An Unremarkable Prostatectomy - My Story

WARNING - this is a LONG post (3500 words).  OK'd by the moderator!  Enjoy...   An Unremarkable Prostatectomy This is a pretty simple story of my radical prostatectomy, which was performed three days ago.   I’ve got two reasons for writing this.   First, my memory isn’t as great as it used to be and I want to make sure I don’t forget anything.   But second and more important, I’m hoping this will be helpful to someone considering a surgery like mine, or who’s already committed to it and wants to have a clearer picture of what will happen, in some detail.   Leading up to my surgery I read everything I could find, most notably Dr. Patrick Walsh’s book, Surviving Prostate Cancer , which I highly recommend.   But despite all the reading and advice given by everyone, there were still lots of surprises; some good, some not so much.   And I couldn't find anyone who'd set the whole thing down in words, step by step.  So here it, and maybe it will help you if you're planning to have a prostatectomy. Background I’m 57, white, and in good health other than the obvious problem with my prostate.   I’d probably be considered a low risk for prostate cancer – I’ve been a vegetarian for thirty years, exercise regularly, am physically fit and at normal weight, never smoked, and drink in moderation.   Still, in the words of Randy Pausch, the “cancer dart” hit me anyway.   I was almost completely asymptomatic, with only some mild discomfort in my lower abdomen, mostly after ejaculation.   No problems with urination and only the usual age-related diminishment of sex drive.   The cancer was discovered after some higher-than-normal PSA readings, followed by a biopsy which came back with a Gleason score of 3+4.   Given my age and health, I felt that a radical prostatectomy was the only way to go.   Although I like alternative medicine and have used it for various ailments in the past, I never seriously considered using alternative techniques once the biopsy results came back.   There is some evidence that for some people, a combination of meditation, diet, visualization and exercise has halted or reversed their cancers, but it seemed like too much of a long shot to me, especially since the surgery would likely completely eliminate the problem once and for all.   I was not looking forward at all to the after effects of the surgery, but compared to the prospect of dying of cancer a few years down the road, surgery seemed quite tolerable. Having read Dr. Walsh’s book, I was favorably inclined towards his technique, the open anatomic radical retropubic prostatectomy (RRP).   (Incidentally, you’ll sometimes see this referred to as a “nerve sparing” procedure, but doctors are wary of using this label because sometimes they discover, during the surgery, that they need to remove the nerves on one or both sides of the prostate.   So it’s really a “nerve sparing if we think it’s the best thing for you” procedure.)   Based on the information I was able to find, the long term success rate of the traditional, hands-on open RRP seemed a bit better than the robotic “DaVinci” alternative, and I got the feeling that a lot of the positive buzz about robotic surgery was the result of a massive PR campaign by the makers of these million-dollar machines.   The other option, laparoscopic surgery, appeared to offer some short term benefit in terms of faster recovery time, but with a slightly lower long term success rate.   So I went looking for a surgeon with very good credentials to do the open RRP procedure. I saw a couple of local urologists to talk through my options, but once I decided on the RRP, I took the advice in Dr. Walsh’s book and sought out someone who was a highly experienced specialist in performing the procedure.   Fortunately, there was one right in the Pittsburgh PA area, Dr. Joel Nelson, the head of urology at UPMC Shadyside Hospital and a former student of Dr. Walsh.   I was really, really impressed with Dr. Nelson’s track record of over 2000 RRP’s and his success rate, and liked his confidence and intelligence.   We scheduled the procedure for August 27, 2010. Preparation Nobody gave me any advice on what to do to get ready for my prostatectomy; in fact, Dr. Nelson seemed surprised by my question and didn’t really have an answer.   So   I decided to treat it just like any other upcoming physical challenge: I trained for it.   I switched my diet from vegetarian to vegan plus occasional seafood, I cut way back on sugary treats, I dropped ten pounds (not hard when you’re cutting out pizza and dessert!), and maintained a daily exercise regimen of running, gym training, yoga, kayaking, and competitive sports.   The idea was to be in the best possible physical condition for the surgery, and in retrospect, this was a very good idea.   The surgery itself is a huge strain on your body, and the recovery is even more so.   I needed all the physical conditioning I had, and more. The Day Surgery was scheduled for Friday at 7:15am, and I was told to arrive at the hospital by 5:00.   