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    Old 04-04-2022, 06:19 AM   #16
    gabow
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    Re: New User - Active Surveillance Changes

    For my upcoming biopsy, I want to request a genomic test (is decipher the best one?) and possibly a 2nd opinion on the biopsy analysis.

    Do I need to have that consultation/request prior to my biopsy? Is there anything different they do when collecting the biopsy to prepare for these things?

    Or should I just wait until after the biopsy, see what the results say, and go from there?
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    Old 04-04-2022, 07:13 AM   #17
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    Re: New User - Active Surveillance Changes

    The genomics testing is done on the biopsy cores. I had an OncotypeDX run on biopsy cores several months after that biopsy. No pre-planning was involved.

    You may want find out what a genomics test could cost you. I have read of men paying thousands out of pocket for them. Mine was done as part of the FDA approval for that test.

     
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    Old 04-04-2022, 08:19 AM   #18
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    Re: New User - Active Surveillance Changes

    Hi Gabow,

    I'll join those who have suggested the elevation in you PSA is probably due in part to infection/inflammation. But diligence and learning all you can are wise.

    Since you are being treated in Ann Arbor, I'm wondering if you have encountered Dr. Mark Moyad, MD, who is well known there and nationally as a great communicator/educator about prostate cancer. For years he has been the moderator of the annual September and "mid-year" conferences sponsored by the Prostate Cancer Research Institute. He always is able to bring a lot of humor to discussions of our very unfunny disease. He is also a huge U. of M sports fan.

    Jim

    Last edited by IADT3since2000; 04-04-2022 at 08:20 AM. Reason: Added sentence right after posting.

     
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    Old 04-04-2022, 09:05 AM   #19
    gabow
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    Re: New User - Active Surveillance Changes

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi Gabow,

    I'll join those who have suggested the elevation in you PSA is probably due in part to infection/inflammation. But diligence and learning all you can are wise.

    Since you are being treated in Ann Arbor, I'm wondering if you have encountered Dr. Mark Moyad, MD, who is well known there and nationally as a great communicator/educator about prostate cancer. For years he has been the moderator of the annual September and "mid-year" conferences sponsored by the Prostate Cancer Research Institute. He always is able to bring a lot of humor to discussions of our very unfunny disease. He is also a huge U. of M sports fan.

    Jim
    Thanks for that Jim, I have not yet run across Dr. Moyad. In searching the online UofM urology dept., I see his name and a bio and he is listed as the "Jenkins/Pokempner Director of Preventive & Alternative Medicine." It doesn't appear that he is a Dr. that sees patients, or at least he's not available from my portal as someone I can book an appointment with.

    I originally (2018) had a review and meeting with Dr. Ganesh Palapattu (Uro) and Dr. Corey Speers (rad onc). At that time, both of them recommended AS so they referred me to Dr. Arvin George who was leading their AS program. Dr. George has done all of my MRIs and biopsies to date.

    My upcoming biopsy is going to be done by Dr. Wei (Uro) who specializes in biopsies and prostate cancer detection.

    It's a big department so most of my communications and meetings are with a PA named Dianne Collins. She can direct me to any Dr. in their system.

    I think they have done a good job to date. It's a bit hard to get good communications some times, but that's to be expected in such a large place. And I think much of that has to do with the fact everything I have had to date is pretty low level/risk. I would prefer to keep it that way I feel confident that if my situation rises to a level to need treatment that they will respond accordingly.

    I just want to make sure I do everything I can to make sure they understand that I am willing to pay some out of pocket expenditures to get multiple eyes on the situation. Not that the other "eyes" are necessarily better, just different and more info.
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    2019,PSA8.2,MRI Pirads 2,Trans/Median nodules,vol 36mL,Glea6,2 cores
    2020 PSA ~8,MRI Pirads 2,Trans/Median Nodules, Vol 36mL
    2022 PSA 12.8,15,MRI Pirads 2,Trans/Median Nodules,Peri zone abnormalities,Geographic inflammation right peri zone, Vol 36mL

     
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    Old 04-04-2022, 12:11 PM   #20
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    Re: New User - Active Surveillance Changes

    No you don't have to set anything up in advance to have a genomics test done on your biopsy tissue after the biopsy. However, I suggest waiting to see your biopsy results.

