12 years since surgery update 07/04/2018

Thanks everyone good to see Tim G, Tony, and Purgatory who were here when I got to join this exclusive club or soon after. Everyone has a different gift and contribution here. Some over the years really get into the medical studies and explanations of them like Tall Allen which I do appreciate. That being said, I have lived long enough to realize that studies and science has a tendency to change. Those kind of things make my head hurt especially with all of "them thar big collage" words I don't understand them easily. I appreciate the translation, interpretation, and explanation from those more knowledgeable than myself that seem to understand the numbers and even all the initials used. I will wait and see what my doctor at the urology clinic has to say or recommends for me. I will report back and let you know how it is going as I have for almost 10 years. Thanks again everyone

Post Edited (56pontiac) : 6/21/2016 3:40:11 PM (GMT-6)

56 Pontiac...Very measured and articulate response...stripping all pretense...from the "pack" of us all...on this misdirected thread of sour "knowledge" You my friend are the teacher on this thread...
Auwe no ho'i...my...oh my...oh my....

56pontiac said...
HOLDING STEADY AS I MOVE ON THROUGH YEAR 11

Robot surgery was 10/12/2006


2006 PSA after surgery .001
2007 0.02
2011 0.085 
2012 0.15 
2013 0.13 
2014 0.20
2015 June 0.17
2015 Dec 0.23
2016 June 0.26
2016 Dec 0.25

I was originally, and continue to be impressed that, not only does your PSA not increase very much or rapidly most years, but some years it even goes down a bit with no intervention. You have not quite managed to double from your 2012 level. As opposed to doubling, you have had an 8% increase in one year, an actually dropped about 3 or 4% in 6 months.

I imagine that no such precision exists in looking at the PSAs, that such minuscule total amounts and even more minuscule differences can be lost in the tolerance of the machine, the old + or - specs. Still, this seems impressive in a positive way, even though you have recurred/BCR-ed as far as I can tell, i.e. met the definition of BCR for a while now.

I don't know, does that actually mean anything reassuring or positive, that it has been so slow to climb and even occasionally goes down from the previous reading? Or not?

Also, what was your Gleason score on path report?

A year or so back I asked my doc(URO) what it means for a G9 if the PSA stays way below the 0.1 or 0.2 BCR standard for 2 or 3 or more years. (maybe I asked him at my 2 year check up, not sure). He said that- most likely - it meant that if any cancer was left behind, it was not aggressive. And I suppose it is the aggressive cancers we have to worry about, right? I hope he is correct about that, but only time will tell. Of course there are those studies about reaching the .03 mark almost guaranteeing BCR, so there is that. And that has been the case with you, apparently. But BCR does not always assure METs or clinical recurrence, right? Is that right?

Anyway, congrats on a bit more time without a doubling, and even without an increase and even a slight drop! May it continue for a long, long time! A nice Christmas present! 11 years, whooHooo!

Update 12/05/17 Seeing doctor today for yearly checkup. Will see what he has to say about this latest creep almost doubled in 2 1/2 years. Other than the anxiety of the creepy PSA I feel pretty healthy and life is good.

Details since surgery .

Ok had the Robot 10/12/2006

2006 PSA after surgery .001
2007 0.02
2011 0.085
2012 0.15
2013 0.13
2014 0.20
2015 June 0.17
2015 Dec 0.23
2016 June 0.26
2016 Dec 0.25
2017 Dec 0.326

Tall Allen Not sure what you want. Here is what I know before surgery my PSA was 4. something, There were 5 out 12 cores of the biopsy were cancer cells, the Gleason was a 6 pre surgery then changed to 7 after the surgery. Todays visit the doctor said he would like me to just talk to the radiation doctor. He said I did have some positive margins after surgery (first time I heard that). He indicated that it would be up to me to have radiation or not and at this point it wasn't imperative to do anything except get a PSA every three months and see since it's seems to double every 2 1/2 years so far. The thought of having radiation worries me.

Hey 56, good to hear from you again. Our situations are nearly the same, so your case is of great interest to me. I had DaVinci in August 2005 at age 57 (I recently turned 70). Pre op PSA was 3.9, Gleason 3+4. Post op PSA was less than .03 for first several years and then began creeping up slowly. Like you it occasionally would drop a bit.

November 2015 PSA hit 0.20 and my urologist encouraged me more strongly to see an RO. I had resisted because I am otherwise very healthy and active with no real side effects from the original surgery and an amorous wife so not in any hurry to risk the side effects from SRT. By September '16 it had hit 0.30 but dropped back to 0.27 in January. By May it was back to 0.30 so I met with the RO.

He encouraged me to move quickly with scans. First an MRI which showed nothing. So that was followed by a dye injected PET scan at Hoag in Newport Beach -- also negative results. An October test showed PSA still at 0.30 -- no change in over a year.

So, my RO who initially was vigorously encouraging me to begin SRT, even suggesting an initial 3 month Lupron regimen has backed off a bit. He is considering my reluctance and current good health and has suggested I go back to PSA test every 3 months. He warns that I need to be ready to begin treatment if PSA accelerates. Also he said there is one, more sensitive, scan that i can undergo. However, that would require a trip to San Francisco.

