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Thread: New member, new worries.

  1. #11
    Quote Originally Posted by Emaz View Post
    Appreciate the reply. I agree that there’s been enough trauma down there that it could be a factor. I guess finding a good urologist is key.

    I’m just a bit skeptical that too many act on rote - “High PSA? Biopsy time. Sorry, no we don’t offer the new one, just the old school one.”

    Is this a legit concern? Did most of you have to dig, research and work your insurance company to find a good one? I feel like this is a critical first step. Get stuck with an old school one right from the start and you’re just put on the prostate conveyer belt.
    I live in a major city and have good insurance. The first urologist I saw was recommended by the PCP. When I sought a 2nd opinion, I was referred to my current doctor by a social worker at UPMC when visiting an in-person support group here in Pittsburgh.

    There are a lot of old people in Arizona, and older men are the bread and butter of the Urology profession. I'm sure that plenty of guys in the urology field have gone to Arizona.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3

  2. #12
    Newbie New User
    Join Date
    Mar 2019
    Posts
    9
    So my PCP wants me to see a urologist, no surprise there. Heís also wanting to retest with free PSA in 6 weeks. My feeling is that thereís no hurry, it would stress me out even more. So my plan is to research urologists and find a good one, because IF thereís an issue then it has to be someone that can see me through the whole process.

    Iíve just been super stressed about a number of things and feel I should take a calm, measured approach to this. Does that make sense? Or should I be following up more aggressively?

  3. #13
    Senior User
    Join Date
    May 2017
    Posts
    107
    While you are waiting, go to youtube and watch some videos from the Prostate Cancer Research Institute with these titles:

    Prostate Cancer 101: So Your PSA Is High, What Now?

    All About Imaging

    I didn't know if it was OK to post links so I didn't. The titles should get you there.
    DOB 1961
    2010-05 2.42
    2015-07 7.0
    2015-08 5.4
    2016-02 6.2
    2016-09 7.86
    2017-02 7.2
    2017-05 5.65
    2017-06 biopsy 7 of 13 cores G6
    2017-10 7.11
    2018-04 7.47
    2018-11 11.80

    2019-01 Da Vinci RALP
    Pathology report:
    Final stage pT2C
    Histologic type: Acinar adenocarcinoma with focal mucinous features
    Grade: 3+4=7 35% pattern 4
    23% of prostate involved
    EPE: None
    BNI: None
    SVI: None
    PNI: Present
    LVI: Present
    Margins focally positive [1-3 mm] at four locations
    Cribriform pattern noted

    2019-02 uPSA 0.10 Abbott Architect Total PSA
    2019-03 uPSA 0.133 Roche ECLIA
    2019-04 uPSA 0.116 Roche ECLIA

  4. #14
    Emaz: I'm a bit baffled by: "So my PCP wants me to see a urologist, no surprise there. He’s also wanting to retest with free PSA in 6 weeks." If your PCP wants you to see a Urologist then why doesn't this PCP let the Urologist determine what test(s) you need?!?! Also, PCPs lack the tactile skills of a good URO to determine a (+) from a (-) DRE.

    Example: Let's say it will take 4 weeks for the 1st opening to see a busy URO MD as a new patient . If you wait to get another PSA in 6 weeks and the PSA is further elevated, it will take an additional 4 weeks to see the URO MD.

    Why not schedule the URO appointment now? Get on the phone tomorrow. Let a good URO MD provide guidance, determine if PCA needs to be ruled out and monitor your BPH and elevated PSA moving forward.

    Keep it simple.

    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 = Gleason 7 (3+4) and 5 = Gleason 6
    Referred to URO Surgeon
    March '12: Robotic RP: Left Positive Margins + EPEs. 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 / Prostate Size = 32 grams; Tumor = Bilateral; 20% / Perineural invasion: 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

  5. #15
    Newbie New User
    Join Date
    Mar 2019
    Posts
    9
    My gut feeling is that it was high from other issues. So I asked for a retest. PCP wants to send me straight to a Uro.

    I also wanted time to research Uros.

    If I find one and get in prior to that lab date, I would cancel that retest.

