I've been getting annual physicals for about the last 4 years, starting when I was 52. On my previous visits, blood tests showed a PSA of 3.4-3.6, but my primary care physician and I decided that since the PSA was stable, and that a DRE did not indicate anything abnormal, we would watch and wait. On my last annual physical in August of 2007 however, the PSA had jumped to 5.0 and my doctor suggested that I make an appointment with a urologist. I scheduled an appointment with a urologist he recommended, but had to wait until mid September to get in.
Meanwhile I began reading everything I could find on PSA testing, prostate cancer, treatments and anything else related. Consequently, I felt relatively informed when I finally got in to see the urologist. At the appointment he reviewed my medical history, and after a brief examination, advised a biopsy. With a PSA of 5.0 at my age, it was what he called a no-brainer, but advised that I could certainly get a second opinion. Having read as much as I had, I had already expected that recommendation, so I set up the biopsy for Oct. 9 of 2007.
Oct. 9, 2007: Having read a LOT about the biopsy procedure, I was understandably pretty nervous the morning of the procedure. The lengthy wait between when I scheduled the biopsy and the actual date didn't help any. What I found was that it was practically nothing compared to what I had imagined. The most uncomfortable part was the actual insertion of the probe and the manipulations of the probe as the doctor moved it around to get the correct angles for the samples, although even that was not what I would call painful. My doctor used two injections of some sort of numbing agent (Novocaine?) before the samples were taken. The injections were totally painless, only a slight burn, and according to the doctor, well worth the small amount of discomfort. The actual samples were totally painless, a little snap as the needle retrieved the sample, but no pain in my case at all. He took 12 samples and the whole procedure was over in about 20 mins. I had a tiny bit of soreness for the next day, but generally no side-effects other than the expected blood in urine and ejaculate for a few days afterwards.
Oct. 16, 2007: It took a about a week for the results to come back on the biopsy, and I had pretty much convinced myself I was going to be lucky, and the samples would be benign. Today, I got hold of the urologist on the phone and he told me that unfortunately 2 of the 12 samples had shown cancer, both samples were adjacent on one side of the prostate. Gleason score was 6, and the cancer was present in less than 5% of each of the two positive samples. He went on about how these 'numbers' along with a PSA of 5.0 were all indicative of a low volume cancer, with excellent prognosis for a good outcome, but I didn't hear a lot of what he said I'm sure.
It's an odd feeling when you first hear the news. I was a bit numb for a bit, almost in denial I guess, then the realization of what you are facing begins to sink in. I was initially mad (at who?, I don't know), depressed (why me?), and the last thing I wanted to hear was all the 'good news' about how fortunate I was to have caught it early, all that stuff that your friends and family will tell you. I can honestly say that when you get this kind of diagnosis, there IS NOT a positive or upside in your initial state of mind. Gradually, over the next few days my frame of mind improved and I realized that I had to make some decisions. Once I sort of came to grips with the situation, my 'normal' mental state returned and I was ready to go forward. From what I've read, that seems to be a fairly typical reaction; denial, depression/anger, and finally acceptance and resolve.
Oct. 19, 2007: The urologist advised on his call that I should set up an appointment for later in the week, bring in my wife, and he would go through all the details of the biopsy with us, explain the treatment options available, and answer any and all questions we might have. I'd add at this point that a life partner is probably your greatest asset during this whole thing. My wife was the stability I needed immediately after the diagnosis, and her support was essential throughout this whole process. So on Oct. 19 we spent about an hour with the urologist. I was staged T1c and he explained the various treatment options, including brachytherapy, radiation, and of course surgery, either radical retropubic prostatectomy (RPP, his field) or robot surgery (laparoscopic). He gave me a list of several doctors in each of those fields, but by this time I had read a lot about treatment options and was well on my way to making the decision for surgery. At my age, and in generally good health, it seemed to be the best choice, and I liked the idea that if things go well, the cancer is gone, period... He stressed that I didn't need to make a quick decision, but that I shouldn't wait 6 months either. He suggested that I set a date out about 6 to 8 weeks or so, and plan to have a decision made by then.
