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I was a false negative,ie PSA never went up and was about 1.9 for several years. I was diagnosed via rectal/biopsy and two months ago had robotic prostatectomy. Was Gleason7(4 3)/extracapsular extension but margins "clear". My PSA has gone to negligible. I do not trust the PSA test for evidence of a recurrence. Would like to know suggestions and others experience with false negative PSA's.
John,
Others may grasp your intention more easily, but your post is not entirely clear to me. Here's what I gathered.
It looks like you were diagnosed with prostate cancer even though there was no indication of such in your PSA readings. And you are curious if others have had a similar experience.
Now you have had surgery, and the pathology report indicated extracapsular extension but all margins were clear. And you are probably scheduled for periodic PSA tests in the future to determine if you are remaining free of any possible recurrence. In case any cancer cells might have escaped the surgery. Given that your PSA did not initially indicate cancer you remain suspicious of the value of PSA tests in the future.
As far as going forward, I would think the key is what your surgeon suggests as well as his explanation of what has occurred so far. But maybe others have had a similar history and can share it, as good background for you.
First of all, John if your PSA has gone to negligible, just allow yourself to be happy and relax.
But I know what you mean about not trusting it. I was PSA 2.64 before my TURP operation in Novemebr 2006. As a result of biopsies during that op, small amounts of cancer at Gleason 3 3 were discovered.
But 3 months later, whilst I was watching and waiting my PSA went down to 0.99 - yet I knew I had cancer. It then went to 1.18 and then 1.75, which is when I decided on the Da Vinci.
The Da Vinci failed to remove all the prostate and the 6 grams of tissue I am left with gives off a PSA of between 0.76 and 0.81. (Let's round that to 0.8).
I have had 2 sequential,differentiated "Rolls Royce" MRI's and 3 urologists tell me that the PSA seems to be consistent and to do nothing yet. They are fairly sure my tissue is benign tissue behind the bladder neck. Eventually I will probably go in for prostate mapping, but just now I am intervention averse!
My cancer discovered on prostate removal was small at 0.3cc volume, with a good pathology. (No spread, etc.). One of my urologists says I may be the guy who didn't need the op at all. (Nice to know that now!!)
The point of my story for you, is that my PSA unlike yours, never went to zero, although it was always low. You on the other hand seem to have had a succesful op, with good post operative pathology. But like me, you will have to watch the PSA as a sequence, not just a one off number.
It's great for now that it's zero. It will still be great even if it goes up a little. The problem will be if it keeps going up, or even if it goes up AND down. In other words watch for volatility.
I am going to the oncologist today. I am still thinking about radiation. I would like to find out if radiation is as effective when you have rising PSA(metastases present) or if you do it directly after surgery when PSA is negligible!? I have not found a study like this.
John,
There are several studies in recent years that were designed to answer your question. And there are many followup analyses of the data in these studies, in an attempt to further refine the conclusions. Here is one URL:
http://oncology.researchtoday.net/archive/2/7/154.htm
