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Thread: Undecided

  1. #11
    Quote Originally Posted by Duck2 View Post
    I realize everyone is different, but the ability to have an erection in hospice seems a fools goal.
    Not trying to be snarky but I tend to agree. Iím in the same boat relatively speaking and while loss of sexual function would be tremendously bad, dying a prostate cancer death would trump that on the ďthis sucksĒ scale.

    Iím having to transition to a new doctor after my current doctor canceled my six month post-dx biopsy when I scheduled it at the hospital instead of the office. Not sure why but the nurse said he would just do a PSA check at six months instead of the biopsy. I donít think so, sparky.

    If they find more/worse cancer Iím just going to elect surgery. At 48 radiation isnít a viable solution for me. Iíll deal with what comes next but my thought has always been that my real risk comes from under treating this and letting it get out of hand.

    Best of luck to you

  2. #12
    Quote Originally Posted by Duck2 View Post
    I realize everyone is different, but the ability to have an erection in hospice seems a fools goal.
    On the other hand, the entire argument of the anti-screening contingent is that too many G6 men are being over-treated. Every choice has its bad-case outcomes, unfortunately. The reply to the over-treatment argument is AS and genomic testing. No one dies from prostate-contained cancer. Monitoring and treating at the signs of a worsening situation seems reasonable.
    Last edited by DjinTonic; 04-29-2019 at 02:48 AM.

  3. #13
    Quote Originally Posted by DjinTonic View Post
    On the other hand, the entire force of the anti-screening contingent is that too many men are being over-treated. Every choice has its bad-case outcomes, unfortunately, The reply to the over-treatment argument is AS. No one dies from prostate-contained cancer. Waiting and acting at the first signs of a worsening situation seems reasonable.
    Valid point.

    But biopsies have high rates of false negatives....MRIís are basically useless in practical use (my MRI missed my cancer and found things that werenít cancer), half of my tests meant to exclude cancer are indicative of problems and half are pointing away from problems. We know that a significant number of guys get their cancer upgraded when RP is performed. So how do I ever confidently say whether I have more advanced cancer or whether itís in the prostate or not? Biopsies are the answer but see the first line of this paragraph.

    So it seems at best there is a gamble no matter what you do. I know where/how Iíll take my gamble but the maddening part is not knowing if that decision will be correct. You either deal with second guessing yourself or the consequences of not acting soon enough.

    Maybe technology will advance soon, especially in imaging. If we could accurately size, locate and guarantee where the cancer is or isnít, weíd be better off.

  4. #14
    Quote Originally Posted by IceStationZebra View Post
    Valid point.

    But biopsies have high rates of false negatives....MRI’s are basically useless in practical use (my MRI missed my cancer and found things that weren’t cancer), half of my tests meant to exclude cancer are indicative of problems and half are pointing away from problems. We know that a significant number of guys get their cancer upgraded when RP is performed. So how do I ever confidently say whether I have more advanced cancer or whether it’s in the prostate or not? Biopsies are the answer but see the first line of this paragraph.

    So it seems at best there is a gamble no matter what you do. I know where/how I’ll take my gamble but the maddening part is not knowing if that decision will be correct. You either deal with second guessing yourself or the consequences of not acting soon enough.

    Maybe technology will advance soon, especially in imaging. If we could accurately size, locate and guarantee where the cancer is or isn’t, we’d be better off.
    Regarding prostate confinement, it's not biopsies alone, but biopsies, mpMRIs and targeted biopsies, CT with & without contrast, bone scans, PSMA-PET and auxim scans, sometimes x-rays, PSA and related tests, DRE, genomic and genetic testing...

    The chances of biopsies or targeted biopsies that continually miss significant lesions, however large you estimate the chance of one, go down very fast with each repeat biopsy (do the multiplication yourself to confirm this).

    Genomic testing can estimate your chances of disease that is not prostate-confined as well as your risk of metastases.

    I grant you that AS isn't for everyone who is a potential candidate. The big problem in PCa as I see it is, however, is men with metastatic disease who arrive too late for their first visit with the urologist.
    Last edited by DjinTonic; 04-29-2019 at 03:49 AM.

  5. #15
    Hi Ducky, Donít let yourself be panicked into perhaps unnecessary treatment by alarmists.

    Iíve been on active surveillance for ten years with zero progression, as proved by MRI and targeted transperineal biopsy.

    Now, with four cores bilateral at age 58, you are at slightly more risk than I was, but you are still low risk. Hopkins has the strictest AS criteria in the world, so donít be too discouraged if you donít meet their standards.

    Your plan sounds good, do an MRI, and then a targeted confirmatory biopsy within a year, to make more certain that a higher grade cancer was not missed by the first one.

    Also, studies from JH have shown that there is no additional mortality risk with men who started AS, and then were upgraded and needed treatment, versus men who chose immediate treatment.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Strict protocol of tests, including PHI, DRE, MRI, and biopsy.
    Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.
    PSA has varied up and down from 3 to 10 over the years. Is 4.0 as of September 2019.
    Hopefully, I can remain untreated. So far, so good.

  6. #16
    Ducky, I would also recommend that you buy a copy of Dr, Mark Scholzí The Key to Prostate CancerĒ. He interviewed 30 prostate cancer experts and presents their opinions on the treatments that they provide to men at different risk level. You can other it on Amazon, or anywhere else.

    If you also want a book on prostate cancer in general, then also buy Dr, Patrick Walshís Surviving Prostate Cancer. This has great detail about the disease. But, Walsh is an old-school pre-robotic surgeon, who only wrote the chapters on surgery. Still worth reading.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Strict protocol of tests, including PHI, DRE, MRI, and biopsy.
    Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.
    PSA has varied up and down from 3 to 10 over the years. Is 4.0 as of September 2019.
    Hopefully, I can remain untreated. So far, so good.

