Talk me down from the ledge!

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JayMot
Regular Member


Date Joined Feb 2016
Total Posts : 152
   Posted 12/5/2017 2:54 PM (GMT -7)   
OK, I have been on this forum since my diagnosis. I have probably read every post and all the replies dating back 10 years or so over that time. I have also replied to many posts offering my personal experiences to others. I know what the responses to my question will be, BUT I have to ask it anyway. I need some kind of reassurance.

I just go my 18 month post-op uPSA results today. I want to say that I lost my '<', but I'm not sure it matters with results being calibrated low. All of my prior uPSA's have been <.006. Today, I got .007. I have been using the same lab (Labcorp) since day 1. So, here it is.....should I be concerned?

There is nothing like the sinking feeling of not seeing that '<' for the first time. I know a lot of you guys out here would kill for a reading like that, but, for me, no '<' is freaking me out. Not the holiday gift I wanted.

Anyway, I guess I'll just wait the 3 months and test again to see if any trend is starting. I will not sleep well tonight.

J


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

Age at Dx: 54 (DOB: 01/28/62)

08/31/15 PSA 2.5;
01/01/16 Urinary Frequency;
02/05/16 DRE Pos;
02/22/16 Biopsy;
02/26/16 Dx: 7-12 positive; (5) 3+3=6; (1) 3+4=7; (1) 4+3=7; T2B;
03/11/16 Bone Scan Neg;
03/23/16 CT Scan Neg;
03/31/16 Surgery Consult UPENN;
04/08/16 RT Consult/2nd Op Fox Chase CC upgrade to 4+4;
04/14/16 3TMRI "organ confined", EPE-, SV-, LN-;
06/01/16 DaVinci @ UPENN (Dr. D. Lee);
06/08/16 Catheter Out;
06/08/16 Post-Op Path: EPE+, Marg +, SV-, LN-, G7(4+3) (G4 80% - G3 20%), tumor vol 25%, T3a;
07/01/16 Start 5mg Daily Cialis, 20mg once a week on Friday's;
07/06/16 Decipher 0.56 (Average Risk), 5 Year Metastasis 7.6%, 10 Year PCa Specific Mortality 6.9%;
08/01/16 Penile rehab started (Pump);
08/31/16 uPSA <.006;
12/01/16 uPSA <.014 (? same lab);
01/30/17 Decipher GRID PORTOS: [Avg ADT Response (21%), Avg Docetaxel Sensitivity (56%),
Lower RT Response (45%), Avg Dasatinib sensitivity (38%), High Genomic Gleason Grade (81%),
High Metastasis Risk (70%), High Tumor Cell Proliferation (82%), Avg AR Activity (56%)];
03/01/17 uPSA <.006;
06/01/17 uPSA <.006;
09/01/17 uPSA <.006;
12/01/17 uPSA .007;

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8951
   Posted 12/5/2017 3:07 PM (GMT -7)   
I think it's a mistake to use the super-ultrasensitive PSA test - for the very reason you are now illustrating so well.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

alephnull
Veteran Member


Date Joined Dec 2013
Total Posts : 729
   Posted 12/5/2017 3:35 PM (GMT -7)   
I agree with TA.

Also, since it is a rise you can request a retest sooner than another 3 months.
Have one done in 2 weeks.
PSA at diagnosis 20.6, age 54 in 2013, 12 out of 12 cores positive
My PSA Curve
Robotic prostatectomy 11/2013, all positive except bladder neck invasion
Degarelix two months, 2 years Lupron, Radiation after 18 months
GS 9 - 4+5 , Stage pT3b N1 M1c - Undetctable 41 months
PSA rise <0.1 to 0.18 to .71, last rise in 4 months
Csodex n Lupron

InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 7966
   Posted 12/5/2017 3:58 PM (GMT -7)   
that's not much of a change, and nothing to get worked up about. For most practical purposes, it's the same number.

If it ever goes up an order of magnitude, then you can worry.

until then, chill, enjoy life,
Andrew
I'll be in the shop.
Age 57, 52 at DX
PSA:
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16, .4 10/16, .4 5/17, .3 10/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 4981
   Posted 12/5/2017 4:07 PM (GMT -7)   
Jay, seriously. And for me of all people, to say that, it has to be nothing.
I'm doing the same test I drop the third digit, so at my last 3 m0nth test, when I went from .033 to .046, I really went from .03 to .04.

So you went from .00 all the way up to .00!.

Some of us are gonna recur. Nothing we can do about that. But even if you are one of those, you are so far away from having to do something, that it's not worth thinking about right now.

