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  • what to do now with Prostate Cancer?

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    Old 01-13-2020, 10:14 AM   #16
    DavidFriend
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    Re: what to do now with Prostate Cancer?

    Quote:
    Originally Posted by Prostatefree View Post
    Your PSA was probably never really undetectable. Unfortunately, people like to use that term. Your PSA was probably detectable below 0.1 all the time.

    For example, my brother used a more sensitive test and his first test after RP was 0.03. This shows his surgery failed. Six months layer his PSA was .05. He had radiation treatments soon there after.

    By testing with a <0.1 test you missing knowing your surgery failed at a cure. And, it was in error to say your PSA was undetectable. It is common language to misspeak about what is detectable and not detectable. Most men grasp at it as some thing to believe rather than understand how it is abused in this disease to mislead patients. I believe most doctors use this test to avoid explaining the distinctions around the next level of treatment.

    Would anything have changed for you if you had known immediately 3 months after the RP it had failed as a cure? Probably not. Maybe you could have retreated it sooner.

    It is mostly likely your cancer had already metastisized before the surgery. There is no way to have known this was possible with out more of your history before us, such as how long this has been going on. If surgery was not possible as a cure, you could have treated your cancer locally with radiation initially in lieu of surgery and avoided the trauma of two levels of treatment to reach this point.

    I don't say this to discourage you, but to share for others who may be similar to you and struggling with reading the tea leaves that is the diagnostic and treatment choice phase of this disease.

     
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    Old 01-13-2020, 10:28 AM   #17
    DavidFriend
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    Re: what to do now with Prostate Cancer?

    Thanks so much Gary. Sounds like a second opinion with Tony D'Amico would be helpful. When my PSA doubled in six months (prior to radiation, but post RP) I did go there and they recommended radiation and androgen suppression meds of Casodex and Lupron.

    Now I'm waiting until May (it will be six months since my .1 PSA in November) and I imagine if it looks like it's going up I'll go back on Lupron.

    Do you think I should wait until the next PSA? as there will be more of a pattern or go for a 2nd opinion sooner?

    Thanks again for taking the time to write!!

     
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    Old 01-13-2020, 01:10 PM   #18
    Insanus
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    Re: what to do now with Prostate Cancer?

    Quote:
    Originally Posted by IADT3since2000 View Post
    Here's a book I consider a key to unlocking success against prostate cancer, including recurrence. It is entitled, "The Key to Prostate Cancer" by medical oncologist Mark Scholz and 29 others. The book contains 6 chapters in Section IV, 43 pages long, which essentially deals with non-metastatic recurrence. One point made in the overview is that survival rates are generally very good, much better than for other major cancers; patients are more likely to die of natural causes than prostate cancer. Moreover, the overview chapter states that the treatment goal is cure (rather than just control or easing symptoms).

    Jim

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    Big difference between intent and ability.

     
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    Old 01-13-2020, 01:24 PM   #19
    Insanus
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    Re: what to do now with Prostate Cancer?

    Quote:
    Originally Posted by Prostatefree View Post
    Your PSA was probably never really undetectable. Unfortunately, people like to use that term. Your PSA was probably detectable below 0.1 all the time.

    For example, my brother used a more sensitive test and his first test after RP was 0.03. This shows his surgery failed. Six months layer his PSA was .05. He had radiation treatments soon there after.

    By testing with a <0.1 test you missing knowing your surgery failed at a cure. And, it was in error to say your PSA was undetectable. It is common language to misspeak about what is detectable and not detectable. Most men grasp at it as some thing to believe rather than understand how it is abused in this disease to mislead patients. I believe most doctors use this test to avoid explaining the distinctions around the next level of treatment.

    Would anything have changed for you if you had known immediately 3 months after the RP it had failed as a cure? Probably not. Maybe you could have retreated it sooner.

    It is mostly likely your cancer had already metastisized before the surgery. There is no way to have known this was possible with out more of your history before us, such as how long this has been going on. If surgery was not possible as a cure, you could have treated your cancer locally with radiation initially in lieu of surgery and avoided the trauma of two levels of treatment to reach this point.

    I don't say this to discourage you, but to share for others who may be similar to you and struggling with reading the tea leaves that is the diagnostic and treatment choice phase of this disease.
    Or maybe it is as simple as using a less expensive test that requires less calibration of the equipment.

     
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    Old 01-13-2020, 01:53 PM   #20
    DjinTonic
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    Re: what to do now with Prostate Cancer?

    Quote:
    Originally Posted by Insanus View Post
    Or maybe it is as simple as using a less expensive test that requires less calibration of the equipment.
    If you encounter a rising PSA after a RP and go to the MSK nomogram for your statistical outcome of SRT at

    https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

    you'll read:

    Quote:
    Our salvage radiation therapy nomogram predicts whether a recurrence of prostate cancer after radical prostatectomy can be treated successfully with salvage radiation therapy (external-beam radiation given after the prostate cancer returns). It calculates the probability that the cancer will be controlled and PSA level undetectable six years after salvage therapy. You can use this nomogram for applicable results if your post-radical prostatectomy serum PSA level was at first undetectable (less than 0.05 ng/mL) and then rose steadily, indicating a recurrence.
    [Emphasis mine]

    If you don't have the PSA data to enter there, and ask yourself the question "Was I being followed by a sensitive enough PSA test?" the answer is No.

    It does no good to say "But no one thought that with my G score and my good surgical results, I might need further treatment!" Clearly some one did have that eventuality in mind, which is why your post-op PSA was being measured at all.

    Djin, in the role of Bad Cop.
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    Old 01-13-2020, 02:00 PM   #21
    DavidFriend
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    Re: what to do now with Prostate Cancer?