  7. #17
    Moderator Top User HighlanderCFH's Avatar
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    Quote Originally Posted by Ducky View Post
    Thanks everyone for the reply. I have been advised that I do another Biopsy in six months from original diagnosis(1/19). If any change I would have treatment right away. Most of you folks know there is a new biopsy method being used that was pioneered not far from me in Cumberland MD. I think Hopkins is using it and maybe Cleveland Clinic. Transperineal Biopsy with little infection worry. I am worried about surgery as I have a friend that had the robotic done that is still impotent after 1 year.

    Sounds like a good plan, Ducky. It is good that you would be prepared to spring into treatment action if anything changes (for the worse) with the second biopsy.

    I would look into all the pros and cons of both radiation AND surgery (both open & robotic) by consulting with top specialists in those fields. You will probably find that the incidences of fresh cancers being triggered in future years by radiation are greatly reduced by modern radiation equipment.

    The cure rates between radiation & surgery are the same, also the same between open & robotic surgery.

    The biggest advantage to surgery (as the primary treatment) is that salvage radiation is an option if primary surgery should fail. On the other hand, salvage surgery is SELDOM an option if primary radiation should fail.

    To me, that is a tiebreaker.

    As for the Gleason 3, it indeed is NOT life threatening. The trick is to also have a bit of luck on your side. I forgot the exact percentage, but I believe it is somewhere over 20% of all standard biopsies that miss other tumors. And sometimes those missed tumors happen to be more aggressive than what was detected.

    So it is always a roll of the dice to some extent.

    But, happily, the numbers are STILL very much in your favor. Thus, your gameplan seems pretty sound to me.
    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.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  8. #18
    Quote Originally Posted by DjinTonic View Post
    Regarding prostate confinement, it's not biopsies alone, but biopsies, mpMRIs and targeted biopsies, CT with & without contrast, bone scans, PSMA-PET and auxim scans, sometimes x-rays, PSA and related tests, DRE, genomic and genetic testing...

    The chances of biopsies or targeted biopsies that continually miss significant lesions, however large you estimate the chance of one, go down very fast with each repeat biopsy (do the multiplication yourself to confirm this).

    Genomic testing can estimate your chances of disease that is not prostate-confined as well as your risk of metastases.

    I grant you that AS isn't for everyone who is a potential candidate. The big problem in PCa as I see it is, however, is men with metastatic disease who arrive too late for their first visit with the urologist.
    Yes, Iím not arguing against AS in fact thatís the path I chose for mine. All my DREís have been perfectly fine as was the cystoscopy.

    The repeat biopsies are the best indicator and the more clean biopsies the better. Thatís why I pushed my current doc (soon to be fired) to do a random 12 core after the fusion biopsyóhe was planning to do only two core into the pirads 3/4. And what do you know, the cancer was found not in the 3/4 cores but in the random I asked for. Think about this...had I not asked for the second random I would have had two biopsies that said all benign prostate tissue and think how that would change my story. It might have been a year or two or even more before we did the next biopsy and found the cancer.

    Iíll look into the list and ask about them with my new doctor on 5/14. Thanks for the list, perhaps I just havenít been far enough down the road and done enough tests to help define the issue. I did ask the current doc about the CT and bone scan but he said they donít do those for G6.

  9. #19
    Quote Originally Posted by IceStationZebra View Post
    Yes, I’m not arguing against AS in fact that’s the path I chose for mine. All my DRE’s have been perfectly fine as was the cystoscopy.

    The repeat biopsies are the best indicator and the more clean biopsies the better. That’s why I pushed my current doc (soon to be fired) to do a random 12 core after the fusion biopsy—he was planning to do only two core into the pirads 3/4. And what do you know, the cancer was found not in the 3/4 cores but in the random I asked for. Think about this...had I not asked for the second random I would have had two biopsies that said all benign prostate tissue and think how that would change my story. It might have been a year or two or even more before we did the next biopsy and found the cancer.

    I’ll look into the list and ask about them with my new doctor on 5/14. Thanks for the list, perhaps I just haven’t been far enough down the road and done enough tests to help define the issue. I did ask the current doc about the CT and bone scan but he said they don’t do those for G6.
    You should feel confident if you are being followed with a good AS protocol. My short list referred to all risk categories, before and after primary treatment. I've put several studies in the Subforum (and try to mention them in posts) that emphasize that a targeted biopsy should always include the standard random cores in all prostate zones not covered by the mpMRI-identified targets! Yes, for G6 men, bone scans are not needed. And you are correct, an mpMRI identified lesions that are suspicious for cancer and does not diagnose. Imaging identifies lymph nodes that are enlarged, and perhaps suspicious for cancer for that reason.

    I think that genomic testing is a valuable tool.

    BTW, added to the Subforum today:

    Early Second Round Targeted Biopsy of PI-RADS Score 3 or 4 in 256 Men With Persistent Suspicion of Prostate Cancer [2019]

    CONCLUSION:

    A negative TBPx missed a csPCa in 13.6% of PI-RADS score 4 that was diagnosed by an early second round TBPx; the evaluation of ADC maps could select mpMRI lesions deserving a repeat TPBx.
    TBPx = (multiparametric magnetic resonance imaging/transrectal ultrasound) fusion biopsy;
    csPCa = clinically significant prostate cancer

    Djin
    Last edited by DjinTonic; 04-29-2019 at 12:52 PM.

  10. #20
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    You are all very helpful as I have not talked to many folks about this. I would have another couple questions. I am scheduled for a prostrate MRI and I forgot to ask the Uro if it was a MpMri. Are all prostate mri scans done this way? Also are there any Cleveland Clinic AS people here?

 

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