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Do PSA levels always rise once crossing the test sensitivity post RP ?

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Posted 9/29/2017 6:30 AM (GMT 0)
Have members had positive above threshold USPSA test result stay flat and stable indefinitely ?

Or do these USPSA test results rise with time eventually hitting biochemical recurrence, BCR requiring salvage radiation therapy (SRT) ?

Looking for hard data from studies and / or personal experiences.

I am 58 years old and want to live a long life if possible.

Specifically my ultra sensitive PSA test came back positive twice at 0.01 on two consecutive days with a testing threshold of < 0.06 meaning I was twice the testing sensitivity.

This is my 1st positive test result above USPSA test sensitivity at 22 months post RP.

Some advocate doing SRT when USPSA levels hit 0.05 or even as low as 0.03.

many thanks in advance, jeff
Posted 9/29/2017 2:31 PM (GMT 0)
PSA is a bit bouncy at low levels. It goes, up, goes down, goes left, goes right. The only meaningful data is the trend over a large number of tests. The trend in your numbers is lower .02 to .009. Very good.

You've got an great PSA history and every reason to hope that in 20 years from now you'll still be here.

You shouldn't even be thinking of further treatments now. Currently there are some who say at .03, get a consult with an RO and start at .05. Older standards of care say don't do anything until .2. You're a million miles from either point.

so, stop testing so often - it's not needed. PSA is not a precision test and you're focusing on it too much.
Posted 9/29/2017 2:54 PM (GMT 0)
Jeff,

jronne
said...
Have members had positive above threshold USPSA test result stay flat and stable indefinitely ?

Or do these USPSA test results rise with time eventually hitting biochemical recurrence, BCR requiring salvage radiation therapy (SRT) ?

Looking for hard data from studies and / or personal experiences.


Sometimes low detectable uPSAs do flatten forever. "Forever" being relative to a particular man's lifespan.

Sometimes they start going up, slowly or rapidly, to a level that their docs think indicates BCR or "will probably get to BCR, so why wait on further treatment".

Sometimes the uPSAs trend up, then come back down. Mine seems to be like this. Others on this board have reported same, but I forgot their names.


Before going further, have you avoided biotin B7 -- even from multi-vitamin/min pills -- for a few days before your ultrasensitive tests? Please see the "Cautions" sections here:

/www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/64061


Also, looking at your uPSA scores in your signature, it is possible you have had some low level of benign gland uPSA or urethral uPSA contribution, bouncing between .000 and .010, for years, because your earlier uPSA tests were not testing down to a very low level, as were your tests this year. You don't mention positive surgical margins, so you probably don't have benign gland tissue around anywhere, unless your path missed it. But other body organs can produce some small amounts of PSA.



But those things aside...



As for personal experiences, you could start by looking at a couple threads on this board. There are others you can find by using the “search” in blue bar at top of web screen. You could search using terms like “uPSA” or “recurrence”. Here are two threads as a start for you (one is mine):

www.healingwell.com/community/default.aspx?f=35&m=3884695

www.healingwell.com/community/default.aspx?f=35&m=3787667


And at bottom are some hard data reading resources to get you started. Hope it's not too much, but this is a complicated subject, with gray areas and only some consensus starting to emerge as to what constitutes recurrence and when to do something about it.

You need to realize that your particular situation may take a long time, with regular uPSA monitoring, to reach a reasonable conclusion between you and your docs as to what to do next. Or maybe it will become apparent sooner. Just too early for you to tell right now. Your .010 level now is just so low that, with your pathology, nobody is going to treat you further at this point.

Any questions, just ask.

