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Thread: Crossed over into the "normal" zone...

  1. #151
    Top User garyi's Avatar
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    Apr 2017
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    Quote Originally Posted by DjinTonic View Post
    Congrats! Time to change the thread to How Low Can George Go?

    Djin
    0.00000 would be good
    72...LUTS for the past 7 years
    TURP 2/16,
    G3+4 discovered
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor still in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    Radiation Procitis, and Ulcerative Colitis flaired after 20 years
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19, .074 7/19
    We'll see....what is not known dwarfs what is thought to be fact

  2. #152
    Congratulations George!
    Born in 1962
    PSA 6.5, free PSA 10% Oct 2014
    10 biopsies taken Oct 2014
    6 biopsies G 3+3
    2 biopsies G 3+4
    T1c
    Total of 30 mm cancer of 130 mm biopsy samples
    da Vinci surgery jan 7th 2015, nerves spared on one side and "almost all" on other side
    Catheter out jan 23
    Feb 2nd, one shield/day almost continent
    March 17 2015 PSA<0.1
    Final stage pT2, no external invasion, no vesicles invasion, no lymph node invasion, small positive margin
    August 24 2015 PSA <0.1
    February 18 2016 PSA <0.1
    September 12 2016 PSA <0.05
    April 14 2017 PSE <0.05
    October 2017 PSA 0.05....
    Jan 2018 PSA 0.05
    Aug 2018 PSA <0.05
    Feb 2019 PSA 0.06
    Aug 2019 PSA 0.06

  3. #153
    Quote Originally Posted by garyi View Post
    0.00000 would be good
    I just got a 0.000 and it has me wondering what the actual number is
    Late 2012: PSA 4, age 62 all DRE's 'normal'
    Early 2014: PSA 9.5, TRUS biopsy (false) negative
    2015: PSA's 12 & 20, LOTS of Cipro ... Mar'16: PSA 25, changed Urologist
    Jun'16: MRI fusion biopsy, tumor right base, 6/16 cores: 2ea 15-40-100% G8(4+4)
    Aug'16: DVRP,
    "broad cut" 11 LN-,-SM, 53g 25% involved, multifocal EPE, PNI, B/L SVI, pT3b

    Jan'17: started Lupron ADT, uPSA's ~.03
    May'17: AMS800 implanted, revised 6/17
    Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
    Jan'18-July 2019: PSA's <0.008, T~12
    Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritis
    "Everyone you meet is fighting a battle you cannot see"

    Mrs: Dec 2016: Dx stage 4 NHL/DLBCL,
    Primary Bone Lymphoma
    spinal RT boost+6X R-CHOP21+6X IT MTX via LP. Now in remission
    Read our story at CancerCoupleBlog

  4. #154
    Quote Originally Posted by RobLee View Post
    I just got a 0.000 and it has me wondering what the actual number is
    Where was that result, RobLee? On an actual lab report, in a patient portal, a summary report? Do you know which lab and test? Do you have past results that you know were from that same lab? I see a <0.008 in your signature; that looks like a real lab result

    I have a stong feeling that all the PSA results we see with all zeros are someone's reporting that the actual results (elsewhere) were below the test's LLD. In other words, 0.000 may be a layman's <0.008. By layman I'm not excluding health-care professionals; not everyone is familiar with uPSA results. So that would be another (informal) way of saying "essentially zero" for a given test.

    Djin
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3 -
    2013 TURP (90→30 g) path neg. then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%, 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day check)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015

  5. #155
    Quote Originally Posted by DjinTonic View Post
    Where was that result, RobLee? On an actual lab report, in a patient portal, a summary report? Do you know which lab and test? Do you have past results that you know were from that same lab? I see a <0.008 in your signature; that looks like a real lab result
    I asked the doc about it today and got a non-answer. From the portal it says they do their labs in house. Since I've been with this practice they have merged with about 20 other uro practices and now command much of the entire Florida gulf coast, so I suppose it is another revenue stream.

    I tried to make an argument that 0.000 is not a credible value due to the LLD and he said it's probably the number that the lab tech read off the machine (I even mentioned Beckman Coulter). So I can only assume that the limit is still .008 and that my PSA is still below that. My preceding post about 0.000 was jokingly meant to be in response to Gary's "0.00000 would be good".

