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    Old 02-03-2020, 08:54 PM   #1
    mufj
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    active surveillance - path forward

    Hi All
    summary
    DX 4/18 1/12 G6(5%) initial PSA at DX-4.3,DRE-nodule, MRI-piRADS 2 nofocal lesions BPH identified, 2nd DRE(penn med) slight induration.
    PSA basically flat running between 3.0 and 3.5-see signiture
    2nd BX 6-19 15 cores all negative, 2nd MRI 1-20 no change, DRE(1/20) slight induration
    path forward biopsy 6-20,PSA every 3 months
    note original biopsy done by NJ urology but switched to Penn Medicine(any comments about Penn appreciated)

    just had urology appt with the RN(she was way better at explaining thing in a manner that made sense than anyone I dealt with) of a urologist(one who did 2nd biopsy) who practice specializes in oncology.

    Previous appt were with a general urologist who had a different opinion he wanted MRI 6-20 not biopsy and PSA every 6 Mo

    my preference would be to do just the MRI given the fact that there are no markers indicating a problem and eliminate or defer another intrusive biopsy(had no problems with previous biopsies). The RN told me there practice is to do at least 3 biopsies after which they will decide to just stick with MRI and PSA, spread out biopsies in some way or stick with annual biopsies with MRI. This assumes that there are no negative developements. I dont wnat to be sloppy and miss something but biopsies are intrusive and have risk so would like to avoid them

    Also is it common to visit with an RN instead of the DR. Do like her cause she listens and explains well so far. Figure the urologist is reviewing all that is goin on. The first urologist at penn did not seem to be totaly on board with active surveillance(old school). Probably ready to retire??. Also he was diagnosed with melanoma(a bias here)

    Will have a further question about BPH later but dont know if this is the right forum??

    So any comments deeply appreciated
    This is a great forum loaded with information

    sorry bout being so long winded, I know most here have far more serious issues to deal with and I feel for them but in spite of many problems we do live in miraculous times where we can so easily share our experiences with a broad spectrum of people

     
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    Old 02-04-2020, 06:39 AM   #2
    jorlo
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    Re: activ surveillance-path forward

    I'm on AS. Here are my thoughts:
    1. I'm shocked (but probably shouldn't be) that there are still docs who look at your case and are not comfortable with AS! One core positive with less than 5% G6 seems to be a poster child for AS.

    2. My doc wants a biopsy every two years if there are no big changes in PSA or the MRI. I don't think you can count on MRIs to catch everything. They are good, but not perfect. After 3 biopsies and many more MRIs, there may be a point when you can consider dropping biopsies. They are literally and figuratively a pain in the ***, but cancer is too dangerous to play around with.

    3. I've used two doctors, and I've never just seen a nurse. However, you are probably right that the doc is looking over everything and the nurse has more time to explain it to you.

    Good luck with AS.

     
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    Old 02-04-2020, 07:40 AM   #3
    Prostatefree
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    Re: activ surveillance-path forward

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    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    12-8-19 PSA less than 0.02, zero club 3.5 yrs

     
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    Old 02-05-2020, 12:46 AM   #4
    HighlanderCFH
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    Re: active surveillance - path forward

    I agree that AS is definitely a valid choice. Perhaps with annual biopsies but, with only one positive core with small involvement, perhaps one follow biopsy with frequent PSA tests and a MRI once a year.

    Indeed, feel free to ask anything about BPH in this forum.

     
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    Old 02-05-2020, 09:58 AM   #5
    Southsider170
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    Re: active surveillance - path forward

    Quote:
    Originally Posted by mufj View Post
    Hi All
    summary
    DX 4/18 1/12 G6(5%) initial PSA at DX-4.3,DRE-nodule, MRI-piRADS 2 nofocal lesions BPH identified, 2nd DRE(penn med) slight induration.
    PSA basically flat running between 3.0 and 3.5-see signiture
    2nd BX 6-19 15 cores all negative, 2nd MRI 1-20 no change, DRE(1/20) slight induration
    path forward biopsy 6-20,PSA every 3 months
    note original biopsy done by NJ urology but switched to Penn Medicine(any comments about Penn appreciated)

    just had urology appt with the RN(she was way better at explaining thing in a manner that made sense than anyone I dealt with) of a urologist(one who did 2nd biopsy) who practice specializes in oncology.