    Depending on those results, you may first want to get a 2nd opinion on the Gleason scoring from Dr. J. Epstein at Johns Hopkins, a world-class expert on prostate pathology who runs a "Second Opinion Service". Here is his website:

    https://pathology.jhu.***/patient-care/second-opinions

    although if you want the review, you just have to ask your doc--he or she can usually arrange to have your slides sent to Dr. Epstein directly. The review is often covered by insurance; if not, it is worth the relatively small fee.

    *IF* you are undecided about being treated after you get your biopsy results and, if appropriate, the 2nd opinion, you may want a genomics test at that point to help in the decision making.

    HOWEVER, IF there is no doubt you need and want treatment, and IF you have decided on surgery as your treatment, I suggest waiting to have some tissue from you prostate sent for a Decipher test. Genomic tests done on biopsy tissue (e.g. Decipher) agree with that done on the same patient's post-RP tissue about 70% of the time (because the biopsy missed more serious cancer that was seen when the whole prostate was examined), so the post-RP genomic test is more reliable. If a biopsy genomic test comes back hi-risk for met potential, I think you can trust it. But if the result is low-risk, there may have been no tissue from your worst lesion to test, because no core hit it. That is why many men have their Gleason score upgraded after surgery.

    Djin
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    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
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    Old 04-04-2022, 01:06 PM   #21
    gabow
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    Re: New User - Active Surveillance Changes

    Quote:
    Originally Posted by DjinTonic View Post
    No you don't have to set anything up in advance to have a genomics test done on your biopsy tissue after the biopsy. However, I suggest waiting to see your biopsy results.

    Depending on those results, you may first want to get a 2nd opinion on the Gleason scoring from Dr. J. Epstein at Johns Hopkins, a world-class expert on prostate pathology who runs a "Second Opinion Service". Here is his website:

    https://pathology.jhu.***/patient-care/second-opinions

    although if you want the review, you just have to ask your doc--he or she can usually arrange to have your slides sent to Dr. Epstein directly. The review is often covered by insurance; if not, it is worth the relatively small fee.

    *IF* you are undecided about being treated after you get your biopsy results, you may want a genomics test at that point to help in the decision making.

    HOWEVER, IF there is no doubt you need and want treatment, and IF you have decided on surgery as your treatment, I suggest waiting to have some tissue from you prostate sent for a Decipher test. Genomic tests done on biopsy tissue (e.g. Decipher) agree with that done on the same patient's post-RP tissue only about 70$ of the time (because the biopsy missed more serious cancer that was seen when the whole prostate was examined).

    Djin

    Good advice, and answered my question, a two fer!

    Thanks.
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    2019,PSA8.2,MRI Pirads 2,Trans/Median nodules,vol 36mL,Glea6,2 cores
    2020 PSA ~8,MRI Pirads 2,Trans/Median Nodules, Vol 36mL
    2022 PSA 12.8,15,MRI Pirads 2,Trans/Median Nodules,Peri zone abnormalities,Geographic inflammation right peri zone, Vol 36mL

     
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    Old 04-04-2022, 01:29 PM   #22
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    Re: New User - Active Surveillance Changes

    Quote:
    Originally Posted by IADT3since2000 View Post
    Untrue Statement About Finastetide
    I am not yet convinced. I have seen more recent studies continue to warn it is an unsettled concern. They acknowledge it suppresses G6 which is already considered benign and at it's worse, precancerous, but the "expert" post study opinion, it does not stimulate more aggressive cancers, is still a rationale and uncertain.

    In the study you quote, you conveniently fail to note the difference in mortality you are so excited about is statistically insignificant. Even so, I consider mortality rates to be a crude comparison metric when you consider the extended length of time and pain it takes to die from prostate cancer.

    This caution is from the Mayo Clinic's drug and supplement precautions (2022), This medicine will not prevent prostate cancer but may increase your risk of developing high-grade prostate cancer. Tell your doctor if you have concerns about this risk.

    The FDA black box warning issued for this drug risk is still in place.

     
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    Old 04-04-2022, 05:20 PM   #23
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    Re: New User - Active Surveillance Changes

    Quote:
    Originally Posted by ASAdvocate View Post
    As far as “individualized” AS protocols for patients, I can tell you that is not the case at Johns Hopkins, where we have the strictest and most successful AS program on the planet.

