With symptoms consistent with BPH (Benign Prostate Hyperplasia). and after seeing a rise in PSA from 3.5 the November before, to 4.7, I had a DRE (not my first, been getting them since I was about 45) in May of 2008 by my family physician. He felt nothing abnormal, but we both thought a urological consult was wise. Consult occurred in late June of 2008. The urologist felt a mass near the apex and we both agreed that a biopsy was needed. Biopsy was in late July or early August, 2008.
The biopsy was minimally uncomfortable. I took 10mg of Valium before the procedure, and the urologist used a local injectable anesthetic. Let me be very clear: If your urologist doesn't/won't use a local injectable anesthetic for biopsy, FIND A NEW UROLOGIST WHO WILL! We chatted through the entire procedure, and nearly any trip to the dentist has caused me more pain than the biopsy did. It was NO BIG DEAL if you are currently facing one. I really can't honestly even use the word "pain" in describing it. It wasn't fun obviously, but the apprehension prior to the procedure was much worse than the procedure itself.
When the call came in Aug., that I had prostate cancer, it was not really a shock to me. Given the steady rise in PSA, the urinary symptoms and the palpable mass felt by the urologist, I was quite certain of the outcome before the call came.
I had already done most of my research into treatment options in the time frame between the family practice appointment in May, and the urologists call with the bad news after the biopsy in Aug. I knew that given my long life expectancy (>20-25 years), I wanted surgery. I was in good shape, with an active sex life with my wife, no complicating factors at all. Yup...I wanted the surgery after looking at all the other alternatives.
Surgery was performed on Oct. 14th, 2008, at the Huntsman Cancer Center in Salt Lake City, Utah by Dr. Christopher Dechet, using the da Vinci Robot system. I went into the operating room at 7:00 a.m., and returned to my room at about 12:00 noon. By about 2:00 p.m., I had gotten up and walked about 1/2 mile around the hospital corridors. After dinner, and before bed time, I walked about another 1/2 mile. Pain and discomfort was very minimal. The only pain meds. I was given was an injection in the recovery room.
The next morning, I walked about 1 mile non-stop (albeit not very fast...) and returned to the room for breakfast. Still no pain really. About 10:00 a.m. the Dr. came in to see me and said he had heard I was walking grooves in the carpet around the floor...
He said I was outta there and going home. I told him "Not before lunch." The Huntsman center has really wonderful food for a hospital! After lunch, I was discharged to home. I actually stopped by my work for a while on the way home from the hospital to see my crew. They were worried about me, and I wanted them to see me 24 hours after the surgery, upright, walking, talking, and smiling.
My recovery period:I had the catheter in for 12 days, as the Dr. was out of town for a few days, and we decided in longer was better than out too quickly. Oh yeah...Everything you read about the catheter being not much fun is true! Not excruciating, or debilitating, but for sure a royal pain. By far the most irritating part of my initial recovery. On day 12, I went back down to the hospital to get the catheter pulled. I told the nurse "It was my nemesis for 12 days, I want to pull the damn thing out myself!", and I did...
I got my pathology report at that time also. I feared the pathology report much, much more than the surgery itself. I knew I was in great hands during the surgery, and I had no decisions to make. But, if the pathology report was a bad one, or even "sorta" bad. I knew the surgeon could no longer help me, and I had lots of decisions to make. None of them were very good ones, either. Well, my report was negative everything. No ECP (Extra Capsular Extension), No positive margins, no seminal vesicle invasion, no node involvement. Nothing. Only in pathology reports is the word "negative" actually "positive". My surgical Gleason score was also downgraded from 7 (3+4) to a 6 (3+3). That certainly was good to hear. For the very first time since this all started, I was flooded with emotion on hearing this good news. I cried with relief.
Urinary problems: I had to wear a pad for the first week or 2 after getting the tube pulled. Not much leakage but enough to make me nervous. After about week 3 maybe, I quit using pads. Urinary urgency (and I DO MEAN URGENCY!) was the biggest issue. When you have to go, you have to go now! If you don't it gets painful. 2 and 1/2 months later, (It is now Jan. 2, 2009 as I type this) those symptoms have all but disappeared. I might leak a couple of drops of urine if I sneeze hard occasionally or lift under a strain. But usually only if I am really tired or something. I don't think my white cotton underwear have any more urine staining in them when I take them off than before the surgery.
