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    Old 04-19-2020, 08:43 PM   #31
    Southsider170
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    Re: Hello, new member here.

    Quote:
    Originally Posted by DuginMT View Post
    Thanks for all of the good information, I'm learning a lot. I suspect I will need treatment eventually.

    Not necessarily. A lot of men go for long periods of time without needing treatment. Its been more than 6 years since I was diagnosed and no treatment for PC.

    As far as your supplements, you should be fine if you make sure that you tell your doctor about it. It is something that may need to be figured when he's interpreting your PSA scores. Remember PSA isn't specific to cancer, reducing your PSA score isn't equal to reducing the amount of cancer.

     
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    Old 04-20-2020, 05:17 AM   #32
    Prostatefree
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    Re: Hello, new member here.

    D3 is good for a lot of things. It will not cure cancer.

    I'm glad your fingernails and shoulder pain are improved. I'd choose monitoring my cancer as a higher priority than my fingernails and shoulder pain.

    Cancer will find a way. A D3 vitamin is no match for cancer.

    You're officially in the weeds. That didn't take long. Add to that turning down an offer from the VA to upgrade your care. People fought hard for you to have the option of accessing private (better) healthcare.

    You're beginning to discover managing prostate cancer is more a head game than medicine for most men. The science is clear as are the protocols for dealing with it. The head game, not so much.

    How do I know? I did what you are now doing. Now I use D3 occassionaly and moderately. I also have my vitamin D levels tested. Simple annual blood test. I'm not guessing and relying on anecdotal evidence. I'm also using healthful living practises to manage my levels. Mega-dosing supplements is a road to ruin for your liver and kidneys (easy). Healthy living is a balance (hard).

    Doing what you are doing because you "think" it will help doesn't make it so.

     
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    Old 04-20-2020, 05:32 AM   #33
    IADT3since2000
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    Re: Hello, new member here.

    Insanus, you are operating from your own thoughts and not on the basis of an abundance of highly credible, consistent and convincing research conducted by leading centers all over the world over the past 24 years. In short, your comments below are obsolete and misleading. You need to review the science. You wrote:

    Quote:
    Originally Posted by Insanus View Post
    Advocate all you want, but on the various forums there are plenty of stories of “I was on AS with a G6, biopsy now G9, stage 3. The ability to have an erection while in hospice is silly and the % of younger men doing AS that will need treatment is >50%.
    As too many of us who attend support group meetings know, most unfortunately some patients feel they can just sit back and neglect essential, vital monitoring and claim they are on active surveillance. That is denial, not active surveillance! Sometimes they develop aggressive cancer over a long period of growth that proper monitoring would have caught in a timely manner. I strongly suspect that is what you are reading.

    Quote:
    Originally Posted by Insanus View Post
    I do believe AS is inappropriate for younger patients who will live a long time. Yea, if you are 70 AS may be an option.

    The age range appropriate for active surveillance was a big issue a decade or so ago (not now; no longer). Many leaders were favoring AS for men over 65, or 60, or at least 55. At a medical research conference, as a survivor representative I attended a plenary session that featured several leading active surveillance experts on a panel. I asked an audience question to the panel what their age threshold was for considering active surveillance. Several gave the ages just listed. Then Dr. Laurence Klotz, MD, the revered leader of the long-running, large group in Toronto answered that active surveillance should be considered for a man of ANY age! Well, you could have heard a pin drop. But after a few years Dr. Klotz’s position became the norm because research so convincingly supported that.. Yes, a younger man may need therapy later, but with AS he has gained years of avoiding the side effects of therapy at a time in life when avoiding those side effects, especially sexual side effects, is so important. He also gains years in which technology progresses. And finally, he has a good shot of not needing treatment at all for the rest of his life.


    What is your source for your statement that “and the % of younger men doing AS that will need treatment is >50%”? I don’t recall seeing that anywhere, but it would be interesting to see the trend in those percentages as AS technology and confidence in AS have steadily improved. If your figure of >50% is from a decade ago, I would not be surprised at all.


    Check the science!

    ….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 04-20-2020, 05:49 AM   #34
    Prostatefree
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    Re: Hello, new member here.

    I will add, if we achieved early detection universally then everyone would begin in AS. That is a worthy goal and the future, imo.

    And, a self directed program is not an AS program. Accountability requires an objective observer. The patient is not an objective observer.

     
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    Old 04-20-2020, 06:00 AM   #35
    DjinTonic
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    Re: Hello, new member here.