Robert


Other reading on low detectable and recurrence:

/www.ncbi.nlm.nih.gov/pmc/articles/PMC4586061/#R12

/prostatecancerinfolink.net/2015/01/14/low-detectable-psa-after-prostatectomy-watch-or-treat/

urology.jhu.edu/newsletter/prostate_cancer829.php

/www.ncbi.nlm.nih.gov/pubmed/25463990?dopt=Abstract

www.ajmc.com/journals/supplement/2014/ace021_dec14_prostate_ce/ace021_dec14_prostatece_kolodziej/P-1

/askdrmyers.wordpress.com/2012/12/19/when-recurrent-pca-isnt-cancer/

ar.iiarjournals.org/content/24/2C/1179.full.pdf/

/www.ncbi.nlm.nih.gov/pmc/articles/PMC4527538

www.jurology.com/article/S0022-5347(16)31206-X/abstract
Posted 9/29/2017 4:43 PM (GMT 0)
Bobbiesan many thanks, I have been pondering this for 2 weeks.

Many have just given the advice that since the levels are low they are harmless now and in the future which is only subjective speculation.

USPSA offers the promise of early detection and better outcomes which I need and value being 58 years old.

I got tested on back to back days just to eliminate testing measurement error (got 0.01 and 0.009).

I am going to be tested every 4 weeks at LabCorp for at least 6 months in the hopes of a stable flat baseline. This is my plan as the medical system is not setup to proactively tackle this issue.

Will plow through the research and read the threads.

I am a retired CalTech pure science grad who happened to stumble into a living writing software most recently in BigData https://en.wikipedia.org/wiki/Big_data 4 years ago before retirement.

There is a mountain of USPSA testing data coupled with real life outcomes that has never been processed to assess BCR risk.

My margins are barely negative. Did you posit that negative margins are a drawback detectable USPSA level ?

My pathology was deemed positive and I got the thin margins rechecked by Epstein at Johns Hopkins.

my updated profile is

58 years old

RALP UCSF 11/19/15 Dr Carroll

PSA 19 months clean until positive at 22 months
1/14/15 5/4/16 8/29/16 12/1/16 3/3/17 6/5/17 9/15/17 9/16/17
<0.015 <0.015 <0.015 <0.015 <0.015 <0.006 0.010 0.009

1.2 cc tumor
clean margins, less than 0.1 mm from ink
Gleason 3+4 20% 4
PNI Present
AJCC pT2aN0

I thought I was done with prostate cancer / BCR this June 2017 when the testing threshold at LabCorp was dropped to < 0.06 and I cleared it being lower than the threshold making it 18 months.

I have taken and do take vitamins and in particular B vitamin supplements daily which baffles me because I tested below < 0.06 in 6/2017 while on them. Regardless I will stop taking them 3 days before retesting in 2 weeks which will give me a 4 week time window. I want to eliminate testing noise and establish a baseline rate of change.

It bothers me that I have gone from 0.006 < to 0.01 / 0.009 in 100 days which implies fast growth. The concern is a small amount of fast growing tissue that has always been there.

The new research seems to favor SRT at USPSA levels between 0.05 and 0.03 which I am only 3x aways from.

https://prostatecancerinfolink.net/2015/09/12/johns-hopkins-ultrasensitive-psa-after-surgery-predicts-biochemical-relapse/

jeff

A key risk factor is the PSA post op nadir being >= 0.08 which I do not know along with most other patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4106725/ as my nadir is presumed to be < 0.15.

Post Edited (jronne) : 9/29/2017 9:18:02 PM (GMT-6)

Posted 9/29/2017 5:02 PM (GMT 0)
Bobbiesan btw I am pretty comfortably retired now other than the new prospect of BCR. Feel free to contact me via email if you wish as I have tackled a number of issues regarding retirement planning that might be interested in with regards to investing and end of career management. I retired at age 54. I have a two retired friends in the early 60's that have gone down the SRT path before me after RALP.
Posted 9/29/2017 6:53 PM (GMT 0)

jronne said...

My margins are barely negative. Did you posit that negative margins are a drawback detectable USPSA level ?

