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Thread: Anxiously waiting

  1. #21
    I wonder if the anxiety results from a "shoot the messenger" attitude, as if the test were somehow the cause of the high PSA, as strange as that may sound. I have the same attitude toward my PSA tests (before and after RP) as I did to my many biopsies: I want to know what's going on inside me, so in a sense the test can't come early enough. At least for now, going a long time without a PSA test would worry me more: what's happening? I want to know.

    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

  2. #22
    Top User garyi's Avatar
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    Very interesting theory, Djin, that I believe is valid. Like you, I want to know what's going on, not that I can do much about it, ahead of time.....so why obsess about it.
    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

  3. #23
    Moderator Top User HighlanderCFH's Avatar
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    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.

    I've been told by the Mayo uro dept that, if I cannot make it there for my annual physical (including PSA test), they would send me a kit to have the blood drawn locally and then sent to their lab for analysis. Good thing to know.
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  4. #24
    Experienced User
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    Quote Originally Posted by HighlanderCFH View Post
    I've been told by the Mayo uro dept that, if I cannot make it there for my annual physical (including PSA test), they would send me a kit to have the blood drawn locally and then sent to their lab for analysis. Good thing to know.
    Chuck, that is what I did, only I was hoping for a better result. Hopefully someone will respond from up there to talk about what they would like for me to do next.
    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.

  5. #25
    Experienced User
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    Quote Originally Posted by DjinTonic View Post
    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
    What is the definition of fully healed?
    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.

  6. #26
    Quote Originally Posted by mostth View Post
    What is the definition of fully healed?
    I don't think there is a real definition, but rather just allowing enough time to pass to allow internal healing before radiation -- other Forum Brothers who have had ART can fill us in -- I think it's a question of a few months.

    Djin

  7. #27
    Quote Originally Posted by mostth View Post
    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.
    Hi mostth! By 3 months post RP, ones PSA should be Zero. Before making any assumptions, let's rule out error. A few questions & suggestions:

    - Where was the blood sample drawn?

    - Did you ask the phlebotomist to show you the paperwork prior to blood draw? Likely not - of course. BUT everyone should do this each and every time. On one occasion, I discovered a major issue prior to the blood draw.

    - Do you recall the color of the stopper on the collection vial?

    - Was the sample refrigerated and kept cold during transportation to The Mayo? Probably you have no way of knowing this.

    - Did The Mayo use serum or plasma? Again, you would have no way of knowing (except if you remember the color of the stopper on the collection vial)

    - Ask your MD if you should repeat the PSA either now or in the next 4-8 weeks.

    In your case, there are a lot of potential points of error in the chain of command.

    If I were in your situation, I would have my blood drawn locally and analyzed by either LabCorp or Quest. Not sure of your insurance coverage but my LabCorp uPSA co-pay is approx $13. You can call your insurer and get the info on where to have blood drawn for PSA and which Lab to use for analysis

    Hoping that Error is the culprit.

    Addendum: Just noticed your Post # 24. The Mayo kit obviously should minimize sources of error. Make a phone call to the Mayo Lab or send a message to the Lab Director through the portal and ask: "Can you confirm that this result (0.74 ng/ml) is correct/accurate?"

    MF
    Last edited by Michael F; 07-12-2019 at 01:33 PM.
    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. #28
    Top User
    Join Date
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    Posts
    1,645
    Quote Originally Posted by mostth View Post
    What is the definition of fully healed?
    They are two aspects to "healing". One is the obvious of tissue and muscle. The surgeon will let you know when you can resume normal activity.

    The other is return from the side effects of incontinence and ED. These can take longer. Your age has an impact on both, younger equals faster recovery. Nerve tissue takes longer to recover than other tissue. The average on ED is a year, but it can continue to improve long after that. Continence requires kegel exercises and sometimes diet restrictions of caffeine, alcohol, and carbonated beverages which irritate the bladder and recovery is typically sooner than ED and sometimes immediate.

    Skill of the surgeon and the extent of cancer removal impacts continence and ED.

    Radiation stops the healing from these side effects. Therefore, if radiation is required the preference is to allow time for all functions to return first. If circumstances call for radiation treatment sooner than later following surgery timing is critical and partial or full recovery of continence and erectile function may be sacrificed for life saving treatment.
    Last edited by Another; 07-12-2019 at 01:43 PM.

  9. #29
    IMO past the age of 50 or 55 healing is an elusive goal. Recitfy one ailment and it won't be long until the next shows up. All depends on what we make if it.

  10. #30
    Hi Mosth. If your PSA level is confirmed, your doc may want to discuss adjuvant therapy, give your SVI+, G8, and persistent PSA.

    IMO, the more your prepare (with both background knowledge and your own questions to ask), the more you will get out of each visit you have with your doc and specialists, the more you will feel you are on top of things, and the less overwhelmed. Even if you and your team conclude adjuvant treatment is, in fact, the best bet, the timing/healing question will be a topic of discussion. Of course you can decide to put this off for another day, or you can choose some of the below for light summer beach reading

    Djin

    The Prognostic Impact of Seminal Vesicle Involvement Found at Prostatectomy and the Effects of Adjuvant Radiation: Data From Southwest Oncology Group [2008]

    Prognostic significance and biopsy characteristics of prostate cancer with seminal vesicle invasion on radical prostatectomy: a nationwide population-based study [2017]

    Impact of decipher test on adjuvant and salvage treatments received following radical prostatectomy [2018]

    Optimal Timing of Adjuvant and Salvage Radiation Following Radical Prostatectomy [2017]

    Adjuvant Versus Salvage Radiotherapy for Patients With Adverse Pathological Findings Following Radical Prostatectomy: A Decision Analysis [2017]

    Comparison Between Adjuvant and Early-Salvage Postprostatectomy Radiotherapy for Prostate Cancer With Adverse Pathological Features [2018]

    Adjuvant Radiation Therapy for High-Risk Post-prostatectomy Patients [2018]

    Postoperative adjuvant and very early salvage radiotherapy after prostatectomy in high-risk prostate cancer patients can improve specific and overall survival [2018]

    Adjuvant Therapy in High-Risk Prostate Cancer [2018]

    WHICH PATIENTS SHOULD BE CANDIDATES FOR ADJUVANT RADIOTHERAPY FOLLOWING RADICAL PROSTATECTOMY? [2019]

    Trends and Predictors of Adjuvant Therapy for Adverse Features Following Radical Prostatectomy: An Analysis from CaPSURE [2019]

    Ten-year outcomes of high-dose intensity-modulated radiation therapy for nonmetastatic prostate cancer with unfavorable risk: early initiation of salvage therapy may replace long-term adjuvant androgen deprivation [2019]

 

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