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Posted 4/17/2010 3:31 AM (GMT 0)
Just got the results from my latest PSA... after having a .01 in July 08 following my surgery in May 08, and then a long string of 0.0 at three month intervals, I learned this afternoon my latest score was .1. When I spoke with the uro's nurse, she told me the PSA scores still looked "very good" and that nothing more needed to be done unless the score reached .2. She said I could wait for my next "regular" PSA in July 2010, or "for my own piece of mind," could get re-tested in six weeks. She also said these scores tend to "jump around sometimes."

I thought .1 was detectable and thought this score was bad news. Given my profile (4+3, EPE, pre-surgery PSA 13.7) I can't say a recurrence would be a big surprise.

Any advise about the likelihood of this being a recurrence? How likely is this a fluke reading? How long should I wait for the next PSA? Any thoughts are appreciated.
Posted 4/17/2010 5:51 AM (GMT 0)
When I reached .1 (both times), my doc immediately had me come back in for a re-take. Maybe some docs aren't as concerned about a 0.1 as others, but if it were me, I'd take the offer to be rechecked as early as possible to see if it was a fluke or not. Some define recurrence as 2 consecutive 0.1 readings, others as 2 consecutive 0.2 readings. My doc is in the former. We are watching very closely now. I have had 2 consecutive readings with no change - 0.17. I am encouraged that there is no velocity at the moment, but I am under no pretenses - I have had a recurrence.
I hope your reading is a fluke.
Jeff
Posted 4/17/2010 9:52 AM (GMT 0)
Did you see the actual result or was she reading it out to you. I would be checking with her that she was reading the result correctly. You would not be the first to have .01 called .1. For this reason it is always advisable to get and keep a copy of the test result. Here's to you having the same result as before and her saying "Oops, I misread that one"
Bill
Posted 4/17/2010 11:09 AM (GMT 0)
I would definetly retest in a month or so. If PSA keeps going up - act, no reason to wait until 0.2. However, focus on a good news:
- this could be a fluke
- it has been two years after surgery, if this indeed is a recurrence, it is very likely a
local one
- you have another "cure" card left
Posted 4/17/2010 11:54 AM (GMT 0)
Kark,

I would retest. Also looking at your past scores there were some that appeared to be ultra sensitive (0.01) then others that just reported as 0.0. Could they have changed the tests they were asking for and in reality your score was something like 0.06-0.09 and they just rounded it up to 0.1.

These are questions I would definitely ask in addition to seeking a re-test. The answers sure could take a load of worry off your mind.

Good Luck and let us know what happens,

Sonny
Posted 4/17/2010 2:06 PM (GMT 0)
Unless that .1 is the result of rounding up as Sonny suggested above, and a closer look at the test should show that, I would definitely be retested sooner, not later. My dr. and then later my rad. oncologisit, both agreed, that once you cross the .1 line for sure, keep testing close, and when I had 3 readings that were above .1 and rising each time, recurrance was declared. Both my uro and rad oncol agreed too, that there was no point waiting for it to get to .2 or any other higher number, and it was time to start planning a salvage treatment.

Just my take.

David in SC
Posted 4/17/2010 4:23 PM (GMT 0)
I agree with all of the above, get retest. As you can see from my signiture, my Dr had both of my last wo PSA's re-tested. Also, you should consider asking to have the lab send you a copy of their report. I get mine mailed to my home. I usually have the results before I hear from my Dr.
Posted 4/17/2010 7:15 PM (GMT 0)
Well....ditto.
I would get re-tested at 6 weeks.
Posted 4/17/2010 7:34 PM (GMT 0)
I would also ask for an ultrsensitive test. In my opinion, and in my own situation, I have demanded ultrasensitive. In fact, I got retested in 2 days after I got the result and saw it was not ultrasensitive. I personally have it drawn at a hospital, and then go to medical records in 2 days and get a copy.

Your PSA may come back at .09 ort .08, but at least you can see the change. that first .09 can be a litlle deceving I think.

The nomograms will give you a favorable cure rate with SRT based on a 2 year time frame. In fact, they want to know when it reaches .2 for their calcs, which may be a while for you.

Good luck on your journey.
Posted 4/18/2010 3:15 AM (GMT 0)

After a string of .01 I had my results also come back at .1. I got very concerned until I found out that they did not do the ultra-sensitive test. My suggestion is to make sure that the .1 was from the ultrasensitive test.

Good luck to you.

Posted 4/19/2010 10:05 PM (GMT 0)
Sounds like good advise has been given hear. I do think that you are still doing great however do take precaution and get retested soon. Let us know how it goes.

peace to you
dale
Posted 4/20/2010 2:02 PM (GMT 0)

Is it true that both Johns Hopkins and Mayo recommend use of standard psa test rather than the ultrasensitive psa test for post-prostatectomy monitoring of psa levels?   I have heard that but don't know for sure whether it is true (or only in certain cases?)   I read so much about ultrasensitive results (and the anxiety they cause), but these two institutions are not fully of dumb people, so it would be interesting to know their thinking.

Posted 4/20/2010 9:57 PM (GMT 0)
My surgeon also recommended the standard test for this very reason. He said anything below .1 is not significant and easily can be altered by proteins that are "cousins" of PSA. Thus, the ultrasensitive is not necessary or particularly helpful below the .1 level.
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