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    Old 02-15-2020, 07:54 AM   #31
    Gary I
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    Re: Are Club Membership Cards Mailed?

    Quote:
    Originally Posted by IADT3since2000 View Post
    One thing is clear: there is a range of opinion among survivors on these issues.
    I would call these experiences, not opinions. I suspect most brothers come here to learn of our actual results, not to be lectured on our biased opinions.

    As for me, I had minor, and short duration issues from surgery, despite lots of old wives tales, and as a septuagenarian.

    Subsequent SRT 39 session radiation was much more problematic, and I'm just getting back to my new normal a year and a half later. Possible future RT issues are TBD.

    I urge each man who comes here for advice in choosing a treatment, to take our advice and experiences with more than a grain of salt, and to do your own in-depth research. We are all different, and our choice is greatly influenced by our own backgrounds and comfort levels. There are no silver bullets.

    Choose wisely!
    __________________
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    Second 3T MRI 1/17
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    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over next 4 months
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    One inch tumor still in prostate bed
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    SRT, 2ADT, IMGT 70.2 Gy, complete 5/18
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    Old 02-15-2020, 09:11 AM   #32
    IADT3since2000
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    Re: Are Club Membership Cards Mailed?

    Quote:
    Originally Posted by Gary I View Post
    I would call these experiences, not opinions. I suspect most brothers come here to learn of our actual results, not to be lectured on our biased opinions.
    What we experience personally is based on one individual case. It is necessarily what medical professionals call "anecdotal evidence." Most of us are going to have "average" experiences," though boards like this and support/education groups tend to have more regulars and attendees who have experienced problems are challenging cases or are new comers or newly recurring patients.

    In contrast, medical professionals depend on published medical research. We are blessed as prostate cancer patients that our disease has been and is being very heavily researched. Though not all published research is sound, a lot of it is. My personal hope is that people coming to this board will learn not only from our individual stories but also from leads to and discussions of research that bears on their issues.

    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 02-15-2020, 02:08 PM   #33
    IADT3since2000
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    Re: Are Club Membership Cards Mailed?

    Hi Prostatefree (and Skipper3). Thanks for these thought provoking statements. You wrote in part on 02-15-2020, 08:34 AM, post #30:

    Quote:
    Jim, I'd rather hear your opinions on denial and delay.
    Regarding “denial”, “I’m agin it.” Seriously, denial of the possibility of any health threat, including prostate cancer, or the denial of treatment when needed, or the denial of the key importance of active surveillance for active surveillance patients, and denial of obvious incompetence or inadequate competence in our doctors raise serious risks. I have seen examples of these kinds of denial, sometimes with death being the result. I advocate for a smart form of prostate cancer screening as vigorously as I can, and I oppose as vigorously as I can those who do not recommend screening. To me, smart screening involves a man who has been informed and accepts, before screening, that mild cases of prostate cancer are best managed with active surveillance; that immunizes him to an emotional, uninformed rush into unnecessary treatment if he has a case appropriate for active surveillance. Some of us just can’t stand the idea of having any cancer in our bodies, even if it is too mild to justify treatment; if a man is in that group, IMO he really needs to consider whether he should be screened: if he is screened and has low-risk cancer, the risk of overtreatment is high; if he decides against screening, his odds of serious prostate cancer are low, but his life and quality of life are at stake. Attempting education about active surveillance can help, but there is only so much we can do. It’s his right to make the choice.

    Regarding “delay”: I’m assuming you mean deliberate delay, not ignorant delay, as we often cannot do much about the latter as we do not realize there is a problem. I am real familiar with ignorant delay, in PSA screening to be specific, as it nearly cost me my life; that ignorant delay was aided and abetted by many loud voices in the medical community who downplayed the value of PSA testing, a sad and dangerous circumstance that exists even today, though to a lesser extent. As for deliberately, knowingly holding off on a course of action, that can be wise or unwise, and sometimes even a wise choice turns out wrong. Consider the command “Don’t fire until you see the whites of their eyes”, given by one of the American colonial leaders at the Battle of Bunker Hill. That was an order to delay, and it involved increased risk from an enemy that would come nearer before being opposed (aka, for us, “treated”). On the other hand, it meant that the colonial fighters would be able to preserve their scarce powder and shot and thus be more effective with their not-so-reliable muskets and scarce ammo.