Sexual problems: The Dr. told me he damaged both nerve bundles. Still intact, but damaged. He started me on Viagra immediately. I have no spontaneous erections yet (at least not useble ones) and the Viagra is having limited effect so far. I have about 18 months to go before I get nervous. My wife thinks it is getting better since the surgery (Hey...She is the expert after all...) maybe at 60-70% of before. But not useable yet for penetration. But...You know what? Our sex life is still good, and we are having fun working at the ED problem! Way, way too early to get down about this erection thing. Considering what kind of bullet I dodged (I hope), this is a small thing (to me) to put up with (Pun intended). I will keep you posted as things "come up". :)
Other points of interest: My first PSA test at 6 weeks Post-Op was "undetectable". Whew...I got a bit emotional again of hearing that good news. Next one is in a bit over a month from now.
My advice is to anyone having the surgery is to get in shape before the surgery and getting active as soon as you can after. I feared blood clots more than anything after the surgery, and you need to do what you can to prevent them. That means stay active and moving, even if you don't "feel like it", cause it hurts. Blood clots can kill you! Pain doesn't. I only took maybe 2 doses of pain pills in the first few days. Mostly to help me sleep at night with that danged tube coming out of me. I probably was a little too active...I was on the floor and under my kitchen sink fixing a leak on day 3 or 4 post-op. (Someone had to do it, and I was the only one home!) The whole "don't lift anything heavier than 10 lbs., for a month" was the hard part for me. That was really hard to not do.
Stay positive! No matter how "bad" you think you have it, there are plenty of people having it "worse".
If you have questions e-mail me and I will do my very best to answer them in a practical, truthful way.
I stand by all the decisions I have made, and would not "undo" anything I have chosen. My decisions were based on my propensity to be "anal" about research. I would suggest you do the same before making these very important decisions.
I just had my second "post-op" PSA and check-up. It came back as "undetectable" again and the Dr. said I was "ahead of the curve" as far as erection problems. I have no spontaneous erections yet, but with Levitra I am hitting about 50% of the pre-surgery erection level.
I had 75% of one nerve bundle removed, and 25% of the other side, so the Dr. said that any erection activity at all this soon (4 months) after the surgery is more than he would have hoped for.
He is optimistic and so am I. Besides, the sex with my wife is just fine (Thank you) without an erection! In fact, we have become physically closer now than before the surgery and I'm not worried at all about the erections coming back or not, and neither is she....It is just like my bald head; Sure, I would like to get hair back, but it doesn't define who I am, how she loves me, or how much of a "man" I am, so I don't really give a rat's *ss about it! We have more important things in my life to worry about, like "where are we going back packing this summer?!?"
Life is good for now, and I thank the Lord for my blessings.
Well, 7 months (or so) post op. and here's the current "state of affairs" with me:
Last check up was basically a PSA test and a few questions by the doctor. PSA results were happily "undetectable".
Near total continence now, with only a few drops of urine occasionally when sneezing, or coughing or heavy lifting. My white cotton briefs might have a very small urine stain at the end of each day. No problem at all considering what might have been.
Erections are still a problem, even with Levitra daily. I am on a daily light dose, with a heavier weekend "entertainment" dose. I can obtain maybe 60-70% of normal, but still not yet enough for penetration. I am not worried yet, I still have 5-15 months to go before I get worried. The doctor cautions me "not to worry" and that I am "ahead of the curve" for ED recovery. I believe him...
Next check back with you all will be in August. Hang in there and stay tough!
Well, I am rapidly approaching my one-year anniversary for my surgery, so I thought I would share where I am at in this process.
I have started working out 6 days a week again. I am doing a spinning class (stationary biking sort of). This is a very physical class of mostly 2-30 year olds, that keeps my heart-rate in the 130-140 zone for about an hour each time. I do this 2 days a week. Then, I am in a fitness boot-camp 2 mornings a week. Followed by weight training 2 days a week. I have some pains inside my lower right quadrant when I work very hard. Just an annoyance, but it is there. I hope they aren't adhesions from the surgery.
I have pushed some urine out on a couple of occasions when I am straining very, very hard. No big deal though. Normally, I don't leak but a couple of drops a day maybe.
