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Hi, Just getting started. Thanks to all before me that have shared their stories. What a great resource. I had the DaVinci surgery 3 weeks ago today, July 13, 2012. Dr. Chan was able to spare all the nerves and the pathology says that they got all the cancer. The Gleason remained the same, 3+4. I feel great and will go back to my mostly desk job at a cabinet shop in 2 days.
It's only been a three weeks, so I can't say alot, other than the recovery has been pretty smooth. Regarding incontinence, I'm dealing with dribbles. I had three 5 oz. glasses of wine last night, and while my bladder wasn't full, I was much less able to kegel off the dribbles.
Regarding recent discussions at the national level about the relevance of the PSA test, I'm all for it. If PC doesn't get me, it will be because of God's mercy in the form of a PSA test. My first post surgery PSA is in a couple weeks.
I have gotten back the results of my first post-op PSA...0. Thank the Lord. Now a whole bunch more 0's to work on. It's 7 weeks past surgery. Still have some incontinence, say about a teaspoon a day. It's a little worse if I am physically active. Some ED. "Everything" works but not back to pre-op levels, but hey, it's only been 7 weeks.
The doctor's regular post-op treatment is Viagra and the pump. Just started the Viagra and will talk to the pump representative this week. What is great is that at the moment I am double covered by my insurance and my wife's. Before PCa, I didn't want to know anything about prostates and Viagra, so this is all new stuff. It will be nice when "my favorite member" returns to more normal.
I got the lab report on my second post surgery PSA at 4 months out. It is .1. I was concerned because my first post surgery PSA was <0.1. My doctor assured me that for now, I am still in the "cure zone". This made this Thanksgiving a little brighter.
My next PSA is early February 2013 I think. I am a believing Christian, and I like Psalms 23. Verses 1-3 tell of His good care and then you get to verse 4 that talks of the valley of the shadow of death. If He led you for good from verse 1-3, He led you to verse 4 also and it is no time to quit trusting that you are in His hands, and I intend to do just that, whatever my next PSA says. I am pleased to be His 'sheep'.
Okay, I have very small incontinence occurrences, that require no special protection and don't go past the double cover of my standard jockey shorts. The doctor says to keep up the kegels. It does seem to help. Active and/or stressful days seem to be the worst, but still no embarrassment issues at all. This is nice. It's probably been at least 2 months now with no pee-pad inserts.
Erectile dysfunction - it's becoming less of an issue. My wife is a great team member in attitude, encouragement and action. I'm leaving that there. Viagra is helpful for sure, but we are able to make each other happy the normal way, with or without Viagra. I'm learning way more about sex than I planned to, but not as much I have wonderings about. (such as, with no prostate gland, to still have pleasurable feelings with no emissions - that's bizarre.) The doctor has me doing penis rehab with a vacuum device. I'm not so crazy about that, but he says recovery will be quicker and more complete. My wife does not like vacuum enhanced erections, so I don't use the rings. The doctor has me on 50mg of Viagra 3 times a week, with or without sex.
(I listed "other" under my sub-treatment because I don't know.) Spring 2013 my surgery urologist who did my robotic laparoscopic prostatectomy who had been saying that as long as my PSA stayed at .1 or lower, I was good to go) said that new information pointed out that men who had an ongoing .1 PSA (I had been .1 for 9 month), sometimes had improved outlooks if they had followup radiation treatments. It has been my inward determination that I will work to do the things that will give me the best outlook, so I told him "to hook me up please". I did 39 treatments from 7/11/13-9/6/13. My 2 main complaints have been fatigue and bowel irregularities.
BOWEL IRREGULARITY: They say that prostate radiation usually causes diarrhea BUT not me - I had bad constipation and bloating. It's been 4 months since radiation ended and I still have some irregularity and bloating, but much better than during treatment.
FATIGUE: As to the fatigue, for those (which I was one of) who are unfamiliar with the kind of fatigue that they are talking about, it really has nothing to do with sleepiness. It is a similar feeling to what you would feel like if you overworked in the hot sun a bit too long and just not a good feeling deep inside. And - the leading edge of it, my eyes feel dry and tired like I worked long into the night - and this usually happens early in the day, even now. I still have some fatigue but it does not go "deep" anymore and I am not sidelined for a day at a time. To put this in perspective, I maintained a full-time desk job in a cabinet shop during my treatment with no time off at all - so while if felt significant, it was not devastating as some treatments can be. It mostly affected after work activities.
I've been very fortunate and blessed by the absence of other side effects. Except for stray dribble, say when I fart, I am continent. Erections work good :-) and with Viagra they are GREAT :-) :-) :-).
My first follow-up after radiation was at 2 months and my PSA stayed at .1, but I understand that radiation results aren't as instant as surgery, so I anticipate that my PSA may go down. My next appointment/PSA will be in March 2014.
I welcome and comments and questions. All of this stuff was horrendous to consider before I was diagnosed, but now it's like...whatever... My doctor still likes to check my backend for symptoms of colon issue,.... so even a prostatectomy didn't get me out of the yearly "magic finger"....ugh..
God Bless. For me, I am a Christian believer and if you would like someone extra on your prayer team, just let me know.
Since radiation in 2013 my PSA has remained at <0.1. I feel that the side effects of radiation are longer lasting than the medical people believe. Things keep getting better, but I still feel that I get minor fatigue and have bowel issues that did not start until radiation. With that said though, I would do it all over again. We have had other family & job stress things going on too which could account for some of it - but I get this warm tired eye thing that pops up.
In the last couple months I have quit the Viagra. Things work almost as good as before surgery and pretty much as good as with Viagra - say 85-90% of pre-surgery. I am one of the fortunate ones for sure.
Things are mostly good. Thankful to God. 3 years ago right now I was in the midst of 39 radiation treatments (I'm not sure which version - sorry) and the year before that I had a laparoscopic robotic prostatectomy. The radiation folks said a typical side effect is diareaha but I went the other way - constipation and bloating - what I feel was severe - but maybe I'm a wuss?... Anyways, that has gotten much better. I do take a probiotic and a fish oil daily along with a teaspoon of ground flax seed. I mix the flax with orange juice - this is awesome - it's much better than Metamucil and healthier too I hear. Fatigue issues have pretty much totally gone away - yay!!!
In the last month or so I had a disturbing event. I went to pee and for a moment nothing was coming - and I always, always pee freely. Anyways when it did come, it was a big red splat in the urinal followed by a short stream of blood. I had been dehydrated from having the flu that week. My regular doctor was not in and her office told me that I should go right away to urgent care. They had me give a urine sample that looked like a glass of Merlot (can you tell that I get into telling this story ;-) ). The did find a urinary tract infection for which the prescribed chepha...something. Later that night I passed one more clot - since then I have been clear. They said that I should follow up with my urologist which I am doing in a couple weeks. In looking around the internet, it looks like this can be a side effect of radiation therapy - a thinning of the bladder walls and blood vessels that allows blood to leak. I will follow it through to make sure that it's not something else bad like bladder cancer.
Everything else is about as good as someone could hope for. The sex part is working pretty darn good. I would say 75% - 95% of pre-surgery - depending on the day. I feel very, very fortunate about this.
Wally's e-mail address is: wallyanonymous AT gmail.com (replace "AT" with "@")
NOTE: Wally has not updated his story for more than 15 months, so you may not receive any response from him.