From:
"John W. Belcher" <jwb@SPACE.MIT.EDU>
To:
PROSTATE@LISTSERV.ACOR.ORG


I had surgery to remove my prostate on February 23, 1998. I had posted that fact last Sunday, and got a fair number of people who have RP's coming up soon, asking me about the details.

So, while it is still fresh in my mind, I am going to write down what I remember of the process, and post it, for people who might find this helpful. I am sure every surgeon/hospital has different procedures, and everyone will have a different experience, but I thought this might be useful in any case. I am 54.

I had my surgery first thing Monday morning. No food from the previous Saturday night. I had been pretty nervous the week before with the operation coming up, and was not sleeping well. Was getting into thinking that if I did not sleep I would get sick and then have to postpone the operation, which made me even more nervous. I got a prescription for a mild sleeping pill which I took a few nights the week before the operation, and the night before the operation. I of course checked this out with the anesthesia people in the pre-op appointment on Friday before the Monday operation, so they knew what I was doing. They had no problems with this.

The operation started at 7:45 am, finished at 11:45 am, just the time I was expecting. This was with Dr. William deWolf at Beth Israel in Boston. Went to the recovery room for I think four hours, was up in the hospital room late afternoon. Woke up with an IV and catheter in place, not in much pain. The catheter tube went from my penis to a lot of tape on my left upper leg, where it was anchored in place by the tape. Then a connection could be made from there to the catheter bag itself. This made sure that you could not accidentally put tension on the tube running to your penis and into your bladder.

Had a self-controlled pain medicine in the IV drip, which I could control, could push a button to get some every 10 minutes, I think. Anyway, was great in terms of pain management, because I had control over it. Over all I found this much less painful that I had anticipated, based on an emergency appendectomy 15 years ago. Some of the pain then I found excruciating. In this, the pain was always tolerable, and I would never describe it as excruciating. I asked deWolf afterward if that was the general case, and he said that most of his patients had that experience.

Anyway, that first evening they had me get up and walk to the door of my room and back, and that was ok. Main problem, which I found to be true for the few weeks or so, was actually getting up and down because of the incision (runs from just under the navel to the top of the pubic bone, for RRP). Just very awkward. I had 25 metal staples (I kid you not) in the incision, I had no idea they used staples these days, but there they were.

Also walking involves dragging the IV pole and catheter bag along with you, clumsy, trailing wires all over the place. Sleep the first (and subsequent) nights was problematical, nurses in every few hours to check pulse, blood pressure, the IV, so only in cat naps.

The next couple of days are a blur, I brought in some books on tape and a tape recorder, that was a good idea, even in middle of the night I could listen to that without disturbing my roommate, if I could not sleep. They got me up walking twice on Tuesday, then three times a day Wednesday and Thursday. And with the tape you do not have to hold up a book in the hospital bed, which are not set up well for that.

Incidentally, never go into the hospital without a long distance phone card of some kind. I had brougt my phone list, but they wanted me not to bring my wallet etc., and I of course ended up with no way to make long distance calls.

No solid food until Wednesday evening, they are waiting for your digestive system to recover from the anesthesia. They let me out on Thursday late afternoon, after a brief course in catheter management. Two catheter bags, one small that can be strapped to your leg and worn under sweat pants, one large of the night. The catheter management is no big deal, get used to it fast. But I would practice sitting down if you use the small bag to get home, I had strapped it on too tightly when I was standing, when I sat down in the car to go home I ended up pulling the connection out at the top of the small bag, and leaking on myself in the car on the way home.

Getting home was great, a great relief. The major injunctions I had was to not lift anything heavier than 5-10 pounds for the next 6 weeks, to prevent hernias in the area of the incision, no driving for four weeks, no sitting on hard chairs for more than an hour at a time, when sitting to get the legs elevated to avoid blood clots. Think that was it. I was on a stool softener because they certainly do not want you to strain with bowel movements, the surgery thins the anal wall in some places, and that you do not want to stress. I did not have a bowel movement until I think Saturday after eating the first time on Wednesday. Ended up taking milk of magnesia in addition to the stool softener to try to get some movement there. The return of that function was one of the high points.