Mine was the only surgery scheduled for that morning in the hospital’s urology wing, so I pretty much got the undivided attention of the entire staff, which was wonderful.   They had me change into a hospital gown, put a needle in my left forearm, and started an IV drip.    Ann, the nurse who was assigned to me, told my wife and me what to expect.   Dr. Nelson came in for a quick hello, then headed off to scrub for the operation. Things really got started when the anesthesiologist arrived around six o’clock.   He sat down at my bedside and reviewed step by step all the details of their “pain management” process.   At this hospital, they use a general anesthetic instead of the epidural used at Johns Hopkins and other hospitals – Dr. Nelson joked that his patients didn’t move around as much because they were fully unconscious.   They also strongly recommend a “nerve block”, which is a series of six injections in the lower back, similar to the Novocain injections you’d get at the dentist’s office but longer lasting.    These mostly numb the lower abdomen area and block nearly all of the post-operative pain for about 12 to 18 hours.   I agreed to this, and strongly recommend it if it’s offered.   Pain is no fun, and the nerve block was a key part of making the day tolerable. The first step in the nerve block was that the anesthesiologist gave me a sedative to breathe through a mask.   I joked with   him about “the more the better”.   He then told the nurse “give him one plus one” whatever that means, and that’s the last thing I remember before waking up four hours later. Later, I asked my wife what happened after I inhaled the sedative.   She said that I kept repeating the same thing over and over again.   “What did I say?”, I asked her.   “You said that everything you saw was flipping like on an old TV,” she replied.   When she told me that, I immediately remembered the feeling after I’d inhaled the sedative… and yes, it was really like everything I saw was flipping up, like an old analog television that needed a picture adjustment.   Apparently some other stuff happened while I was mildly sedated, but the sedative causes amnesia and I can’t remember any of it. What I don’t remember but can piece together pretty easily was this: they shaved my abdomen from the navel down to the genitals (yup, just about all the hair down there was shaved off).   At some point they wheeled me to down the hall to the operating room and put me under general anesthesia.   Then they made a 5” incision from the pubic bone to the navel, and spent about 3 hours doing the procedure itself.   (I can’t tell you anything about the surgery that you won’t learn from Dr. Walsh’s book, but if you really want more, there’s a 1-hour video on www.orlive.com .)     They recycled my blood during the operation, scrubbing it with a Cell Saver device and giving it back to me, eliminating the need for a transfusion.   When it was over, they sewed me up, put in a drainage tube on each side of the incision, and took me back to my room for recovery. Post-Op The first thing I remember is coming out of anesthesia and being somewhat confused.   Somehow I’d expected to remember being wheeled down to the operating room, but I couldn’t remember any of that.   I asked the nurse what was going on.   She told me that I was just fine, but had had my prostate removed.   My first thought was “OK, I guess that means I can’t change my mind about this”. The good news was, there really wasn’t much pain.   The nerve block was still doing its job, so although I could feel that I had a lower abdomen, it didn’t hurt at all.   They also had added a pain-killer of some kind in my IV drip.   So overall, I felt pretty good. The only really unpleasant sensation was an overwhelming sensation that I had to have a bowel movement.   This, it turns out, is perfectly normal, but I wasn’t expecting it at all.   It’s a result of the surgery itself, which is very close to the rectum.   The trauma to that area causes the rectum to be hyper-sensitive, and it was sending out the message that I had to go, and right away.   Turns out my rectum was misinformed, because I didn’t have a bowel movement for another three days. Shortly after that, I discovered that I was connected to a surprisingly large number of tubes.   A catheter was running from the tip of my penis to a collection bag that was clipped to the bed frame and was collecting dark-tinged urine.   More disturbing, I saw a couple of bright red tubes running from either side of my abdomen to a round disk-shaped thing, about 6” across and an inch thick, like a big white Ring Ding, that was collecting the excess fluid from the surgery area.   The thing has some sort of self-inflating suction to it, like a self-inflating air mattress, so it actively draws excess fluid to it.   Seeing all that red stuff coming out of my body was alarming, but the nurse reassured me that it was normal.   