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12 years since surgery update 07/04/2018

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Prostate Cancer
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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 6/19/2016 7:24 AM (GMT -8)
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 update 12/05/17 seeing doctor today for annual
2018 July 0.300 update 07/04/18


Anyway doctor say we might talk if it goes to 0.30 ok talk about what?

How do we know that these numbers actually mean CANCER? A healthy prostate puts out PSA right? Can these numbers reflect healthy prostate cells? How do you know they are cancer or not?

I check in here about once a year or so with my numbers. Everything else health wise is great far as I know heart, lungs, etc. I take no presriptions of any kind and everything works as it should for a 67 year old guy. Still this CREEPY PSA CREEP bothers me a bit.

Post Edited (56pontiac) : 7/4/2018 8:22:12 PM (GMT-6)

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Bobby Mac
Veteran Member
Joined : Mar 2016
Posts : 804
Posted 6/19/2016 7:47 AM (GMT -8)
56Pontiac -

FYI - Your doubling time is ~ 19 months - what you do is between you and your Doc.

I'll race your '56 Pontiac with my '57 Chevy --- :)

Bobby Mac
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Newton451
Veteran Member
Joined : Feb 2016
Posts : 553
Posted 6/19/2016 7:55 AM (GMT -8)
Hey 56.....sorry about the continual worry about it creeping up.

Given it's slow creep, I am very interested in knowing what your Gleason was post op. In my little mind, I am thinking it's the slow progressing type 3 cells that were left behind. They are the slow movers I believe.

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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 6/19/2016 8:47 AM (GMT -8)
From 2013 to 2016 for a 3 years doubling time? You're 80 by the time your PSA reaches 5.0 if that trend continues. Hardly a need to rush anything.

Good to hear from you again. I hope the Rockin' is still going Raye. Seeing you today made go back and check Youtube. I see you're still doing the "Orb"...Cool stuff.
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Gemlin
Veteran Member
Joined : Jul 2015
Posts : 727
Posted 6/19/2016 9:17 AM (GMT -8)
The most widely accepted definition of a cancer recurrence after surgery is a PSA > 0.2 ng/mL which level you have seem to have passed in two measurements. You may benefit from secondary treatment like salvage radiation but that could also be over-treatment if it is a non aggressive recurrence. Waiting to 0.3 or more, considering that it was 10 years since surgery, sounds reasonable.
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 6/19/2016 10:50 AM (GMT -8)
No, it's not healthy cells left behind - healthy/benign cells don't put out an increasing amount of PSA.

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

After biochemical recurrence, which occurred for you last year, it takes a median of 8 years for distant metastases to be detected with a bone scan/CT, and 13 years for death. That mortality number has undoubtedly lengthened because of better medicines developed since the Johns Hopkins study was published.

Natural History of Progression After PSA Elevation Following Radical Prostatectomy

Since you're 68 and healthy, you probably will want curative therapy. Salvage radiation may be able to cure this, but the longer you wait, the higher the probability that the cancer cells will escape the local area and become incurable. Right now, you have a long PSADT, suggesting it is still localized. If you wait until you have a short PSADT, that suggests that it has become systemic and incurable.

- Allen
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Gemlin
Veteran Member
Joined : Jul 2015
Posts : 727
Posted 6/19/2016 12:59 PM (GMT -8)
This could be a relevant study for when men with detectable PSA after RP can avoid the anxiety, toxicity and costs associated with additional treatment. Low Detectable Prostate Specific Antigen after Radical Prostatectomy—Treat or Watch?
It is written:
"Low detectable-stable PSA (greater than 0.03 and less than 0.2 ng/ml, no 2 subsequent increases and/or prostate specific antigen velocity less than 0.05 ng per year) do not often experience disease progression and can be followed safely."

56pontiac - unfortunately it looks like your numbers are worse than this definition.
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logoslidat
Veteran Member
Joined : Sep 2009
Posts : 7585
Posted 6/19/2016 2:43 PM (GMT -8)
Ride it out Pontiac 56 ...the'll be no hanging to nite...sure you'll disappoint a few with ropes a swinging...he who lives by the the studies...die by the studies...but then i'm anathema to some...thankfully...