Sexually it is coming along nicely. I managed my first penetration during sex last week. I actually cried a bit from the relief and the feeling of accomplishment. It was a very close moment between myself and my wife that I had been missing. This was at about 11 months post op., so it is moving in the right direction. Also, it was with a dose of Levitra.
My PSA was again undetectable.
I go back to the Dr. next Feb. and it will be nice to be 30 lbs lower then.
I am now at 2 years after diagnosis, and 21 months after surgery. Nothing new to report really.
Sexual function: Erections are not quite at pre-surgery levels (I don't think anyway, it is hard to remember such things), but then I am 2 years older too! I doubt she notices, and maybe I am just looking for some before and after change. I still use Levitra, but maybe I would be using it by now anyway...With or without the whole prostate surgery thing. Who knows? At any rate, everything works fine!
Bladder control: No problems that bother me. If I get really fatigued, or during heavy lifting or something, I occasionally will lose a couple of drops of urine into my underwear. Not even an issue beyond I simply notice it now. I have learned, and so will you, that you don't let your bladder get as full as you used to do. It simply becomes more uncomfortable to do that.
Bottom Line: I have lost no "manhood points" through this ordeal. I am just as confident sexually as before. If I was thrust into the dating scene again today, it would be nothing more than a conversation I would have with any possible sexual partner at some point. Nothing that would make me uncomfortable. This is not something that has continued to impact my life to any extent.
I am currently very active, working out at the gym and riding my bike 100-150 miles per week. My level of concern about prostate cancer killing me now has been dropped pretty much "off the radar" now. I am back to worrying about the very "real and now" threats to my life...Heart disease and jealous husbands. (KIDDING!!! JUST KIDDING!!! VERY HAPPILY MARRIED)
I am now a bit over 3 yrs. post-op. My PSA tests are now being done yearly, and remain at "0"-undetectable.
This entire ordeal is becoming a distant memory now, with few lingering reminders at all. Sexual effects are stable now, with no further progress. I am able to get an maintain adequate erections, but only with the help of Viagra. However, to be fair, I have friends who are my same age that have the same issue and they have NOT had surgery, so who knows how much of it is due to surgery or age? Bottom line is, things work just fine when I need them to! I just need to think about it a little beforehand....Like that's a problem ;)
Urinary leakage remains a very, very minor issue. A few drops of staining on my underwear at the end of the day, and though I can't remember now, that might be normal for most all guys? I just don't remember noticing it 3 years ago, but I wasn't looking for it either. Sometimes if I sneeze while sitting I might leak a couple of drops of urine. No big deal at all considering what might have been.
My health is great. I rode my first century ride this past summer on my bike (100 miles), and I feel as good now as I ever have in my life. I am looking forward to a Utah winter of cross-country skiing and snow shoeing. In retrospect, there is nothing at all about my post-diagnosis treatment that I would change even if I could.
Nothing new to report. Just living life to the fullest! I retired from the Dept. Of Defelast one year ago, and now I am truly " living the life".
The whole cancer thing is fading fast into a distant memory...just where I want it to be.
Well, over 4.5 years later, time for a quick update. Still happy with my decision for treatment via robot assisted surgery. Only side effects are very minor urinary leakage (as in a few drops) when I sneeze while sitting for example. It is not even an issue in my life. One learns to fully empty your bladder each time, because if you don't, you can squeeze a few drops of urine into your shorts while "tucking it all away" when done. I dunno, maybe that's normal for any 58 year old? I've never asked anyone else. :)
Sexually, all is fine with the help of Viagra. Again, probably normal for many, if not most, 58 year olds.
I retired from the U.S. Dept. of Defense after 30 years of service 2 years ago. Retirement rocks!
I am staying active with my wife, both of us riding several 100 mile bicycle rides each year, hiking and fly-fishing and skiing all winter long.
The whole prostate cancer thing is fading into my past...Just where I prefer it to be.
This is all becoming a distant memory now. I am reminded once a year when I get my annual PSA test though...
Life is good.
Now about 6 years after surgery. All is well. No hint of reoccurring PSA levels, and erections are fine (with the help of Viagra) and life is good. I wouldn't change anything I did or when I did it.
Sorry for the previous update error: it's been 7 years already! Time gets away from us, huh?
All is well, and this is all fading further and further into my past. I am healthy, and happy!
Mark's e-mail address is: 1marknixon AT gmail.com (replace "AT" with "@")