    I made a similar call, deferral, for my own case, which may serve as an example and is the kind of situation that in some ways faces many of us. I had been refused surgery, and I knew radiation back in 2000, which I had initially chosen after being turned down for surgery, was unlikely to cure me, which was the key factor for me, and would very likely involve unpleasant life-long side effects as that was typical of radiation back then (no longer); I knew technology was improving, including radiation technology; I knew I was responding well to ADT but that ADT was not curative and that it was only a matter of time before the ADT would no longer hold the cancer in check; but I also knew that I had a life-threatening case where the cancer could mutate into an even more dangerous form. I chose to defer a shot at a cure and take an informed gamble that technology would improve, but, frankly, my wife and I both expected I would die before I could take my shot. When I “saw the whites of their eyes” (aka when technology had improved), I took my shot at a cure in 2013. I am now apparently cured and my side effect burden is very low. I won the bet. But I realize that I have been fortunate; the ADT could have stopped working early, and I could have died. I used every tool I could to improve my odds of success, but there was no guarantee.

    A lot of us who face serious prostate cancer have to make these kinds of calls. At the other end of the risk spectrum, so do patients who are eligible for active surveillance, but fortunately the risk levels, these days, are far lower for them as research has so convincingly demonstrated the effectiveness and safety of active surveillance for appropriate patients, though they too do not get an ironclad guarantee. It seems a better term for what they are doing is “deferring treatment” while effectively monitoring the cancer, rather than “delaying treatment.”

    Quote:
    While the conversation about the best treatment method seems to suck up most the air in the room the real issue is failing to screen and treat.

    … The treatment choices will work one way or another. They are tested, studied, and practised.
    I pretty much agree with you that screening is important, and if you include truly active surveillance in “treatment”, I agree that treatment is important too. However, I’m not as confident as you that treatments will always work one way of another. Though they have been tested, studied, and practiced, I am convinced that some treatments, and their supportive environments such as imaging and testing, work very well for some patients and badly for others because they are inappropriate to the case. I also am convinced that some doctors are very good at delivering the treatments while others are poor enough at it that they expose their patients to ineffective cancer control and a needlessly high burden of side effects. In short, all of this is important IMO.

    Finally, you wrote:
    Quote:
    What doesn't work is denial and delay. How quickly a man works his way in his head past this obstacle will determine his success with this disease.
    I agree as far as speed being important in some cases (mine), that denial is bad, and that taking an unjustifiable amount of time to assess and decide is unwise. (I was on Lupron within a week of diagnosis, which was wise with that first-ever PSA of 113.6 and a likely rapid doubling time, which later turned out, probably, to be between 3 and 4 months.) On the other hand, 20% of men in Dr. Laurence Klotz’s active surveillance group in Toronto have a PSA doubling time of a century or more! In my view, it is important to figure out or get good guidance on how much time you have to make your decision and then make your call in that timeframe. I am convinced it is even more important to get a treatment, and associated tests/scans, that are appropriate to the patient’s case. To me, rushing into a poorly chosen treatment is a big mistake. One of the reasons I spend so much time communicating with fellow patients is that I’m trying to help them avoid going off half-cocked, which unfortunately happens fairly often (and help them avoid denial and delay); they need to make wise choices, or be lucky enough to stumble on a medical team who will do that for them.

    Thanks for your thoughts. None of us are gods, and hopefully our exchanges of views will help people decide what is best for them.

    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 02-15-2020, 04:08 PM   #34
    skipper3
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    Re: Are Club Membership Cards Mailed?

    Thanks IADT. We need more informants like you, and less posters who remind me of the Church Lady on the old SNL skits.
    __________________
    Born 1947, 74 yrs old, 5'10", 180 lbs, active
    PSA- 12-2019 11.1
    Clinical- T1, 41gm gland
    Biopsy 1-27-20: Group III
    Gleason 7, 7 of 12 cores positive
    Right Side- One 4+3(40% G4) Two 3+4(8% G4 )Three 3+3, PNI in 1 G4 core
    Left Side- One 3+4(10% G4)
    SpaceOar procedure 3/2020
    CyberKnife treatment completed 4/23/20
    PSA-
    07/2020 = 4.2
    10/2020 = 3.2

     
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    Old 02-16-2020, 05:29 AM   #35
    Prostatefree
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    Re: Are Club Membership Cards Mailed?

    I'll add that often shared experiences are really opinions based in bias.

    If people simply shared what happened it's helpful. Mostly opinion has to be filtered because it is bias based on personal experience.

    The idea that waiting will aid in better treatment options is wishful thinking. The idea you can survive a little longer without treatment to get a better treatment is not a working strategy for cancer. At best such a strategy is delay collapsed into hope, not medicine.

     
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    Old 02-16-2020, 06:06 AM   #36
    skipper3
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    Re: Are Club Membership Cards Mailed?

