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    Old 04-18-2020, 08:26 AM   #16
    Insanus
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    Re: Hello, new member here.

    You know you have a small amount of G6. You donít know if there is a higher grade cancer that went sampled. You are also young.

    You have a great chance of a 100% cure. Donít pass it up.

     
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    Old 04-18-2020, 08:49 AM   #17
    ASAdvocate
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    Re: Hello, new member here.

    Quote:
    Originally Posted by Insanus View Post
    You know you have a small amount of G6. You donít know if there is a higher grade cancer that went sampled. You are also young.

    You have a great chance of a 100% cure. Donít pass it up.
    The purpose of active surveillance is to provide more extensive testing to minimize the chance that a higher grade cancer was missed. That is why all formal AS programs would schedule you for a 3T mp-MRI and a confirmatory targeted biopsy within the next year. What you donít want is to suffer the side effects of treatments that are unnecessary for indolent cancer.

     
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    Old 04-18-2020, 08:51 AM   #18
    Southsider170
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    Re: Hello, new member here.

    Quote:
    Originally Posted by Insanus View Post
    You know you have a small amount of G6. You donít know if there is a higher grade cancer that went sampled. You are also young.

    You have a great chance of a 100% cure. Donít pass it up.

    Actually, you really don't "know" that at all, at least not to a moral certainty. I would certainly suggest that the OP have a 2nd opinion on the pathology report to ascertain the cancer diagnosis, especially if they are going to pursue treatment.

    Reading pathology slides for prostate cancer can be tricky and is very specialized. A lot of fellows have sent their slides to Johns Hopkins in Baltimore.

     
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    Old 04-18-2020, 09:28 AM   #19
    guitarhillbilly
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    Re: Hello, new member here.

    DuginMT:

    Here is some basic info that might be helpful.


    https://www.cancer.org/cancer/prostate-cancer/treating/considering-options.html

     
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    Old 04-18-2020, 10:03 AM   #20
    DjinTonic
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    Re: Hello, new member here.

    Quote:
    Originally Posted by ASAdvocate View Post
    The purpose of active surveillance is to provide more extensive testing to minimize the chance that a higher grade cancer was missed. That is why all formal AS programs would schedule you for a 3T mp-MRI and a confirmatory targeted biopsy within the next year. What you donít want is to suffer the side effects of treatments that are unnecessary for indolent cancer.
    Finding a higher-grade lesion(s) is just one of a list of reasons men in AS programs are counselled to be treated.

    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.)Ö0.015 (1 yr. 6 mo.)Ö0.015 (2 yr. 4 mo.)

     
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    Old 04-18-2020, 12:40 PM   #21
    IADT3since2000
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    Re: Hello, new member here.

    Echoes from the past on doubting active surveillance

    Hi again DuginMT,

    As you can see, we are a passionate group and ready to help.

    Your thread has exploded with doubts about active surveillance for you coupled with encouragement of treatment. ASAdvocate, who knows active surveillance thorougly, has provided further encouragement of active surveillance, and I urge you to take it to heart. Many of us who have had surgery were treated by doctors before the mound of highly consistent and credible support for active surveillance, answering all the doubts, became inescapably large and compelling. Maybe you will ultimately decide on treatment, but you owe it to yourself to get a thorough understanding of the safety and effectiveness of active surveillance in the context of understanding other options, particularly their likely and possible side effects. Those of us on this Board who have had treatment, either radiation or surgery, have mostly had good experiences, at least once we were past the expected and very common short-term inconveniences and challenges of short-term side effects. However, many men, particularly those undergoing surgery, find themselves facing a much tougher course, and you can review their situations if you search for them on the Board.

    You can put US taxpayer dollars at work for you by using www.pubmed.gov, an agency of the US National Library of Medicine, to check research published on active surveillance. If you enter this search - prostate cancer AND active surveillance , you will get a list of 3,575 published medical research papers that at least mention active surveillance. If you add - AND klotz l [au] - to that search string, you will see a list of 116 papers with author/co-author Dr. Laurence Klotz, MD, a prominent, world-class urologist practicing in Toronto, Canada. He is arguably the world's leading expert on AS, though he has competition, such as from Johns Hopkins' H. Ballentine Carter whom ASAdvocate knows, and a number of others. (You can also use PubMed to check on other therapies, such as with the string - prostate cancer AND radical prostatectomy AND incontinence , which today yielded 1,811 results.)