    Thanks so much for taking the time to write. I have a lot of research to do. At this point I think I should wait for another PSA in May (last one was November, .1) and then if it continues to go up I should go for a second opinion. I think the Urologist and MO will want me to go back on Lupron.

    Thanks again.

     
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    Old 01-13-2020, 04:47 PM   #22
    Gary I
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    Re: what to do now with Prostate Cancer?

    Quote:
    Originally Posted by DavidFriend View Post
    ...Do you think I should wait until the next PSA? as there will be more of a pattern or go for a 2nd opinion sooner?
    If me, I'd get in there as soon as I could get an appointment with D'Amico. An alternative would be to make an appointment now, for late May, after you next blood draw results.

    I wouldn't wait until May to do something.
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    Old 01-19-2020, 04:19 PM   #23
    DavidFriend
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    Re: what to do now with Prostate Cancer?

    thanks so much for getting back to me again!! Hope you're doing well.

     
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    Old 01-20-2020, 03:48 AM   #24
    Prostatefree
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    Re: what to do now with Prostate Cancer?

    Quote:
    Originally Posted by Insanus View Post
    Or maybe it is as simple as using a less expensive test that requires less calibration of the equipment.
    Personally, I doubt doctors are that unprofessional. I suspect they believe in the protocols they use. The medical profession is very conservative. While studies are showing earliar treatment is more effective in cases with adverse conditions the current protocol of waiting until 0.1 or higher to instigate follow up treatment is still the standard.

    A patient has to request a more aggressive approach to get one. A doctor is not likely to risk educating and then recommending it over their standard protocols. My personal experience is most doctors don't know what something costs, or care. Unless they own the service. I suspect few own labs.

    Most doctors groups own larger services like radiation equipment. In your view, more aggressive testing leading to more expensive treatments would serve a doctors attempt at fraud better than saving a lab service nickels and dimes on testing.

    The insurance company may care, but most doctors pride themselves on ordering what is necessary despite insurance companies efforts at cost control.

     
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    Old 01-20-2020, 05:48 AM   #25
    Insanus
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    Re: what to do now with Prostate Cancer?

    See post below.

     
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    Old 01-20-2020, 05:50 AM   #26
    Insanus
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    Re: what to do now with Prostate Cancer?

    Quote:
    Originally Posted by Prostatefree View Post
    Personally, I doubt doctors are that unprofessional. I suspect they believe in the protocols they use. The medical profession is very conservative. While studies are showing earliar treatment is more effective in cases with adverse conditions the current protocol of waiting until 0.1 or higher to instigate follow up treatment is still the standard.

    A patient has to request a more aggressive approach to get one. A doctor is not likely to risk educating and then recommending it over their standard protocols. My personal experience is most doctors don't know what something costs, or care. Unless they own the service. I suspect few own labs.

    Most doctors groups own larger services like radiation equipment. In your view, more aggressive testing leading to more expensive treatments would serve a doctors attempt at fraud better than saving a lab service nickels and dimes on testing.

    The insurance company may care, but most doctors pride themselves on ordering what is necessary despite insurance companies efforts at cost control.
    Then ask yourself, why donít the cancer centers of excellence share a standard post surgery PSA testing value? It ranges between 0.10 and 0.01. All of these labs have the ability to test to the same lower limit. I think the lab directors are calling the shots.

    What startling in places like Mayo using 0.10.

     
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    Old 01-20-2020, 06:01 AM   #27
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    Re: what to do now with Prostate Cancer?

    Quote:
    Originally Posted by Insanus View Post
    Then ask yourself, why donít the cancer centers of excellence share a standard post surgery PSA testing value? It ranges between 0.10 and 0.01. All of these labs have the ability to test to the same lower limit. I think the lab directors are calling the shots.

    What startling in places like Mayo using 0.10.

    Each patient has their own disease and their own experience. I think it really depends on the results that come back from the pathology lab as well as other factors as to the riskiness on whether to be hyper vigilant on commencing additional treatment or not.

     
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    Old 01-20-2020, 06:52 AM   #28
    Michael F
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    Re: what to do now with Prostate Cancer?

    Replying to Posts # 24 & 26:

    Which post RP PSA Methodology?:

    - This is determined by the patient's health insurance. Universally, it will be a "standard" PSA test.

    - The MD must request an ultrasensitive PSA (uPSA) Methodology.

    IMO, serial monitoring with uPSA should only be utilized by those with Surgical & Path findings that place them in an elevated risk for recurrence category.

    MF

     
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    Old 01-20-2020, 07:18 AM   #29
    Prostatefree
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    Re: what to do now with Prostate Cancer?

    The OP claimed to have extra capsular extension.
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    Old 01-20-2020, 08:16 AM   #30
    IADT3since2000
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    Re: what to do now with Prostate Cancer?

    Quote:
    Originally Posted by Michael F View Post
    Replying to Posts # 24 & 26:

    IMO, serial monitoring with uPSA should only be utilized by those with Surgical & Path findings that place them in an elevated risk for recurrence category.

    MF
    Ultrasensitive PSA (uPSA) tests should also be used for those on ADT once their PSA has dropped to <0.01. Research has shown that a very low nadir (<0.05, possibly <0.01 even better) is a prognostic indicator of success that is superior to success for patients unable to reduce their PSA to less than 0.05. I had a friend in the latter category; he achieved 0.05 but was unable to go lower; a spot metastasis was found by advanced imagery and cured with spot radiation. That happened at least once again, but I believe he is now doing fine. uPSA has been key in managing my own once-high-risk case.

    Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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