    Quote:
    Originally Posted by Prostatefree View Post
    I'll add that often shared experiences are really opinions based in bias.

    If people simply shared what happened it's helpful. Mostly opinion has to be filtered because it is bias based on personal experience.

    The idea that waiting will aid in better treatment options is wishful thinking. The idea you can survive a little longer without treatment to get a better treatment is not a working strategy for cancer. Such a strategy is hope, not medicine.
    Sorry, I will wait a month to get experts' opinions on the best treatment path going forward, with the least long term impact, instead of the opinions of folks on an internet forum, or my "small town" urologist with scalpel in hand.

    My "PCa bible" is the Mark Scholz 2018 book. Who more or less says, the PCa industry in very large and booming. Every specialist is going to push their $pecialty. Picking the right doctor, and the right treatment, is well worth a month of consultations.

    A month? We are talking about prostate cancer cells, aren't we?
    __________________
    Born 1947, 74 yrs old, 5'10", 180 lbs, active
    PSA- 12-2019 11.1
    Clinical- T1, 41gm gland
    Biopsy 1-27-20: Group III
    Gleason 7, 7 of 12 cores positive
    Right Side- One 4+3(40% G4) Two 3+4(8% G4 )Three 3+3, PNI in 1 G4 core
    Left Side- One 3+4(10% G4)
    SpaceOar procedure 3/2020
    CyberKnife treatment completed 4/23/20
    PSA-
    07/2020 = 4.2
    10/2020 = 3.2

     
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    Old 02-16-2020, 12:23 PM   #37
    IADT3since2000
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    Re: Are Club Membership Cards Mailed?

    Quote:
    Originally Posted by skipper3 View Post
    ...My "PCa bible" is the Mark Scholz 2018 book. Who more or less says, the PCa industry in very large and booming. Every specialist is going to push their $pecialty. Picking the right doctor, and the right treatment, is well worth a month of consultations.

    A month? We are talking about prostate cancer cells, aren't we?
    You might also be interested in his earlier book, co-authored with the late Ralph Blum, "Invasion of the Prostate Snatchers: An Essential Guide to Managing Prostate Cancer for Patients and their Families," 2011. It is also excellent, but a lot has happened since then that is captured in the 2018 book.

    Jim

     
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    Old 02-16-2020, 12:40 PM   #38
    IADT3since2000
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    Re: Are Club Membership Cards Mailed?

    Quote:
    Originally Posted by Prostatefree View Post
    ... The idea that waiting will aid in better treatment options is wishful thinking. The idea you can survive a little longer without treatment to get a better treatment is not a working strategy for cancer. At best such a strategy is delay collapsed into hope, not medicine.
    I'm thinking that's true for the vast majority of us these days, at least as far as waiting for years beyond a reasonable time to try to select the best treatment for your own case. But that strategy absolutely worked for me, and it was based on carefully tracked, observed and interpreted medical research, not nebulous hope. I expect the strategy I used would also work today for a small proportion of the patients with challenging cases who are trying to "hold the fort" with current non-curative treatments until they get a better shot with an emerging treatment/assessment tool not yet available or approved, with Lutetium 177 PSMA being an example, and with another being a tactic of waiting a bit for PSA to rise to a point where detection of distant mets is likely with scans like Axumin PET/CT, C-11 acetate PET/CT, C-11 choline PET/CT, and Galium 68 PSMA PET/CT, the latter not yet approved. Another reason for waiting is to improve the odds of avoiding side effects, such as incontinence and sexual side effects after salvage radiation; the odds improve the longer the time between the surgery and the radiation. On the other hand, effectiveness against the recurrence is better if the PSA has not risen beyond a certain point, with research indicating that having radiation prior to a rise above 0.5 is a sound tactic providing superior effectiveness to radiation after a rise beyond 0.5.

    Some people believe in "Ready, Fire, Aim." A wiser maxim is "Ready, Aim, 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.




    Last edited by IADT3since2000; 02-16-2020 at 12:54 PM. Reason: Added line about salvage radiation.

     
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    Old 02-17-2020, 08:59 AM   #39
    Gary I
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    Re: Are Club Membership Cards Mailed?

    Quote:
    Originally Posted by IADT3since2000 View Post

    Some people believe in "Ready, Fire, Aim." A wiser maxim is "Ready, Aim, Fire."
    Only when you can see what your shooting at, Jim
    __________________
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    Second 3T MRI 1/17
    RALP 7/17, G3+4, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over next 4 months
    DCFPyl PET & ercMRI @NCI - 11/17
    One inch tumor still in prostate bed
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    SRT, 2ADT, IMGT 70.2 Gy, complete 5/18
    PSA 0.066 1/20, .059 6/20, .077 9/20, .099 11/20,.075 1/21 .079 4/21

     
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    Old 02-18-2020, 01:10 AM   #40
    Prostatefree
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    Re: Are Club Membership Cards Mailed?