There was also the IV line going into my forearm.   And my legs were encased in white strap-on things that were attached to an air pump that puffed them up with air every 20 seconds or so, to help blood circulation and prevent dangerous clots. about a half hour after I woke up, Dr. Nelson came in to see me.   He’d already met with my wife immediately after the operation and told her that everything looked good and it was a success as far as he could tell without seeing the final lab results.   Now he came in to see me, but it was a very short visit without much real conversation – which was actually OK, since I was still sedated and not capable of carrying on much of a conversation anyway. Later That Day The rest of the day was pretty uneventful, compared to the morning.   They actually had me up and walking the hallway, complete with all the tubes, drips and assorted paraphernalia, by the middle of the afternoon, only a few hours after the surgery.   This sounds crazy but it really wasn’t too bad, as I could not feel very much in my abdomen area anyway. At my bedside was a cute plastic device that looked like one of those toys that I had when I was a kid, where you blow into it and a little Styrofoam ball goes around in circles.   This worked the opposite way – you suck on it, and an indicator rises to show you how much air you’ve inhaled.   the purpose of the device is to get your lungs working properly after surgery.   The nurses told me to use it ten times per hour, but I soon lost interest in it and they never mentioned it again. Sometime in the afternoon, two of the nurses came in to empty the urine and drainage bags.    They were in the bathroom measuring and pouring the fluids, and I could hear one said to the other, “350 cc’s”, referring to the volume of fluid in the white ring ding.   Apparently this was more than he was expecting.   He excused himself, saying he had to get something, but I could hear him from down the hall talking with someone about it, presumably a doctor on call.   A bit worrying.   But later in the afternoon, Dr. Nelson came back in.   I asked him about the amount of fluid in the ring ding, and he replied, “well of course you’re going to have a lot of drainage, we just took out your prostate!”.   That was the end of that.   And fortunately, the volume of fluid loss dropped off considerably by later that evening. One thing I was not prepared for was how dry my mouth was.   This is apparently one of the deliberate effects of the anesthesia, to dry out your mouth and throat to prevent obstructions during surgery.   And my throat was sore anyway from the after-effects of having a breathing tube during surgery.   Fortunately, the nurses (and my wife) were very helpful in providing crushed ice and cold water. The nursing staff told me I could eat whatever I wanted.   So my wife went out and brought back some miso soup and soft tofu from a nearby Japanese restaurant.   I had no appetite at all, but the soup tasted good. I didn’t sleep much that night, between the pain and discomfort that started to set in, and the frequent visits from the nursing staff (not that I’m complaining at all; the nurses were terrific).   Around 3 in the morning I asked the night nurse if she’d accompany me for a walk up and down the hall; that was my second walk of the day and helped me sleep a bit. The Day After The day after surgery was actually worse than the day itself.   The nerve block had worn off, and the incision area was starting to really hurt.   It wasn’t so bad when I was just lying in bed, but anytime I tried to use my abdominal muscles, it really, really hurt.   I never realized until that day how important those core abdominal muscles are for just about everything!   Getting out of bed or even sitting up was very painful.   The abdominal muscles were not actually cut during surgery, but they were separated vertically and stretched apart, and even the slightest contraction caused them to complain loudly. That morning, they unhooked me from the IV.   I started drinking fluids – they recommended at least 8 ounces per hour – and taking oral pain meds instead of the ones through the IV. This hospital’s policy is to send you home the day after surgery unless there are complications.   Since things had gone well so far, they encouraged me to leave that afternoon.   There was a flurry of activity leading up to the discharge, including another visit from Dr. Nelson and another from the resident on duty.   A young intern came in and removed the staples from the incision and replaced them with some glued-on transparent tape; he also removed the two drain tubes and put dressings on the small holes that they left in my abdomen.   A technician of some sort came in and gave a detailed briefing on care and use of the catheter, which I really didn’t want to hear but listened to anyway.   A nurse removed the IV needle on my left forearm as well as the spare one on the back of my right hand.   