I was very interested in the robot surgery as an option, as the less invasive nature appealed to me, so I set up an appointment with a surgeon who did the Da Vinci surgery.
Nov. 1, 2007: I visited with the surgeon today who specializes in robotic prostatectomy. At the appointment he asked about my medical history and I informed him that I had an umbilical hernia repair about three years ago. This repair was essentially a mesh that is put in place by the surgeon, much like patching a tire, and the tissue regrows around it. He examined the surgery site, just above the navel, and was concerned that the scar tissue was quite hard, and in a location that might hinder the necessary access points for the robot arms. At this point, he basically told me that I was not the best candidate for a robot procedure, as it was very possible that once the robot procedure started they may find the scar tissue a problem, especially if it had attached to the abdominal wall. This would require a lot of cutting and moving of scar tissue inside the abdomen, defeating the whole purpose of non-invasive robot surgery. If that happened after the robot surgery had started, the surgery would have to be replanned mid-stream, with different equipment, possibly different personnel in the operating room, and just generally adding a lot of undesirable 'plan B' changes on the fly. He added that if I was determined to have a robot surgery, I could probably find a surgeon to do it, but in his opinion, it wasn't the best choice for me. He felt it was far better to plan on a conventional RRP going in and minimize the chances for unknown problems. I really respected this surgeon, as he essentially just talked himself out of a large paycheck.
Nov. 2, 2007: Having been told that I was really a better candidate for RRP, rather the robot surgery, I called my urologist and asked about scheduling surgery. I don't know when I made the conscious decision that surgery was the right choice, it just seemed that at some point I knew. I might add that I had read all the information regarding finding a surgeon who was very experienced, as surgical skill is a key factor in minimizing the after effects of a prostatectomy. To be honest I was more concerned about the change of life style that I could expect, i.e. incontinence issues and erectile dysfunction than I really was about a 'cancer cure'. I guess I felt that given my excellent prognosis for a cure that getting rid of the cancer was a given. Probably not the right way of thinking, but that's where my priorities were at that point. I wanted the BEST chance possible of returning to a normal life style without the side effects of a prostatectomy. During the initial consultation with my wife, my urologist indicated that he performed or assisted on about 40 RRPs a year, for something near the last 10 years or so. I really wanted somebody who did a lot more, but for some reason, my gut feel was that this guy knew what he was doing, and I trusted him implicitly. If you think about it, that's a lot of experience. I'm not saying you shouldn't research a surgeon, but I am saying there's more to it than just numbers. You have to be absolutely comfortable with your choice, and I was.
I had talked previously with my wife about scheduling surgery as soon as possible, even over Thanksgiving if necessary, as I wanted to have it all behind me at Christmas, rather than something to dread sometime after the first of the year. In case you haven't noticed yet, I was only about three weeks out from the initial diagnosis, but I didn't see any advantage in waiting once I knew what I wanted to do, so the office was able to schedule the surgery for Nov. 19, 2007. I was somewhat lucky to be able to find a slot that quickly, but I guess most folks wouldn't be too interested in spending Thanksgiving week in a hospital, so maybe that's the reason.
Nov. 19, 2007: The surgery is scheduled for 1:00PM, and we arrive at the hospital at 11:00AM. A brief wait and then I'm escorted back to a pre-op room. I change into the standard issue hospital gown, squeeze into these crazy legging/stocking things that are somehow supposed to improve circulation and then my wife and I chat a bit. I'm really not that nervous about the surgery, but anxious to get started. During my pre-op appointment the previous Friday all the preliminary lab work, blood typing etc. has been done, so I'm just hooked up with an IV and have a quick visit with the anaesthesiologist. My urologist comes by and asks if I'm ready, and then heads out to get scrubbed in. Finally I'm wheeled off to the OR about 1:30P. In the OR, lots of folks are scurrying around and I'm watching the proceedings then the lights go out and I wake up in recovery. I knew what to expect from my previous hernia surgery, but it's still odd how you are totally unaware of the passage of time.