Remember a study is nothing but a question pitted against another question...slowly creeping to a truth as yet unrevealed...looking for a home..by faith that is real...
Know what i mean jelly bean!!...as the bulwarks of nothing...gasp and stutter...their something a flutter...in a sea of mutter......
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 6/19/2016 7:50 PM (GMT -8)
I agree, ride it out. With such a long time to get to where you are at (10) years, SRT may or may not even work for you, and you would be at risk for radiation related side effects. If it's not broke, don't fix it.

However, if it continues to rise, steady for the next year or so, re-evaluate your situation. With such a slow doubling time, you will either live to be an old man, or something non-PC related will get you. Just my take, not a doctor
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NCOBJIM
Regular Member
Joined : Dec 2010
Posts : 35
Posted 6/20/2016 9:19 AM (GMT -8)
56pontiac

I also had RP in 2006 and the progression seems pretty similar to yours. Difference is I had IMRT in 2010. Both my MO & RO keep mentioning that it is possible left over prostate tissue could cause this. Right now I am just happy it is staying in the .20 range. Keep on watching.

Whishing you well.
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56pontiac
Regular Member
Joined : Sep 2006
Posts : 240
Posted 6/20/2016 12:16 PM (GMT -8)
Thanks a lot guys. I am leaning to the ride it out and wait and see what the doctor says. I also don't believe there really is a "cure" for any cancer it seems to always be there.
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 6/20/2016 12:29 PM (GMT -8)
I can assure you, men are cured of prostate cancer every day. However, the longer you go "in riding it out" the lower your odds of having a lasting cure. This was proven in 3 major clinical trials. Only you can decide whether it's worth the risk of side effects. However, I think you should make this decision after a review with your doctor of the available medical evidence, rather than relying upon the many uninformed opinions of your friends and on internet forums. Avoidance and anecdotes are never a good basis for making a decision.

- Allen
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Jmon
Regular Member
Joined : Feb 2006
Posts : 84
Posted 6/20/2016 1:35 PM (GMT -8)
Hello Pontiac,

Your post interests me very much. My sitch is very similar. Had DaVinci in August 2005. PSA 4.0, Gleason 3+4. Started out out at <.03 and crept up over the years. In December last year it hit .20. This month it went to .26. Doc has shortened PSA check intervals to 4 months so we'll see where we are in October.

Like you, I am 68, fit and in very good health with all systems functioning properly. The thought of potentially screwing things up with radiation side effects is not pleasant. With a family history of longevity I can expect another 25 years or so. It's a dilemma. I'll watch your story with interest.
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 6/20/2016 4:22 PM (GMT -8)

Tall Allen said...
I can assure you, men are cured of prostate cancer every day. However, the longer you go "in riding it out" the lower your odds of having a lasting cure. This was proven in 3 major clinical trials. Only you can decide whether it's worth the risk of side effects. However, I think you should make this decision after a review with your doctor of the available medical evidence, rather than relying upon the many uninformed opinions of your friends and on internet forums. Avoidance and anecdotes are never a good basis for making a decision.

- Allen

Does this include the advice you give people here too? You are neither a doctor or a medical professional if I remember correctly. It's too easy for anyone to read in-between the words of what you post at times. It's not rocket science. Long as you include yourself in this latest piece of advice for the OP, I am ok with it.
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logoslidat
Veteran Member
Joined : Sep 2009
Posts : 7585
Posted 6/20/2016 5:29 PM (GMT -8)
You can assure us all day long...means nothing...you always leave out the determinant for the the OP...which is your saving "grace" ...as you have zero credentials for such...and you know this as sure as fresh falling snow is pure... I think you get the drift...As Walt Whitman said: "you think you know...and you don't". Hubris...a lousy breakfast..lunch and dinner especially when served to to someone else..."Paints what I see's" Gahan Wilson...
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 6/20/2016 6:35 PM (GMT -8)
Purg-

I have no idea what you mean by someone is reading between my words - I'm usually careful and precise. I'm only concerned with the plight of the OP here. I really don't care whether you're OK with it or not - that's not my concern. I can back up everything I write with credible medical evidence - can you say the same? If you can, present it, and let's discuss it. You don't have to be a medical professional to discuss the publicly available research. What I always tell posters is that here's something to discuss with your doctor - which is the proper stance for a patient and a patient advocate. Can you say the same, or do you just dish out opinions as if there were evidence?