Finally we collected our things and I walked out of the hospital at 3:30pm to the waiting car, and headed home.   Total time from end of surgery to discharge: 28 hours. Although I was looking forward to being home, it wasn’t as much fun as I thought, and for most of the next 24 hours I found myself wishing I was back at the hospital.   The incision pain was getting worse, and everything I did seemed to aggravate it even more.   Even a little thing, like sitting up in a chair, was extremely painful.   Although I had a prescript ion for a strong painkiller (Vicodin), I didn’t like the side effects including constipation, so I’d switched to Advil.    Towards evening I started to get chills and a small fever.   Things got worse until later that night, when finally I just took four Advils, plunked myself in a recliner, wrapped myself up in a couple of blankets, piped some classical music through my headphones, and eventually drifted off to sleep. That was the low point.   The next morning I was feeling a little better, but kept taking the Advils.   I spent much of the next day sleeping. Later On It’s now been four days since the surgery, and things have settled down quite a bit.   The Advils were very effective at reducing the pain, lowering the fever, and managing inflammation; I cut the dosage from four every 6 hours, to two every 6 hours, to one, and as of this morning I’m now completely off all medications. Digestion is slowly returning to normal.   Initially I was extremely constipated, and despite taking stool softeners and Milk of Magnesia, I still went four full days without a bowel movement, probably the first time in my life for that.   The staff told me to expect it, and they were right.   One things started moving, they pendulum swung to the opposite direction and things got, umm, cleaned out pretty well.   I’m hoping that from now on, bowel movements will be close to normal. Exercise is really important, for physical recovery as well as its general effect on my mood – a psychiatrist once said that in all his years of practice, he’d never seen a depressed patient who had worked up a sweat in the previous week.   I’m not anywhere near being able to work up a sweat, but I am taking one long walk every day, a mile through the hilly wooded area near our house, plus one or two short walks around the yard and various wanderings around the house.   I’ve found that using a cane, though a little embarrassing, really helps on these outdoor walks.   If all goes well I hope to start on some gentle NordicTrack work next week. As for the catheter apparatus, well, at the moment this feels like the biggest thing preventing me from getting back to normal.   Dr. Nelson’s policy is to wait about 2 weeks before removing it, to give the bladder and anastomosis (that’s the reconstructed bladder/urethra connection) time to heal.   So while the catheter is no fun at all, I’m willing to put up with it for as long as necessary if it means a faster return to continence.    The hospital folks gave me two sizes of collection bags: a large one for overnight use and a smaller “leg bag” for going out in public and other dress-up events.   Personally, I have no interest in going anywhere with a urine bag on me, no matter what kind it is, so I’m just using the large bag all the time, emptying it periodically and changing it (and washing the old one) every couple of days.   Initially it was a major annoyance, but I’ve gotten somewhat used to it, and can forget about it while I’m doing other things.   Fortunately, the catheter tube itself has caused no pain or discomfort for me; I’ve heard other people say that this was a big problem for them, so I count myself lucky on that. And so… Well, that’s the story so far.   Obviously the most important question, for me, is “did it work?”, but I won’t know that for a long time, maybe years, as we watch the results of annual PSA checks.   The secondary questions all have to do with continence, potency, and overall ability to return to normal activity, and I should have a good idea about all that in the next few months.   But right now, it’s all in the future. Overall, I feel very, very good about the way this procedure has gone, and pretty good overall about the treatment methods available.   Today we look back on the prostatectomy procedures of thirty years ago as some barbaric relic of the dark ages; they were dreaded surgeries, guaranteed to leave the patient impotent and highly likely to leave him permanently incontinent.   Thirty years in the future, it’s likely that new therapies will be available, and doctors and patients will look back on today’s surgical approaches with similar views.   But today, this is what we have, and I’m much happier having the state-of-the-art surgery of today, for better or worse, than anything available a generation ago. I hope this has been helpful.   If you want, post comments or questions or feel free to email me anytime through the forum and I'll be happy to help in any way I can.    