In recovery, I'm in a bit of pain at the incision site, but too groggy to be able to say anything. The surgery was about 3 and a half hours, and I must have been in recovery an hour and a half or so, so I was wheeled to a room at around 6:30PM. At some point I must have been given some sort of pain medication via IV because other than being kind of dingy, I feel pretty good. The nurses show me how to click the button every ten minutes for the morphine drip, but I tended to forget about it. There just wasn't much discomfort at that point. My wife is with me in the room and she tells me that the surgeon said the surgery went good, no problems. I check out the surgical site and see the dreaded catheter, a small JP drain on the side of my abdomen, and I've got these pneumatic devices massaging my legs. All in all I feel pretty good.
Nov. 20-26: The next couple of days are pretty uneventful, although I get up and walk on day 2 along with a considerable bit of 'ouch factor' when first standing. By now, I'm starting to get restless in the bed, I can't roll over because of the catheter and the JP drain, and I'm generally ready to be out of there. The surgeon comes by on day two, checks out the incision site and tells me that the surgery was actually an 'easy' prostatectomy. Apparently everyone's anatomy is somewhat unique regarding how the blood vessels, nerves etc. grow and form around the prostate. For whatever reason, my particular case didn't present any problems, and he said he was able to a good job of nerve sparing on both nerves. He said lymph nodes looked good visually, and he was confident that the post surgery pathology report would confirm what he believed he saw during the operation. All good news... Weds AM the surgeon is out of town, but one of his partners comes by to check on my progress. He removes the JP drain, an odd feeling, but not painful. By now I've gotten totally off the morphine, I didn't care much for the side effects and the pain was really not a problem.
Well, the get out of the hospital ticket after surgery is either passing gas or a bowel movement to indicate that the bowels are returning to normal function. It took until Weds evening, two days after the surgery before I could produce said evidence, but finally I went home on Thurs, Thanksgiving morning.
The catheter was my biggest complaint at that point. I knew what to expect, but it still didn't make it easier to deal with. Initially I kept the big night bag hooked up, and just carried it around the house. After a day or so of that, I was considerably more mobile and went to the strap on leg bag during the day and the big bag at night. I won't say it was easy, but you learn to cope pretty quickly, and I started counting the days when I could get rid of it. I read a lot about discomfort and irritation where the catheter exits the penis, but for me that was never a problem.
Otherwise, I felt stronger every day, very little pain other than with the occasional cough or sneeze. My appetite had returned and overall I felt good.
Nov. 27, 2007: I'm back at the urologist office today, 1 week post-op to get the surgical staples removed. Not totally painless, but bearable. The urologist checks out the incision, says it looks good and then shares the post-op pathology report. It's great news. The cancer turned out to be in both sides of the prostate, not just one and the Gleason was upped to 7 from 6. But the really good news is that the lymph nodes were clean, surgical margins negative and there was no evidence that the cancer had escaped the prostate capsule. His comment to me was this is great, it's just what you want to hear.
This second week with the catheter I start noticing a good bit of discomfort in the perenial area, requiring a big pillow to sit in a chair. Not terribly painful, but definitely uncomfortable. I assume it's some sort of healing in the area where the prostate used to be, so I don't worry about it.
Dec. 3, 2007: The big day, I'm back at the urologist office 2 weeks post-op to get rid of the catheter. I'm told to strip from the waist down, cover up with this modesty sheet they give you and wait for the doc. I might add at this point that modesty was left way back somewhere else in this process. I always considered myself a pretty modest guy, very uncomfortable about these kinds of things, but the string of personal indignities; the numerous DREs (Digital Rectal Examinations), the biopsy with surgeon and his female assistant, the surgery and the follow up care with young female nurses taking care of the catheter etc. all seems to have numbed me to that whole concern. At this point I couldn't care less. I don't know if that's good or bad, but that's how it is.