- Allen
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 6/20/2016 8:12 PM (GMT -8)
I have been here for nearly 8 years, no that doesn't make my experience special or any advice I have given any higher value - first to admit that. But I have also seen "experts" come and go over the years.

In the original concept here at HW, it was intended to be a patient to patient (peer based) exchange of experiences, a place to life a fellow PC brother up, or their spouse or S.O. And of course, sharing of credible medical information to assist others with difficult medical decisions ahead. But we also knew/know, that at our best, even the "experts' here, are in no form or shape - a replacement for sound medical advice. Personally, that's how it should still be and is for the most part.

I feel, and it may just be me, I speak for no one else, that a flood of stats, abstracts, findings, whatever name one care to give them - sometimes, just sometimes, can actually daze and confuse those new to the PC world, and just sometimes, can cause needless anxiety and fear, which is not the obvious intention of the poster of such information. I have seen folks here go negative on their doctor's advice based solely on what appeared to be more educated opinions from some regular posters. I find this to be a dangerous approach and trend.

From that very first ever PSA test, to that first biopsy (if needed), to surgical and radiation treatments, to HT and Chemo journeys, we have a wealth of first hand knowledge from real life PC patients to share - and for the biggest portion, these stories are helpful to those in need. There is very little related to PC and PC treatments, and yes, even PC tragedies - that hasn't been experienced and shared here.

I say (again, speaking only for myself), save the doctoring to the doctors, ands leave the true support level assistance to the HW PC community here. It has worked well for years.

The saddest part to my 8 years here, is the never ending line of new Men and Women that find us and end up being a part of HW PC. It would be nice if that were not the case, I really wished there wasn't a constant need. But that wouldn't be real world.

Perhaps its just me, but your use of the word anecdotes always comes across as demeaning and even condescending. But that's just me.

It's not all peaches and cream out there, and its not all hard cold academic facts either, there's a lot of suffering, a lot of pain, a lot of fear, and a lot of anxiety among our community - to those elements, I will never let down my level of care and heart felt empathy, despite my own woes. To truly understand suffering, you have to experienced suffering, same as pain and worry/anxiety. Those can't be learned from a study or abstract.
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 6/21/2016 5:00 AM (GMT 0)
Purg-

I never accused you of not caring, and I would expect the same respect - or hit the ignore button.

If you don't like the kind of care I provide - again, hit the ignore button.

I happen to believe that knowledge relieves anxiety, rather than causes it. That's because I respect the posters here and believe that if I can express myself clearly enough they are fully capable of comprehending anything I have to say. Unlike you, I don't believe they are so easily "dazed and confused." Again - hit the ignore button if you don't believe the same.

And I believe that anecdotes are problematic. Being human, we relate to personal experiences better than statistics. One person writing "the surgery or radiation went badly for me" can have a lot more impact than reading "2% suffered grade 3 toxicity." Yet behind all of those statistics are real people. A study with a sample size of 1,000 should have 1000 times the impact of one person's anecdote - yet it doesn't. This is a cognitive defect we all share called the "availability heuristic." So anecdotes are not bad per se, they just must be kept in perspective. I will always come down on the side of evidence-based medicine because I think it's our best hope of making decisions that have the highest probability of success. Again, if you disagree,...

Your accusatory post to me caused me to actually look at what you posted. What I notice is you gave advice in dictatorial terms - do this, don't do that. You are the one giving medical advice here without providing any basis for that advice. I hope you take your own advice to leave that to the experts.

Meanwhile, you've kidnapped this OPs thread, and in rising to your baiting, I'm guilty as well - for which I apologize to the OP. Please, in the future, keep your ad hominems to yourself - they have no place on a civil discussion board - or, as I suggested, hit the ignore button.