    Everybody has the same testing schedule, and the same thresholds for triggering more immediate assessments.

    Since JH relies heavily on PSA Density as a trigger, and you have a normal size prostate with a high PSA, that would signal immediate concern. I would expect the transperineal biopsy as necessary, with possibly a Decipher test and possibly PSMA PET imaging as additional steps.
    I agree that good programs have reasonably fixed protocols on when you have a PSA test, when you have an MRI and when you have a biopsy, etc. But as for whether AS continues to be safe, we know that there are obvious cases where it is safe, obvious cases where it no longer is safe, as well as a grey zone where the guidelines leave some flexibility. I think most of the good UROs will, in those cases, look at all the information available on a patient and use their judgement in making a recommendation, and that recommendation may be one of the most important things they do for you. That's why, and I don't think anyone here disagrees, is it critical for someone on AS to get a top flight URO who lives and breathes prostate cancer.

     
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    Old 04-04-2022, 07:47 PM   #24
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    Re: New User - Active Surveillance Changes

    Good points, jorlo

    Actually, Johns Hopkins' AS program is run by a nurse practitioner. That may seem surprising at first, but it's what she does full time. She makes treat/no treat and additional test decisions based on her knowledge. Of course, she has Drs. Pavlovich, Partin, Walsh, and others to advise her.
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    Old 04-05-2022, 03:29 AM   #25
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    Re: New User - Active Surveillance Changes

    I'm currently watching a good friend succumb to the temptation of denial and delay to manipulate AS protocols.

    If only he used the same rigor with AS he is now using with his diet and exercise to "reduce" his cancer risk.

     
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    Old 04-05-2022, 11:11 AM   #26
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    Re: New User - Active Surveillance Changes

    Quote:
    Originally Posted by ASAdvocate View Post
    Good points, jorlo

    Actually, Johns Hopkins' AS program is run by a nurse practitioner. That may seem surprising at first, but it's what she does full time. She makes treat/no treat and additional test decisions based on her knowledge. Of course, she has Drs. Pavlovich, Partin, Walsh, and others to advise her.
    I don't think it's surprising. In my program here in the suburbs of Chicago there is a NP who, if not in charge, is heavily involved in the program. My URO recently said next PSA/PHI in x months, and she looked at it, and without flinching, said he was wrong and that the test needed to be in Y months. And she was right.

    I think a great AS program is well served not only by expert UROs, but by a NP for whom this is his/her sole focus. I'm someone who migrated from a very good URO, but who had a very busy general practice, to one who is an expert on prostate cancer, and it was a very beneficial move.

     
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    Old 05-06-2022, 05:28 AM   #27
    gabow
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    Re: New User - Active Surveillance Changes

    Update.

    I had my biopsy a few days ago, it'll be next week before I have the results. But I wanted to post here a few things that happened that are interesting, at least for what's going on at UofM.

    First, during the initial prep and questions, I was asked about signing a consent for testing genomic markers in a urine test. Of course I agreed and then was asked to give a urine sample specifically for this and told that it was all part of a research program to identify urine markers. That the urine testing would be compared against the biopsy findings. So this is similar to another thread recently where there was some indication that there is improvement going on in this area. I'm not sure if or what information I'll be given from this, but it does show that UofM is participating in this important research.

    I was also asked if I would consent (and of course I did) to allowing video recording of the procedure (no faces or identifying info) for training purposes. And if it was ok to have a trainee in the session. This was a transperineal biopsy using "LeapMed." The implication was that this was a relatively new machine and procedure and they were working to train everyone in the system. I was pretty sure if they were video recording, they would be extra careful to do everything correctly

    We always hope that our providers are staying current and on top of the latest advancements, so all this made me feel like they are indeed doing that. I'll follow up next week with the results.
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    2020 PSA ~8,MRI Pirads 2,Trans/Median Nodules, Vol 36mL
    2022 PSA 12.8,15,MRI Pirads 2,Trans/Median Nodules,Peri zone abnormalities,Geographic inflammation right peri zone, Vol 36mL

     
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    Old 05-06-2022, 06:29 AM   #28
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    Re: New User - Active Surveillance Changes

    Thanks for the mention of the LeapMed device. It appears very similar to the Precision Point TPUS system, which was used in my last two biopsies. Always great to see more options and improvements in the diagnostic tools available,

    Best wishes on your biopsy pathology report.
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    Old 05-06-2022, 07:15 AM   #29
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    Re: New User - Active Surveillance Changes

    My appointment for the results is next week, but they posted the actual pathology results to my portal this morning.

