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Thread: Anxiously waiting

  1. #11
    Good luck mostth!

    "The Club Zero" Membership Committee will be calling a meeting soon!

    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 91 Months Post Op: Mean = 0.022 (22x uPSAs: Range 0.017 - 0.032) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  2. #12
    Senior User mostth's Avatar
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    Feb 2019
    Posts
    115
    Quote Originally Posted by Michael F View Post
    Good luck mostth!

    "The Club Zero" Membership Committee will be calling a meeting soon!

    MF
    Hoping to soon be getting the membership in the club
    DOB 9/6/59
    1/21/19 PSA 7.5.
    Bx 2/8/19
    G7 (4+3), 60% pattern 4
    Reffered to Mayo Clinic Rochester, MN
    RALP 4/3/19 Igor Frank
    Adenocarcinoma G8 (4+4)
    Mass (3 x 1.5 x 1.2 cm)
    Tumor involves both seminal vesicles.
    Extraprostatic soft tissues, SM, EPE, BNI, LNI (24): neg., SVI+
    pT3b pN0 Mx
    7/19 3mo PSA 0.74
    7/24 retest PSA 0.78
    8/14 3 mo. Lupron inj.
    9/10 Start radiation 38 doses

  3. #13
    Senior User mostth's Avatar
    Join Date
    Feb 2019
    Posts
    115
    Looks like a membership is not in the cards. Checked my patient portal and the results are .74ng/ml. I guess my uneducated guess is this is not good, but can't get ahold of anyone today to discuss this.
    DOB 9/6/59
    1/21/19 PSA 7.5.
    Bx 2/8/19
    G7 (4+3), 60% pattern 4
    Reffered to Mayo Clinic Rochester, MN
    RALP 4/3/19 Igor Frank
    Adenocarcinoma G8 (4+4)
    Mass (3 x 1.5 x 1.2 cm)
    Tumor involves both seminal vesicles.
    Extraprostatic soft tissues, SM, EPE, BNI, LNI (24): neg., SVI+
    pT3b pN0 Mx
    7/19 3mo PSA 0.74
    7/24 retest PSA 0.78
    8/14 3 mo. Lupron inj.
    9/10 Start radiation 38 doses

  4. #14
    Senior User
    Join Date
    Nov 2016
    Posts
    302
    Well, damnit we already had the card printed. We'll hold it right here at the door for when you're ready.
    Age at Dx 57
    PCa History: Father, Uncles, Grandfathers

    Oct 2016 Biopsy 12 core: Adenocarcinoma, Gleason 4+3=7 Grade Group 3) w/PNI
    Left Lateral Base: Suspicious
    Left Lateral Mid: PIN
    Left Base: 4+3=7 (60% pattern 4) Core involvement 30% (5mm)
    Right Base: Suspicious
    Right Apex: 3+3=6 Core involvement 60% (7mm) discontinous
    Right Lateral Mid: 3+3=6 Core involvement 10% (1mm)
    Right Lateral Apex: 3+3=6 Core involvement 10% (1mm)

    Jan 2017 DaVinci - Dr. Grant Taylor - Pathology = pT2c or pT3a; Gleason 4+3=7; Weight: 42g

    Jun 2019 AMS800 installed - Dr. David Rapp - Jul 2019 activated

    ED: Light to moderate

    (Note: All PSA tests prior to Jun19 were done by LabCore)
    PSA_TESTS

    Apr 2016=5.1
    Jul 2016=4.7
    Aug 2016=5.13

    ----Surgery----

    Mar17<0.01
    Jul17<0.01
    Oct17<0.01
    Jan18<0.01
    May18<0.01
    Nov18<0.01
    Jan19<0.01
    Jun19<0.02

  5. #15
    Your doc will probably want a repeat test, perhaps in 30 days. If a similar number is confirmed, it would be persistent PSA. Since all 24 removed nodes were negative, my hunch is that the SVI+ makes it likely that some remaining tissue, normal and/or cancerous was left behind. Perhaps you'll be consulting with an RO to discuss adjuvant radiation to the prostate bed when you're fully healed. That should put you on track to say ciao to your cancer. You could start reading up on the different RT modalities available.