    Quote:
    Originally Posted by Prostatefree View Post
    I will add, if we achieved early detection universally then everyone would begin in AS. That is a worthy goal, imo.
    Not everyone starts out with (only) G6 lesions. I was regularly biopsied many times with nothing found, until my final biopsy with just 2/14 cores positive, one a G10 and one a G9. My final path was G9 (4+5). Pathologists don't bother adding "tertiary 3" when you are a 9 or 10, but given that my tumor load was just 10%, I don't believe there was any or much pattern 3 around anyway.

    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, neg. 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
    11-10-17 Decipher 0.37 Low Risk; 5-yr met risk 2.4%, 10-yr PCa mortality 3.3%
    LabCorp uPSA: 0.010 (3 mo.)…0.015 (1 yr. 6 mo.)…0.015 (2 yr. 4 mo.)

     
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    Old 04-20-2020, 06:05 AM   #36
    Prostatefree
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    Re: Hello, new member here.

    Quote:
    Originally Posted by DjinTonic View Post
    Not everyone starts out with (only) G6 lesions. I was regularly biopsied many times with nothing found, until my final biopsy with just 2/14 cores positive, one a G10 and one a G9. My final path was G9 (4+5). Pathologists don't bother adding "tertiary 3" when you are a 9 or 10, but given that my tumor load was just 10%, I don't believe there was any or much pattern 3 around anyway.

    Djin
    I agree. Some could jump forward without confirmation of an initial biopsy. However, yours is a case of AS, imo.

    The rules are still in development. For example, AS morphs into the standard detection and treatment protocols for PCa. Every man begins AS with annual PSA testing and symptom/ history surveys at 50.

     
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    Old 04-20-2020, 06:37 AM   #37
    DjinTonic
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    Re: Hello, new member here.

    Quote:
    Originally Posted by Prostatefree View Post
    I agree. Some could jump forward without confirmation of an initial biopsy. However, yours is a case of AS, imo.

    The rules are still in development. For example, AS morphs into the standard detection and treatment protocols for PCa. Every man begins AS with annual PSA testing and symptom/ history surveys at 50.
    Then we just disagree on definitions. I think we should reserve the term AS for surveilling someone diagnosed with PCa who does not necessarily need treatment. What I had, 9n account of BPH, was vigilant monitoring and screening to catch PCa should it arise. Finally, there is watchful waiting, where, for example, advanced age obviates the need to treat PCa that would be treated inva younger patient.

    Djin

     
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    Old 04-20-2020, 08:59 AM   #38
    DuginMT
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    Re: Hello, new member here.

    Just want to make clear that I don't care about how fast my hair and nails grow! Only pointed it out as a possible sign that I may had been Vitamin D3 deficient. Also, I will not be scheduling any major treatment with the VA. They don't do that here. I would be referred by the VA to the Frontier Cancer Center here or any other place needed. I am grateful to the VA for the excellent doctors that diagnosed my condition and advise me in general health matters. They are good and caring, and I agree with them most of the time. If my sister would not have convinced me to get annual check-ups through the VA 6 years ago, I would still be completely in the dark. Thanks again for the info, much of which is still new to me.

     
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    Old 04-20-2020, 10:44 AM   #39
    Prostatefree
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    Re: Hello, new member here.

    My preference is to stop using the term watchful waiting.

    What then is the difference between screening and active surveillance? Confirmed cancer? Then it is Active Cancer Surveillance, ACS.

    Men are given way too much wiggle room in deference to their "comfort" level with the language.

    For most men, the temptation to choose active surveillance is really a denial and delay ploy to kick the concern down the road. Active Cancer Surveillance reminds them the game they are in. Yet, everyone wants it both ways.
    __________________
    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;
    6-30-20 PSA less than 0.02, zero club 4 yrs

     
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    Old 04-20-2020, 11:29 AM   #40
    Prostatefree
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    Re: Hello, new member here.

    Good to hear about the VA. Thank them and move on.

    Low Vitamin D is an risk indicator for more aggressive cancer. So, there's that if you're going to play the D card. Reversing the low D will not reverse the cancer. That switch has already been turned on. Family history is also a higher risk category along with many others including obesity yet loosing weight will not cure cancer.

    Seeking treatment is the last thing you do in this game. If you're going to tee it up for the best possible outcome for yourself what you do next is the most important choice you now have.

    I still recommend an AS program professionally operated by a cancer center of excellence. Why wouldn't you?
    __________________
    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;
    6-30-20 PSA less than 0.02, zero club 4 yrs

     
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    Old 04-20-2020, 01:03 PM   #41
    DjinTonic
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    Re: Hello, new member here.

    Quote:
    Originally Posted by Prostatefree View Post
    My preference is to stop using the term watchful waiting.

