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    Old 03-11-2020, 01:40 PM   #31
    DjinTonic
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Jim, definitions of oligometastatic PCa vary, but 1-5 lesions appears to be the most widely accepted.

    You can now move on to the other review study I posted of RP vs RT for high-risk,

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
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    Old 03-12-2020, 05:17 AM   #32
    IADT3since2000
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Hi DjinTonic, you wrote:
    Quote:
    Originally Posted by DjinTonic View Post
    ...
    You can now move on to the other review study I posted of RP vs RT for high-risk,

    Djin
    Would you mind spotlighting it with a link again? I did look back yesterday and found the two pieces on the debate with Dr. Klotz taking the surgery side and a radiation oncologist taking the radiation side. The review of Dr. Klotz's presentation listed a dozen or so studies, and I may try to get to some of them, with the radiation presentation also listing studies.

    Jim

     
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    Old 03-12-2020, 05:44 AM   #33
    DjinTonic
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi DjinTonic, you wrote:

    Would you mind spotlighting it with a link again? I did look back yesterday and found the two pieces on the debate with Dr. Klotz taking the surgery side and a radiation oncologist taking the radiation side. The review of Dr. Klotz's presentation listed a dozen or so studies, and I may try to get to some of them, with the radiation presentation also listing studies.

    Jim
    Sure. Thread is here:

    https://www.healthboards.com/boards/cancer-prostate/1049067-benefits-risks-primary-treatments-high-risk-localized-locally-advanced-pca.html

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
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    Old 03-12-2020, 12:20 PM   #34
    IADT3since2000
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Becoming Empowered as a Prostate Cancer Survivor

    Hi Michael,

    I replied earlier along the same vein at 03-07-2020 04:42 PM to your earlier post, but itís worth re-emphasizing some key points. No doubt you are not the only one with the reactions you are feeling.

    You wrote this morning:

    Quote:
    Originally Posted by Michael F View Post
    ... Why oh Why do you keep digging deeper and deeper into an insignificant superficial data compilation now known as The Shanghai Study?
    This thread is essentially about empowerment, and the Shanghai Study is useful as an example.

    Empowerment for us patients involves developing the ability and attitude to interact with our doctors with our minds in gear as partners, even to the extent of deciding to seek other medical advice and developing a degree of our own expertise in the disease. The champions of empowerment I have known have worked to communicate sound research findings to patients, and to explain how patients can tap into research themselves. Empowerment involves doing our own thinking, applying our own reasoning and common sense, developing a bit of research ability, putting to use our life experience, and getting help and support from our mates and social network. Empowerment contrasts with authoritarian thinking, which is basically seeking and relying on some person we see as an infallible authority, ceding all treatment choices to that person(s). Usually that person is going to be a doctor, but sometimes itís an enthusiastic patient advocate or a blog. I suspect that most of us come into prostate cancer with an authoritarian approach initially, no matter how empowered we are in other aspects of our lives. Therefore, we need to help each other become empowered.

    The reason I have dug deep into this flawed Shanghai Study is to illustrate key points supporting empowerment. One is that publication in a peer reviewed journal is no guarantee of truth or value. That is probably a surprise to many patients, who likely figure that what is published in a medical journal by doctors, and reviewed by doctors, is going to be true. I hope my review here illustrates that that is not the case for this paper. I believe the vast majority of doctors are very smart people; but, as a result of my experience as a prostate cancer, aided by fortunately highly relevant education, I have come to comprehend that a lot of them, even doctors considered experts, are often not so hot at evaluating data and research studies, including doing the critical thinking that sorts the wheat from the chaff of research. My impression, based on brief checking, is that few doctors get more than a single introductory course in statistics in college and med school, yet statistics and experimental design, which are complex disciplines, are the bread and butter of research studies that advance medical science and clinical treatment. I would bet that only a very small percentage of patients realize that.