    Previous appt were with a general urologist who had a different opinion he wanted MRI 6-20 not biopsy and PSA every 6 Mo

    my preference would be to do just the MRI given the fact that there are no markers indicating a problem and eliminate or defer another intrusive biopsy(had no problems with previous biopsies). The RN told me there practice is to do at least 3 biopsies after which they will decide to just stick with MRI and PSA, spread out biopsies in some way or stick with annual biopsies with MRI. This assumes that there are no negative developements. I dont wnat to be sloppy and miss something but biopsies are intrusive and have risk so would like to avoid them

    Also is it common to visit with an RN instead of the DR. Do like her cause she listens and explains well so far. Figure the urologist is reviewing all that is goin on. The first urologist at penn did not seem to be totaly on board with active surveillance(old school). Probably ready to retire??. Also he was diagnosed with melanoma(a bias here)

    Will have a further question about BPH later but dont know if this is the right forum??

    So any comments deeply appreciated
    This is a great forum loaded with information

    sorry bout being so long winded, I know most here have far more serious issues to deal with and I feel for them but in spite of many problems we do live in miraculous times where we can so easily share our experiences with a broad spectrum of people

    As medical science learns more and more about prostate cancer and imaging becomes better, the number of biopsies that will be prudent will decrease.

    I have not seen nurse practitioners at my own urologist's office, however I do see them all the time at my PCP's office. I find them to be pretty sharp and they are being supervised, and will call it to the physician's attention if needed. That's certainly a positive sign that you aren't always seeing the doctor, tells me that they aren't terribly panicked about your condition.

     
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    Old 02-05-2020, 10:22 AM   #6
    IceStationZebra
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    Re: active surveillance - path forward

    I don't want to be a wet blanket but our stats seem about the same. I was on AS for two years between first concern over rising PSA and removal of my prostate. I never had anything felt on a DRE and had tests that pointed towards cancer and away from it.

    Others will disagree but I simply do not trust AS. My high PSA was 4.5 and the MRI suggested it was all prostate confined. My doc was certain that this would be routine and that he was 99% certain that my cancer was prostate confined. It wasn't, I had a small 3mm positive margin that surprised everyone.

    Without precise and dependable imaging or blood tests, you're just playing with fire. It took 3 biopsies with two different urologists over a two year span to find enough cancer to justify removal.

    Had my prostate out 12/9 and nearly am recovered. I'm very glad i didn't wait but even with my numbers and biopsy results I was questioning right up to the day of surgery if we weren't going too soon. It turned out that we went too late to keep it absolutely prostate confined.

    Buyer beware. You're in Vegas playing craps betting on a hard 8 with AS in my mind. But that's me, good luck with your decision.

     
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    Old 02-05-2020, 11:12 AM   #7
    IADT3since2000
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    Re: active surveillance - path forward

    Hi again IceStationZebra. You recently posted in part:
    Quote:
    Originally Posted by IceStationZebra View Post
    I don't want to be a wet blanket but our stats seem about the same. I was on AS for two years between first concern over rising PSA and removal of my prostate. I never had anything felt on a DRE and had tests that pointed towards cancer and away from it.

    Others will disagree but I simply do not trust AS. My high PSA was 4.5 and the MRI suggested it was all prostate confined. My doc was certain that this would be routine and that he was 99% certain that my cancer was prostate confined. It wasn't, I had a small 3mm positive margin that surprised everyone.

    Without precise and dependable imaging or blood tests, you're just playing with fire. It took 3 biopsies with two different urologists over a two year span to find enough cancer to justify removal....
    Couldn't you also view this as AS working for you? It caught a stealthy cancer in a timely fashion. It is quite possible that you would have had that positive margin even with immediate surgery. Also, many patients with positive margins do just fine long term. I don't see that your experience is evidence that AS is "playing with fire."

    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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    Old 02-05-2020, 11:46 AM   #8
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    Re: active surveillance - path forward

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi again IceStationZebra. You recently posted in part:

    Couldn't you also view this as AS working for you? It caught a stealthy cancer in a timely fashion. It is quite possible that you would have had that positive margin even with immediate surgery. Also, many patients with positive margins do just fine long term. I don't see that your experience is evidence that AS is "playing with fire."
    Jim,

    ISZ had a very unusual case, which I followed on the former site. It appeared that his tests were conflicted for a very long time. He took a beating from some of the "don't deny or delay" folks there...and, they turned out to be right.

