who had not so great path report but a great Ultra Sensitive PSA?

So at my 1st post op 7 week visit, my surgeon said that due to my G9, SV+ and 1 focal margin(but no other extra prostatic extensions and neg nodes), and despite my 1st PSA being "undetectable" at <0.1, he gave me no better than a 50% chance of remaining free of recurrence long term. Which he was careful to clarify was quite different than only a 50% chance of not dying from PC, though I may need other treatments obviously. Still, not all that encouraging.

But, that may have been optimistic. I went to a MSK calculator and plugged in my numbers and that indicates my odds of no BCR are WAY lower than 50%.

OTOH, In a study of 30,379 men after RP for G8-G10s indicated really excellent results, though it is not broken down by other things like SV involvement and such, other than saying "This is the first study to demonstrate excellent 20-year cancer-specific survival of men with Gleason 8-10 prostate cancer,” the authors wrote. A total of 52.8% of patients had T2 disease, 73% had node-negative disease, 80.2% underwent lymph node dissection, and 12.9% had adjuvant radiation therapy. The study showed that pelvic lymph node dissection did not significantly affect overall survival." So only 13% even needed adjuvant RT but the great majority had a long PC free survival:
http://www.renalandurologynews.com/study-supports-surgery-for-high-risk-prostate-cancer/article/338483/

And on the other other hand, I have seen several studies like this, which indicate that reaching a post RP nadir of < .01 with the US test forecasts much lower BCR rates, even significantly lower than .05. The trouble with this is they are looking at all RPs, G6s and fully contained and presumably a few G9s and not contained, and nothing is broken down to consider that. But still, the group that went below .01 has extremely low BCR in 3 years ( I know, only 3 years) compared to the higher, but still very low, nadirs. Anyway, even if we not contained G9s who are LESS THAN .01 don't match those impressively low BCR %, I'm thinking that it at least boosts my odds above those gloomy MSK numbers and maybe even higher than my surgeons estimate for me.

Then I got to thinking about my fellow HW/PC guys, and if any of you have been in a similar situation: not a great path report but < .01 PSA post RP? And if so, are any of you staying low after some years with no BCR? ( that is, without other treatment? I bet a bunch of guys with my numbers go straight to HT/RT, or would that always require a PSA rise first?)

I realize there may be a bias to deal with asking that question at a PC forum. Probably those of us with problems are more likely to come to forums like this to start with. Is that an accurate statement?

Anyway, if you dropped to < .01 post RP but had otherwise not great results on the path report, let me know how you did. I will TRY to do a poll. Though I can't vote since, even though I am , .01 so far, I am only 4 months post op. Another problem with the poll might be there are not enough guys around tested with ultra sensitive years ago.
Bill

Jerry L. said...
BillyBob,

I had RP and adj. radiation and was undetectable for 15 months and then my life was turned upside again with a met discovered...with a very low psa...g9s can be tricky with some not producing much psa...but I'm back on track kicking back.

My hope is your psa never moves...but if it does, plenty of options....

Jerry

Well, there you go, my whole plan just went to heck! ! Looks like you had RT just a few months post RP even before BCR, but still had BCR in about a year? Of course those MSK normograms/calculator tell me I don't have much chance of staying BCR free.

Post Edited (BillyBob@388) : 6/25/2014 9:15:18 PM (GMT-6)

Hmnm...where do I start.
I was g7 going in... g9 going out of RP. I made it less than a year... bcr hit .2 . Path report said low volume (<5% I think)... I was hopeful. But SRT with 2 yrs ht, I know I got it this time. Just had blood draw and my last 3 month shot! Now the waiting game.
Just stay on top if it, yet live a little. I seem to have found a little bit of balance.
Fingers crossed for both of us.

Oh, also as in your case Jerry, it also depends on how BCR is diagnosed. In your case with a met rather than a rising PSA! Which I think was your original point, i.e. those G9s can be tricky!

One question I don't think I have ever got an answer/opinion on: if I was diagnosed because of a high and fairly rapidly rising PSA, does that mean my G8s and G9 are PSA producers? I suppose that rapidly rising PSA could have been a coincidence caused by something other than my PC? Or putting it another way: do aggressive PCs (G8-10) often produce PSA, or is that uncommon?

Bill,

One thing you might remember is many many of the men they followed may have gone on to have subsequent treatments, either radiation or ADT or both. They do cite a figure for "adjuvant" RT (12.9%) because that would be in the same dataset, but they don't cite, and probably don't have, the data for "salvage" RT.

In particular, men who wind up "surviving" on palliative ADT don't resonate as "cured" in my mind.

Still, it is a comforting result for us surgery guys who sometimes feel a bit beat up by the newer and often better data for other treatments. It is odd, though, that they didn't find a benefit to pelvic lymph node dissection. I would have expected one...

It doesn't pay to use the results of others to project your own results I don't think. But you're very lucky to have such a low PSA post RP with your pathology. Everything I've read says that if you have a < .1 PSA and long PSA doubling time like more than 18 months, you have a good prognosis for BCR . But you could still have BCR many years hence with gl9 and SVI. You just have to cross that bridge when you come to it. Some recommend adjuvant RT and ADT with poor pathology. I chose to wait till I had BCR.
Bob

Break60 said...
It doesn't pay to use the results of others to project your own results I don't think. But you're very lucky to have such a low PSA post RP with your pathology. Everything I've read says that if you have a < .1 PSA and long PSA doubling time like more than 18 months, you have a good prognosis for BCR . But you could still have BCR many years hence with gl9 and SVI. You just have to cross that bridge when you come to it. Some recommend adjuvant RT and ADT with poor pathology. I chose to wait till I had BCR.
Bob

Yeah I know, it's a long haul if we're lucky, and a lot can go bad over those years even if we are only considering PC. My 81 yrs old friend had just passed his 5th year with no PSA rise after radiation of some type, and felt pretty good about it all. Then the 6th year- BAM there it is. I believe he is now doing ADT. That's the world we are all in now.

I think you're right about me being extremely lucky on that <.01 after RP only, considering my path report, I'm surprised actually. Maybe that accounts for why I have not yet had any responses from guys in my same category, and why no one has voted in my poll? Maybe there just aren't many of us out there? Of course could be a lab error, but hopefully not, but we will find out soon enough I guess.

My Vanderbilt surgeon still uses the standard <0.1 test ( 10 times higher than the one I had later here at home, <.01). And he seems to believe in the same approach you used: waiting for BCR, defined by going up above 0.1 some amount a couple of times. Then we will discus pros and cons. He is a pretty brilliant guy, well known nationally. But, there are a lot of other guys who will jump on it it I went up above .01 very much, maybe .04 or .05 I guess, at least if it was rising steadily. If I get a rise and need radiation, I just hope it holds off at least until my continence is as good as it is going to get.

PeterDisAbelard. said...

BillyBob (Bill), Bob said...
Some recommend adjuvant RT and ADT with poor pathology.

Just to sort of put book ends on your options, none of my doctors hesitated a minute before moving on to Adjuvant RT and ADT. Not sure it's what I recommend but it might be, it is certainly what I did.

Yep, Bob (plain old Bob, not BillyBob LOL) said that but chose to wait for BCR, as my doc ( Joseph Smith at Vanderbilt) seems to have the same plan for me. You and your docs chose to hit it earlier. I'd like to hear the docs reasons for their opposing views sometime.

Doesn't look like I'm going to get much response in my poll from other guys who are both below .01 and G9s etc and who have been around for a while to report. For one thing the lower limit of <.01 Ultra-sensitive test has probably not been in wide use for very long, maybe not all that common even now.