I’m posting this because I couldn’t find this type of information before I entered the morass. So many of my questions are about the little things -- what to expect during and after surgery, healing, recovery, and post-op issues. These seem to get lost in the discussions that focus on the big issues of I HAVE CANCER and HOW DO I GET RID OF IT. So here is a little different kind of account, with observations on the things that at least surprised me a little.
I’m 48 and, thanks to my general doctor wanting to establish a baseline PSA for the future, found out that I had “issues” in October of 2006 – a PSA of 12. He quickly referred me to a urologist and a quick re-test indicted that my PSA was still off the charts. Digital exam revealed nothing of note, except an enlarged prostrate. But my urologist was pretty blunt in his assessment – I had a 50/50 chance of having cancer.
We quickly scheduled a biopsy, and within a month, we knew for sure. Six of the 10 sampled areas had cancerous indications with a Gleason score of 7. I was asked repeatedly if I wanted to get a second opinion – but I couldn’t really see the point. Two labs came up with out of line PSA scores, and the biopsy pretty much confirmed it. Plus, the concept of screwing around and wasting time with cancer in me just didn’t seem all that appealing.
So in evaluating my options, it didn’t really seem like I had that many. At age 48, I have a high probability that this will kill me unless treated. Wait and watch or radiation just didn’t seem like strategies that would be likely to allow me to die of old age. So we opted for a radical prostatectomy. My urologist explained all the options (which I thought that I had studied up on) and suggested that if I were to have surgery, I should opt for an approach that I did not manage to find on the web - De Vinci robotic surgery. Better odds of sparing those wonderful nerves, and less chance of incontinence. He said that while he could do “typical” surgery, I would likely be much happier with the result of de Vinci. But unfortunately, he doesn’t do de Vinci, so I had to switch off to a partner at his medical group, and start a developing yet a new doctor patient relationship. All this takes time, and like I said, I really didn’t like the concept of “cancer inside me”.
By the time we scheduled a surgery date it was mid February, and I was more than ready. I spent a day preparing my GI tract, and showed up at the Hospital at 5:00am the next morning. I had normal anesthesia and an epidural, and before I knew it I was in the recovery room (actually about 4 hours of surgery).
I felt little pain during the next day, ate some jello and the like, walked around a bit, and passed a little gas – apparently this gave me the green light to go home after one day. I don’t know if that was the best idea or not, because on day two, I had this huge gas thing going on inside me, and it was like my colon had collapsed near my rectum so that it couldn’t get out. I just could not get the gas out – just a little fluid. It was amazingly painful. I was up all night and most of the next day at 20 minute intervals, trying to get this air out of me, with little or no luck. I spent the next night in pretty much the same condition, and vowed that I would go back to the hospital if it didn’t clear before the night. Luckily, it did, and I spent an hour or two farting, and boy did I feel better……
Once the gas passed, I felt much better, and started noticing that my pain reliever was really clouding my mind. To be honest, I have no idea what I was on, because I decided to throw it away right then and just use over the counter pain reliever - Ibuprofen.
The next night, I screwed up. I woke with a headache, stumbled into the bathroom and took two aspirin. Cured the headache ok, but by the morning all my incisions were bleeding and seeping and my urine was bright red. My catheter started leaking – probably because of the anti-inflammatory nature of aspirin? All this persisted about 3 days. Bottom line – don’t take too much aspirin if you have just been sliced and diced.
By day five, my overall impression of de Vinci was positive. No need for narcotics and it looked like the wounds were healing nicely and wouldn’t leave too much scaring. The downside was that I had a catheter in me, and constant diarrhea – if I ate, within 15 minutes I had better be on a toilet. And my colon was pretty sore, so when I had to go, I really had to go….
Eight days after surgery, I saw my surgeon. They did a little pressure test of my bladder, and out came the catheter (ouch). Now I really felt better, and that is apparently one of the real benefits of de Vinci – the catheter comes out early (?). I can’t tell you how much better life is when you wet your pants, but at least the catheter is gone.