    While I also disagree with his AS assessment as a matter of fact, he is justified in having that opinion. As always, the problem is our current state of testing, which generates all the guesswork and viewpoints.
    __________________
    In Active Surveillance program at Johns Hopkins since July 2009.

    Six biopsies from 2009 to 2019. Three were were positive with 5% Gleason(3+3) found.

     
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    Old 02-05-2020, 12:18 PM   #9
    IceStationZebra
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    Re: active surveillance - path forward

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi again IceStationZebra. You recently posted in part:

    Couldn't you also view this as AS working for you? It caught a stealthy cancer in a timely fashion. It is quite possible that you would have had that positive margin even with immediate surgery. Also, many patients with positive margins do just fine long term. I don't see that your experience is evidence that AS is "playing with fire."

    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.

    Jim,

    I guess for me had I come away with a clean margin I would have declared mission accomplished with respect to the AS. In my mind that tiny 3mm positive margin opens up a world of uncertainty that wouldn't be there if it was truly prostate confined.

    My doctor personally reviewed the slides in addition to the pathologist and he said that the cancer literally just touched the margin and he didn't believe that it could have escaped. Well, I'm anything but conventional, so five years from now I might say "yeah AS worked". Had I gone to surgery a year earlier maybe that small margin would still have been contained but then again, maybe it started at the margin and grew into the prostate. Who knows.

    In addition only G6 was found but what if G7, 8 or 9 was found? My cancer seemed to follow none of the rules and convention but some could have made the argument I was going to surgery too fast using my test results.

    By all indications I was a low risk patient and everyone was surprised except for me...I had a feeling.

     
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    Old 02-05-2020, 12:44 PM   #10
    IceStationZebra
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    Re: active surveillance - path forward

    Quote:
    Originally Posted by ASAdvocate View Post
    Jim,

    ISZ had a very unusual case, which I followed on the former site. It appeared that his tests were conflicted for a very long time. He took a beating from some of the "don't deny or delay" folks there...and, they turned out to be right.

    While I also disagree with his AS assessment as a matter of fact, he is justified in having that opinion. As always, the problem is our current state of testing, which generates all the guesswork and viewpoints.
    Lol, I am the poster child for WTH. My case was very strange, many of my tests pointed to cancer and many away. I did get a lot of people who felt i was way too eager to go to surgery. Some supported doing it now.

    The end analysis seems to indicate that the MRI was fairly useless in my case. Other tests that some doctors use as confirmatory or extra proof of their theory turned out to be incorrect.

    So maybe I need to soften my stance a little o. AS and say for me it would have potentially harmed me to stay on AS. Would things have changed if we had done surgery a year or two earlier? I don't know.

    I guess you would call my situation even more odd because my AS was incidental to finding the cancer. It took from March 2018 to September 2019 to find the cancer to justify surgery. However, if I chose to continue AS for the foreseeable future it would have likely ended up harming me despite my testing suggesting no big deal.

    Again I don't disparage any guy's decision to do AS. I guess I'm too jumpy to be a good candidate.

     
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    Old 02-06-2020, 09:41 AM   #11
    IADT3since2000
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    Re: active surveillance - path forward

    Hi again IceStationZebra,

    Quote:
    Originally Posted by IceStationZebra View Post
    ...However, if I chose to continue AS for the foreseeable future it would have likely ended up harming me despite my testing suggesting no big deal.

    Again I don't disparage any guy's decision to do AS. I guess I'm too jumpy to be a good candidate.
    Thank you for sharing your experience. It helps all of us understand what it is like for patients to be on AS for a while and then be in that pool of patients who actually need treatment, with some not seeing much evidence indicating that need, as in your case.

    I have come to believe that we tend to do better when we "own" our treatment decisions, as you have done. For some of us, that inner sense has proven a good guide over our lives.

    I too am an outlier in what I have done and the success I have had. Statistics help us make decisions; they have helped me a lot in making my therapy decisions; but many of us are not "the average" patient, and it is helpful to get glimpses of "ground truth."

    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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    Old 02-06-2020, 10:53 AM   #12
    Prostatefree
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    Re: active surveillance - path forward

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi again IceStationZebra,



    Thank you for sharing your experience. It helps all of us understand what it is like for patients to be on AS for a while and then be in that pool of patients who actually need treatment, with some not seeing much evidence indicating that need, as in your case.