    If I had Godlike authority, or even an MD or PhD after my name, I might just be able to assert that this paper was misleading, but I have neither credential, and, anyway, that would be encouraging authoritarian behavior rather than empowerment. Instead, my claims achieve credibility not by my nonexistent authority but by the posted reasoning and facts behind those claims. Also, by taking our Board readers through the process of thinking this through, I hope I am illustrating how studies can be analyzed. Specifically, I hope they pick up on a few common flaws, such as the Gleason score switcheroo which is common in studies claiming to find an advantage for surgery. Also, though what you are calling the Shanghai study now looks insignificant, superficial and flawed, that was not clear just from the abstract, at first glance. I have no doubt this study will be accepted as truth by many doctors and patients, and echoed in the media. Therefore, to minimize the damage from its misinformation, it is worthwhile to debunk it. I anticipate that future reviews will be much shorter as I have hopefully already illustrated the points about empowerment with this study.

    Quote:
    This unique subset of patients may only comprise < 5% of the PCa population. Thus there are no conclusions that would apply to the remaining 95% of the PCa population.
    Two points: First, while this subset of patients is a small proportion of the overall PCa population, it is an important subset because most of these patients run a high risk of dying from prostate cancer. I havenít tried to calculate the percentage of all lethal cases that comes from this group, but I suspect it is large. Second, the conclusions from my analysis basically come down to a fact-and-reason-based finding that this study does not support its conclusion of a superiority of surgery over radiation for this group of patients. There may be such a study that is valid, and Iím hoping this thread may help determine that. The fact that there is an appearance of superiority for radiation in the early years of follow-up in this study helps contradict the analysis by the study authors, but it is no doubt weakly supported by data and not a convincing basis for a claim of radiationís superiority. In short, this is mainly a debunking set of posts for this study, rather than a claim that a certain therapy is superior in this (or any) population.


    Quote:
    In medicine, one must be guided by the Principle: "primum non nocere!" Please exercise caution when posting personal deductions and conclusions that may mislead others who are not in this small subset of patients.
    I try hard to lay out the reason and fact basis for all of my posted deductions and conclusions, and I welcome sound critical comments that suggest another view. Please feel free to do that. I am very conscious that fellow patients and their loved ones may make decisions based on what I am presenting, and I try hard to do only good and no harm. I strive to have a sound backup for everything that I post. If you feel I am misleading anyone, please state that, specifically, and explain why. Such exchanges are important in advancing science and understanding among patients.

    Quote:
    Please focus your efforts on papers germane to this forum.
    I believe I do that. If you take exception, please be specific and Board participants can discuss the issue.

    Again, thanks for expressing your reservations. Things like this need to be raised and discussed.

    Ö.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 03-13-2020, 12:38 AM   #35
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    I'm not certain doctors read these studies and are familiar with them.

    As a patient, if I attempted to have a conversation with my doctor about treatment choices referring to this study and your conclusions from it I anticipate their eyes will cross and they will tune out.

    I fail to see how this is empowering me. I can't accept your deductions any more than I can those of the study. Why? I'm not qualified to make the judgment of either regardless of your good intentions.

    Keep it simple. In my own experience on these sites, I listen for personal experiences. Yours are; failing at early detection and treatment; radiation treatment for high risk patients; hormone therapy for high risk patients; long term cancer survivor; PCa awareness advocate.

    Knowledge isn't what makes a difference. For example, we all know how to lose weight; reduce calorie intake and increase calorie usage (diet and exercise). Yet, obesity reigns and billions are spent each year in the self help weight loss industry telling us all what we already know.

    In the end, knowledge isn't what makes a difference. There's something else more powerful. Don't get me wrong. Knowledge is useful, but it's not the source of the power to make a difference, despite the adage.

     
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    Old 03-13-2020, 08:01 AM   #36
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Quote:
    Originally Posted by Prostatefree View Post
    I'm not certain doctors read these studies and are familiar with them.

    As a patient, if I attempted to have a conversation with my doctor about treatment choices referring to this study and your conclusions from it I anticipate their eyes will cross and they will tune out.