Now get off the ledge bro.
Dx Age 64 Nov 2014, 4.3
BX 3 of 12 cores positive original pathologyG6, G6, G8 (3+5)
downgraded to 3+3=6 by tDr Epstein, JH
RALP with Dr Ash Tewari Jan 6, 2015
Post surgical pathology – G7 (3+4), ECE, Margins, LN, SV all negative
PSA @ 6 weeks 2/15, .<02, remained <0.02 until January 2017, .02, repeat Feb 2017, still .02. May 2017-.033, August 2017- .033 November .046
Decipher test, low risk, .37 score

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4155
   Posted 12/5/2017 4:51 PM (GMT -7)   
It is unreasonable to expect that psa will come out exactly the same every time you test. Everything has normal variations including psa. /would you expect your cholesterol readings to be exactly the same each time you test it?
70 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, 4 weeks of urinary frequency and urgency; no side affects since then. 6 years of psa's all at <0.1.

BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 2651
   Posted 12/5/2017 5:18 PM (GMT -7)   
JayMot said...
OK, I have been on this forum since my diagnosis. I have probably read every post and all the replies dating back 10 years or so over that time. I have also replied to many posts offering my personal experiences to others. I know what the responses to my question will be, BUT I have to ask it anyway. I need some kind of reassurance.

I just go my 18 month post-op uPSA results today. I want to say that I lost my '<', but I'm not sure it matters with results being calibrated low. All of my prior uPSA's have been <.006. Today, I got .007. I have been using the same lab (Labcorp) since day 1. So, here it is.....should I be concerned?

There is nothing like the sinking feeling of not seeing that '<' for the first time. I know a lot of you guys out here would kill for a reading like that, but, for me, no '<' is freaking me out. Not the holiday gift I wanted.

Anyway, I guess I'll just wait the 3 months and test again to see if any trend is starting. I will not sleep well tonight.

J


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

Age at Dx: 54 (DOB: 01/28/62)

08/31/15 PSA 2.5;
01/01/16 Urinary Frequency;
02/05/16 DRE Pos;
02/22/16 Biopsy;
02/26/16 Dx: 7-12 positive; (5) 3+3=6; (1) 3+4=7; (1) 4+3=7; T2B;
03/11/16 Bone Scan Neg;
03/23/16 CT Scan Neg;
03/31/16 Surgery Consult UPENN;
04/08/16 RT Consult/2nd Op Fox Chase CC upgrade to 4+4;
04/14/16 3TMRI "organ confined", EPE-, SV-, LN-;
06/01/16 DaVinci @ UPENN (Dr. D. Lee);
06/08/16 Catheter Out;
06/08/16 Post-Op Path: EPE+, Marg +, SV-, LN-, G7(4+3) (G4 80% - G3 20%), tumor vol 25%, T3a;
07/01/16 Start 5mg Daily Cialis, 20mg once a week on Friday's;
07/06/16 Decipher 0.56 (Average Risk), 5 Year Metastasis 7.6%, 10 Year PCa Specific Mortality 6.9%;
08/01/16 Penile rehab started (Pump);
08/31/16 uPSA <.006;
12/01/16 uPSA <.014 (? same lab);
01/30/17 Decipher GRID PORTOS: [Avg ADT Response (21%), Avg Docetaxel Sensitivity (56%),
Lower RT Response (45%), Avg Dasatinib sensitivity (38%), High Genomic Gleason Grade (81%),
High Metastasis Risk (70%), High Tumor Cell Proliferation (82%), Avg AR Activity (56%)];
03/01/17 uPSA <.006;
06/01/17 uPSA <.006;
09/01/17 uPSA <.006;
12/01/17 uPSA .007;


Well, if you should be concerned, then I am doomed. Since I lost my < something like 2 1/2 years ago, and that meant I was .01, 1.5 times higher than you are now, and I have since doubled to .02, 3 times higher than you are now. PLUS I AM HIGH RISK, ( I can't see my own signature as I type, so how long ago was that? a year? 9 months? EDIT: OK, just looked, took me 18 months to double after losing my <, so almost a year ago) Anyway, I have not so far been too concerned about it, though I seem to be slowly working my way towards that .03, which some folks say that means I am sooner or later going to BCR. So maybe I will want to do something about that before I actually do BCR. But I will think about that later. If I were you, I would not totally panic quite yet. There is always time for that later.