    I have come to believe that we tend to do better when we "own" our treatment decisions, as you have done. For some of us, that inner sense has proven a good guide over our lives.

    I too am an outlier in what I have done and the success I have had. Statistics help us make decisions; they have helped me a lot in making my therapy decisions; but many of us are not "the average" patient, and it is helpful to get glimpses of "ground truth."

    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.
    AS is easy if you are in denial and delay. True As and early detection are very difficult, imo. It requires a ruthless commitment to detect, patience to persist, and knowledge of the actual risk in the face of what is known.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    12-8-19 PSA less than 0.02, zero club 3.5 yrs

     
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    Old 02-06-2020, 01:56 PM   #13
    ASAdvocate
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    Re: active surveillance - path forward

    Quote:
    Originally Posted by Prostatefree View Post
    AS is easy if you are in denial and delay. True As and early detection are very difficult, imo. It requires a ruthless commitment to detect, patience to persist, and knowledge of the actual risk in the face of what is known.
    Umm, I will agree that denial and delay are risky habits, but knowing the actual risks if you follow the protocols is a strong incentive to show up for appointments.

    MSKCC recently published statistics from their AS program. Out of 2,600 low risk men, ONE has died from PCa at 15 years. That's better than Hopkins, which has lost two. To quote MC Hammer: "Can't touch this"

    So, knowing that your chances for PCa survival are sky high IF you follow the program rules, there is no reason for AS men to be stressed.

    https://www.urotoday.com/conference-highlights/suo-2018/suo-2018-prostate-cancer/108865-suo-2018-long-term-outcomes-of-active-surveillance-for-prostate-cancer-the-memorial-sloan-kettering-cancer-center-experience.html
    __________________
    In Active Surveillance program at Johns Hopkins since July 2009.

    Six biopsies from 2009 to 2019. Three were were positive with 5% Gleason(3+3) found.

     
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    Old 02-06-2020, 02:19 PM   #14
    Prostatefree
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    Re: active surveillance - path forward

    Quote:
    Originally Posted by ASAdvocate View Post
    Umm, I will agree that denial and delay are risky habits, but knowing the actual risks if you follow the protocols is a strong incentive to show up for appointments.

    MSKCC recently published statistics from their AS program. Out of 2,600 low risk men, ONE has died from PCa at 15 years. That's better than Hopkins, which has lost two. To quote MC Hammer: "Can't touch this"

    So, knowing that your chances for PCa survival are sky high IF you follow the program rules, there is no reason for AS men to be stressed.

    https://www.urotoday.com/conference-highlights/suo-2018/suo-2018-prostate-cancer/108865-suo-2018-long-term-outcomes-of-active-surveillance-for-prostate-cancer-the-memorial-sloan-kettering-cancer-center-experience.html
    You would think. What percentage of men who believe they are practising AS are in professionally managed programs with published protocols and are honoring them?

    Intently screening over an extended time for suspected prostate cancer is stressful. Knowing the precentage of those going on to treatment while in the program is stressful. Isn't it half the men will go on to treatment? That's stressful, imo.

    My experience was relatively slam bang done! I'll stand by my statement. Early detection and early treatment is tough duty, but the way you want it to go, imo.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    12-8-19 PSA less than 0.02, zero club 3.5 yrs

     
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    Old 02-06-2020, 02:53 PM   #15
    ASAdvocate
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    Re: active surveillance - path forward

    Quote:
    Originally Posted by Prostatefree View Post
    You would think. What percentage of men who believe they are practising AS are in professionally managed programs with published protocols and are honoring them?
    A serious question, and I don't know the answer. From what I read in various groups around the internet, it seems that a lot of men THINK that they are on AS, but aren't, in my opinion. Many of them in certain forums and groups are opposed to the MRI contrast agent, biopsies that they think spread cancer, and refuse to heed doctors who don't tell them what they want to hear. It worries me.

    There are a number of 'AS advocates" who tell me that I am too conservative and listen too much to doctors, rather than some diet gurus and fearmongers that they follow.

    You asked a tough question. IMHO, many AS men fail it.
    __________________
    In Active Surveillance program at Johns Hopkins since July 2009.

    Six biopsies from 2009 to 2019. Three were were positive with 5% Gleason(3+3) found.

     
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