Almost got to 5 years (sigh)

i'm not sure what your doctor would do but I would do a retest and take it from there. you appear to still have SRT as a back up and I would initiate that treatment early if BCT is confirmed. good luck man!

ed

There's no need to do anything with your good path report. I think most doctors wait for every 3 months, but because your cancer had a low PSA output from the start, I see why you are anxious. If it hits 0.03 anda pattern of steady increases starts developing, you can comfortably decide what to do then. If not, you're fine.

I think that TRT is not a problem for cancer growth, but it may be a problem for monitoring it with PSA. If you don't want to stop TRT completely before your next PSA test, maybe you can talk to your doctor about taking Proscar. That may be enough to drive the PSA back down if it is from benign tissue, and if it does, you know the PSA was not from cancer.

Graytech-

Bobbiesan had a focally positive margin and it was only GS 3+3 at the margin. So maybe the prostatectomy left some GS 6 behind that will never progress (we know that about half of all GS 6's never progress in 20 years), or maybe it left behind some benign tissue that is exhibiting some BPH under the influence of the DHT that is increasing now because of the TRT. Or maybe there is some cancer starting to progress there. It is too early to know. All one can do is monitor it for now.

There is just no evidence so far that TRT makes PC grow faster in this situation. But the evidence that it doesn't make PC grow faster in this situation (unlike the castration situation) is sparse and comes from retrospective, uncontrolled studies. So for now I think many Uros would give it after undetectable PSA has been reached, but they would watch it carefully.

Thanks to all responders. You guys are great!

F8, yeah, no need to wait once the path is laid out. Looks like your RO did good work!

Graytech, those 70% odds on SRT/ADT are pretty good. Really hoping best for you. Your friend could just search web for “TRT after prostatectomy”, and Tall Allen has summarized the deal pretty well elsewhere on this site. Here is how I looked at it before starting TRT: My “unassisted” T level was running about 300 for years. After my prostatectomy, any remaining prostate cells got their T needs fulfilled by about the T=100 blood level, certainly before my T=300 natural rate. So, by the “saturation theory”, boosting my t from 300 to 700 via injections isn't going to do me any harm, and makes me a functional human. Satisfies the docs' “first, do no harm” command. Any residual prostate cells I have, cancer or not, have already got the T they want, so the 300 to 700 boost does no further harm. At least that's the theory. Looks like I may have bet my life on the theory. Hope it's correct. My uro is a City of Hope trained guy and seems pretty up to speed, so I trust him.

Yes, Pratoman, you have nailed our situation pretty well. Hope best for us both.

Tall Allen, as usual, you provide good, succinct analysis and data.

Guess it will be incumbent on me to provide additional updates to this thread to document any added knowledge I gain. I will do that. Seems issues of TRT, use of uPSA tests, etc. are in flux, so I will keep you all posted on my case progress.

To start with, and with respect to Tall Allen's comments on benign tissue, BPH and DHT, let me post the following that happened to me cal year 2016. Don't know if any of it is relevant or may explain uPSA uptick, but I will post more as I get it:

-------- in 2016 -----------------------------------------------------------------------------

in 2016, I dropped 20 lbs, through low carb diet and exercise; pushed myself down to normal blood glucose after being pre-diabetic for decades (yeah!); tooks lots of yoga classes

made major effort to reduce BPA in my home environment (got rid of plastic plates, storage containers, etc.-replaced with pyrex)

made major effort to boost natural T through supplements: nettle, DIM, resveratrol, copper and zinc

in Aug., 2016, to see how my TRT injections were affecting me, and in prep for major weight lifing effort starting end of 2016 (well, major for a 67 yr old..), had a LabCorp panel run for myself and got the following readouts:

Testosterone,Free and Total
:

Testosterone, Serum 563 ng/dL 348 – 1197 range

Comment:
Adult male reference interval is based on a population of lean males
up to 40 years old.

Free Testosterone(Direct) 8.7 pg/mL 6.6 - 18.1 range

DHEA-Sulfate 46.1 ug/dL 30.9 – 295.6 range

Estradiol, Sensitive 44.2 High pg/mL 8.0 – 35.0 range *** weird ***

This test was developed and its performance characteristics
determined by LabCorp. It has not been cleared by the Food and
Drug Administration.

Methodology: Liquid chromatography tandem mass spectrometry(LC/MS/MS)


Sex Horm Binding Glob, Serum 34.5 nmol/L 19.3 – 76.4 range




In Dec, 2016, started 3x per week weightlifting under Stronglifts regimen; supposed to boost T temporarily

-------------------------------------------------------------------------------------------------------------------

Robert

got uPSA retest two weeks after last uPSA

So now have:

04/03/12 - 02/03/17 undetectable

02/03/17 .024
02/17/17 .025

Have been reading a lot on BCR and benign tissues left after RALP. Seems to be quite a bit more in the literature in last few years about these topics since advent of uPSA. Seems robot procedure is somewhat worse on leaving benign than open prostatectomy.