Post Edited (BillyBob@388) : 12/5/2017 6:14:20 PM (GMT-7)


Jack & Diane
Regular Member


Date Joined Sep 2016
Total Posts : 63
   Posted 12/5/2017 5:26 PM (GMT -7)   
JayMot,

We are in the same boat as you. Lost the < sign last week and went up from <0.006 to 0.014. It is a slap in the face for sure. Still trying to digest this.
Wife posting for spouse - 49, age at dx 48
06/2016: PSA 6.48
07/2016: PSA 7.22 FPSA 10% 12 Core Biopsy Negative
10/2016: PSA 6.30 FPSA 13%
12/2016: MRI W/COIL PI-RADS 5 with Probable EPE, Bones/LN Clear
12/2016: Biopsy Two cores 3+4 and Seven cores 3+3
02/2017: RP at University of Chicago Pathology 3+4 Grade 4 component is 5%
Prostate: 32.7 gm Tumor Volume Estimate: 35%
No EPE or lymphovascular invasion 13 lymph nodes, Seminal vesicles, vasa deferentia, no tumor present
High grade prostatic intraepithelial neoplasia, Perineural Invasion: Present
Tumor involves proximal basilar margin of 2.0 mm Gleason at margin is 3 pT2c,N0,MX,R1
04/2017: 6 Week PSA <0.01
05/2017: 3 Month uPSA <0.006
8/2017: 6 Month uPSA <0.006
11/2017: 9 Month uPSA 0.014
100% Dry

BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 2651
   Posted 12/5/2017 6:12 PM (GMT -7)   
Pratoman said...
Jay, seriously. And for me of all people, to say that, it has to be nothing..


Very true, Pratoman! Ken, if you are saying not to worry yet, it must really be so! yeah

garyi
Regular Member


Date Joined Jun 2017
Total Posts : 315
   Posted 12/5/2017 7:07 PM (GMT -7)   
JayMot said...
.....no '<' is freaking me out.
Anyway, I guess I'll just wait the 3 months and test again to see if any trend is starting. I will not sleep well tonight.

nono   Have a glass of wine, relax, and get REAL smilewinkgrin

island time
Veteran Member


Date Joined Dec 2014
Total Posts : 1294
   Posted 12/5/2017 7:37 PM (GMT -7)   
In our minds......the difference between having a "<" sign and not having a "<" sign is the difference between having cancer and not having cancer. It's ridiculous. I'm with TA. Two digit readings at least gives one a break. Three digit readings is asking for a hard life.
PSA 2010 thru 2014...4.0 +/- .7
Dx 12/14 @ 56 yo...2 cores G6 <5%, 1 core G6 20%, 1 core HGPIN.
RALP 11/25/15...3+4. 3 to 5 mm surgical margin 15% involvement pT2+
2/16-.01...4/16-.00...7/16-.00...10/16-.01...1/17-.01...4/17-.02...7/17-.02
10/17-.02

island time
Veteran Member


Date Joined Dec 2014
Total Posts : 1294
   Posted 12/5/2017 7:44 PM (GMT -7)   
I remember where I was the day I got the phone call from .00 to .01 a year after surgery.

It was like I was being told I've got terminal cancer with 6 months to live.

browntrout
Veteran Member


Date Joined Apr 2014
Total Posts : 542
   Posted 12/5/2017 8:34 PM (GMT 0)   
I believe this small change is what Doctors refer to as "noise" and little concern. Sincerely hope that is your situation.

Wings of Eagles
Veteran Member


Date Joined May 2013
Total Posts : 626
   Posted 12/5/2017 10:11 PM (GMT -7)   
Jay Mot,
Get ready for some hard love brother!
I agree with everyone else that this should be of very little concern, and the best argument as Tall Allen says against doing the ultrasensitive test. You should worry more if other blood levels change such as phosphates, RBC and others such as cholesterol or blood sugar-glucose. Thats what my doctor told me when he saw my triglycerides,he was actually more worried about me having a stroke than a rising PSA.
One day,I most assuredly will lose my less than sign, but at that time I will embrace it and figure out my next step, my next treatment. For me coming down from 71 to undetectable was miraculous, try to enjoy your "almost" undetectable (it probably still could be termed that).

But for some, their PSA rises out of control, My friend from DX at 92 PSA to earlier this year, two years later it rose to 1000. He is still working every day, still fighting, and doxetaxel is bringing his PSA down again. He surely has a lot more to worry about than a miniscual rise in PSA. Or look at Todds 3150 at Dx or Charles at 5008 PSA. Now THAT was worrisome, but both are doing well lately I might add.

Suppose yours was .005 and now is .007. ,a theoretical 40% rise. Sounds big but as Pratoman said, it is more like from zero to zero, or like the saying, nothing from nothing is nothing. Another way to see it is your PSA is still only 1/142,857th of my friends, and yours is 99.999993% less than his! So get off that ledge right now!

