Posted 12/2/2010 9:10 PM (GMT 0)
Good day all - I recently joined the brotherhood of men who were diagnosed with Prostate Cancer. I have been lurking on this sight for a few days and found so many of your opinions, comments and thoughts to be comforting and educational. I have been searching topics for information and finally had the courage to just go ahead an post some of the questions that I had - hoping to get some feedback.
As back ground information - my Dad was diagnosed with PC in April. As a result of his diagnosis, the surgeon encouraged my brothers and I to have our PSA test done as at our next physical, if not sooner. Primarily to start a baseline PSA score and monitor from there. My 38 year old brother took the Dr.s advice to heart and was tested and diagnosed with PC in June. My physical was in July and I had a PSA score of 10.1. We did the 3 weeks of antibiotics and tested again, the PSA score was 10.6. My DRE from my family Dr and the Urologist showed no detectable issues, but we elected to do the biopsy as a precaution. The biopsy was done in Aug and found that 12 of 12 cores showed cancer - any where from 10%-80% with a Gleason score of 7. The following CAT and Bone Scans were all negative. Reviewing our options, all 3 of us elected to have the RP using the davinci robotics. All three of us were at vastly different stages of cancer - My Dad had the "least" amount of cancer, my brother a little more - and more aggressive and I had the most and it was also very aggressive. They had nerve sparring surgery and both are recovering well. Dad's surgery was in June, brother in Sept and mine on Nov 8th.
My Dad (age 65) seemed to sail right through the surgery and recovery. Continence is returning and he is down to 1-2 pads a day as a sense of security. He is back to golfing and for all intents and purposes, his life has returned to "normal". My brother (age 38) is recovering well. He is a very impatient person and an over achiever. He is already back to his 5 nights a week at the bar, bowling, etc. In my opinion, not understanding the need for your body to heal and take things easy. He did have a bought of bladder spasms after the catheter was taken out, but they were controlled with Vesicare once a day for 10 days and he has had no issues since.
As for me - I had my surgery on Nov 8th, the catheter was removed on Nov 18th. Over the next week I suffered and occasional bladder spasm - generally first thing in the morning. The pain was excruciating and would last up to 2 hours. My Surgeon had prescribed Santicort for the spasms and after the first one of the day, I would be fine the rest of the day. They would be triggered either by emptying the bladder - or just rolling over in bed. On Friday the 26th, I started my day with a bladder spasm, triggered when I stood up when I got out of bed. 2 hours later the pain subsided. I went to the bathroom, urinated and BAM, another spasm for 2 hours. These spasms lasted all day long. If I moved, stood up, urinated - it would cause a spasm. The pain would radiate all the way up and into my chest, my back and sides. I contacted my Dr and he changed my anti-spasm medication to Ditropan. I suffered through all of Friday hoping that the change in medication would help - no such luck. I called the on call Dr on Sat and he instructed me to go to the ER and he would meet us there.
Once in the ER they reinstered the catheter and juiced me up on morphine. Within an hour I had put out 300ml of urine through the foley and the pain had subsided. I had blood work done and the results showed that I was in "acute renal failure". They then sent me for an Ultra Sound which showed my abdomen was full of fluid. They suspected a tear or a hole in the bladder and admitted me for observation for 2 days. Within 24 hours, my kidney function had returned to normal and with the help of the foley, I was putting out a lot of fluid with no spasm.
Sorry for the long story to get to the questions, but felt background info was important.
1) The catheter is due to come out on Dec 9. I am terrified that it will lead to additional spasm. Anyone that has had similar spasm, have you had a reoccurence after the second foley was removed?
2) The catheter is no joy - as I am sure we can all atest to. Does anyone have any secrets to successfully having the catheter and walking / sitting comfortable? I actually use a Man-Pad in my sweats / shorts to help give a more "snug" feel , which reduces the amount of "rubbing".
3) For the week that I was without the catheter, I never had the feeling or urge that I had to urinate. If I stood up or sat down, I would "dribble" and thought, maybe I better try to go. Is this common as well? How long did it take for the ability to retain and feel the urge to return?
4) My surgery was not nerve sparring and the Surgeon was aggressive because the cancer was uncapsulated. The surgery did achieve a clear cut margin with no seminal vessicle involvement. Pathology gave a cancer stage of pT3c. The Dr is now talking about radiation - not if I should, but when I should. I thought that with the clear cut margin, I was home free - but now it sounds like there is still a long road left to go. What are the side affects of having radiation? The Dr said that I should wait at least 6 months before starting radiation. It becomes my choice, do I have radiation in 6 months, or do I wait until I have a detectable PSA level. Opinions?
5) Because they were not able to do nerve sparring surgery, I anticipated having issues with ED after. During the week without the catheter, I actually felt the sensation of having a semi-erection. While it was not full blown wood (not that I expected it to happen in the first 6 months to a year) I felt that it was a promising sign that there may be hope. Is most of the ED issues about having a full erection? If you have ED, are you able to achieve a semi-erection?
Thank you all for any insight, comments, thoughts, opinions, etc. This is the first place that I have read peoples comments and actually feel that people understand and are knowledgable. While I have my Dad and brother to lean on as well, the three of us could not be more different in the surgery we had, the effects of the surgery and how we progress.
Thank you again for your time. Sorry again for the long rant. =)