So the doc shows up and asks with a grin if I'm ready to get rid of the catheter. I quickly agree so he actually fills me up with a saline solution via the catheter (a two way street in case you didn't know) and then quickly deflates the balloon and removes the catheter. No pain, but a weird feeling. My goal is to urinate in a container and then stop the flow. I manage that somewhat, although stopping was a bit more difficult and took more effort than I thought it would. He says great, that's where you need to be. I had been told to bring some Depends pads for men with me to the appointment, so I get things in order and get ready to head home. Amazingly, the discomfort in the perenial area disappears almost immediately with the catheter. I asked about it and he mentioned that it's not unusual for the catheter to start causing soreness in that area after a while. Glad it's gone...
After we deal with the catheter removal, we have a talk about follow up care. First, regarding the continence issue he says it may take some time, it varies, but in most cases full continence eventually returns. He instructs me to do Kegels regularly every day to speed the process and not be impatient. Return of erectile function is also on an unpredictable time table, and he gives me some Cialis to get the process started, the idea being to improve blood flow in the penis. There's plenty on the web to read about that so I won't go into the details of that treatment. It's common practice. He says no sex for 4 more weeks, but to start erectile rehab any time. I took that to mean see if 'it' works... I get my prescription for the Cialis and head home.
Dec. 10, 2006: Update, 1 week post-catheter, 3 weeks post-op. Continence is a bit of an issue. I'm pretty much totally continent lying down and all night, and almost fully continent sitting. But standing, walking or doing any relatively strenuous activity and I drip a good bit, some days worse than others. All in all, it's manageable with the pads (2 to 3 a day at this point), and certainly better than the catheter. I'm kegeling religiously and I THINK I'm starting to see a bit better control.
On the Erectile Dysfunction front, things are way better than I had hoped. Certainly I'm not 'up' to pre-op standards, but I definitely CAN have an erection of sorts, although not quite sufficient for intercourse at this point. This also seems to be improving, even in just a week. This is very encouraging news as I have met several other post RRP patients who have yet to see ANY progress, even months after surgery. I can only credit the surgeon's skill and/or good luck I guess, but this is a huge relief for me.
I'm also back at work today, overall feeling really great, although still not quite as strong as pre-op. I tire a bit more easily, but I notice daily improvement in that regard. I'm scheduled for a blood test on Jan. 14, to check PSA, but the doc seemed almost nonchalant about that, based on the post-op pathology report. Still it will be good to see the results and get the confirmation.
I am TOTALLY satisfied with my choice of surgeon at this point. Not only is he obviously skilled, he's been a great guy through this whole thing. He even gave me his personal email address and told me to email any questions I had. I have and he's responded within a day.. Not your typical medical professional in my opinion.
I'll update with a progress report after the blood test.
Jan. 14, 2008 - Visited the urologist today. First post-op PSA test results are in and the news is good; PSA is undetectable. I had expected this based on the confidence the urologist had about the surgical results and post-op prostate pathology reports, but it was good to hear it confirmed.
At the visit today the urologist also asked about progress on the 'big two', incontinence and erectile dysfunction, and also general questions about how the urinary plumbing was working overall.
For me the huge upside of this whole PC surgery was that I seem to have improved greatly in the flow, urgency, and frequency aspects of urination. Prior to surgery, I had some issues with each of these, but not enough to warrant treatment. Post-surgery ALL of these symptoms are either greatly improved or just gone. I'm real happy about that, and the urologist says that based on the size of my prostate at removal (much larger than normal, but far from the biggest he'd seen) he's not surprised at the improvement. I guess that's certainly one positive aspect of this whole thing, the urinary problems associated with a large prostate are gone in my case.