    Quote:
    Originally Posted by IADT3since2000 View Post
    Replying to your recent post today:

    "ADT," which stands for Androgen Deprivation Therapy, is also known as hormonal therapy. There are a number of drugs and drug combinations that are considered ADT. The backbone, these days, is the drug Lupron, but there are excellent alternatives such as Zoladex, Viadur, Trelstar, etc. These drugs are all in what is known as the LHRH-agonist class. Another considerably stronger similar drug is Firmagon/degarelix, which is the sole drug in the LHRH-antagonist class. All of these drugs act to decrease the level of testosterone, produced by the testes.

    There are a number of drugs in another class that acts quite differently in that they do not decrease testosterone. These are known as antiandrogens, and the most common one that patients first use, unless they are already detectably (by old scans) metastatic, is known as Casodex/bicalutamide. Their main function is blocking the docking sites that serve as fuel ports on the cancer cells.

    A third class of drugs, known as 5-alpha reductase inhibitors (5-ARI), can also be considered under the ADT umbrella. These drugs are not FDA approved for prostate cancer, but they have been part of my own prostate cancer treatment, used "off label". Essentially, approved for BPH and hair restoration, they sharply decrease conversion of testosterone into DHT (dihydrotestosterone), which is far more potent than testosterone as a fuel for prostate cancer. They also shrink the prostate and reduce its blood supply in a desirable way.

    All of these drugs involve side effects that many of us experience to varying degrees, and patients should learn how to decrease these side effects.

    "TIP" stands for Testosterone Inactivating Pharmaceuticals, and actually means the same thing as ADT. To me the acronym TIP is awkward and not that great a fit for what it means. There is a backstory behind Dr. Sholz's use of TIP instead of ADT, but it is not interesting except for those of us into arcane details.

    Research has convincingly demonstrated that patients getting radiation for intermediate- and high-risk cases do a lot better if they are also on ADT surrounding the radiation. Research has also revealed that patients with high-risk cases do a lot better if they are on a long course of ADT, such as at least 18 months to two years, with some docs still wanting a three year course.

    All of the doctors I follow closely would consider ADT to be suitable for you right now, probably in conjunction with anticipated radiation.

    I hope this helps.

    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.
    There is only one medically sound path forward for the OP and it is treatment. Early detection early treatment is the path forward for treatable cancers. The fact all the bells and whistles have been going off and he hasn't done his homework is not a good sign.

    His delay will get no comfort from me. It's more dangerous than the cancer and he's not clear on this.

    He thinks he's doing his homework, but in truth it's busy work. The homework he hasn't done is the acceptance of his cancer.

    Based on your experience, I'd expect an advocate for early screening, not delayed treatment.

     
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    Old 02-18-2020, 04:49 AM   #41
    skipper3
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    Re: Are Club Membership Cards Mailed?

    Quote:
    Originally Posted by Prostatefree View Post
    There is only one medically sound path forward for the OP and it is treatment. Early detection early treatment is the path forward for treatable cancers. The fact all the bells and whistles have been going off and he hasn't done his homework is not a good sign.

    His delay will get no comfort from me. It's more dangerous than the cancer and he's not clear on this.

    He thinks he's doing his homework, but in truth it's busy work. The homework he hasn't done is the acceptance of his cancer.

    Based on your experience, I'd expect an advocate for early screening, not delayed treatment.
    Who are you referring to? If me, I just met on Monday with my Uro to discuss the results of the scans, just done last Thursday, and to get informed on the, just returned, 2nd opinion from Johns Hopkins that downgraded my cancer, and by doing that, downgraded my treatment recommendations. I don't know what part of the world you live in, but where I live, I can't barge into a hospital and demand treatment without a doctor's referral. Give it a rest! Don't reply to any more of my posts, if that will give you "comfort"!
    __________________
    Born 1947, 74 yrs old, 5'10", 180 lbs, active
    PSA- 12-2019 11.1
    Clinical- T1, 41gm gland
    Biopsy 1-27-20: Group III
    Gleason 7, 7 of 12 cores positive
    Right Side- One 4+3(40% G4) Two 3+4(8% G4 )Three 3+3, PNI in 1 G4 core
    Left Side- One 3+4(10% G4)
    SpaceOar procedure 3/2020
    CyberKnife treatment completed 4/23/20
    PSA-
    07/2020 = 4.2
    10/2020 = 3.2

     
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    Old 02-18-2020, 08:59 AM   #42
    IADT3since2000
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    Re: Are Club Membership Cards Mailed?