I'll follow your progress with interest and update my sitch as we go forward. Good luck!!

56

Again what was your Gleason score and pathology at RP? It must have been pretty good based on how long it’s taken for ur PSA to increase; however you technically satisfied the definition of biological recurrence in 2014 with two successive PSA tests of .2 which normally would have triggered SRT.
Just sayin’....
Bob

I meant for you to put in your age and health status

56Pontiac, I calculated the probability of you remaining metastatic disease free from the algorithm provided by the 2nd article posted by TA if you don't do anything.

Assuming your biochemical recurrence (BCR) is defined as > 0.2, and I set BCR at Dec 2015, then you have an 82% probability of remaining metastatic disease free 7 years from Dec 2015, or Dec 2022. That's pretty good odds.

However, your odds may be even better, because (1) the study used a PSADT cutoff of >10 months and yours is considerably longer and (2) the cutoff for recurrence was < 2 years, whereas yours was 9 years.

Hope this helps

I met with the RO today. Watched the 17 minute movie explaining it all, then consulted with the doctor for over an hour. My doubling time is 4.17 years. He said my path reports looked very very good and my PSA increase is very slow. He would be glad to radiate me if I want it now. He said some people just want to hit it as hard as they can because some worry and fret more than they should. Different personalities involved with the decision to radiate or not. I asked him what he would do if he were me? He said since it is so slow moving and my health is excellent and no issues, he would just keep getting a PSA test every three or six months and if it starts rising dramatically maybe then discuss radiation. Also they don't know when your PSA is rising if it is from cancer cells or not. It can come from benign prostate cells left in the bed or from the bit of seminal vesicles left after surgery or from cancer cells they can't tell which it is. I am going to just watch and wait since all my bodily functions are great and my life really couldn't be much better than it is right now.

PSA that high is not from benign sources. Only benign prostate cells that are damaged as by incisions, mechanical stress, inflammation, or structural abnormality can release clinically relevant PSA into systemic circulation. Since none of those would be the case 11 years after a prostatectomy, that only leaves malignant sources as a cause. And since you had pattern 4 and positive margins, and the fact that your PSA has been increasing, that is very likely the cause.

Where does the PSA come from a cancer cell free prostate?

Almost 12 years since surgery just checking in with results see doctor July 13. Talked to radiologist earlier this year he wasn't interested in doing any treatment at this time since my doubling rate is not very fast. So, I will continue to do what the professionals recommend. Meanwhile I am blessed with good health, staying active, and am enjoying my "golden years".
006 PSA after surgery .001
2007 0.02
2011 0.085
2012 0.15
2013 0.13
2014 0.20
2015 June 0.17
2015 Dec 0.23
2016 June 0.26
2016 Dec 0.25
2017 Dec 0.326 update 12/05/17 seeing doctor today for annual
2018 July 0.300 update 07/04/18

Post Edited (56pontiac) : 7/4/2018 8:54:01 AM (GMT-6)

Pratoman said...
Pontiac, .03 is pretty good news, I guess.

So if you would have followed the current thinking of most RO’s, you would have certainly had SRT and probably ADT, in 2014, and probably as early as 2012 or 2013.
I’d call that a nice “save”

It’s also interesting with all the talk about doubling time, that from 2011 to 2012, you had almost. Double. Then a year later, 2013, it stopped rising and even backed off a bit.

So confusing. But you apparently, at this point have made a wise decision, getting another 4-5 years + with no treatment vs had you followed current advice/studies.

I'm sure you meant ".3 is pretty good news", typo.

Yes, he has backed up a few times over the years, in 2013, 2015, 2016 and just now in 2018. Sometimes, apparently, being a bit lower even 1 year later. I'm surprised that would ever happen with malignant cells progressing, but I suppose anything is quite possible. I know it happens with normal prostate cells, since we know the PSA goes up and down with such things as prostatitis, etc. I find it more surprising that it goes up and down with malignant cells(unless treated of course, i.e. taking some action that decreases malignant cells). But it might well go up and down, apparently so.

I wonder what the death from PC rate is in people who take over 10 years to BCR? Or maybe I should say take 10 years to do something beyond BCR, something more aggressive? Because looks to me like 56Pontiac BCR'ed 4 years ago(not counting going back down the next year), but nothing much has happened since then. I.E. he has not even managed to double 4 years after his first .2. And has in fact just once again gone back down by.026 since Dec. Is there a study on outcomes with guys in such a group as 56P who have not had additional treatment? A lot of folks(most?) would have already jumped on this with those #s. I notice the average annual increase since after RP has been .0166 per year. Or if you prefer to start from the 1st increase to .02 in 2007, it is an average increase of .025 per year. I'm sure that is not useful info, but I do think that so far, it has been mighty slow. But I wouldn't know what all of that means or how you should proceed, 56P. One good way seems to me is what you are already doing: listening to your docs.