    Great news! Looks to me like I'm still Gleason 6! Here is the full report, they do this "template" thing which makes it a bit difficult to read.

    ----------
    Diagnosis:
    B, E. Prostate, see specified sites below, core biopsies: Prostatic adenocarcinoma. See template.

    F. Prostate, right posterior base, core biopsy: Atypical small acinar proliferation (ASAP).

    A, C-D, G-M. Prostate, see specified sites below, core biopsies: Benign prostatic tissue.

    Template:
    Prostate Biopsy
    !--------------------------------------------------------------------------!
    ! ! ! !Carcinom!Volume !Gleaso!Gleason! ! !PNI !
    ! ! ! !a ! !n 1 !2 ! ! ! !
    ! ! ! ! ! ! ! ! ! ! !
    !Site !Slide!Pos !Total !Greates!Patter!Pattern!Gleaso!Grade!(Y/N) !
    !
    !Labe !Cores/ !Vol (%) !t !n/% !/% !nScore!Grou ! !
    ! !l !Total ! !involv ! ! ! !p# ! !
    ! ! !Cores ! !ind ! ! ! ! ! !
    ! ! ! ! !core ! ! ! ! ! !
    ! ! ! ! !(%) ! ! ! ! ! !
    ! ! ! ! ! ! ! ! ! ! !
    !R !B !1/1 !20 !20 !3/50 !3/50 !6 !1 !N !
    !post ! ! ! ! ! ! ! ! ! !
    !apex ! ! ! ! ! ! ! ! ! !
    ! ! ! ! ! ! ! ! ! ! !
    !R !E !1/1 !20 !20 !3/50 !3/50 !6 !1 !N !
    !para ! ! ! ! ! ! ! ! ! !
    !base ! ! ! ! ! ! ! ! !
    !
    !--------------------------------------------------------------------------!


    History:
    T1c GG1 CaP diagnosed on 05/04/2017. PSA of 15.1 and low risk MRI, without family history of prostate cancer. Here for third prostate biopsy. Operative procedure: Prostate biopsy.


    Gross Description:
    All specimens inked green.
    A. "Right paramedian apex" Received in formalin is one core measuring 0.8 cm. (ns)
    B. "Right posterior apex" Received in formalin is one core measuring 1.4 cm. (ns)
    C. "Right anterior TZ" Received in formalin is one core measuring 0.8 cm. (ns)
    D. "Right lateral" Received in formalin is one core measuring 1.3 cm. (ns)
    E. "Right paramedian base" Received in formalin is one core measuring 1.1 cm. (ns)
    F. "Right posterior base" Received in formalin is one core measuring 1.4 cm. (ns)
    G. "Midline apex" Received in formalin is one core measuring 0.9 cm. (ns)
    H. "Left paramedian apex" Received in formalin is one core measuring 0.8 cm. (ns)
    I. "Left posterior apex" Received in formalin are two cores ranging in size from 0.3 to 0.8 cm. (ns)
    J. "Left anterior TZ" Received in formalin is one core measuring 0.5 cm. (ns)
    K. "Left lateral" Received in formalin is one core measuring 1.2 cm. (ns)
    L. "Left paramedian base" Received in formalin is one core measuring 0.5 cm. (ns)
    M. "Left posterior base" Received in formalin is one core measuring 1.2 cm. (ns) AD

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

    Now we just need to discuss why my PSA is 15.1 and I have constant pain urinating.
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    2019,PSA8.2,MRI Pirads 2,Trans/Median nodules,vol 36mL,Glea6,2 cores
    2020 PSA ~8,MRI Pirads 2,Trans/Median Nodules, Vol 36mL
    2022 PSA 12.8,15,MRI Pirads 2,Trans/Median Nodules,Peri zone abnormalities,Geographic inflammation right peri zone, Vol 36mL

     
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    Old 05-06-2022, 07:50 AM   #30
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    Re: New User - Active Surveillance Changes

    You are very low risk.

    Looks like the only thing you need to be thinking about prostate cancer is the date of your next surveillance appointment.
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