    Is Immediate Treatment the Only Sound Way Forward for All Patients? No!!!!!

    Hi Prostatefree (and Skipper3), I'm reply to your post of 7:49 am on February 18 (today). You wrote:

    Quote:
    Originally Posted by Prostatefree View Post
    There is only one medically sound path forward for the OP and it is treatment. Early detection early treatment is the path forward for treatable cancers. The fact all the bells and whistles have been going off and he hasn't done his homework is not a good sign.

    His delay will get no comfort from me. It's more dangerous than the cancer and he's not clear on this.

    He thinks he's doing his homework, but in truth it's busy work. The homework he hasn't done is the acceptance of his cancer.

    Based on your experience, I'd expect an advocate for early screening, not delayed treatment.
    My title is the bottom line, but here is my background, briefly, which is the basis for that bottom line:
    • Personal experience with once life-threatening prostate cancer, now a 20 year survivor;
    • Studying prostate cancer as a layman survivor for 20 years;
    • Subscriber to/diligent reader of several newsletters on prostate cancer for many years, including the Prostate Forum by Dr. Charles "Snuffy" Myers for a decade and a half;
    • Studying numerous books on prostate cancer over 20 years, especially including "A Primer on Prostate Cancer," Dr. Stephen Strum and Donna Pogliano (once the bible, now fairly obsolete), "Invasion of the Prostate Snatchers," Dr. Mark Scholz and Ralph Blum, "The Key to Prostate Cancer," Dr. Mark Scholz and 29 others, "Beating Prostate Cancer - Hormonal Therapy & Diet," Dr. Charles "Snuffy Myers," other books co-authored by Dr. Myers, books by various surgeons, and books by others;
    • Attending a half dozen conferences on prostate cancer in the series sponsored by PCRI, FCRE (two years) and Us Too, as well as studying the DVD recordings of a number of other conferences, most lately including those from 2016-2019 and part way through 2020;
    • Attending a number of other regional and local conferences on prostate cancer;
    • Learning from and participating in a number of Internet forums for 20 years;
    • Participating three years as a survivor representative (about 40 world wide) in the Scientist-Survivor Program sponsored by the American Association for Cancer Research;
    • Participating for three years as a voting survivor representative in prostate cancer research grant proposal reviews under the Congressional Designated Medical Research Program (CDMRP);
    • Attending two premier researcher/survivor grant reviewer conferences, both entitled "Innovative Minds in Prostate Cancer Today," sponsored by the CDMRP;
    • Giving public witness statements at 5 FDA hearings on prostate cancer, raising a question at another, and viewing a webcast of another;
    • Studying statistics and experimental design for about 225 undergraduate classroom hours, plus additional related graduate study/work, plus approximately an additional 360 hours of mathematics;
    • Spending a career that involved a lot of quantitative analysis, often in a contentious and uncertain R&D environment;
    • Serving as a founding board of directors member for a state prostate cancer coalition for a decade and a half;
    • Advocating for prostate cancer research funding on Capitol Hill several times;
    • Coordinating prostate cancer information booths for at least a half dozen years at Marine Corps Marathon and Half Marathon sponsored health and fitness expos;
    • Answering questions on prostate cancer at numerous health care booths;
    • Giving at least two presentations on prostate cancer as the speaker at auditorium type events;
    • and serving on the planning committee of a local Us Too prostate cancer education and support group from 2000 to the present, as well as attending the vast majority of monthly meetings.

    This education and experience enables me to be highly confident in encouraging prostate cancer patients and their loved ones to take time to make a sound choice of their management or treatment approach for prostate cancer, unless it is one of those infrequent cases, like mine, where some treatment should be initiated within a very short time. This education and experience enables me to see that urging patients to rush to treatment is likely to curtail their shot at a good or the best treatment for them, and that runs a substantial risk of inadequate cancer control and/or unnecessarily burdensome side effects.

    I am not saying that each of us has to have my kind of background to participate here. All we really need is to be involved with prostate cancer and honestly express our experience and views, as I believe you do. But I get skeptical when someone insists their view is the only right view. So, what are your credentials beyond your own case and the cases of your family members? You certainly have experience and views to share, and I have learned a point or two from what you have posted, but why do you think yours is the only correct position? Do you have extra credentials that would lend your views more credibility?

    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; 02-18-2020 at 02:13 PM. Reason: Typo

     
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    skipper3 (02-18-2020)
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