By the following Monday, a week after the operation, I was doing well enough that I went to lunch with friends at a local restaurant, with sweat pants and the small catheter bag. I sat on a "donut", a foam ring with a hole the middle, takes the pressure off of the perenium area, I would highly recommend getting this. This area is sore, still sore 3.5 weeks later, and the donut helps enormously in sitting.

Only unexpected thing in all this was that my scrotum and penis were really swollen around about Monday or Tuesday, evidently this is because they remove lymph nodes so there is fluid buildup for a few days. Went down in a few days, but was uncomfortable and disconcerting because I had not been told this would happen. And I mean really swollen, a lot of fluid.

Got the path report from the surgeon verbally over the phone a week after the surgery, that was a stress point. Still only have a verbal summary, would liked to have had the path report itself, am getting it in a few weeks. If you want it earlier I would call in before your first post-op visit and ask for a copy so they will have it ready for you to take. In any case, it was clean margins, but cancer in both lobes (biopsy had only one core out of 8 with cancer), all Gleason 6, the same grade as the biopsy. Good news. Would have preferred "a little tiny bit of cancer practically non existent" (Dr. Henk would have called this a "failed operation", I would have called it "wildly successful", depends on whose life is at stake). But I will take this. So no follow on RT, just sit and watch my PSA for the next many years. bPSA was 5.9.

That Wednesday, 10 days after the operation, I went in to have the catheter out and the stalpes out, and to see the incontinence nurse to get some instruction on the kegel exercises for bladder control. Ten days to removal of catheter is really short as far as I can see, 21 days is more standard. The upside is you get rid of the catheter, the downside is thatcontinence is not good that early. I was leaking all over the place the first few days. The removal of the catheter and the staples was almost painfree, only a little discomfort. The incontinence person hooked me up to a scope with a probe up my anus, so I could see that I was flexing the right set of muscles. She told me to do 5 sets of 6 exercises, twice a day, an exercise being 10 seconds of contraction and ten seconds relaxation. I have upped that to three times a day.

The worst night I had in terms of discomfort was that night. I had an allergic reaction when the tape on my left leg was removed (that had been anchoring the catheter), which spread to the area around my incision because the surgeon had put on some plastic strips across the incision when he removed the staples. Evidently my system had been sensitised to both of those, and I had a really itchy rash which kept me up most of the night. A call to the surgeon the next morning got me onto Benadryl and permission to remove the strips, and by that night things were more tolerable.

The incontinence is a bother, but manageable. Initally I was wearing an adult diaper all the time, now I am down to a pad (Depends is the brand I am using, you can find them in the grocery store or pharmacy) during the day, changing that about once per hour when I am in at work, and the full diaper at night, which I change once a night.

Those are the major things. I was back into work this monday, three weeks after the operation, but a full day (which I did) was way too much, I was exhausted that evening. I have cut back to half days, with a nap in the afternoon. I am told this lack of stamina will go on for a while. I should also say that my work is not very stressful, I am a professor with a lot of latitude in what I do, and I am not teaching this term, so going into work is really a way to get out of cabin fever at home. There is some stress associated with it, but not a lot.

The incontinence at work is a pain but manageable. I do not drink a lot in the morning, to cut down on the input, and change pads every hour or so. I now understand why women carry purses, as I am carrying around a gym bag with extra pads, some baby diaper wipes, baby power, an extra pair of underwear, and the first day I had an extra pair of pants in at work for accidents, turns out I needed it. But it has gotten much more polished with practice, I have sat through one two hour meeting and gave a presentation at one one hour and a half meeting, so this is doable. But it is a pain.

Also going back to work this early might not be the best idea. I was just getting antsy at home, and as I say the current job configuration for me is not high stress.

So that is it. The next biggies: get to drive next week, that feels great, still have the invalid mentality because I cannot drive. Longer term, getting out of this incontinence, a pain. And the sex thing. I had non-nerve sparing by choice, so I am impotent. But I have looked into the caverject thing, even to the point of given myself an injection with a hypo, just a saline solution, so I could see what it was like (no pain at all for me), just wanted to know what I was getting into before definitely choosing non-nerve sparing. Primary care doctor appointment in about 10 days, will see if I can get them to pay for a VED and get one of those. Wish I had started pursuing that before the operation, to cut down on the time it will take to get it. But this is ok.

Think I have covered everything, if you are going in soon and would like some other questions answered, feel free.

Cheers

John Belcher