BillyBob@388 said...
Babs83 said...
This is a good thread and something I currently have questions about. My bf had his surgery in October of 2013, Gleason 6. They are obviously doing the ultra sensitive test since his first score was .001. Last spring his score was .002 and last week .003. He is now being tested every 3 months. His doctor said they would watch it and not to worry till it got to .005 I wonder if he meant at .05? Based on what is being said in this thread, even that would seem like jumping the gun. Any input or thoughts on this matter would be helpful. We are trying not to freak out, but I can tell this has effected my BFs mental state a bit. He has had a great recovery and his ED has improved greatly. 50mg of Viagra does the trick. Since everything is back to normal, or about as close as normal could be, thinking about a recurrence is bringing us down. Thanks
Well 1st of all, his post op pathology was G6, right? And if so, most likely it was all contained, right? No +margins, SV invasion or lymph node invasion? If all of that is the case, I would not be too concerned. After all, the chances of death from PC from a G6 - regardless of all else- is exceedingly small. This is of course assuming all is correct in the reading of his post op pathology.
So what are these .001 tests called, ultra-ultra-sensitive? Undetectable is < .1 with the regular test like Smith at Vanderbilt ran on me. < .01(like my local URO's lab gives me) is called the ultra-sensitive test I suppose . Now there is even a requirement to be <.001 to be called undetectable if you use that lab?
So I could be an actual .009, being told I am undetectable because I am <.01, even though I am 9 times higher than your BFs 1st reading of .001, but he is considered detectable? Because they detected .001?
I know of studies that indicate getting to .03 means a probable future BCR(bio-chemical recurrence, which is by no means the same as metastasis and/or certain death), i.e. will very likely get above .1 or .2 in the future. I am not aware of anyone anywhere(could be wrong) who worries about
anything/considers any treatment, until we get above(or is it to?) .03. That is still 10 times what your BF has risen to. Plus, he is still a G6. So probably not yet time to panic seems to me, always time to panic later above .03. Not that you were panicking, but if you wanted to it would be better to wait until it doubles a few more times.BillyBob,
Thanks for your reply. Yes BF's biopsy and post op Gleason were both 6. These were only read by the lab which his surgeon used. We never sent any out for a second opinion, so that is what we know. I have not read his pathology report so I don't know about
+margins, SV invasion or lymph node invasion. His doctor told him after the surgery that everything was great. I wanted to read the report, but because he was told everything was great, I didn't ask about
it again. about
a year ago, he saw his doc for his checkup and the doc was about
to say, I'll see you in a year, but he changed his mind and said see you in 6 months, something about
a positive margin. My bf asked his doctor what he meant because it was the first he had heard this. His doctor kind of brushed it off and my bf actually thought the doc was looking at the wrong chart. Never the less, his doc wanted him back in 6 months. It was that check where his PSA went to .002 and the doc said it could be nothing, see you in 3 months. We just got that PSA which was .003.
Now, of course, I really want to read the pathology report, but haven't asked to see it yet. I understand what you are saying about
this Ultra-ultra psa testing. This three digit number is a reading some labs give. It does seem that this ultra sensitive testing .001 to the thousandths can create some undo stress. I understand I should not be worried at this point and I am not in a panic, but it is a back of the mind worry. This time the doctor said that it could be some benign tissue causing this, but he will recheck in 3 months.
Since it seems to make a difference that the final pathology report said it was Gleason 6, would anyone suggest we have that re-checked to make sure it was a G6? Is there anyway to have that double checked almost 2 years post surgery? Do they keep slides that long? Maybe that is just a waste of time.
Thanks Pocketman for sharing your PSA results and putting that in perspective.