    I fail to see how this is empowering me. I can't accept your deductions any more than I can those of the study. Why? I'm not qualified to make the judgment of either regardless of your good intentions.

    Keep it simple. In my own experience on these sites, I listen for personal experiences. Yours are; failing at early detection and treatment; radiation treatment for high risk patients; hormone therapy for high risk patients; long term cancer survivor; PCa awareness advocate.

    Knowledge isn't what makes a difference. For example, we all know how to lose weight; reduce calorie intake and increase calorie usage (diet and exercise). Yet, obesity reigns and billions are spent each year in the self help weight loss industry telling us all what we already know.

    In the end, knowledge isn't what makes a difference. There's something else more powerful. Don't get me wrong. Knowledge is useful, but it's not the source of the power to make a difference, despite the adage.
    PF, Regrettably, You don't know Jim personally, as I do. He is a pillar of our area prostate cancer support group, and is indefatigable in his efforts to counsel and educate newly diagnosed and confused men on what their choices are, and what questions to be asking.

    He has done so much, for so many, over such a long time, that I dislike your characterizing his own actions as "failure". Were you diagnosed 20 years ago? You are not in any position to pass judgement.

    Jim likes to get involved in lengthy expositions, and yes, those can get deep into the weeds, but the intent is always to enlighten the discussion.

    Keep that in mind when making your pontifications.
    __________________
    In Active Surveillance program at Johns Hopkins since July 2009.

    Seven biopsies from 2009 to 2021. Three were were positive with 5% Gleason(3+3) found.

     
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    Old 03-13-2020, 08:05 AM   #37
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    I think there's a distinction to be made between "knowledge" and "information."

    There's a flood of information available on prostate cancer. Countless studies, some of them conflicting or at least lending themselves to individual interpretation.

    Sometimes you can have too much information. The result can be confusion or even paralysis. I saw this quite a bit over the course of a 40-year career in government.

    Personally, I found Jim's original post interesting, though my eyes were glazing over a bit by the end.

    In any case, I'd rather have too much information than not enough. But at the end of the day, the conversion of "information" to reliable "knowledge" is tricky business.
    __________________
    YOB: 1954
    PSA 4.4 -- Mar 2016; 5.9 Jan 2017; 7.7 Mar 2017
    3T MRI of prostate -- April 2017; prostate found to be enlarged (79cc) with two potentially cancerous lesions, one PIRADS-3 and one PIRADS-4
    Fusion biopsy -- August 2017; 14 cores taken, with two measured at Gleason 4+3, corresponding to the MRI PIRADS-4 target location
    RALP at Johns Hopkins -- February 2018
    Pathology report upgrades G4+3 tumor to 4+5. One additional cancerous nodule found, G3+4; organ-confined; margins clear, SV clear, LN clear
    Continence: One pad for two months, then dry; ED: Resolved with Cialis
    PSA less than 0.1: May 2018; Aug 2018; Dec 2018; Apr 2019; Aug 2019; Mar 2020

     
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    Old 03-13-2020, 10:56 AM   #38
    IADT3since2000
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Hi Gerard, and thanks for your comments. Here are some brief thoughts.

    Quote:
    Originally Posted by Gerard1954 View Post
    I think there's a distinction to be made between "knowledge" and "information."

    There's a flood of information available on prostate cancer. Countless studies, some of them conflicting or at least lending themselves to individual interpretation.

    Sometimes you can have too much information. The result can be confusion or even paralysis. I saw this quite a bit over the course of a 40-year career in government.
    I wasnít in government quite as long as you were, but I sure experienced trying to sort through an abundance of information. Of course, that is no problem for prostate patients who just want a doctor to tell them what to do and dictate what happens, but it can be daunting to those of us who want an empowered partnership with our medical team.


    Quote:
    In any case, I'd rather have too much information than not enough. But at the end of the day, the conversion of "information" to reliable "knowledge" is tricky business.
    It is, but we can on this board can help make it less tricky.