Dan the Wing man aka WOE
P.S. You are amazing in reading all these posts here brother, there has been 416,295 of them!. I'm fortunate to read 20 per week for the past four years! You are about 412,265 ahead of me!!
DX PCa-Nov/2012,age 57=GS 3+4=7 & 4+3=7 w/mets PSA=71.2 start Lupron PSA=,

1/13=2.7 2/13=0.7 3/13=0.2 6 /13=0.1
9/ 13=0.7 11/13=1.4 12/13=2.7 4/14=2.7
6/14=3.8 8/14=5.2
Zytiga:
9/14=1.4 11/14=<0.06 12/14=<0.06 1/15=<0.06 3/15=<0.06 6/15=<0.06
9/15=<0.06 12/15=<0.06 3/16=<0.06 6/16=<0.06 9/16=<0.06 12/16=<0.06
3/17=<0.06 8/17=<0.06
Age 62

Post Edited (Wings of Eagles) : 12/5/2017 10:33:25 PM (GMT-7)


CuriousCharles
Regular Member


Date Joined May 2017
Total Posts : 186
   Posted 12/5/2017 11:27 PM (GMT -7)   
I can empathize with the fear of any increase in PSA results, either after initial treatment, or after subsequent treatments.

Last month my own PSA rose from 1.4 to 1.7, approximately one year after being on Xtandi. Things could be starting to change, although I don't have any new symptoms or imaging results as evidence. I am grateful for my lack of symptoms, and relatively stable scans, to date. I realize that eventually I will have to touch base with my medical advisors and decide upon another type of treatment.

Tall Allen mentioned a while back that people can be more resilient and adaptable than they think, given some time to adjust to things. I have personally found that to be the case in the four years since my initial diagnosis, and a pretty wild PSA "roller coaster" ride, so far (see Below).

I attend some face-to-face cancer support & prostate cancer support groups each month. I've found them to be helpful for getting these kind of feelings out into the open, and sharing them in a mutually supportive setting, in addition to posting on-line to places like this.

I encourage you to Live Well in the present moment, and to take care of yourself as a whole person in relation to others and everything else in this wonderful world. It's good for you. Of course, keep tabs on the medical "details", and things you and your doctors need to do there, but also make room for some time to just "be", and for keeping the totality of your life in balance. You will know it when it is happening.

Charles
Dx Nov 2013 Metastatic Prostate Cancer at Age 65
Numerous Bone Mets and Lymph Nodes, PSA 5,006
ADT Lupron + Zometa, PSA Nadir 1.0
Resistance after two years.
Short rechallenge Casodex.
Oct 2016 Provenge
Dec 2016 Start Xtandi, PSA 95
Sep 2017 Xtandi PSA Nadir 1.2
Nov 2017 PSA 1.7

JayMot
Regular Member


Date Joined Feb 2016
Total Posts : 152
   Posted 12/6/2017 4:33 PM (GMT -7)   
Hey guys, as always, thanks for the assistance and encouragement. It's a day later and I mentally feel a lot better. I have a lot to live for, and that's exactly what I plan to do! Happy Holidays to all. J

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3016
   Posted 12/6/2017 6:36 PM (GMT -7)   
JayMot,

I have used Labcorp forever. There have been times where Labcorp records .006 or .015 without the < only to find out that it was an error on their side because subsequent readings had the <....Hang in there...

Jerry L
11/09 Dx at Age 44 ----- 4.03
12/09 DaVinci Surgery,t3b,g9 <.05
2/10 Adj. Radiation ----------- <.05
3/11 PSA Rise/Scans/Spot ---- .09
on Pelvic Bone
4/11 HT/XGEVA/Spot Radiation -- .06
2011-2012: ADT3: 15 months
2013-2015: ADT3 VACATION #1: 36 Months
2016: Spot on Rib; .07; ADT3; Spot Rad
2017-?: ADT3 VACATION #2:

Ravineman430
Regular Member


Date Joined May 2014
Total Posts : 164
   Posted 12/7/2017 8:30 AM (GMT -7)   
I am 3 1/2 years out and my uro oncologist agrees with Tall Allan on this one. I am now testing my PSA every 6 months and do NOT do the ultra sensitive test. It works for me.
Speak to your doctor and do whats best for you, but it sounds like you should at least consider this too, make living life with joy much easier for me, and I suspect it will do the same for you too.
PSA before RRP May '14 6.44

Removed prostate, seminal vessels. G7 (3+4) 5% involved
pT2c Post RRP PSA <.05. 8 month post RRP PSA 0.12
33 SRT treatments finished May 4, 2015

October 2016 PSA still undetectable
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