    Another question for discussion in whether a genomics test like Decipher is appropriate at this point to assess the risk of metastasis of your particular cancer. It could prove helpful, if not immediately, then at some point in the future.


    Chin up!

    Djin
    Last edited by DjinTonic; 07-11-2019 at 11:21 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (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
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  6. #16
    Mostth don't panic or stress.. Retest. Hopefully it will change. If radiation is needed. It'll knock it out and as Djin said. Say ciao to this

  7. #17
    Quote Originally Posted by mostth View Post
    It didn't I guess, but that is where I had the surgery. My uro at Mayo recommended that I come back there for the test but I was not driving 6.5 hours one way to get a blood test. My local uro recccomended that I get the mayo mail in test to keep them in the loop.
    That is nuts. Mayo does not run 2 or 3 decimal tests. All that was needed was a local test with the results faxed to you Doc at Mayo.
    YOB 1957

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative.

    3/6/19. Pathology - Grade Group 4 with Intraductal Carcinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 03 (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)
    9/10/2019. <.02. (198 days)

    3 Part Modality Treatment

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic,

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

  8. #18
    Quote Originally Posted by Duck2 View Post
    That is nuts. Mayo does not run 2 or 3 decimal tests. All that was needed was a local test with the results faxed to you Doc at Mayo.
    Agreed. Any lab does the job, especially if PSA doesn't drop below 0.1. Mostth, I'd retest at a different lab asap if I were you. Best of luck!
    --------------
    DOB 1965
    PM me for PSA graphing service & detailed story
    PSA 6.8 11/17
    PSA 7.5 04/18
    MRI 05/18 inconclusive, PI-RADS3?
    PSA 11.8 01/19
    PSA 10.1 02/19
    12 core random biopsy 02/19 (4+3)=7 suspicion of vascular invasion, grade 4 cribriform pattern, no PTEN loss
    Bone scan negative 04/19
    PSA 13.3 04/01/19 pre-surgery significant urinal symptoms and some ED
    RRP 04/04/19
    pT2c pN0 (0 of 7 lymph nodes positive) pL0 pV0 R0(local) Pn1
    Perineural growth predominantly on right hand side, tumour diameter 15mm 90% G4 10% G3
    Prostatic parenchyma with glandular hyperplasia and chronic granular, partly purulent inflammation.
    PSA 0.14 04/30/19
    PSA 0.02 05/13/19
    PSA 0.008 06/04/19

  9. #19
    Senior User
    Join Date
    Feb 2017
    Posts
    174
    Hang in there. All of us have been and continue to experience the “persistent PSA anxiety experience.” I head to Hopkins Monday for my quarterly PSA and meetup with my doctor. I have completed the two year clinical trial. I asked him at my last appointment how long I’d be monitored since I successfully graduated. (That’s probably the wrong term....)

    His response: “only for the rest of your life.”

    Do any of you long term guys ever get over PSA anxiety? If so, please share your secret!

  10. #20
    Top User garyi's Avatar
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    Posts
    1,379
    Quote Originally Posted by BAB View Post
    ...... “only for the rest of your life.”

    Do any of you long term guys ever get over PSA anxiety? If so, please share your secret!
    ALL of us PCa guys should be vigilant "for the rest of our lives". Most don't "continue to experience PSA anxiety".

    I've had a TURP, surgery, diagnosed persistent PSA, SRT and ADT. But no PSA anxiety, since it's a useless emotion. We can't control everything, worry just causes inflammation which is bad for cancer, and so on.

    So continue doing your kegals, (kegels?) and practice mindfulness to overcome anxiety. Good luck!
    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, .081 9/19
    We'll see....what is not known dwarfs what is thought to be fact

 

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