    Quote:
    Personally, I found Jim's original post interesting, though my eyes were glazing over a bit by the end.
    And you just reading it! My fingers were practically rebelling as I typed it. Hoping for some shorter posts in the future.

    Ö.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 03-13-2020, 01:31 PM   #39
    Gerard1954
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Quote:
    Originally Posted by IADT3since2000 View Post
    And you just reading it! My fingers were practically rebelling as I typed it. Hoping for some shorter posts in the future.
    No worries, Jim. I benefit from all your posts, short or long!
    __________________
    YOB: 1954
    PSA 4.4 -- Mar 2016; 5.9 Jan 2017; 7.7 Mar 2017
    3T MRI of prostate -- April 2017; prostate found to be enlarged (79cc) with two potentially cancerous lesions, one PIRADS-3 and one PIRADS-4
    Fusion biopsy -- August 2017; 14 cores taken, with two measured at Gleason 4+3, corresponding to the MRI PIRADS-4 target location
    RALP at Johns Hopkins -- February 2018
    Pathology report upgrades G4+3 tumor to 4+5. One additional cancerous nodule found, G3+4; organ-confined; margins clear, SV clear, LN clear
    Continence: One pad for two months, then dry; ED: Resolved with Cialis
    PSA less than 0.1: May 2018; Aug 2018; Dec 2018; Apr 2019; Aug 2019; Mar 2020

     
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    Old 03-14-2020, 12:40 PM   #40
    IADT3since2000
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Hi Prostatefree,

    Iím responding to your post to me, # of 03-13-2020, 03:38 AM. While your remarks are generally opposed to some of what I have been posting, Iím sensing that you are actually going through a necessary phase of questioning and hopefully growth in outlook and knowledge. Here are my thoughts. You wrote:

    Quote:
    I'm not certain doctors read these studies and are familiar with them.

    As a patient, if I attempted to have a conversation with my doctor about treatment choices referring to this study and your conclusions from it I anticipate their eyes will cross and they will tune out.
    You are raising both a specific issue with conclusions in what I have been calling ďthe Chinese studyĒ and a general concern with using studies in communication with our doctors, which perhaps strikes you as arrogant and disrespectul.

    Regarding the Chinese study, my conclusion is that it offers no help in deciding whether to have surgery or radiation, and therefore it would be of no help raising this particular study with a doctor. Also, I am not claiming that it is proof, or even good evidence, that radiation in this setting is superior to surgery.

    Regarding the general issue of using studies in our interactions with our doctors, it depends. I am positive that some doctors would tune out and dismiss patients who want to raise studies they consider informative to their treatment choices. Some would likely even get angry. That is probably more true of urologists, generally (not all!), as they are usually action oriented guys. Indeed, Dr. Eugene Kwon, MD, a famed urologist treating prostate cancer at the Mayo Clinic in Minnesota, once repeated the old joke that ďIf you want to hide something from a urologist, publish it!.Ē My admittedly limited experience is that medical and radiation oncologists are more willing and even eager to review and discuss studies.

    Mine were (and my urologists were less likely, and I wasnít being subtle about it). In the first half year after my diagnosis in 1999, my local urologists, after about 8 months working with me, giving me Lupron shots, and giving me much good advice, realized I needed questions answered that they were not equipped to answer or motivated to review, specifically about protecting my bone density while on Lupron and whether to add Proscar/finasteride to my ADT regimen. (They are locally respected, and I respect them in their areas of competence.) In contrast, the oncologist to whom they referred me listened to my concerns, immediately prescribed a bone density protection medication, accepted and reviewed the studies and supportive material I provided, which were unfamiliar to him re ADT3 with Proscar. A week later he agreed to manage my case on ADT3, though he said he had never done that with another patient, and I had to accept the risk, though he thought the risk was reasonable and there was a prospect of benefit.