Jeff

Didn't state it well, but was trying to say that if you did have verifiable positive margins, that might account for the small uPSA you are seeing. Then, a question you would want to ask a pathologist is "what is the gleason score of the tissue at that positive margin". Or, in your case, maybe "what is the gleason score of the tissue at that close margin"? There is some research out there about whether close margins are even a worry:

This one says monitor the close surgical margins (CSM) carefully:

/www.ncbi.nlm.nih.gov/pubmed/26259665

But, the world class Epstein, who did your 2nd and my 2nd, says not to worry:

urology.jhu.edu/newsletter/prostate_cancer410.php

Did Epstein state what the gleason score was at your "close surgical margin". Mine was 3 + 3 = 6 at my true positive surgical margin (PSM). Since true gleason 6 almost never metastasizes, I am hoping that, even if I have recurrent cancer cells, since they were gleason six's, I can hopefully outlive them. I don't really care about minimal uPSA and maybe some indolent cancer cells as long as I die of something else. Of course, you are younger so may see if differently.

Btw, with your science background, you might like to read a little about the biotin issue:

/endocrinenews.endocrine.org/january-2016-thyroid-month-beware-of-biotin/

/www.corelaboratory.abbott/us/en/offerings/assays/biotin-information.html

Your plan to test frequently for six months is great. That's what I did. I read that other guys tried to make sure they were properly hydrated before each test. The uPSA is testing down to the "trillionth"s. My assumption is that anything I can do to make my uPSA tests "standard" over time will make my velocity and doubling rate calculations more reliable. Warning--there will be other posters here that warn you to test no more frequently than 3 or 6 month intervals. I didn't agree, and tested myself monthly. If I was trending up fast, I wanted to start scoping out SRT resources sooner rather than later.

Thanks for the offer on retirement advice. My wife and I should be fully retired within a year, so may take you up.

Robert
Posted 9/29/2017 8:55 PM (GMT 0)
Jronne, like you, I was undetectable at <.02 until the 2 year mark, at which time I got a .02. I retested and it was the same. 4 months later I switched to labcorp with the .006 threshold, and got a .033. Ugh. Then 3 months after that, .033, no change. My pathology was same as yours, but I had introperative pathology show a positive margin, which led the surgeon to cut more, till he got negative final margin.
You are wise to move early, at least to be hooked up with the RO of your choice before you need to act.
FWIW, at my second .033, I requested an appointment at MSKCC with an RO, Dr Zelefsky. His comment was, "I don't believe in waiting until it hits some magic number. But I do believe in waiting until you have a clear trend."

No science, but I've seen enough guys here get a rise in PSA followed by a flattening out, to feel like I'm not in a big rush to do SRT, unless it's Clearly evident that I need to. But that's me, just my perspective.

As for my situation, next PSA in a month
Posted 9/29/2017 9:38 PM (GMT 0)
There is no uPSA below 0.03 that predicts for failure. I hope you will find a way to enjoy your excellent readings so far.
Posted 9/29/2017 9:38 PM (GMT 0)
Bobbiesan we are on the same page. My concern is the rate of change for PSA as opposed to the absolute value. Guys that have taken years for their PSA to rise and are older are not in my situation being 58 years old.

You seem in much better shape than me being 5 years undetectable. I would take 0.025 over 5 years as opposed to 0.01 in 21 months.

I wish I knew what Gleason grade was at the margin as my +4 in my 3+4 was between 10% (UCSF) and 20% (Epstein) in the post op pathology.

If I am doubling every 100 days then I am in immediate danger. I am 3x from possibly having to act at 0.03.

Getting tested every month will establish the trend, remove noise and sampling errors. I understand how data and testing works as critical thinking was the only job skill I learned at CalTech. If only my brain could save my body.

Have been taking B vitamins (and in a multivitamin) for over year including 330 mcg of Biotin which is 110% of RDA. Will stop at least 7 days before the test and rehydrate. Sort of a hail mary but it is important. I took the Biotin before I tested below < 0.006 in 6/2017 which I still cannot explain.