Also, there seems to be some movement toward looking at early BCR based on three categories of rising uPSAs:

undetectable -- < .030

low detectable stable -- falling between .030 and .200 but seems to be pretty stable over time, velocity < .050 ng/ml per year.

low detectable unstable -- falling between .030 and .200 but seems to be pretty unstable over time, velocity > .050 ng/ml per year and seems to be continually rising


Also, that "Fewer than a third of patients with BCR after RP experienced systemic recurrence. In those with progression BCR predates metastatic disease progression by an average of 8 years and prostate cancer specific mortality by 13 years."

Not sure where to go next, but am probably going "off to see the wizard" (i.e., uro) in near future. May get one more uPSA in two weeks just for data before going, though.

Robert

Bobbiesan-

I think you are tracking this much too closely - that will only cause anxiety and sub-optimal decision-making. I don't think any of the studies of uPSA had testing more frequently than every 3 months. As Pratoman said, there are diurnal variations.

You are safe for now and there is no known cause for concern. I hope that is a relief for you to know.

For anyone interested in uPSAs, PCa recurrence and testosterone supplements (TRT), here are my results since noticing a uPSA rise after five years of undetectable uPSAs:

This is an update of the self-monitoring I have done since first noticing a detectable uPSA in Feb. 2017. All uPSAs (about every six months) since RALP in April 2012 had been undetectable ( < .006 until summer 2013, and
< .015 thereafter, until Feb. 2017). All uPSAs I have had since 2012 were from LabCorp on Roche ECLIA.

All following done on LabCorp Roche ECLIA "ultrasensitive w/o serial", at LabCorp Dallas. All blood draws done between 11:00 and noon, about four weeks apart.

.
.
.
Feb. ‘17: .025
.
. .... stopped Testosterone Cyp. injections here
.
Mar. ‘17: .027
.
. .... started pygeum Africanus supplements
.
Apr. ‘17: .024
.
. from about here on, did blood draws fasting, and
. abstained from everything except prescription meds
. for three days prior to draw (e.g., aspirin, vit/min)
May ‘17: .025
.
.
.
Jun. ‘17: .018
.
.
.
Jul. ‘17: .018 stopped pygeum Africanus supplements
.
.
.
Aug. ‘17: .017
.
. will probably restart Test. Cyp injections here
. and continue to monitor uPSA every 4-8 weeks until
. annual Dec appt. with urologist



So, there it is. The pygeum Africanus (100 mg daily) was to attempt to eliminate any BPH that might be going on with benign prostate cells left at my margin+. I was off the pygeum for the last month shown above, so apparently the pygeum didn’t matter.

Assuming the LabCorp uPSA is pretty reliable, I cannot fathom why the trend has been this way. At least it’s not headed up right now.

Will post more down the road.

Robert

Nice! Thanks for the update.

Hi Robert,

I am in a very similar situation to yours regarding a surprise result for my uPSA also
from Labcorp using the Roche ECLIA methodology. I had my RALP at Hopkins in August 2013, and like you had a focal margin with G 3+3. For instance during all 2016
my uPSA was < 0.015 ng/ml, then in March 2017, I had another uPSA and Labcorp reported as < 0.006 ng/ml. I do not know why the lower limit of detection (LLD) changed in this case. So when I got my August 2017 uPSA result of = 0.016 ng/ml it was a shocker! Just above the LLD from the essays that were used until 2016, but significantly larger than the LLD for March 2017 test. I have tried to call Labcorp to find out what is the LLD for my August 2017 uPSA, what is the error bar of the measurement, etc... but could not get through yet.

Given this surprise, I posted a quick note here, got some nice responses and set a few consultations into motion. I consulted my Urologist of many years and showed him the latest results. He dismissed the number as just a fluctuation and suggested that I retest in 6 months. He said that if there are three consecutive raises, then there is something to talk about. I also consulted a radiation oncologist at Hopkins, and he did not seem to be concerned yet, given that I had a positive margin with G 3+3, however he suggested that I retest in 3 months, and mentioned that if the uPSA reached 0.03 ng/ml that I should consider early salvage radiotherapy. I am also consulting another radiation oncologist at Dana Farber to find out his opinion.

I hope that your case is just a fluctuation, and that there is nothing to worry about.

I will keep you posted on what I learn about my own situation. I wish you the best.

Joe.