    Those of us with simple, straightforward, fairly routine cases may not benefit from becoming empowered. On the other hand, I am convinced that those others of us with challenging and otherwise high-risk cases often have better outcomes if we become empowered. I also believe that those of us who become advocates and assist others in navigating prostate cancer, like you, benefit from becoming empowered.



    Quote:
    I fail to see how this is empowering me. I can't accept your deductions any more than I can those of the study. Why? I'm not qualified to make the judgment of either regardless of your good intentions.

    I have made certain claims about flaws in the study in a highly specific way. You have not offered anything specific to rebut those claims except a general statement that you are not qualified. Please look at those claims again. Based on your posts, I believe you do have the power to make proper observations and apply reason to those claims.

    I do understand your feeling that you are not qualified, as I myself have also known that feeling in the past. In the first months after my diagnosis I still thought of my doctors as, if not God-like, at least Wizzards of Oz in status and intelligence. By the half year point I had pulled back that curtain; though still respecting their expertise, I realized their expertise, though likely great in surgery, was limited and sometimes biased.

    It took longer to realize that I had a lot more capability to interpret medical research than I had thought, often on par with or even far exceeding that of many highly regarded doctors and researchers. I hardly know the difference between a scalpel and a steak knife, but I have spent hundreds of hours learning statistics, experimental design and dissecting the anatomy of published research studies (complex psyschology research), which most doctors have not done in biology, medicine or any other setting beyond an introductory course. However, while I have had unusual education that has helped me, I know some really sharp advocate/cancer navigators who contribute greatly and do not have special education or even college education. (College can help, but it sure isn't necessary, nor is it sufficient!) Iím inviting you to put your brain and common sense to use, and to think more highly of your own capabilities. Iím no Wizzard of Oz Dorothy, but believe me: you have a better brain than the Tin Man! Realize that!



    Quote:
    Keep it simple. In my own experience on these sites, I listen for personal experiences.

    Yes, some patients are just looking to kick the tires, so to speak. That is often helpful when most patients with certain case characteristics for certain treatments share a widely common experience. Where personal experience accounts, ďanecdotes,Ē really fail is in giving patients a good estimate of the range and odds of experiences and clinical outcomes; for that, you need sound research. That is why it is so important that at least some of this on this board are able to cite and discuss findings from published research studies. Patients wanting just a simple sound bite can skip those discussions, but my experience is that many patients want more detail.


    Quote:
    [repeating for context] In my own experience on these sites, I listen for personal experiences. Yours are; failing at early detection and treatment; radiation treatment for high risk patients; hormone therapy for high risk patients; long term cancer survivor; PCa awareness advocate.

    From your viewpoint, I am failing regarding several issues. To me, your definition of failure is someone who disagrees with you. I can back up my stands on any of these issues with sound research and would be happy to do so to the extent that time permits. Ask me. Just for starters though, there is abundant, solid, extraordinarily consistent research supporting active surveillance rather than a rush to treatment. I could go into that, but I think ASAdvocate would do it better. Regarding radiation for higher-risk patients, have you examined the graphs published by the Prostate Cancer Research Study Group, cited on this thead? Iím thinking you havenít. Re ADT, there are numerous impressive studies supporting ADT for higher-risk patients in several treatment contexts.


    Quote:
    Knowledge isn't what makes a difference. For example, we all know how to lose weight; reduce calorie intake and increase calorie usage (diet and exercise). Yet, obesity reigns and billions are spent each year in the self help weight loss industry telling us all what we already know.



    In the end, knowledge isn't what makes a difference. There's something else more powerful. Don't get me wrong. Knowledge is useful, but it's not the source of the power to make a difference, despite the adage.

    Are you really advocating ignorance? Thatís what it looks like. Really??? Of course knowledge isnít enough if you lack the motivation or resources to implement it, but a lot of us involved with this Board have what it takes to take advantage of knowledge. If not knowledge playing the key role, what is it that you claim makes a difference? Luck? Fate? God? A hollering, authoritarian, abusive drill sergeant? Okay, all of these sometimes work, but Iím going to hang in there for empowerment!