Regarding incontinence, I've been doing the Kegels regularly and I'm seeing a lot of improvement in just the last few days. I've gone from 3-4 pads a day on Dec. 3 when the catheter was removed to 1 a day for the last few days. I'm totally continent lying and sitting down, and just have a bit of a dribble when walking or active. As an encouragement I would add that improvement in this area for me seemed to come in stages, and there were days when I 'relapsed'. You have to look at the overall 'trend', not day to day progress. The urologist seemed to think I was on target in this regard.
When he asked about the ED issue, I told him it was pretty much unchanged from Dec. 3, the equipment was 'working' but probably at only about 60% of pre-op. He had prescribed Cialis and I had been taking that and found it to be helpful, but not a 'total fix'. On that news, he gave me some samples of Viagra to try, with the comment that it might work better for me, since effectiveness of these drugs varies from man to man, some working better than others. Not being one to delay scientific research, my wife and I tried it that night and the results were VERY good. I would say at a pre-op standard++!!!!! I felt like I was 25 years old again.. certainly good news.
I guess one topic that always comes up when discussing the sexual side effects of RPP, is the change in orgasm that can be expected. I've read a lot about what other guys have experienced, but for me while it is definitely different, I would say it's every bit as pleasurable and maybe even a bit more long lasting. The lack of an ejaculate IS odd, but I don't see it as a big deal.
My next PSA test is scheduled for 3 months out, I'll update then.
Had my six month PSA test today and level was undetectable. I had the usual chat with the urologist about what he calls 'the big three' issues after a prostatectomy; cancer cure, incontinence and erectile dysfunction (in order of importance). Since PSA remains undetectable he says we should declare a 'cure' and move on, although he still wants to test PSA again in 3 months. I remain confident we are done with the 'cure' part.
On the incontinence front I'm also ready to declare victory. I've been off any pads for about a month now, and only see a tiny leak once in a while when exercising or on occasion with a cough. I probably could have quit using the pads a bit sooner, but you tend to get reliant on them to the point that you don't want to take a chance. They're not uncomfortable, and it's easy to just play it safe. Based on how little leakage I seemed to have, I finally decided that I'd try to go a weekend around the house without them and see how it went. I had no problems at all, so that was the end of the pads. If you had told me this time last year that this year I would be excited about not peeing in my pants I'd have thought you were nuts.
Regarding the ED, it continues to get better (probably about a solid 7 compared to a pre-op 10), but improvement is coming a bit slower now. I seemed to have 'peaked' early on, although I can't complain as the erection is now sufficient for intercourse. I've learned to match my medication rate (Cialis) to what my insurance company will allow/pay, and at the urologist's advice I take it regularly, almost like a vitamin. I was prescribed 20mg Cialis, and I cut it in half and take a half (10mg) every other day. This pretty much keeps some in your system all the time, and the doc says that's kind of what you want. It seems to work for me. In an earlier update I mentioned spectacular results with some Viagra samples the doc gave me. That turned out to be a one-time success. Further use of Viagra didn't really work any better than the Cialis. That's one of the frustrating things about the ED, the unpredictability of how well you will respond on any given occasion, at least that's how it's been for me. In my case the Cialis seems to be the most reliable option. The urologist again stressed that it was still relatively early, sometimes recovery can take up to two years for some men, and that my progress was actually pretty good.
So all in all, I know I made the right choice for me, and the follow up and recovery has been pretty much 'textbook' so far. I can only hope that anybody reading this can be encouraged that PC CAN be licked and life goes on. Best of luck for whatever treatment you choose.
Next blood test is now scheduled for July 14, so I will update then.
July 14: Visited the urologist for the scheduled PSA test, and all is good, he says the PSA is 'perfect' whatever that means.
On the incontinence front, no problems although I still have an occasional drip with a cough, or when lifting something heavy. I continue to see improvements, with fewer and fewer 'drips' so I expect even this will go away with time.
The ED report is very good. This is about 9 months post-op and I've seen a definite improvement in the last couple of months. Best of all, chemical assistance isn't always necessary, which is a good thing. I'm not back to a pre-op standard, but getting closer and headed the right direction.
I've had the pleasure of talking with several guys since sharing my experience here, and I welcome emails with questions or whatever.