Congrats and welcome to the club.

In about 10 hours, I will be going through the same procedure, only mine will be robotic. We can compare the details..

Fairwind; I've been wondering what you had decided on. We all wish you the very best, and look forward to hearing a great pathology report from you in a few days. Please check back in as soon as you feel up to it.

My prayers are with you, and your family.

That's good to hear, Jeff, hope your recovery continues to do so well

Hi Jeff:

Thank you for that very well done account. I wish I had been able to read it before my husband's surgery three weeks ago (I am sure there are other such accounts posted here but I have had little time to hunt them down). I think that after nearly 4 days in the hospital, my husband was so happy to get home he was euphoric.

Mimi

j53 - I am from the PGH area as well.  I had the same surgery done by Dr. Joel Nelson last Friday (09/10/10).  All indications are that things went well (confined to my prostate).  Of course, I won't know for sure until I get the biopsy results of the surrounding tissue in about a week.  My experience at UPMC (both pre and post op) coincided exactly with yours.  I have no second thoughts about the surgery.

Some background -   I am 53 year old, white male.  My PSA went from 1.9 to 2.1 to 2.7 to 4.4 over the past three years.  I feel very lucky that I had a great family doctor (Michael McGonigal) who noticed the rise from 2.1 to 2.7 and suggested I get a biopsy back in April (Gleason 3+3), cancer present in 3 of 12 samples (5% to 10%).

It was very comforting to read your post op experience since I am only about a week behind where you are currently in terms of recovery.  It was kind of like looking into my future .   I am very interested in how your recovery goes.  I'd be glad to post my recovery experience as well.  Best of luck with everything.  Here's hoping we both become one of Dr. Nelson's examples of a prefect result and a complete recovery!

 

j53:

Great explanation of your experience. Great to hear your doing well. My LRP was on 8/31 just 4 days after yours. My catheter was removed last Thursday (worst part of the entire process for me). Puts me just under 2 weeks post-op and doing well and working thru the incontinence issues.

I have a question for you. You mentioned that while evaluating your options you discovered that LRP had "a slightly lower long term success rate".

I'm curious if you were able to find any #'s on long term success rates for LRP vs. other, during your decision process? I only ask because I was not, and I would be interested at looking at those types of numbers if they were available somewhere.

Thanks...

Hi j53 - I'm in Day 5 since my surgery.  So far things are going very well.  My one issue (minor) seems to be a rash around my scrotum.  I called Dr Nelson's office and he wrote me a script for Nystatin which seems to be working.  And speaking of my scrotum (and who among us ever thought we would begin a sentence with those words ), it has given new meaning to the word enlarged!  The thing is like a grapefruit.  From what I've been told that is fairly normal and should go away on it's own in about a week.  It's not painful at all, just in the way.  Let me know if you've heard anything or experienced anything like that.

I'm glad to hear how well things are going for you.  As I said in my earlier post, I feel like I am seeing my future through you.  I have my follow up appointment scheduled with Dr. Nelson for Wed, 09/22 and will be getting rid of the catheter once and for all.  Another milestone in sight!  I know the next phase is the incontinence phase but hopefully I will roll through that one quickly.  If not, that's ok too ... just another thing to overcome over time.  I know you aren't where you want to be with incontience but I'm sure your situation will improve quickly.  Best of luck with that.

As for potency, you are a superstar at this point.  I can't even think about that yet, but I sure hope my early "reaction" is similar to yours.

And thanks for the feedback about returning to the office.  I too work in an office setting.  I got clearance to work from home starting tomorrow which I am excited about.  I'm not real good at being idle.  It looks like my physical return to the office will be 09/27 which sounds about right.  I certainly helps to know that if I do feel tired it isn't abnormal.  I'll let you know how it goes.

Here's hoiping your great recovery continues at an even faster pace!.  And you are "on" in terms of which one of us can be "Depends" free the quickest!