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Pos. Margin and lastest PSA

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Posted 9/13/2012 7:09 PM (GMT 0)
         Now 4 1/2 years out and still a non-detectable PSA.   I had a Pos. Margin in lenght of about 3/8 of an inch.  I was a gleason 6 before and after robotic surgery, done in Albany, NY.   My PSA at surgery was 2.8.  Just want those who have had the unpleasant experience of of a post surgery report of a posive margin to still have some hope....

     Any other Positive margin stories out there ???   Wishing all here the very best.......

Posted 9/13/2012 7:38 PM (GMT 0)
Thanks for posting, Woodstock.

I had my surgery in June of 2011, which puts me at 15 months out as of this writing.  Prior to my surgery, my PSA was at 4.5.

After surgery, I received the heart-breaking news that I had a positive margin and "focal" extraprostatic extension (EPE).  On the flip side, my gleason was downgraded to a 6 versus the 7 as reported by my original biopsy.

Another issue is that the pathologist gave me a pathologic staging of pT2cpN0.  However, my urologist disagrees with that finding and says that due to the postive margin / EPE, I should have been staged at pT3.

Since that time, my PSA has not exactly been undetectable.  My last two PSAs came back at .03, but I learned that the lab (Quest) had changed protocols just prior to that and that their tests now only go down to .02, so I'm hoping my results just indicate some "noise" in the testing.  My next test is later next month.  With luck, my PSA stays the same and does not show signs of further progression.  But I've already accepted the fact that I may need radiation treatment.  My doctor seems to think so.

Talk about PSA anxiety:

  • The pre-op biospy indicated gleason 7, the post-op pathologist indicated gleason 6.  So maybe I'm gleason 7, maybe I'm gleason 6.
  • Everything I've read suggests that gleason 6 rarely survives outside of the prostate, especially after surgery.  My PSA seems to suggest otherwise.  Maybe I'm one of those rare cases.
  • The post-op pathologist indicated a staging of pT2 but my urologist says that's wrong and I should be pT3.  Who is right?
  • My lab changed protocols a while back and since then my PSA results have been steady at .03.  Maybe the reading of .03 is noise, maybe it's not.

So I guess I'm sort of in a perpetual limbo with lots of "maybes".  Who knows what the future will bring.  I just wish it was definitive one way or the other.

 

Posted 9/13/2012 7:38 PM (GMT 0)
I'm a Gleason 8. I didn't have positive margin but I did have EPE. At 38 month my PSA was <.01. I'm due for a PSA test in less than one month and hope to stay in the zero club.
Posted 9/13/2012 8:00 PM (GMT 0)
Many thanks Woodstock for sharing your good news -
-I am coming up to 3 years post-surgery in November (with positive margins) and still undetectable ( knock on wood) - but clearly remember the "oh I am so sorry" and "you'll have to do radiation right away" comments from well-intentioned posters -
-it can get very scary at the start of this twilight-zone-roller-coaster PCa journey.
-wishing you many many years of zero's.
hugs,
Bronson
Posted 9/13/2012 9:00 PM (GMT 0)
didn't have positive margin, but was told I was going to after I was told it was in seminal vesicles and also because a nodule was felt that indicated cancer was no longer contained. That was 5.5 years ago, was told I had 5 years. Last PSA 3 mos ago 0.03.
Posted 9/13/2012 11:55 PM (GMT 0)
I'll be two years out from surgery in November. Me and my positive margins are still hanging in there.

Sometimes I feel like an inevitable rise in PSA is hanging over my head, but mostly I don't think about it. You've gotta enjoy the good days while they're good. Besides, 90 percent of the crap we worry about never happens.
Posted 9/14/2012 1:42 AM (GMT 0)
Yeah,

Focally + on two of the path slides. Never understood how the biopsy could be way different than post-RALP path. Anyway, hang'in in there for now, all tests so far < .01. No one knows what cards will be dealt to them next hand.

Take care,
Robert
Posted 9/14/2012 3:10 AM (GMT 0)

I was almost 6 years out from DaVici (G 3+4 and positive margin) and feeling good about my string of zeros when my regular 6 month PSA came in at .05. What a wake up call -- thougth I was cured!! Yikes, retest at 90 days and it hits .06. Gave it 120 days and it went to .07. Another 120 days and it came back at .11. Gave it another 90 days --still .11.