- Allen
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Octorobo
Regular Member
Joined : May 2009
Posts : 437
Posted 6/20/2016 9:06 PM (GMT -8)
56 Pontiac

Your numbers would match any definition of recurrence, whether one uses the standard of .2 or the more current .03. This would be the accepted trigger point at any of the major cancer centers in the US. Established studies from the past 8 years show that waiting past .2 to begin a secondary treatment lowers your chance of a real cure or durable remission. Have you plugged your numbers into MSK SRT nonograms?
I had surgery in Oct 2007- GS 3+4 first PSA reading after surgery was .005. Finally I reached .06 in January 2015. Had SRT at MD Anderson and been stable at <.006 for 14 months. Both my urologist and RO said I needed SRT. After SRT, both said I had 80-85% chance of being finished with PC. So far so good. My doctors are at the very top of the elite PC specialists in the field. Thank you God. Tall Allen has given you a very accurate assessment of the most current protocols for your situation. What you do with that information will effect you the rest of your life. You are very young and healthy. I have had absolutely no problems with SRT. That is the case for a very high percentage of men who have secondary treatments. There are deaths from lightning strikes. I am sure there is someone who would advocate, as an authority, that you should dig a hole in the ground, line the walls, floor, and top with eight inch sheets of rubber and get in it to avoid the effects of being hit. You know that records show that one or two in a gazillion people have been hit. It is amazing that those two also have prostate cancer. Go figure. Here's the most important number: roughly 15 percent of men diagnosed with PC die from it. Pretty clear understanding? Stay in touch.

Post Edited (Octorobo) : 6/21/2016 4:50:15 AM (GMT-6)

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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 6/20/2016 10:21 PM (GMT -8)
Octorobo,
The last sentences adjusted, you thoughts are like mine were. Not all men that died from PCa had a recurrence. Many never went to a remission in the first place. That stated. Good post with good thoughts.
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 6/20/2016 10:26 PM (GMT -8)
56,
I would definitely watch things as you have. Taking on an intervention therapy may be a good idea and it may also be totally unnecessary. There may be a trial alternative out there for you to consider that would compare some of the novel new drugs as an early intervention after RP leaving great data behind for others. Perhaps the best advice is stay informed and stay vigilant. And keep playing that awesome music!
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Tim G
Veteran Member
Joined : Jul 2006
Posts : 3052
Posted 6/20/2016 11:06 PM (GMT -8)
56--

It sounds like you're between a rock and a hard place with this situation. A second or third medical opinion may help you decide which direction to take. Take care and let us know what you decide.
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Tim G
Veteran Member
Joined : Jul 2006
Posts : 3052
Posted 6/21/2016 12:23 PM (GMT -8)

Bololidat said...
You can assure us all day long...means nothing...you always leave out the determinant for the the OP...which is your saving "grace" ...as you have zero credentials for such...and you know this as sure as fresh falling snow is pure... I think you get the drift...As Walt Whitman said: "you think you know...and you don't". Hubris...a lousy breakfast..lunch and dinner especially when served to to someone else..."Paints what I see's" Gahan Wilson...

Can you please translate this from BoloSpeak to plain English?
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rob2
Veteran Member
Joined : Apr 2008
Posts : 1132
Posted 6/21/2016 12:38 PM (GMT -8)
56,
Good luck to you in whatever you decide. Like Octobro above, I pulled the trigger for SRT when my PSA hit .03. I was 6 years out from surgery and waited a year. Could I have waited longer, probably. Did it work, hopefully. Point is I made the decision after consulting with my doctor and others. Of course I was well armed with information from people on this forum. It has always been very helpful.
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 6/21/2016 12:55 PM (GMT -8)
Tim-

I didn't see that post until you quoted it because I have that member blocked. I've given up trying to understand and translate Gibberish, especially mean-spirited (as far as I can tell) Gibberish. It's difficult enough when people try to communicate. To obfuscate intentionally of a site where people are looking for help is unconscionable to me.

- Allen
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