    Honestly - and I hesitate to say this because you all have been through far more than I - but with recent events in my life Iím super stressed and was looking for a brief emotional break before I head down this path. Iíve had crazy anxiety lately. I was trying to balance being reasonable about proceeding while taking a quick breath before I jump in here. I hope to find a great Uro but I just have an impression (or fear) that too many are rote and will rush me to a biopsy.

  6. #16
    Senior User
    Join Date
    May 2017
    Posts
    107
    If you have the resources you can track your own PSA as often as you like without a doctor's order and without a dr appointment. I just ordered through walkinlab dot com and I am going to get an ultra sensitive PSA test every month ($109). The lab is within walking distance from my house. The regular serum PSA test is $35 and the %free:total PSA test is $48. But be aware, you cannot interchange these lab results with the lab results from your doctor's office unless they are performed at the same lab. It may very well be that your doc uses LabCorp so you may be OK. You cannot get these PSA tests from LabCorp yourself if you live in one of these states: MA, MD, NY, NJ and RI.

    I am in no way associated with the web site walkinlab dot com or LabCorp. I'm just taking matters into my own hands and not waiting for the docs. Next thing you know you'll be able to order HT drugs online.
    DOB 1961
    2010-05 2.42
    2015-07 7.0
    2015-08 5.4
    2016-02 6.2
    2016-09 7.86
    2017-02 7.2
    2017-05 5.65
    2017-06 biopsy 7 of 13 cores G6
    2017-10 7.11
    2018-04 7.47
    2018-11 11.80

    2019-01 Da Vinci RALP
    Pathology report:
    Final stage pT2C
    Histologic type: Acinar adenocarcinoma with focal mucinous features
    Grade: 3+4=7 35% pattern 4
    23% of prostate involved
    EPE: None
    BNI: None
    SVI: None
    PNI: Present
    LVI: Present
    Margins focally positive [1-3 mm] at four locations
    Cribriform pattern noted

    2019-02 uPSA 0.10 Abbott Architect Total PSA
    2019-03 uPSA 0.133 Roche ECLIA
    2019-04 uPSA 0.116 Roche ECLIA

  7. #17
    Top User garyi's Avatar
    Join Date
    Apr 2017
    Posts
    1,107
    Emaz...your getting excellent advise above.

    Unless your insurance demands using your PCP, you need to find an experiencedUro. Don't waste time looking for a 'great one'; even it one existed, you don't need him. The' good' Uro will get you a PHI blood test, which is an expanded PSA, offering more data to work with. A 4K test could also be valuable.

    If you're close Mayo in Phoenix, that would be a fine place to start. Do some research, meet with a Uro, get better testing, and for heaven's sake, please relax! you most probably don't have prostate cancer, but you can be sure that stress you're giving yourself will not help matters. A biopsy, if it ever comes to that is no big deal.

    Now get on the phone, and make an appointment. 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
    pT2c pNO pMn/a Grade 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor remains in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19
    We'll see....what is not known dwarfs what is thought to be fact

  8. #18
    Newbie New User
    Join Date
    Mar 2019
    Posts
    9
    I could drive to Mayo, assuming I can get in and they take my insurance.

    This is why I need to research - if I need treatment am I going to drive to Mayo for every procedure? Certainly seems worth it but thatís going to require some planning.

    Relaxed, I am not, unfortunately. This as well as other things. But Iím certainly appreciative of the guidance. Thanks guys.

  9. #19
    Newbie New User
    Join Date
    Mar 2019
    Posts
    9
    It is indeed Labcorp. Now I just have to find a Uro. Thatís my next step I guess. I just wanted a break from thinking about this before I jump in. Itís just been a stream of crap for me since October, so I was wanting to catch my breath.

  10. #20
    My history is not too unlike yours. My PSA has been climbing about 10% a year for a decade, somewhat faster than yours I think. I now even have a lesion/tumor identified by MRI, but two biopsies have only shown abnormal gland cells. So, there could be unfound PCa but I'm going with just BPH causing my prostate to grow about 10% a year for now.

    I agree with all the other advice, and definitely find a uro that will do a 4K/PHI/etc and/or MRI before doing biopsy, or get another opinion! It is wise to be concerned about infection, sepsis is a legitimate risk.
    Last edited by ProstateBiopsyBlog; 03-21-2019 at 01:17 AM.
    ProstateBiopsyBlog

 

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