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12 years since surgery update 07/04/2018

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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 6/21/2016 1:21 PM (GMT -8)
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 wink 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)

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ChrisR
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Posts : 849
Posted 6/22/2016 7:20 PM (GMT -8)
Prug...

I tend to side with Tall Allen this time....At no point did he claim to be a doctor, nor does anyone here believe he is one. But, since you brought it up....There is more knowledge here about prostate cancer then I would bet 95% of all the "doctors" put together have. It's not like the "doctors" have read some special secret book about prostate cancer that contains information only they know about that makes them more qualified to dispense advice to PCa patients. "Doctors" have no magic tricks that we don't know about here. Infact I can promise you I know much more about PCa then my GP. It's not like they can tell the OP that he for sure does or does not have recurrence. It's all statics and guessing.

There is nothing specail that any doctor knows about that has not been discussed or reported on this web-site.

OP asked for opinions about what to do. Allen happens to be very well "read" on this.
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logoslidat
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Joined : Sep 2009
Posts : 7585
Posted 6/22/2016 8:15 PM (GMT -8)
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.... blush
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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 12/24/2016 12:00 PM (GMT -8)
HOLDING STEADY AS I MOVE ON THROUGH YEAR 11

Robot surgery was 10/12/2006 Gleason score in 2006 was 7 stage T1


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

Post Edited (56pontiac) : 12/27/2016 10:11:34 AM (GMT-7)

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BillyBob@388
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Posts : 4855
Posted 12/25/2016 1:57 PM (GMT -8)

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!
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Pratoman
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Joined : Nov 2012
Posts : 9315
Posted 12/25/2016 7:23 PM (GMT -8)
56, you've been given some good science here, by TA. Science aside, you are between a rock and a hard place. This creep will very possibly continue. But there is no assurance that it will eventually;;y kill you, or affect your quality of life. It may, or it may not, and nobody knows for sure with this crazy disease.

So you have to make a decision based on which risk you are most willing to take, the risk of POSSIBLE side effects of SRT, or the risk of doing nothing until a. Ire is out of the question and seeing your quality of life affected with HT and or Chemo.

I'd get another opinion or two from some top Speciliats, to be sure you have all the data you can get, then choose between the risks.

EDIT: I posted the above before I realized there was a second page to this thread, and i was responding to old posts. Looks like so far, 56, you've chosen the right path. Hope it continues, happy for you.

Post Edited (Pratoman) : 12/25/2016 8:27:43 PM (GMT-7)

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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 12/5/2017 4:37 AM (GMT -8)
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 sad
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Tall Allen
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Joined : Jul 2012
Posts : 10645
Posted 12/5/2017 1:25 PM (GMT -8)
56pontiac-

Would you please include a signature with your pathology results?
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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 12/5/2017 4:45 PM (GMT -8)
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.
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Tall Allen
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Joined : Jul 2012
Posts : 10645
Posted 12/5/2017 5:47 PM (GMT -8)
Ask your urologist for a copy of your pathology report and post the results in your signature.
• was that GS7, 3+4 or 4+3 - any tertiary 5?
• what was the GS at the positive margin?
• how big was your positive margin?
• what was the pathological stage?

I'm glad you'll be talking to an RO. Here are some questions to ask him:

/pcnrv.blogspot.com/2017/12/questions-for-adjuvant-or-salvage.html
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Jmon
Regular Member
Joined : Feb 2006
Posts : 84
Posted 12/5/2017 6:53 PM (GMT -8)
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!!
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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 12/6/2017 5:52 AM (GMT -8)
Jmon, Thanks, it does appear our situation is very much alike, almost identical in every way. Like you because of my otherwise good health and no real side affects from the surgery 11 years ago everything working pretty well I think for being 68, no love life problems or incontinence. I thought I had escaped this thang. I will meet with the RO and "talk", they are going to call for a consult. Is there any evidence/studies proof that doing SRO after all these years really improves our longevity and quality of life? I feel great except for the minor aches and pains of being 68.
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Break60
Veteran Member
Joined : Jun 2013
Posts : 1870
Posted 12/6/2017 7:22 AM (GMT -8)
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
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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 12/8/2017 8:05 AM (GMT -8)
Just posting to this to see if my signature line is now working. Thank you Tall Allen. It looks like I get to start all over again after feeling like I was a winner with this disease for so long. Oh well POOP smile
RP 2006. Stage pT2c, GS 3+4, 6 mm positive margin at right apex, +PNI Now 68 years old, great health and all bodily functions great except for this PC thang moving in the wrong direction. sad
PSA: 2006-.001, 2007-0.02, 2011-0.085, 2012-0.15, 2013-0.13, 2014-0.20, 6/2015-0.17, 12/2015 -0.23, 6/2016-0.26, 12/2016-0.25, 12/2017-0.326

Post Edited (56pontiac) : 12/8/2017 6:52:11 PM (GMT-7)

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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 12/8/2017 11:28 AM (GMT -8)
I meant for you to put in your age and health status
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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 12/8/2017 5:48 PM (GMT -8)

Tall Allen said...
I meant for you to put in your age and health status

You did understand that you aren't talking to the brightest bulb on the tree right? smile Thank You Again.
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WeightLoss
Regular Member
Joined : Feb 2017
Posts : 189
Posted 12/9/2017 8:02 PM (GMT -8)
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
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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 12/10/2017 3:01 PM (GMT -8)

WeightLoss said...
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

Hey thanks, I want to go with your calculations, I like them a lot. smilewinkgrin Seriously to bad we don't have a crystal ball but I like the sounds of this one. I think Tall Allen is right my urologist/surgeon is really out of the game at this point. I am going to talk to the Radiologist and hopefully get some answers. I knew there was a reason I checked back here every year after the original hammer to the chest news in 2006. I felt kind of guilty checking in and posting my results because so many here didn't have as good an experience as I did. Most of those I got to know in my class of 2006 have moved on and I have no idea if their life is going well or not. This forum was a godsend and source of encouragment for me when I got PC in 2006 and it appears to still be one 11 years later. Thank you for taking time to post.
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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 1/4/2018 1:59 PM (GMT -8)
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.
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Tall Allen
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Joined : Jul 2012
Posts : 10645
Posted 1/4/2018 2:53 PM (GMT -8)
If your PSADT becomes rapid, it may be because your prostate cancer has metastasized and is, therefore, incurable. For now, it is growing slowly, indicating that it is still localized.

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.

Does Benign Prostatic Tissue Contribute to Measurable PSA Levels After Radical Prostatectomy?

I suggest you consider imaging. An mpMRI may be able to detect some cancer that is still in the prostate bed.

Use of mpMRI and PSMA PET/CT to aid in salvage radiation decision-making

There is a free clinical trial of the DCFPyL PET scan, which is the best of the PSMA-based PET scans. Here's some info about it. You can call them directly to set it up.

/clinicaltrials.gov/ct2/show/NCT03181867
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56pontiac
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Joined : Sep 2006
Posts : 240
Posted 1/6/2018 4:34 PM (GMT -8)
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?
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 1/6/2018 4:43 PM (GMT -8)

56 pontiac said...
Where does the PSA come from a cancer cell free prostate?

It comes from all the usual suspects:BPH, prostatitis, urinary retention, sex and bike riding. 18-year-olds have zero or close to zero PSA.
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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 7/4/2018 6:20 AM (GMT -8)
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)

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Pratoman
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Posts : 9315
Posted 7/4/2018 7:37 AM (GMT -8)
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.
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BillyBob@388
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Posts : 4855
Posted 7/5/2018 9:05 AM (GMT -8)

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.
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