    Ö.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 03-18-2020, 11:38 AM   #41
    IADT3since2000
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Hi Djin,

    You suggested we think about the following study in your post #33 of 3/12/2020 8:44 AM: 03-12-2020, 08:44 AM 03-12-2020, 08:44

    Benefits and Risks of Primary Treatments for High-risk Localized and Locally Advanced Prostate Cancer: An International Multidisciplinary Systematic Review https://www.sciencedirect.com/science/article/abs/pii/S0302283820300713
    Online March 4, 2020 European Urology

    I have seen only the abstract of this hot-off-the-press paper, but I see two glaring, overlapping flaws Ė flaws that often appear in this kind of study of radiation and/or surgery. Both stem from the enormous improvement in radiation with its supportive technologies over the past two decades.

    The flaws are:

    1. The study requires a minimum radiation dose, 64 Gy, for inclusion in the study that is now known to be inadequate for many higher-risk patients. It is likely that a hefty proportion of EBRT patients in this study received a dose that was too low.

    2. The study period is from 2000 to May 2019. The problem here is that radiation technology changed so profoundly between those two dates, especially when the real latest date for EBRT treatment is five years earlier, May 2014, to allow for the required follow-up of at least five years. The two main changes were increasing dosing from around 60 Gy (minimum 64 Gy to be included in this study) and now in the range from 78 to 81 Gy. The lower dosing rate has proven inadequate for many higher-risk patients, yet many patients overall (as contrasted to just this study) were given these lower doses for years after 2000. Additionally, much more effective imaging and targeting were not available to many centers until about 2007, with gradual adoption after that date. Other advances included better use of ADT in support of radiation for higher risk patients and the role of supplementary pelvic radiation dosing for higher-risk patients. What these advances would do in a study that weights inputs from other studies is pull down the average success rates for radiation below the impressive rates that are now being achieved.
    In short, while success rates for surgery changed little during the study period, success rates for radiation improved markedly. I strongly suspect that the design of the study severely underestimates the success now being achieved with modern radiation and supportive technologies.

    Nonetheless, I look forward to reading the complete paper at a later date.

    Thanks for spotlighting this study!

    Ö.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 03-18-2020, 12:49 PM   #42
    DjinTonic
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    HI Jim. Be careful. If you limit yourself to 2007 and after you will paint yourself in a corner. You will be forced to use BCR data alone as a stand-in for long-term oncological results. We know better BCR ratesd do not always translate into better overall or PCa-specific survival.

    You run into a similar lack of data on long-term toxicities.

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
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    Old 03-19-2020, 12:23 AM   #43
    Prostatefree
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    failure - lack of success

    Screening for prostate cancer is designed to detect when one's PSA reaches or exceeds 4.0. Jim's first screening was over 100. The screening protocol failed him.

    This isn't rocket science.

    I could write paragraph after paragraph of explaination why this happened.

    Or I could say, if Jim had started testing sooner he may have discovered his cancer sooner. Sooner treatment has a higher likelihood of treatment success.

    The idea that beginning PSA screening at 45 for those with a family history of prostate cancer because they are at higher risk does not address the risk to those who can not know their family history.

    I'd say PSA screening should start sooner if the risk starts sooner. If I have no history of family members having prostate cancer when none were ever screened, or this information is not available to me for any reason, I start screening for my highest risk group, imo.

    Ergo, I failed screening protocol by not beginning my screening at 45. I have family history. I didn't know family history put me at higher risk until after my screening had begun at 55. Beginning to screen at 55 worked for me. This doesn't stop me from realizing others may be at greater risk than me and benefit from screening sooner than 55. Yet, a study may conclude the optimal time to start screening is 55. No one can really claim they have no family history of prostate cancer. They can only claim they don't know. I'd start screening everyone at 45. Yet, studies apparently don't support this conclusion. It would have worked much better for Jim. We may soon discover a history of testosterone use may also call for screening sooner.

