day, the very first day of radiation, it was a little challenging. I guess I got acute radiation nausea. So I was radiated at 7 30, eight. My teaching round started at nine, they went from nine to 11. And at 11:15 I was puking in one of the bathrooms. I got a prescription that afternoon for Zofran [inaudible 00:30:09] oral tablet, which worked remarkably well and I was able to go about my business after that [inaudible 00:30:25].
Anorexia, loss of appetite from the radiation was a serious thing, which was actually sort of a mixed blessing because I had gained substantial weight from the androgen deprivation. And this was in spite of me cycling like hour and a half to two hours a day. I had put on 25 pounds, which really freaked and grossed me out. So it was like, "Oh yeah, anorexia from radiation, let's lose some weight."And again, that was sort of a mixed blessing. Monday through Friday was really unpleasant and it was kind of nice on the weekends to have an appetite come back.
So I haven't had to move on to other therapy yet. I'm now 10 years off androgen deprivation with a stable PSA. So maybe I'm an anomylous fluke, or some combination of the radiation... Maybe the radiation did sterilize those few remaining cancer cells and there are none left. Because if there were, just playing off the usual cancer kinetics, one cancer cell doubling every three months and then doubling and then doubling and then doubling. I should have recurred. I should have recurred, I think. But that's another question I'm afraid to ask.
I'll add one more thing about radiation is I've had some long term side effects. I've got this predilection now for skin infections around my perineum, which is most certainly exacerbated by my cycling. Was never an issue before the radiation and happens a couple of times a year after radiation. It's not that much of a big deal, some oral antibiotics takes care of it.
But the other issue that I've had to deal with, and this first started about three, four years ago, is small bowel obstructions. So one of the potential consequences of radiation is that inflammation, low level inflammation inside the abdomen in the peritoneal cavity, which can cause fibrosis, scar tissue to build up inside the abdomen. And sometimes the scar tissue can cause a loop of bowel to get trapped causing bowel obstruction.
The first time it happened, the bowel obstruction presents with this terrible crescendo abdominal pain that comes in waves. First time it happened, it was, "What the heck is this? I've never had anything like this before in my life," these waves of crescendo pain. And I was lying in bed thinking, "What is this nonsense and why doesn't it go away?" And I'm kind of running through the differential in my mind, if I was seeing a patient in an emergency room, what would I be thinking? I'd be thinking, "Geez, this seems like a bowel obstruction." But it didn't make sense because every patient I had ever seen with bowel obstruction, every patient, and at the VA, I would see a half dozen patients a year. I'd probably seen 60, 80 patients over the course of my career, common enough, every patient had always had prior abdominal surgery with the abdominal surgery being the pathway to the scar tissue building. And I had never had abdominal surgery. So I was thinking this feels like a bowel obstruction. It's probably a bowel obstruction but I never had my abdomen [inaudible 00:35:04]."
Anyway, I went to the university... No, not the university, I didn't want to go to the university. I wanted some level of anonymity. So I went to the community hospital here in Gainesville, which turns out is staffed with a lot of the university graduates, including people I had worked with already. So in the emergency room, the physician assistant who evaluated me had been on my team a few years before. And that was kind of cool to see her again, to see her in that role, to see the sort of compassionate clinician she had developed into.
Yeah, so it was a bowel obstruction and it turned out that radiation therapy is a common enough risk factor pathway to bowel obstructions in men. So I learned something new. I've had about four or five other bouts since then, but I've dealt with them at home. And the management to a bowel obstruction is really pretty simple, nothing by mouth and then fluid metabolic support by vein until the obstruction resolves. So I'm obviously not giving myself IV therapy at home, but I would just deal with it at home hoping that it would resolve before I show the clinical signs of dehydration. So I would follow my urine output and heart rate, looking for evidence of volume depletion. And fortunately it never happened, the obstruction would resolve after six to eight hours.
Anyway, the point being is that was just one of the other complications that I'll probably continue to have as a result of the radiation. And I've been lucky so far in that each bout has so far resolved spontaneously. Maybe I'll never have another one.
Make sure you see somebody who knows what they're doing. So I thought I was in good hands going to a university medical center and I should have been by All right. So that would be my advice is to see somebody who comes with impeccable credentials, university trained, university affiliated at a teaching hospital where they're teaching the next generation of urologists and oncologists, where they're actively engaged with research. And by all indicators, I was seeing such a person at such a place.
And if at some point you receive advice that just seems to contradict your own basic sense, go see somebody else. If you're a man of a certain age and you've never seen a doctor and you've just turned 50 or so, go see your primary, your family care doctor and say, "Hey, I want my age appropriate cancer screening done." And do that and stay on top of it. This is definitely an area where ounce of painless prevention can avoid a ton of potential complications at a later time. So yeah, do that once you turn 50 and don't put it off.