"Rinky" What are your stats? Surgery in 1996 makes you 15 years out.

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ChrisR
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Date Joined Apr 2008
Total Posts : 832
   Posted 1/31/2011 6:48 AM (GMT -6)   
Rinky,
 
I noticed you said you had surgery back in 1996.  That makes you 15 years out.  Would you share your story with us?
 
Gleason score, post op. What has been your PSA history and have you had any follow up treatment.
 
As you know there is a lot of talk here about long term stats.  Just curious about yours.
 
Thanks

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 1/31/2011 7:27 AM (GMT -6)   
I know another guy whom is now 11 yrs. out from surgery, probably is he doesn't know or remember his exact stats, he is undetectable and appears maybe cured. Back then too Gleason scoring was even with lower thresholds as 2+2=4 even existed as a combined score.

Guys were not as informed as they can be now, people didn't all have a stats list necessarily like we see now. Some of the pathology opinions were even written down in sentences and paragraphs, very abstract like reading an opinion on a novel. It was a little different is the point. But, naturally anything we can learn from gleening over that kind of evidence is worthwhile.

Post Edited (zufus) : 1/31/2011 5:35:04 AM (GMT-7)


Rinky
New Member


Date Joined Nov 2010
Total Posts : 14
   Posted 2/1/2011 10:33 AM (GMT -6)   
 I, like the person mentioned above, don't know all the stats/scores, back than if was never offered or mentioned just the PSA number was given!
 

It was 1995 and I was 47 and getting my first ever full physical.  I had heard about PSA tests and asked if they would do that too and they said “we usually don’t if you under 50 with no family history but ok”.  It came back 4.35 and they decided to biopsy and it was negative.   The doc said let’s recheck in 6 months, when I went back it was 4.95 and they again biopsied and again negative.  He said “you may just have a high normal PSA let’s check in a year”.   When I went back a year later my PSA was 10.00 and they said they found one sample showed cancer.   After much soul searching, since there wasn’t near the info there is now and the results for incontinence and impotency were high, I waited 3 months.  My doctor called and said “a lot of good an erection is going to do you if you’re dead!”  and I said “I’d rather be dead if can’t get an erection!” (remember this was before Viagra came out!  He put me on Lupron for 6 weeks as I said I had a ski trip coming up I didn’t want to miss and he said he didn’t want to risk the cancer spreading….that was possibly the worse experience of my whole time! The Hot Flashes! Yikes! Lol

On March 26th 1996 I had a radical prostatectomy done and got out of the hospital 3 days later.   I had the catheter in for 3 weeks and that was it.   I was incontinent for a total of 9 days after and than no problem.   My Doc attributed that to me being younger than most guys who had gone thru the surgery, and the surgeon I used at the time had done over 1000 surgeries.   I decided I was going to be normal and told everyone of my close friends that the first morning I woke up with a “hardon” we would be going out celebrating at the bar… May 1st 6 weeks later we went out!  I returned to normal sex life at that point.   My surgeon said of the 1000+ procedures that he had done I was his Number one success story! 

It’s only been in the last year when I have experienced some problems with erections , not all the time, but I can’t count on it, sometimes it’s just like when I was 25 and pointing straight up and sometimes not!  so I started with Viagra and it works for me, but my doc mentioned Trimix and I have tried it.  Both work but with Viagra it seems to last all  night….I can have sex at 11:00 pm and again at 7:00 a.m. and I can tell it’s still working on me!

I didn’t go back in to have my PSA checked until the 5 year mark, as I didn’t want to know if It had come back as there wasn’t much more they could do and I was stubborn about having anything else done to me.   At the five year anniversary I went in and my PSA was  .5 , it was checked again at the 10 yr. mark and still at .5    Since I am now approaching the 15 yr mark I don’t know that I will check,  I feel great, no incontinence or leaking ever since 9 days after the catheter came out.

Btw, I am in the medical profession and was able to check out surgeons back than and went with  a community surgeon with no “National Reputation” but who had 5 of his patients call me to answer questions I had before doing the surgery.  That helped considerably.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/1/2011 11:44 AM (GMT -6)   
Guys were not as informed as they can be now

Generally true. The superhighway has made great strides. Back around and before Rinky was diagnosed information on prostate cancer, like everything else, was marginal on the web. It was live support groups that you had to get peer to peer information from. And no I don't know this because I was there, ~ my predecessor at our UsTOO chapter ~ Lew Musgrove ~ filled me in. There are others just like him like Ralph Valle who recently joined this forum, Chuck Maack, Harry Pinchot, Howard Hansen, and ladies like Kathy Meade and Judy Thurman ~ etc. All of these men, and women, and others, had been improving the internet information on prostate cancer and sharing their stories for guys like me. And I thank them from the bottom of my heart.


Great story from Rinky as well. Thank you for coming and sharing...

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/17/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

ChrisR
Veteran Member


Date Joined Apr 2008
Total Posts : 832
   Posted 2/1/2011 11:46 AM (GMT -6)   
That was quite a story. Do you remember gleason scores and your post surgery stage? Hovering at .5 is pretty cool.
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