    Good luck in sorting this out.

    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 04-18-2020, 06:17 PM   #22
    DuginMT
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    Re: Hello, new member here.

    Thanks all. My prostate is not enlarged, estimated from ultrasound to be only 20 cc. My oldest brother, at 73, has BPH but no cancer. My other brother, at 69, has no prostate issues that he knows of. My maternal grandfather died at 88 from natural causes, but carried PC. The other grandpa made it to 94 with no known PC. My dad passed at 73 with Alzheimer's, and suspected lung cancer (lifelong smoker), although he was never tested for that. I do not take testosterone supplements. I'm encouraged by the many treatments for PC, and by the fact that mine was caught early. Also, I live in the healthcare center of MT and the VA will send me anywhere needed. Hopefully in August, when my 2nd biopsy results come back, I will be able to make a very well-informed choice on AS or treatment type. Have the book, "The Key to Prostate Cancer" on order. Thanks again!

     
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    Old 04-18-2020, 08:54 PM   #23
    DuginMT
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    Re: Hello, new member here.

    I have been particularly interested in the progress demonstrated in treating low grade patients with 5000 iu/day of vitamin D3. Their tumors actually shrank on average.

    Vitamin D Trial: Effectiveness Safety Recommendations
    https://youtu.be/QResults of a Prostate CancerrU1yrmNIqc

     
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    Old 04-19-2020, 05:23 AM   #24
    Prostatefree
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    Re: Hello, new member here.

    Quote:
    Originally Posted by DuginMT View Post
    Thanks all. My prostate is not enlarged, estimated from ultrasound to be only 20 cc. My oldest brother, at 73, has BPH but no cancer. My other brother, at 69, has no prostate issues that he knows of. My maternal grandfather died at 88 from natural causes, but carried PC. The other grandpa made it to 94 with no known PC. My dad passed at 73 with Alzheimer's, and suspected lung cancer (lifelong smoker), although he was never tested for that. I do not take testosterone supplements. I'm encouraged by the many treatments for PC, and by the fact that mine was caught early. Also, I live in the healthcare center of MT and the VA will send me anywhere needed. Hopefully in August, when my 2nd biopsy results come back, I will be able to make a very well-informed choice on AS or treatment type. Have the book, "The Key to Prostate Cancer" on order. Thanks again!
    Do not hope. Do.

    If you have access to better healthcare, do it now.

    Starting an AS program is excellent! Starting one you "hope" to transfer to another institution later does not understand how health systems work. If you're doing it for higher quality care it begins at the beginning.

    At this point, a cancer center will redo your initial biopsy. Go there a year from now and you've lost a year with two biopsies, not just one, performed by someone maybe less than expert. Also, in an excellent AS program a 3T MRI fused with software to visually direct the next biopsy is performed before the second biopsy. It is an experienced and skilled service being used for prostate cancer diagnosis coordinated with a team of cancer specialists (surgeon and radiologist) dedicated exclusively to PCa and you, and not available as such where you are now.

    Enroll yourself now in a cancer center of excellence AS program. Waiting and holding off for a "better time" is now a red warning flag of denial and delay. Upgrading your care begins now. The wait and see period is over. Your cancer is confirmed. Now the questions are what is it, how much, and where. Because of your early detection a single biopsy doesn't tell the whole story. You now have the responsibility of managing your care and continuing to detect the full extent of the cancer and it's growth.

    Take time to consider this. An immediate decision about what to do next is a temptation. Resist it. What you are looking for now is every opportunity to up your game. It begins with your health team. Remember, this is a marathon. You are now looking for the best AS program and PCa treatment services available to you.

    Now. Not next year. Put it in place now. Now is when you need it most. Treatment is straight forward. Detection is where the primary risk resides.

    The small prostate is a good sign. It makes biopsies more effective because they are sampling less area. It makes your PSA more valuable as a more accurate indicator of the cancer growth because it's not inflated by BPH. Stop the anti inflammatory supplements and get your real PSA back. You and your doctors will need it during the next few years.

