One-year out from Surgery

It's hard to believe, that I am now one year out from my open Surgery  (Actual date: 11/14/8), but it was on a Friday.

I have learned so very much about pc in the last year, mostly from the good folks here.  I thought I was well read on the subject a year ago, but many lessons have been learned.

It's been a journey of good and bad, a mixed bag as they would say.

Good - the surgery itself, still feel my surgeon did the best job he could, I do not blame him for my one positive margin.

Good - the pathology started out good, and I thought  I would be safe for years.

Good - the first post surgery PSA got me in the zero club

Bad - hard to believe that I have been on 9 different catheters since a year ago, total cath time today is 145 days, been on the SP now for 44 days.

Bad - needing 3 corrective surgeries on the bladder neck to urethra connection, and still having issues, thus the SP

Bad - bladder spasms - easily over a thousand or more since Ive started this journey, all because of lengthy cath time, never get use to them, a good one can still make this old buzzard tear up in pain

Bad- getting kicked out of the zero club after my grand entrance.

Bad - going through SRT  (still in progress), something I never wanted to do or deal with again in my life time, famous last words from 10 years ago.  Its been rough on me as you know

Bad - PSA velocity, pay close attention to this subject:  especially newly dx guys or guys suspicous of having PC

Good - the advice, support, friendships, etc I have gleaned from my brothers/sisters here at HW.  Thank you Peter for having such an awesome web site.  Thank you moderators, for keeping us from killing off each other like a bunch of prissy school girls at times

Good - so far, even being unemployed for 19 months, between my former health insurance and my wife's picking me up with pre-existing conditions, been virtually no money paid out of pocket so far for all these medical expenses.

Thanks - to Dr. Ronald Smith  (uro/surgeon) and to Dr. Wilcox (radiation oncologist), for your endless support, listening to your patient, and the level of care you show.  And to all the nurses and techs that have to put up with me.  Oops, and Dr. Richard Banks, who knows this rotten body well over the years, my GP

Also - it was one year ago today, exactly, that I quit smoking ( 1 1/2 packs a day).  Never had even a drag since, don't ever want to again, got enough wrong with me, lol.  Dont even miss it.

Just reflecting on the past year.  If they can get me to not feel like an endless patient, I will be happy in the new year.  I need two or three zeros after the SRT ,I need to be catheter free and be able to pee on my own.  Hope that's not asking too much.

David in SC

 

Thanks Bill, what a year it has been, some of its just a bad blur.

Hi David,
Thanks for sharing your reflection of the past year. We really hope you experience many more good things in the next 12 months. Your posts are always insightful and honest and we learn from them always. This is the first Christmas in 3 years we have not had to stress about a PSA test - a bit of deliberate avoidance our end however - CJ doesn't have to have one if he doesn't want one this year (onto 12 monthly tests now), so he ain't having one! Always read your comments and ideas but have little to say these days, so just a quick note to say best health wishes for the next 12 months to you, and hoping that all good and positive things are ahead. All the best from us "downunda". Lana & CJ

I like your moniker-- purgatory describes this well. I am still awaiting results of my PCA-3 test.

Question: any idea why you had to be on a catheter for so long? Did you have any inkling this would occur. I see you have had 3 biopsies. Could it be the 3 biopsies that have caused this problem.

Mel (just still learning)

Thank you, Mika, hope its uphill from here for me, least for a while.

Mel, don't feel bad, we are all learning here. My first biopsy in 2007 came up clean, despite have a PSA way over the 4.0 threshold. I never had any symptons or any other prostate problems. The second biopsy a year later in summer of 2008, came up clear for PC, but my dr. saw some suspicious shadows on the left side, and there was a lot of HGPIN showing up, high grade PIN cells (these high grade ones often turn cancerous) so he was suspicious. The third biopsy 6 weeks later hit pay dirt, he did 7 cores in the left side, and all came up cancerous.

The reason for so many catheters. Two fold. First, due to complications due to my own body quirks, they had a hard time attaching my urethra back to the bladder neck. Second, my body produces way too much scar material, and the opening at the bladder neck keeps closing up with scar. I had 3 correcting surgeries this year just to reoppen that area, but it keeps growing back and closing up.

When I needed salvage radiation, they knew the radiation treatments would swell me up even worse, so we mutally agreed to the SP catheter (suprapubic) so that I wouldn't end up in an emergency situation going through radiation. The tube exits just below and to the left of my navel. The rest of it works like a regular catheter with the bags, etc. It saves me the pain of having a catheter going through the middle of my penis as the 7 catheters before did. Have had this one for 44 days now, probably won't have it removed until early January, after the radiation ends and the chances of swelling post radiation goes away. Is this normal, heck no, been told this much complication is only found in about 4% of the cases of post surgery guys. I just didnt luck out on this one. But such it is. Hoped that helped you understand a little bit more about the complex puzzle of Prostate Cancer.

Good luck to you too

David in SC

Hey David,

Your 1 year is just about my 6 month mark.

My Good... Got a pathology from removed prostate so I know where I stand (stage III-EPE). First 3 month PSA...undetectable. Prognosis seems good for stage III, so far. No IC problems at all.

My Bad...Day before surgery, no ED. Today, ED. But, so far I am free of detectable cancer.

Keep posting your journey. I believe your SRT will succeed.

Mike

David, I'm stupider (is that a word?) than all of you. I still smoke...although not often. It's incredibly difficult and it is a physical addiction. Something I'm not proud of. Nothing has helped to break that, yet. The yet scares me. I'm no youngster anymore. Any tips...sheesh...and I work out, too. I did quit for a while after dx. Tough subject. Nasty habit. Those who haven't smoked, good for you. Those that have and quit...suggestions?

Micky, I am one of those ex smokers. My wife and I decided to quit one additional time (many tries), on New Years Day 2000. Both of us have been able to stay off the sticks. It took a long time for me to get to the point where smoke bothers me. I have no desire to ever smoke again. The only thing that worked for me was cold turkey..... and a positiive state of mind that we could do it.

Good luck on trying to consider quitting again.

Jeff T

some times  it is very hard for us as human to experience so many bad situaction in our life .it is five years for me and I myself had a very hard time with scart tissue and needed a second surgery,but eventhoug I it was hard for me,my friend had suffer incontinence

for four years.let get the faith up and many years from now you will look back at this as one more step it was needed for you to help others,that is the beauty of life. keep hanging in there and do not let anything to keep you down. 

Purg,

You have been an inspiration.  Anytime I start getting down or mentally twisted around about PCa or even other life issues I come back and read up on the board here.  I'm always uplifted by the dignity and strength which is shown here in the face of significant challenges.  Gives me strength of my own.

Keep on keepin' on.