THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.
Having found your site at the beginning of this journey and as things progressed with initial diagnosis on Jan.25,2008 the testimonials, like many men before me it was a well stream of comfort and knowledge. Now that I am joining the fraternity (unwilling of course) I feel responsible to share my PC experience.
Like everyone on this site the reality of cancer is the most difficult life drama one can go through. The thought of your mortality staring back at you is very sobering. The roller coaster ride from day to day wears you down, your emotions run their full range up and down. You look at all that you have accomplished and doubt if it was worth it since this might be the final act and it's curtains!? Thankfully this web site gave me comfort and like others before me went through everything I was going through.
First was deciding who and where to have the robotic surgery done. Early on I had contemplated have conformal radiation in California but eventually wised up to surgery and having the offending organ removed. I sent some emails and almost immediately got a response from Dr. Patel's office in Orlando, Fl. I had read some good things about him and that he done over 2000 operations, so it didn't take long to decide on him. I was lucky enough to get scheduled in only six weeks time from biopsy. Surgery was done on Feb.26,2008 and lasted about two hours I was in recovery till around 1:30.
When I came to my wife and sister were standing there to greet me back into the land of the living. My wife told me Dr. Patel came out after the surgery to give us the good news that all went well(except for some extra fat and veins covering the prostate which made it a little difficult) everything else went good and that the prostate looked free of cancer from the outside.
The hospital staff at Florida Hospital were fantastic and I was admitted into my private room for the start of my recovery. I had some trouble coming out of the anaesthesia which lingered for fourteen hours and had trouble walking the first night. The following day things were a lot better and I walked. There was considerable soreness and it was difficult to get out of bed. But the theme to remember is that with each day it gets better, which still holds true a week and a half after surgery.
My urine output was an issue the second day before release from the hospital and almost kept me there another night. But things improved and I was released to go to our hotel across the highway that afternoon. At this point in my testimonial I must pay tribute to my wife, like most any man who is married and gone through this my wife was an angel and my strength throughout this ordeal!!! She (without complaining) waited on me hand and foot day after day and put up with my sour moods. I love her dearly more than ever before. The real blessing in my life besides surviving cancer so far is having Karen in my life. I'm still living with some doubt about my cancer but it's reassuring to know this lady is walking beside me.
The following six days at the hotel were allot of routine stuff and getting a little better each day. It took three days to pass gas (I almost cried) and four days to have a bowel movement. You don't appreciate these simple bodily functions until they are gone. On the six day I got up actually felt almost normal except for the soreness around the stitches and deep in my gut. We went to the hospital and I had a cystogram done to check if the bladder could do it's job and had my catheter taken out and immediately found out that I was continent. A big step towards recovery and getting back to semi normal life.
Dr. Patel came by and in his calm and confident manner went over the pathology report. Those beautiful words I had waited for; negative margins, organ contained. Gleason score was bumped up, primary number remained 3 but the secondary number went up to 4. This is still considered low risk for recurrence. Cancer was bilateral instead of on one side. Also there was perineural invasion which brought me back down to earth. Dr. Patel looked me straight in the face and said this was all good and that for me not to worry. I still have some doubts in my mind about this and intend to talk with him further about this issue. The word "invasion" is not a word I can dismiss lightly. [The question of perineural invasion was discussed on the Yana Forum in February 2008. Studies presented indicated that perineural invasion was not predictive of treatment failure.]
But all in all I feel confident as I go forward with my life and now like many who travel this bumpy road I must look towards the next obstacle which is the first post surgery PSA test in three months. I am back home and getting ready to go back to work next week. I am to start Cialis next week and will see how that works. My continence is pretty good just a little spurt before I can aim it into the toilet sometimes when I haven't gone for a while and getting up several times a night. But everyone going through this must have the same mantra...PATIENCE. Each day is better then the previous and just happy to have the cancer out and possibility of being free of it.
I will update as I can and hope everyone in this unfortunate fraternity has a successful outcome in their shared struggle with our disease. Good luck to all and high spirits and low PSA's!!!!!!!!!!!!!!!!!!!!!!!!!!!!
It's been a while since posting my story...since my surgery I'm back at work and as my business slows down I'll take the time to update. I've had two PSAs and both thankfully were .00 I'm not sure which generation blood test was used and it probably doesn't matter.
My continence is excellent with just an occasional leak and my ED is slowly resolving itself with tremendous support from my wife. Like everyone fighting PC I have to endure the anxiety every three months waiting to find out the results of the test. I read that the first 10 months to a year is crucial as to the aggressiveness of a reccurence. Lord only knows if there was one tiny speck of cancer that was left. I'm sure everyone facing this deals with it in a similar fashion - a person can't worry every day about cancer coming back. Most of us have to feel we've beat it and be in a positive mindset that it won't come back.
So far so good!! Good luck to all!!
As of Nov.4th my nine month PSA was 0.00, a wonderful relief. It's like we have to go through the anxiety all over again just before the test results are revealed. I suppose this will just have to be a part of life from here on. Maybe by year three I can begin to fully relax. (maybe)
Incontinence was never much of an issue but I'm still having ED issues. Dr. Patel told me just after surgery that it was a difficult surgery and there was extra fat and veins to contend with so maybe that is part of why I'm having difficulty with erections. Getting them is no problem, maintaining them through intercourse is difficult. I just ordered a vacuum erection device and will try it.
All in all just happy to have my PSA's so low. Hope everyone out there has good luck with whatever they're confronted with and keep the faith!!!!