My urologist says based on my path report and such a long time before seeing a psa rise it is highly likely confined to the prostate bed so salvage radiation has a very good chance of success. BUT, since my quality of life has been so good, I am reluctant to screw it up any sooner than necessary. At 65 I am totally continent, have no ED issues and in excellent general condition and health. Uro says OK to wait 'til .2, maybe a bit longer if it continues to be a long DT.

The idea of nearly 3 months of daily trips to the rad center is bad enough without the possibility of all of the potential SE's from radiation. Sucks!!

Posted 9/14/2012 3:27 AM (GMT 0)
Positive margin for me also, i`m now two and a half years out from surgery and still pulling .001 honestly i`ve seen more problems it seems from guys with clean margins than us positive ones, i`m not so sure its the curse that everyone thinks it is.
Posted 9/14/2012 5:22 AM (GMT 0)
Jmon--difficult decision--books say to get radiation when around .1 to be effective..others say to just let it rise, that it won't kill most men for 10 years--a crap shoot. I had 79.2g imrt & 3 yes lupron--i'm 70 & glad to be alive
Posted 9/14/2012 11:06 AM (GMT 0)
HD_Rider,

Here's a link to a PCa staging chart from the American Cancer Society:

www.cancerstaging.org/staging/posters/prostate8.5x11.pdf

They indicate that positive margins do not elevate the grade. Rather, the indication "R1" should be added, so something like: pT2cR1N0M0. (See Note 4).

Having had positive margins with a G9, my cancer came back seven months after surgery. Being a G9, I elected to go with whole-pelvic radiation before my PSA rose higher than .03. It's almost been a year now, and I'm still "under the influence" of Lupron, so I don't expect a meaningful PSA test until another six months. Nice to have a vacation.

Nellie
Posted 9/14/2012 11:37 AM (GMT 0)
My positive margin was located at the base of the prostate which some studies indicates a higher rate of BCR. I'm 2 1/2" years out and still pulling zeros. (fingers crossed).

Norm

Posted 9/14/2012 11:43 AM (GMT 0)
G9 here with margins indeterminate and PT3 pulling 0's so far. My next psa is next week after 1 year. Doc wanted low dose ART and Rad wanted full dose. pffft-no thanks, I'll do SRT when necessary.

Good luck to us all.
Posted 9/14/2012 11:50 AM (GMT 0)
Hi Woodstock,

My experience was opposite in Albany; clean margins and seminal vessels, but rising PSA seen within 18 months. At that point, the doctor in Albany wanted to watch and wait, despite PSA more than doubling in 3 months. Lousy follow up care, left me on my own. I transferred my case to Sloan Kettering, and am being treated there. Very angry with the care I got in Albany. Best wishes to you on your good news.

NewspaperLover
Posted 9/14/2012 1:12 PM (GMT 0)
      

       It is amazing that results after surgery vary so much regardless of pre-op numbers.    I had thought that I was a surgeon dream for a great path report post-surgery.   Every surgeon wants good ED and continence after surgery to make their numbers look good.  Thus, it increases the postive margin risk...  I'm sure it is not an easy job to remove the prostate perfect.   Some of the best doctors mentioned have post here that are not very good...   The very best to all and whoever posted 97% of things never happen, maybe that's a good policy to follow.......

Posted 9/14/2012 5:17 PM (GMT 0)
Gleason 7 here with Positive margin.

My three year check up is in october.

So far no recurrance and will hopefully repeat the 0 in october.

 

Posted 9/14/2012 11:46 PM (GMT 0)
Well as you can see, I have bought about a year and a half of good QOL by not jumping into SRT at first rise. During that time it has gone from .05 to .11. Right now I'm thinking when/if I get to .2 I will pull the trigger. Maybe I can get another year -- maybe more.

Curently taking all of the anti-PCA supplements that are available in hopes of slowing it down. I may be p*ssing them all down the toilet but when your life is on the line you take the chance.

I think Woodstock is right. Many Drs. err on the side of good continence and ED results with the price being positive margins. Actually I'm not sure if I would change that since I have had near perfect QOL since my DaVinci over 7 years ago from age 58 to 65. I wouldn't have wanted to spend those years guaranteed cancer free but in diapers and limp.
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