Will stop taking B vitamins at least a week before the test.

So I have slightly less than two weeks to go before a vacation preceded by a nerve wracking test. If my USPSA levels go down I will be relieved. If they go up I will be upset.

I would like to know what my odds are but there is really no good data out there for USPSA trends.

Regardless this is not the time to chill out and USPSA test again in 3 / 6 months.

Talked to the nurse practitioner at UCSF who authorized the 6 monthly USPSA tests without question. Unfortunately she spouted the old school line about my PSA level being undetectable and nothing would happen until it hit 0.1. She thought the step at that point in time would be an ultrasound which sounds odd for detecting cancer. Have you ever heard of an ultrasound with rising USPSA ?

jeff
Posted 9/29/2017 9:49 PM (GMT 0)
Pratoman thx we are in the same boat.

I am 58 years old which is slightly worse as younger people often have more aggressive cancer. I was 3+4 and rechecked by Dr Epstein. 20% +4. Negative margins but less than 0.1 mm.

I thought I was in the clear in June when I was below the 0.006 LabCorp tested threshold.

The trend and doubling time is everything as waiting for the numbers to rise to .2 in 6 months is pointless. For me as a 58 year old I need to ask is BCR inevitable ? That is the question is am wrestling with.

I want to get an RO that is not married to the number 0.2

what is the Decipher test and a low score of .37 ?

jeff
Posted 9/29/2017 9:57 PM (GMT 0)

jronne said...
It bothers me that I have gone from 0.006 < to 0.01 / 0.009 in 100 days which implies fast growth. The concern is a small amount of fast growing tissue that has always been there.

The new research seems to favor SRT at USPSA levels between 0.05 and 0.03 which I am only 3x aways from.

.

Jeff....I hate it that this stuff is invading your brain space. We're in the same neck of the PCa woods looks like. My take....

.006 to .009 or .01 in 100 days does not "fast growth" make. It means your PSA isn't at .006. That's the only conclusion I (choose) to take from it. These amounts of PSA are small....(at least yours is). *Any* movement will obviously appear large at these small amounts. It's not. It's not "fast growth".

Not to say it not changed. It has. "Fast growth" is not something that I believe fits your situation.

good luck going forward.

And fwiw....I'm a firm believer in InTheShop's take on this. The more one tests....the less down time we get from it. I get my blood drawn next week for my 3 mo. test. Do what makes you most comfortable.....but at least for me....if I were getting blood drawn every 4 weeks....hell....I'd go crazy. It's not gonna change anything.

Take care
Posted 9/29/2017 10:33 PM (GMT 0)

jronne said...

Talked to the nurse practitioner at UCSF who authorized the 6 monthly USPSA tests without question. Unfortunately she spouted the old school line about my PSA level being undetectable and nothing would happen until it hit 0.1. She thought the step at that point in time would be an ultrasound which sounds odd for detecting cancer. Have you ever heard of an ultrasound with rising USPSA ?

Jeff,

Sorry, no I am not very up on what future tests might be helpful and at what point. But I think others here have ideas on that.

The "old school line" tune was what I was saying about not a lot of consensus on what constitutes recurrence. Each doc seems to have his/her own "cutoff", and they are all over the place. Generally, urologists (surgeons) want to wait longer before "calling it". ROs seem to have lower cutoffs. It is a dilemma and bothers me, too.

Robert
Posted 9/30/2017 2:10 AM (GMT 0)
Jeff,
First I agree with everything Island time said, especially that you don't qualify as fast growth at this point. The .03 threshold as I understand it, is for guys with poor pathology. I don't think you qualify as poor pathology.

Re the old school thinking of your NP, I feel you, my Dr and his NPs keep telling me not to worry, .033 is still undetectable, and they do nothing until it hits .1, at which time they do imaging. So I got mt @ss to an RO on my own.