    What then is the difference between screening and active surveillance? Confirmed cancer? Then it is Active Cancer Surveillance, ACS.

    Men are given way too much wiggle room in deference to their "comfort" level with the language.

    For most men, the temptation to choose active surveillance is really a denial and delay ploy to kick the concern down the road. Active Cancer Surveillance reminds them the game they are in. Yet, everyone wants it both ways.
    Screening and Active Surveillance: the end point of screening is a PCa diagnosis. There are tests that are done in both, test done only in Screening, and tests done only in AS.

    If you have doc with an MD, you can't do AS if you don't qualify -- otherwise, if you are not very old, it's called denial. You can call it AS, but your doc knows it's not.

    If you don't have many years left to live for whatever other reason(s), a diagnosis of low or intermediate risk PCa might trigger Watchful Waiting. Unless your disease progresses, you may go treatment-free. Otherwise you might get ADT if you progress and have mets.

    These terms are entrenched in the medical literature: you can I can't change them, and IMO it would be silly to swim against the current.

    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, neg. 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
    11-10-17 Decipher 0.37 Low Risk; 5-yr met risk 2.4%, 10-yr PCa mortality 3.3%
    LabCorp uPSA: 0.010 (3 mo.)…0.015 (1 yr. 6 mo.)…0.015 (2 yr. 4 mo.)

     
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    Old 04-20-2020, 01:49 PM   #42
    IADT3since2000
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    Re: Hello, new member here.

    Quote:
    Originally Posted by DuginMT View Post
    ...I am grateful to the VA for the excellent doctors that diagnosed my condition and advise me in general health matters. They are good and caring, and I agree with them most of the time. If my sister would not have convinced me to get annual check-ups through the VA 6 years ago, I would still be completely in the dark. ...
    Dr. Donald Gleason, who created the assessment system that yields the "Gleason score" in 1974, was a VA doctor.

    Jim

     
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    Old 04-20-2020, 01:53 PM   #43
    IADT3since2000
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    Re: Hello, new member here.

    Quote:
    Originally Posted by Prostatefree View Post
    .... Every man begins AS with annual PSA testing and symptom/ history surveys at 50.
    I'm not sure exactly what you meant here, but some men have metastatic prostate cancer in their forties and even in their thirties. (Source: comments by Dr. Charles "Snuffy" Myers, MD)

    Jim

     
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    Old 04-20-2020, 07:09 PM   #44
    Southsider170
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    Re: Hello, new member here.

    Quote:
    Originally Posted by Prostatefree View Post
    My preference is to stop using the term watchful waiting.

    What then is the difference between screening and active surveillance? Confirmed cancer? Then it is Active Cancer Surveillance, ACS.

    Men are given way too much wiggle room in deference to their "comfort" level with the language.

    For most men, the temptation to choose active surveillance is really a denial and delay ploy to kick the concern down the road. Active Cancer Surveillance reminds them the game they are in. Yet, everyone wants it both ways.
    "Watchful Waiting" applies to men that have been diagnosed with prostate cancer but have no intention, usually due to age and/or co-morbidities, of treating the disease until and if it causes symptoms.

    "Screening" is just a PSA test and DRE by a PCP which will either result in a referral to a urologist or not. Just like other screens that a PCP may do that can cause a referral to a gastroenterologist, a dermatologist or other specialist.

    The patient can make the appointment with the specialist or not, but the screening is done when its done.

    Neither is really the same as Active Surveillance.

     
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    Old 04-20-2020, 08:03 PM   #45
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    Re: Hello, new member here.

    Quote:
    Originally Posted by Southsider170 View Post
    "Watchful Waiting" applies to men that have been diagnosed with prostate cancer but have no intention, usually due to age and/or co-morbidities, of treating the disease until and if it causes symptoms.

    "Screening" is just a PSA test and DRE by a PCP which will either result in a referral to a urologist or not. Just like other screens that a PCP may do that can cause a referral to a gastroenterologist, a dermatologist or other specialist.

    The patient can make the appointment with the specialist or not, but the screening is done when its done.

    Neither is really the same as Active Surveillance.
    Active Surveillance, as coined by Bal Carter and also Laurence Klotz in the 1990’s had a specific application then for men with diagnosed PCa who were being monitored while deferring radical treatment.

    Now, I am seeing the term used for multiple phases of prostate cancer ( and other cancers). Men who have had primary treatment are calling their future testing “active surveillance”. I fear that the term is becoming generic, and, unlike Coca-Cola, there is no patent and army of lawyers to fight that from happening.

    We may have to refer to specific centers’ programs, in order to clarify our usage.

     
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