    I advise everyone who asks, to beginning screening sooner. I also advise a steady and rising PSA at or above 4.0 calls for a biopsy. There are those here who do not recommend this and suggest MRIs instead.

    Empowerment begins with early detection.

    For me, Jim's experience is a great example for early detection and the failure in not achieving it. He's also a great example how to recover and survive from it. For me, detection experiences and their outcomes are the most valuable aspect of these forums.

    Finally, because I don't know doesn't mean I can't accept responsibility for it or be free from blaming others. As an example, I can accept responsibility for world hunger.

     
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    Old 03-19-2020, 09:59 AM   #44
    IADT3since2000
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Unavoidable Limitations of Sound Survival, Recurrence, Mets Results in Studies

    You wrote:

    Quote:
    Originally Posted by DjinTonic View Post
    HI Jim. Be careful. If you limit yourself to 2007 and after you will paint yourself in a corner. You will be forced to use BCR data alone as a stand-in for long-term oncological results. We know better BCR ratesd do not always translate into better overall or PCa-specific survival.

    You run into a similar lack of data on long-term toxicities.

    Djin

    Exactly! But it's not me painting myself into this corner: reality is doing the paintwork, and it affects not only me but all of us, including doctors and researchers. Basically, we lack a sound way of assessing reliable long-term survival (specific or overall) results for modern radiation because we cannot accelerate the passage of years. That does leave us, at present, with PSA results (BCR - BioChemical Recurrence) as often our best indicator, even though not completely reliable. Fortunately, 5 year results for radiation historically have given us a fairly good indicator of whether radiation is effective (BCR) and the existence and seriousness of side effects (toxicities). A key but very welcome problem for us is that we prostate cancer patients, unless we are diagnosed with extensive distant metastases, have extremely good survival even at the 10 year point, and, yet more surprisingly, very good survival at the 15 year point (compared to age-matched peers). The downside is that it makes it extremely difficult to design feasible clinical trials that give us practical insights that facilitate therapy decisions. I have looked at the SPCG-15 trial design, and I'm seeing a huge, looming problem because of these facts. More about that later, and I hope you will respond after I post, shooting for today.

    ….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.

    Last edited by IADT3since2000; 03-19-2020 at 10:03 AM. Reason: Typo, and added more re 15 year survival

     
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    Old 03-19-2020, 10:15 AM   #45
    IADT3since2000
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    Re: Lack of Evidence That Surgery Is As Good As Radiation for Higher-Risk PC Patients

    Quote:
    Originally Posted by Prostatefree View Post
    failure - lack of success

    Screening for prostate cancer is designed to detect when one's PSA reaches or exceeds 4.0. Jim's first screening was over 100. The screening protocol failed him.

    This isn't rocket science.

    I could write paragraph after paragraph of explaination why this happened.

    Or I could say, if Jim had started testing sooner he may have discovered his cancer sooner. Sooner treatment has a higher likelihood of treatment success.
    Amen to almost all of that! (In recent years, a PSA of 4 has given way as the trigger for a biopsy to consideration of the patterns of PSA movement and the size of the prostate, and reliance on biopsy alone has changed to consideration of results from several tests and frequent use of multiparametric MRI (mpMRI)).

    Back in the late 1990s, prior to my diagnosis in 1999, many doctors and health advisor authorities were preaching that screening for prostate cancer was not helpful and often resulted in bad side effects. Dr. (PhD) Ablin, author of "The Great Prostate Hoax" and the discoverer of the PSA molecule, was a leading anti-testing ********. It took m….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. e a few years to sort through this garbage, and it is one of the reasons I am so angry at Dr. Ablin and his dangerous message. His and their misinformation nearly cost me my life!

    Last edited by IADT3since2000; 03-19-2020 at 10:19 AM. Reason: Typos

     
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