To answer your other question, Decipher is a genomic test that is done on the tumor tissue (your surgeons path lab still has it). When I first lost the "<" my surgeon sent the tissue to ONCODX FIR THAT TEST. ITS SUPPOSEDLY VERY ACCURATE BUT NOT PERFECT. TESTS I THINK, 124 Different factors THT hve been shown to predict recurrence, better than Gleason score. Under .45 is considered low risk. So my .37 slowed me down.

You might want to c0nsider asking about it. Medicare paid for it with me. Not sure about private insurance. Or with .01.
Posted 9/30/2017 3:00 AM (GMT 0)
Bobbiesan,

In many respects delaying the BCR pads the surgeons statistics as the guy that is at a PSA of 0.15 at 5 years will BCR at year 6 but is clean at year 5.

By moving the finish line closer you win the race.

I suspect the same thing might happen for CyberKnife treatments some of which claim 94% BCR free at 5 years.

The functional definition of BCR needs to be revisited as most post RP guys that have a PSA 0.1 are well on their way to a PSA 0.2 and higher.

https://prostatecancerinfolink.net/2016/09/21/very-early-salvage-radiation-has-up-to-fourfold-better-outcomes-and-saves-lives/
Posted 9/30/2017 3:17 AM (GMT 0)
island time

thx for the advice.

My hope is that by getting tested monthly I can see a flat line or at the very least numbers bouncing around a flat line.

This would be a great relief.

What I do not want is a rising trend line over months.

Taking the test creates anxiety as well as not taking the test and wondering *** might be going on.

When you have more data points you are not as keyed in on any one data point as it could be an outlier for whatever reason.

When I only have one number to deal like the < 0.006 last June I have no idea what to make of it.

I would much rather have 6 test results over the course of year all at 0.01.

I have no idea as to have natural variation there is in USPSA levels on a month basis for each guy.

Maybe I get tested in a few weeks and my PSA goes down.

There is absolutely no literature or studies about this that I can find so I am out here on my own with a few others which is why I listen to all opinions I can get. Thanks.

I was taking 110% of the daily RDA for B vitamins for the last year which can screw with the USPSA test raising numbers.

I stopped taking them today and will be clean for 2 weeks.

If the darn LabCorp USPSA test had a stated margin of error such as +/- 0.004 then you could say 0.009 and 0.005 could be the same with no rise at all.

jeff
Posted 9/30/2017 8:50 AM (GMT 0)
Jeff I would take those numbers any day like TA says go enjoy life!

Larry
Posted 9/30/2017 5:03 PM (GMT 0)
Jeff,

I'm 57yo and 18-months post op. I wish I had your psa numbers, they look great from where I sit.
My PSA today is 0.12 and has increased steadily over the last 18-months, so this week my Uro decided to refer me to a Radiation Oncologist at Levine Cancer Institute for what I assume is more treatment.
To date my Uro never mentioned BCR, when I inquired he said the RO could answer any question concerning
the latest and greatest Scans and possible Treatments, he called it IMRT, not SRT.
I also thought I was cured and this ride was over, but I was sadly mistaken. Now I'll try for a second cure and hope for the best, that's all we can do. Stay strong and live life, that's what I plan to do!
To answer your question about PSA levels, in my case they continued to rise.

Quick PSA History:

05/2016: PSA=.01
08/2016: PSA=.03
12/2016: PSA=.04
04/2017: PSA=.07
06/2017: PSA=.09
09/2017: PSA=.12
Posted 10/1/2017 12:50 AM (GMT 0)
Jeff,

Quit worrying. Your scores all look great to me. All the research and reading and statistics won't tell you a thing about where your psa is going.

Live one day at a time.
Posted 10/2/2017 5:00 AM (GMT 0)
I started SRT when my PSA hit .05. You are still far below that. I think you are right about the desirability of having more data. That will help you ascertain when or if a clear trend has emerged.
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