    Regarding the use of supplements to affect a false drop in PSA, this cancer is set in place long before now. You can not cure it with diet now. You can improve your general health and immunity with diet and exercise, but you can not cure the cancer. You can possibly affect/slow the growth of low grade G6 with some treatments including some prostate drugs with a mild hormone affect. Most G6 will not kill you unless the prostate becomes so large it threatens urinary function. An enlarged prostate will eventually cause ED with or without cancer.

    Your family history is important. You are now in a higher risk group for eventual treatment. All the more important you get your team in place who will be providing your treatment to also monitor your AS.

    PS: don't be put off by my persistent style. It's intentional. I want you to be your best healthcare advocate. You will get the best results from your care providers if they experience it first in you. You up your game and they will follow. Your best calls forth the best in others.

     
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    Old 04-19-2020, 06:08 AM   #25
    IceStationZebra
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    Re: Hello, new member here.

    Quote:
    Originally Posted by Prostatefree View Post
    Do not hope. Do.

    If you have access to better healthcare, do it now.

    Starting an AS program is excellent! Starting one you "hope" to transfer to another institution later does not understand how health systems work. If you're doing it for higher quality care it begins at the beginning.

    At this point, a cancer center will redo your initial biopsy. Go there a year from now and you've lost a year with two biopsies, not just one, performed by someone maybe less than expert. Also, in an excellent AS program a 3T MRI fused with software to visually direct the next biopsy is performed before the second biopsy. An experienced and skilled service being used for prostate cancer diagnosis coordinated with a team of cancer specialists (surgeon and radiologist) dedicated exclusively to PCa and you, and not available awhere you are now.

    Enroll yourself now in a cancer center of excellence AS program. Waiting and holding off for a "better time" is now a red warning flag of denial and delay. Upgrading your care begins now. The wait and see period is over. Your cancer is confirmed. Now the questions are what is it, how much, and where?

    Take time to consider this. An immediate decision about what to do next is a temptation. Resist it. What you are looking for now is every opportunity to up your game. It begins with your health team. Remember, this is a marathon. You are now looking for the best AS program and PCa treatment services available to you.

    Now. Not next year.

    PS: the small prostate is a good sign. It makes biopsies more effective because they are sampling less area. It makes your PSA more valuable as a more accurate indicator of the cancer growth because it's no affected by BPH. Stop the anti inflammatory supplements and get your real PSA back. You and your doctors will need it.

    Your family history is important. You are now in a higher risk group for eventual treatment. All the more important you get your team in place who will be providing your treatment to monitor your AS.
    I agree with everything he said.

    Your choice in doctors makes an incredible difference. My first doctor--after the clean biopsy--wanted to put me on a 12 month rotation. Had I stayed with him, I might still not be diagnosed. I switched to a different doctor in the same practice (because I was told I didn't have cancer and the new doc was 5 minutes from my house. He was also my Dad's doctor). This new doc hoped the first doc was right and that all I had was bph but ordered the 4k test and based on that result a 3t MRI. Through those, just like ProstateFree said, they found more cancer. I had problems because that doc refused to do the 6 month confirmatory biopsy under sedation (their surgery center was out of network and he apparently didn't get a big enough cut from doing it at the hospital). Plus he was a complete and total ahole. So I switched to the surgeon who ultimately did my surgery. He did the biopsy under sedation and found multiple cores of G6 with much larger percentages of each core (it wasn't a fusion biopsy, so he must have just been very good because he hit the tumors exactly). I've said all this to completely agree with going to a cancer center. You need to be with those who are the experts in the field because there are a lot of unknowns to pca, don't let your doctor be one of them.

    And definitely stop the supplements. You're probably already artificially decreasing your PSA which could lead a doctor in a wrong direction. Stop them now.

    Hang in there, this is a marathon not a race. Don't rest on the fact you only have a small bit of G6 because--like me and others--that wasn't the case. Proceed as if there is more high grade cancer there and be aggressive with a real AS program in your efforts to fund it. Maybe all you really have is G6. Best of luck friend.

     
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    Old 04-19-2020, 08:18 AM   #26
    Insanus
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    Re: Hello, new member here.