Week 4 and lots of kegel exercises later – I’ve been back at work for a week and I am writing this. In total, I stayed home about 18 days. I tried to go back to work after 14 days, but I bled though my shirt and grossed everyone out. So I figured what the heck, -- use a few more days of sick time. I’ve gone a few days without an absorbent pad, and it looks like I’m past that stage. My penis is still a very limp little noodle though, and most discouragingly, it seems shorter and twisted. It makes sense, as they cut out the urethra that passes though the prostrate, and then pull it upwards to re-attach it to the bladder. It seemed very short and swollen when they removed the catheter, but seems a little longer now that everything is less swollen. But still – no one mentioned this particular side effect to me….. Maybe when I can get an erection, everything will equal back out?
My GI tract is still very screwed up, and although I’m not locked in the bathroom after I eat, my food passes though very quickly. I’ve lost about 10 pounds since surgery (which I needed to loose anyway). I’m not too worried as I am not eating much anyway (I always feel a little queasy), and I’ve been at the gym 3-4 times a week for the last two weeks trying to get some aerobic exercise. I’m finally starting to get some of my stamina back, but I find that I still need about 2 hours more sleep than I did before surgery.
Did I make a good decision? Am I happy with the results?
I’m certain that I made the correct decision. The prostrate had to go, and the de Vinci operation seems like the best way to minimize impacts to my system. The scaring looks to be very minimal. My insides are still a little tender, my testicles are a little swollen, and my colon is very touchy. I suspect that all this will all clear up with time. It looks like the cancer was confined to my prostrate – although it was very close to the edge at a couple of points. I have not yet had my first follow-up PSA test, but my surgeon is optimistic. We’ll have a better idea in two weeks.
As to the happiness, I’ll let you know in six months to a year. Hopefully my PSA will zero out – that would make me happy. If my GI tract gets back to normal soon, that would at least make me feel better. And if those nerves that were so carefully teased off my prostrate heal up and start transmitting impulses – I’ll have no doubt that I made the correct decision. But even if that takes longer than I expect, or if I have to seek treatment for erectile dysfunction, I don’t see that the alternative – not having surgery – is an option that I could have considered. I want to live into at least my 70’s, and my prostrate had other ideas. We voted, and the prostrate lost…..
Re: discovery to post-op - observations - de Vinci
Thanks for the post. My DaVinci surgery will be April 13, and your comments are helpful. A friend reported similar experience to yours with the exception of constipation rather than the "runs." I suspect that was due to his using pain meds and you throwing yours away. Benefits and detractions from both approaches, I guess! Impressive that you are working out already and without pads! Congratulations. Downside is that it is typical to lose some penile length permanently for the reason you gave.
Did your doc also test lymph nodes?
One suggestion. There is a newer PSA test that measures another ingredient (not free PSA). It is considered by many to be a predictor of the probability of recurrence, and it can only be measured the first time a PSA is taken after the surgery. You may want to consider that. Also, it is becoming more standard for post op patients to begin taking Viagra or something similar immediately after surgery. This is not to obtain an erection but to increase blood flow to the region since the absence of normal flow is now a known factor in the length of time for recovery of potency and a determinant of whether it occurs at all. I will begin taking it immediately, have lymph nodes tested, and request the new PSA test. Like you, I want it OUT. Ideally, it will not be treatment but cure!
Re: discovery to post-op - observations - de Vinci
Did my doctor also check my lymph nodes?
No he didn’t. We discussed this and a few other things in advance of the surgery as possible actions that, at his discretion, he might want to do. So, as part of my pre-op paperwork, I gave him permission to do quite a number of this, including dissection of lymph nodes and the installation of a “bladder sling” – designed to give me better control if needed. In both of these cases, he decided against the additional work.
I agree entirely with the sling decision – I’m doing fine without it.
At the moment, I’m less comfortable with the lymph node decision. His take is that he thought that there was a low probability that any cancer had moved there – based on his on the fly assessment of both my prostrate and the way the lymph nodes looked. In his mind, better to leave them alone and let them do their job. In retrospect, I had more extensive cancer in the prostrate than anyone suspected – but still not obviously out of control or anything. So in my mind, I would feel better just knowing more information. With no follow-up PSA yet, I’m looking for hints that I’M cured.
So my angst is emotional – I want answers – NOW (or at least as soon as possible). His decision was based on his assessment of what was best for my long-term health, weighed against the potential risk of missing something important (which he obviously thought was low). He has a little more experience with all this, and he has a lot more patience than I do…
Thanks for the info about the new PSA tests - and we'lll be starting talks about my impotence in a couple of weeks - I hope.