Feb. 10,2009 My wife just called and got the good news that my four month PSA; test was 0.0!! That's all I need to say!! One year has almost pasted since my surgery and I like many out there still must go through the three or four month stress test. Not to complain I know many out there have to go through secondary treatment and I've been lucky so far to avoid that. My ED issues continue-my doctor wants to start me on injections, but I'm reluctant. I had hoped that in time my functions would return so I wouldn't have to go to the extreme measures. Maybe it takes longer for some of us to heal completely-or it's the other issues; limbido, health issues, or post surgery problems. I'm fifty seven so who knows? Good luck everyone!
Gary
PS: This is not an update rather I'm editing my last one. It seems I had a few drinks before I sat down to do my update and it seems I had trouble with a word. Initially I was embarrassed, but the following morning it was funny. The word I was wanting to use was "libido" instead of "limbido" - maybe I accidentally invented a new sexy Latin dance. Hope this made you all laugh.
Good luck everyone!
I just received my fifteen month PSA results and thankfully I'm still showing zero's.
Every three or four months our lives have a dramatic pause as a simple blood test takes center stage. I understand why some who posted their stories then vacate the site to get on with living. Once our initial treatment is finished, and a year or two passes, the desire to put this awful chapter in arears is more compelling than doing continual updates. The reality of cancer is unpleasant and once we start to think we've dodged the bullet and may be actually free of any cancerous cells then the tendency would be to not want reminders of what we all are going through. Personally I will try to update as long as possible or as long as this site remains.
On other issues, my continence has always been excellent and my ED issues are slowly getting better. For some unknown reason at twelve and thirteen months I noticed more feeling and firmness in my erections. I'm still not having erections that last for the length of time I'd like but any improvement is great. I read somewhere that nineteen months is the outer limits to expect improvements. But most topics you read about whether medical or physiological, there are contradictions and debate from different sides as to it's validity.
Another example of differing opinions is one concerning vitamin or mineral supplements, especially if you still have your prostate. For us who don't have a prostate the thought of feeding just one cancer cell or thousand is the same, no one wants to speed things up on the cellular level. So when experts take differing views on the same issue who do you trust? Like so many issues we must trust our instincts and hope for the best. Recently my family doctor suggested I start taking a calcium citrate and magnesium supplement for other health issues. And there are varying opinions if these minerals are helpful or a hinderance to recurrence.
Well I'll close this entry and wish everyone good luck and successful journey whichever path you take.
Gary
Twenty months have elapsed since my surgery and my wife called for my (our) PSA test results. Thankfully it was all zeros, so the anxiety has abated for another four months.
Continence has always been excellent, but the ED issues continue. Patience is the constant theme. I may try the Muse transeutheral suppository, but still reluctant to go to those extremes. Getting erections isn't too difficult - keeping them is the problem. But with my PSA's where they are at - what's there to complain about?
Good luck everyone!!
Well, it is now two years from surgery and my wife called the urologist for my PSA result. We were elated to hear it has remained undetectable so far. I feel for those out there who have not been as fortunate as I have, and hope things will improve for you.
My continence has been very good, but the ED issues have failed to improve. I stopped taking the free samples of Cialis my urologist had been giving me. I now have ordered the Muse suppository (500) and hope for some success with it.
My wife continues to be a pillar of support and has never complained about these less important side issues. I'm very lucky to have her.
Gary
Just had my 27 month PSA and it came 0.01,which was a little troublesome even if the nurse said it was still undetectable.
I'm familiar with other Yana members and their PSA scores and know these numbers can fluctuate. Still after over two years of just zero's it does get your attention. Only time will tell!
Good luck everyone in your battle.
Just got my blood results back and my PSA is still holding at 0.01. Just out of curiosity when I had my regular annual bloodwork done I had them do the PSA and it came back 0.007. I guess the numbers will fluctuate day to day and week to week for as long as we live. Thankfully it's remained as low as it has as I approach three years since surgery.
ED issues, like many of you out there, remains a problem. The lack of potency (or I should say, a functioning tool) to successfully perform for our partners is a major issue we all must face. Thankfully for me my wife is still very supportive and takes all this in stride. To have some sense of normalcy we just have to be a little more creative and satisfy each other the best way we can. Keeping in mind being cancer-free is all that really matters.
Good luck everyone!!
As of February 7, 2011 my PSA remained at zero... thankfully. February 26, will be officially three years since surgery.
I hope all of you out there have similar results.
Gary
Hello again, to all who find the time to read these entries.
My recent PSA test showed all zeros, thankfully it has remained at that level so far. I hope all who are in their personal struggle find peace through the knowledge this site can bring to them, and the strength from knowing that others have gone down this path before us.
Good luck and low numbers!!!!!!!!!!
Gary
February 2012 will mark my fourth year since pc surgery and thankfully my numbers remain 0's. My doctor on last visit changed my PSA bloodwork to every six months, which as everyone on this site knows is another great milestone to cross on this unfortunate journey.
My ED issues persist, but for my wife and I the greater concern is the chance of reoccurence. Good luck to everyone with your personal struggles, thanks again Terry for all the good work you've done for us poor blokes!!
Gary.
My last PSA was in June and thankfully remained at 0. I've stopped going to my urologist for now, and my primary doctor ordered the test along with my routine bloodwork. I'm nearing five years so I figured I'd combine all my tests at one time. I'm trying not to be superstitious about it though. Good luck to everyone!! Gary Powell
It's been a year since my last update. I'm fortunate that my numbers stay low and now I'm outside the five year threshold, which I am very thankful for. Things are ok on the other issues. Hope the best for all those out there fighting your individual battles.
Gary's e-mail address is: kg5161 AT knology.net (replace "AT" with "@")
NOTE: Gary has not updated his story for more than 15 months, so you may not receive any response from him.