DECEMBER 2018:

To update, I have been watching a mostly steady uPSA of mid .02x last eighteen months. But in recent months, since Aug., has started to tick up: .030, .034, .048 (Nov. 30). I think I was similarly hydrated, etc., for all of them.

Today (Dec. 14), I had my 12 month visit with uro --same one that did my RALP in 2012 and has had me on TRT last few years.


Here are the main things discussed with him:

(1) He said the .1 from last Fri. blood draw for his standard PSA could be anything from .051 to .149. It would still report as .1 reading! I showed him my three most recent LabCorp uPSAs, August, early Nov. and late Nov.: .030 .034 and .048. I did not know that the standard PSA only ever shows .1, .2, .3, etc. I thought once it got to .1, its lower limit, then it would show more decimals, like .12, .17, etc. Nope. He and I had quite the discussion about PSA vs uPSA testing. We amicably agreed to disagree (ha). I continue to get my own LabCorp uPSA because I want to know and want to see the trend. He likes the standard because, over the ranges it shows, like .1 to .2, treatment wouldn’t change as a result, so why get more worrisome details. Hmmm...

(2) He said my PSA could level off at any point from now on, or I could keep seeing a rising trend. He has seen both. The former would be of no concern, and I would just outlive whatever it is. If the latter, it is most likely a local recurrence, and some form of radiation would be the next step. He did not push me one way or the other.

(3) I told him I would be just fine if it stabilized or just rose linearly at a rate I thought I could outlive. But I also told him PCa is a sensitive issue in my household. Wife’s father died of PCa with advanced brain mets; her brother just finished his primary radiation for PCa. My uncle died of PCa, and my dad died of abdominal cancer (origin unknown). He understood our feelings on this.

(4) I asked him what cut-off PSA for SRT he personally would use in a case like mine. He said there is no cut-off per se, each patient case is unique. Depends on path at surgery, current health, expected longevity, etc. He did say some think .2 is definitely BCR re SRT, but said other evidence says "the earlier the better", but said studies are not conclusive on that.

(5) He said before I went for SRT, if I do, there are two scans that might help. The Axumin would only be good for PSA .4 or higher. The PSMA would be useful at much lower levels, but (he thought), the higher the PSA at time of test, the more accurate it is. Neither test is available in my location currently. He said the scans would help if the problem was, like in a node, so then why radiate the prostate bed? We discussed that with 3+4=7, one would not think it was micromets, and with margin+, it would probably be local to prostate bed. But who knows for sure?

(6) (edited to add) He said I could not get the Decipher tests because path tissue is only good for three years for that test...have you guys run into that??

(7) He wanted to see me again in six months, with another standard PSA just before.

(8) Oddly, the topic of TRT injections, which he has had me on since about March 2016, did not even come up. He didn't say to stay on or go off. I myself have decided to discontinue. The injection two weeks ago was my last. When I purposefully went off my injections mid 2017 for six months, I saw a nearly 50% drop in my uPSA. And it stayed down for months until I started injects again. No explanation why. I have decided I do not need that kind of added "static" in a uPSA trend I am trying to monitor to time or even start SRT. My T tested 750 last week (his test, middle of 14 day injection cycle) and that is where (in past visits) he said he likes to keep his TRT guys. But I think, from my past tests, going off TRT I will bounce around in 300's, maybe low 400's, due to better fitness and weight-lifting. At times in past I was in mid 200’s. But am much more fit now. Will have to go cold turkey for a while, maybe forever. When I see him again in six months, he may say it was unnecessary to go off TRT, but, oh well.

-----------------------------------------------------------------------------

So, I am in “watching PSA” limbo for a while. Aren’t we all?

Any comments on above or otherwise would be welcome. I value your ideas and experience. This is a good board and good people.

Also, looking ahead, if anyone has thoughts about U.T. Southwestern (Dallas) or MD Anderson (Houston), esp. docs you would recommend there, please chime in.

Much thanks,
Robert

Watch and wait. If you're consistently testing between .05 and .1, I'd talk to an RO for an opinion.

Otherwise, watch and wait and live life.

Andrew

mspt98,

I inject in quad. Described in a prior posting in following on 3/18/2018 @ 2:04pm:

https://www.healingwell.com/community/default.aspx?f=35&m=3991516

Here is another good resource for you, describing thigh locations:

https://www.med.umich.edu/1libr/spinalcordinjuryprogram/imselfinjectiontesto.pdf

I was on androgel for couple years, but doc's T tests for me showed it wasn't absorbing very well. So he was fine with me going to injections, and had his nurse train me.

I put some info about costs in my posts around June '17 in following thread:

https://www.healingwell.com/community/default.aspx?f=35&m=3870861

Please let me know if I can help. Except giving you my leftover, and soon to be useless, T-cyp (laughing and sighing at same time...)

Robert