    Overall it was a disappointing discussion with my Uro, and I found out at the end that I will not see him again for another 12 months. I guess that is the protocol, and I should take it as a good indication.

  6. #156
    Quote Originally Posted by RobLee View Post
    I asked the doc about it today and got a non-answer. From the portal it says they do their labs in house. Since I've been with this practice they have merged with about 20 other uro practices and now command much of the entire Florida gulf coast, so I suppose it is another revenue stream.

    I tried to make an argument that 0.000 is not a credible value due to the LLD and he said it's probably the number that the lab tech read off the machine (I even mentioned Beckman Coulter). So I can only assume that the limit is still .008 and that my PSA is still below that. My preceding post about 0.000 was jokingly meant to be in response to Gary's "0.00000 would be good".

    Overall it was a disappointing discussion with my Uro, and I found out at the end that I will not see him again for another 12 months. I guess that is the protocol, and I should take it as a good indication.
    Yes, most likely that is what happened: the analyzer showed it detected nothing with an all-zero readout and the nurse or tech just entered or transcribed that instead of the < sign followed by the LLD, which is probably still 0.008.

    Be happy they didn't wisecrack "You have nothing to complain about?"

    Djin

  7. #157
    Hi Rob! As you are likely well aware, I do not trust any "in office" uPSA results. This is from 1st hand experience. I would look into being monitored by either LabCorp or Quest moving forward. I have private insurance and my co-pay for each uPSA is about $13.

    Here is a "copy & paste" of my suggestions to Hawk yesterday:

    "See if you can get access to a Laboratory that:

    - has an Ultrasensitive PSA analyzer or sends blood sample to a larger Lab facility that does

    - calibrates analyzer daily in accordance with CLIA / Good Laboratory Practices (using: Standards, Blanks & Knowns)

    - runs at least 50 patient uPSA samples daily

    - reports results to 2 (or more) decimal places so you know what is going on incrementally. And you use The Same Lab and Same uPSA Methodology Each Time for correct monitoring.
    "

    Please be assured that I truly hope that your actual uPSA level is in fact 0.000 ! But I am confident that it remains <0.008 which remains fantastic!

    Bottom line is: you want good accurate results each time.

    MF
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Referred to URO MD
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = G7 (3+4) and 5 = Gleason 6
    Referred to URO Surgeon
    March '12: Robotic RP: Left: PM + EPE. MD waited in surgery for preliminary Path Report then excised substantial left adjacent tissue(s) down to negative margins and placed 2 Ti clips for SR guidance, if needed in future.
    Pathology: Gleason (3+4) pT3a pNO pMX pRO c tertiary pattern 5 / Prostate Size = 32 grams / Tumor = Bilateral: 20% / PNI: present
    3 month Post Op standard PSA = <0.1 ng/ml
    1st uPSA at 7 months Post Op = 0.018 ng/ml
    uPSA remains "stable" at 84 Months Post Op: Mean = 0.021 (20x uPSAs: Range 0.017 - 0.026) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  8. #158
    Thanks guys. At this point I'm not so concerned about obtaining consistent PSA reporting as long as it continues to be ultra low. I believe that as long as my testosterone is so very low, I probably will not have measurable PSA... though my Uro did remind me that I am at a high risk for recurrence. I'll go into this more in a separate thread.

    George, sorry to have hijacked your thread ... congrats on your low PSA. It's been a long road, for us all.

  9. #159
    best to u George...congrats on the low PSA. Great news!
    DOB:Feb 1958
    PSA: 9/15: 5.9
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. +9 of 12 cores. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: -CT scan/BS
    Clinical Staging: 10/28/15 T2c
    ( RALP) UC 12/29/15

    Final Pathology Report; Jan. 6 2016

    -15 lymph nodes
    G9 ( 4+5)
    +EPE
    +LVI
    +Right SV -Left SV and vasa deferentia,
    PI present
    PM
    pT3bNO
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex 4/1/16-8/5/16
    Lupron 4/15/16-5/15/18
    SRT 6/14/16...8/5/16 38Tx
    uPSA 8/10/16---2/14/19 <0.05
    Feb. 2017 Loyola Chicago
    11/15/2018 AUS 800 Implanted
    12/18/18...T Levels...Free T 42.8...Total T...262

 

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