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This is a letter to a friend I've known since 1972(!), who had already signed up for a prostatectomy, but in the eleventh hour was having second thoughts, since he had secured something like five opinions. Some had recommended short term INTENSIVE radiation (whatever that is). He also had been told by one doctor...maybe he didn't have a Gleason score of 8; rather a Gleason 7; 4+3. The surgeons recommended surgery, the radiology oncologists wanted to do radiation. The dialog below is strictly my opinion and experiences. I'm a layman and this is not intended as a substitute for qualified medical advice. My friend wanted advice and what it was like post-surgery. Names were removed...
...Sorry you're having to go through all this. This is a hodgepodge of thoughts: I spent plenty of sleepless nights trying to figure out what to do. In fact, I think I waited too long via active surveillance, since the cancer started spreading into the nerves and I had to sacrifice half of them, and am lucky I didn't have a worse outcome.
I don't want you to base your decision on my opinion, but I'd go for the surgery and I know it's a tough thing to decide! As you know from my case, if you get any kind of recurrence, you will be in a tight spot with few options. And the surgery choice is more likely to bring a cure and they can get in there and more thoroughly check tissue margins to see where the cancer ends. Radiation was too inexact for my liking as a first treatment...only OK for salvage if the cancer comes back at all (my opinion). I'd be concerned about "high intensity" doses of radiation as you mentioned...more concern about cooking organs, leaving you potential incontinence issues....even the bowels! I had to make sure my bladder was nearly 100% full to the point of pain to prevent bladder/lower intestine damage...and that's with a lower intensity 37 doses.
I think a lot of men go for radiation to try and preserve their manhood/sexual function. And radiation is theoretically easy/peasy compared with surgery or so it would seem.
As for surgery after-effects; I had significant bruising in the abdominal area that went away several weeks later. I had groin pain that I dealt with mostly with Tylenol or prescription ibuprofen (surprised this was prescribed as you'd think this would cause bleeding). The pain wasn't as bad as expected where the laparoscopic ports were. There was an issue with one of the ports being at the level of my waist...being irritated by waist bands.
I was kept in the hospital one night; wish it had been two, as I was weak. I had mild nausea that night, controlled by sips of water. I ate a "hearty" breakfast the next morning. Coming home, every bump in the road hurt, and I felt light-headed.
Post surgery, I was completely urinary incontinent, and had to wear a catheter. The catheter also is needed as the urethra/ureter(?) has to heal. The catheter started burning like hell about a week or so post surgery, so I was worried about a urinary tract infection....no infection, but the thing was removed anyway (can't remember: two-weeks?). I had to stand in the bathtub(!) when changing out the urine bag because urine would shoot out uncontrollably. Then I had to wear adult diapers, that within a month or so dropped to a pad (I wore women's pads for a few weeks as there could be a small amount of leakage), until the Kegel exercises (you heard of those?) started working.
I occupied a recliner in our 3rd bedroom....no way I could lay in bed: too uncomfortable.
Some details: I ordered new catheter bags rather than washing out (yuk) used ones. I also wore the nighttime (vs. daytime) bag all the time because the daytime bag was so small. I only wore the daytime bag to the doctor's office because it's tied to the leg. The nighttime bag had to be hung wherever I was ...online people suggested a five gallon bucket. The catheter was inserted in such an angle I had to watch how I sat to avoid discomfort. I had to have really baggy shorts/exercise pants or hospital gowns (at home; we ordered a few) to accommodate the catheter hanging out. Having a bowel movement was difficult and I would end up hovering because it was painful to have the catheter stabbing at me when sitting on the toilet.
Sure this all sounds hellish, but it was short-term (for me) really just a few weeks. I've read of other men having fewer issues post surgery than I had.
Long term, I'm not incontinent, but I think I have to go #1 more frequently than I used to. If I hard-cough/sneeze sometimes I get a few drops leaked. I'm also not incontinent bowel-wise; since the radiation, it seems like there is less lead time to REALLY having to go.
Graphic but realistic is what I wanted to be with the aforementioned comments...no sugar coating. I wish you a great outcome regardless of your final decision on treatment!
Bill:
Thank you for sharing your PCa history with those of us who contiue to participate on the "You Are Not
Alone Prostate Cancer Site"
Your history may well help other PCa Warriors make the tough decision.
Best wishes.
Don O,