Oct. 13: I had the scheduled 3 month lab test and visit with the urologist today. PSA remains 'perfect'. The next test will be in January.
Incontinence is just a distant memory, all is well on that front.
ED is also improved substantially in the last few weeks, still not quite back to pre-op standards, but getting closer all the time. I'm obviously very happy about that, and the doc says there is likely to be more improvement yet.
I'm now approaching the one year anniversary of the surgery, and it's hard to believe it's been that long, the last year just seems a blur. All things considered, I'm extremely happy to be where I am today.
Visited the Urologist in January for 3 month checkup. PSA is still undetectable and as previously reported no incontinence issues for quite some time.
ED is still improving, hopefully I can be off the meds soon. The Cialis is pretty much optional now, although I still seem to do better with it than without. I asked about how long before I would stop seeing any improvement in the area of ED and he said usually about 18 months postop. I see other info on the web that says 2 years, so like many things associated with PC, I suppose each case is different in it's own ways.
So I'm now about 15 months out, and all is good.
Had the 21 months post-op checkup today.
PSA is still undetectable, and doing great on all fronts. Only real change since last report was that I'm pretty much 'good to go' without any ED meds these days, a welcome development.
Latest checkup still shows PSA undetectable so the urologist has put me on the 6 month PSA check, instead of the 3 month. Another year, and I'll be back to annual PSA checks.
In all aspects I really feel I've made a complete recovery. ED was the most lingering of all, but as reported previously, I haven't depended totally on chemical assistance for some time. I still have 'better' results with than without, but I can live with that and I believe I'm still seeing improvement, even at the two year mark. My urologist says he considers being able to achieve an erection, even with ED meds, to be a success in his book, something to think about I guess.
Seems my updates are pretty boring for the last year or so (something I'm very glad to say), so I'll probably stop, but I welcome any and all questions anyone may have at any time.
Best of luck to all, no matter what path you choose.
Terry asked that I keep updating, even though it's more of the same (thankfully)...so here it is.
Latest PSA test is still undetectable. No other real issues, incontinence non-issue, ED meds still helpful, but not required.
It's been over a year since I updated my story, even though I've been meaning to get back to it, so at Terry's request here's the latest.
I'm now on 6-month checkups, and PSA level is still undetectable. I believe the doc said after the next one we go to annual checkups if all is still good.
Incontinence is a non-issue, although even now a sneeze or cough can sometimes cause a little 'drip', but nothing that's a real problem.
ED is pretty much unchanged, i.e. meds do help, but are not always an absolute requirement.
Based on some of the stories I've read, I consider myself fortunate to be where I am in that respect. To be honest, life is very much "back to normal" and I seldom think about the whole PC episode except when the doctor appointments show up on the calendar. [That's why updates like Bill's are so important - newly diagnosed men simply can't imagine that their lives will ever be "normal" again]
As always, I welcome emails... and best of luck with whatever course you choose.
Just had a recent visit with the urologist, PSA still undetectable, no new issues, status pretty much unchanged in all regards.
I'm now on an annual PSA check schedule.
Just had my annual PSA test and all is still good, undetectable. The 5 year mark has come and gone and I'm glad to say the whole PC experience has become a distant memory. I've taken a little more interest in my long term health with diet and exercise, and the GP doc has taken me off blood pressure and cholesterol meds as a result.
Life goes on...
Just had the annual PSA test, and results were 'undetectable', pretty much the same status on all other fronts.
I'm glad to say the notices from YANA are about the only time I ever even think about the whole PC experience. Hard to believe this much time has gone by.
Recent annual PSA test resulted in undetectable level, in all other aspects no changes.
Recent annual visit with urologist uneventful, PSA undetectable, and no changes from last year.
Absolutely no change in status other than a shift on my part toward a more healthy life-style this year. 10 year anniversary of the surgery approaching.
Bill's e-mail address is: bterry73 AT gmail.com (replace "AT" with "@")