    Quote:
    Originally Posted by ASAdvocate View Post
    The purpose of active surveillance is to provide more extensive testing to minimize the chance that a higher grade cancer was missed. That is why all formal AS programs would schedule you for a 3T mp-MRI and a confirmatory targeted biopsy within the next year. What you donít want is to suffer the side effects of treatments that are unnecessary for indolent cancer.
    Advocate all you want, but on the various forums there are plenty of stories of ďI 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%.

     
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    Old 04-19-2020, 09:41 AM   #27
    ASAdvocate
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    Re: Hello, new member here.

    Quote:
    Originally Posted by Insanus View Post
    Advocate all you want, but on the various forums there are plenty of stories of ďI 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%.
    Gleason 6 does not morph into Gleason 9. Either the G9 was there from the diagnosis, but missed on the biopsy, or emerged later. In both cases, AS testing almost always finds the higher cancer in time for interventional treatment. There has been no significant mortality difference for men in the JH and MSKCC programs who started AS, and later had treatment, versus those men who chose immediate treatment.

    Let me guess, you had surgery, right?

    I say that because I have never had anybody except surgery guys question the value of AS. That's from hundreds of challenges across many sites and years. Some surgery guys really get set off at the mention of AS. Not sure why.
    __________________
    In Active Surveillance program at Johns Hopkins since July 2009.

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

     
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    Old 04-19-2020, 10:06 AM   #28
    Insanus
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    Re: Hello, new member here.

    I donít get upset over AS. 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.

     
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    Old 04-19-2020, 11:26 AM   #29
    DjinTonic
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    Re: Hello, new member here.

    Quote:
    Originally Posted by ASAdvocate View Post
    Gleason 6 does not morph into Gleason 9. Either the G9 was there from the diagnosis, but missed on the biopsy, or emerged later. In both cases, AS testing almost always finds the higher cancer in time for interventional treatment. There has been no significant mortality difference for men in the JH and MSKCC programs who started AS, and later had treatment, versus those men who chose immediate treatment.
    ...
    "Progression" may occur by different mechanisms in PCa. From what I have read, lesions >G6 can arise by three mechanisms:

    1. New lesions >6 can arise elsewhere from precursor-cells. These have no relation to existing G6 lesions.

    2. Cancer cells growing from G6 lesions can mutate and spin off clones with a higher G score. It is though that PCa may spread in the prostate by means of "tendrils" that grow out from a lesion(s).

    and there is now evidence of

    3. It appears G6 lesions themselves can progress in some cases:

    MOLECULAR DISSECTION OF GRADE PROGRESSION IN MEN ON ACTIVE SURVEILLANCE FOR PROSTATE CANCER (2020)

    https://www.auajournals.org/doi/abs/10.1097/JU.0000000000000829.08

    "CONCLUSIONS:
    Resampling of the same clonal focus of prostate cancer over time suggests that GG1 disease may undergo grade progression in some cases. Molecular alterations including somatic mutations, copy number alterations, derived genomic classifiers, and single gene expression markers measured on initial biopsy tissue, however, did not predict grade progression. More work is needed to uncover the molecular drivers of grade progression in men with low-grade prostate cancer."

    My advice is that anyone seriously considering AS have a genomics test run on their biopsied tissue. It provides your risk of currently harboring clinically significant lesions -- G7 (4+3) or higher -- as well as the risk of future metastases from such lesions. Approx. 10% of men with RP-confirmed confined G6 (3+3) test high-risk with Decipher. I would be hesitant even if the test returned intermediate risk.

    [Emphasis mine]

    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.)Ö0.015 (1 yr. 6 mo.)Ö0.015 (2 yr. 4 mo.)

     
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    Old 04-19-2020, 01:44 PM   #30
    DuginMT
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    Re: Hello, new member here.

    Thanks for all of the good information, I'm learning a lot. I suspect I will need treatment eventually. I am basically on AS right now, with another biopsy and possible MRI coming up in August. Next PSA test will be in May. In regards to supplements, I don't take a whole lot, but have already seen improvement in my blood pressure (lowering) and shoulder pain lessening from a car accident. Since upping my Vitamin D3, my hair and nail growth increased significantly, therefore I think I had been defficient. I live in a northern clime and we bundle up a lot, and most of my life is indoors. Vitamin D3 has been shown to act against PC. Reference Dr. Bruce W. Hollis's work/******* video "Results of a Prostate Cancer/Vitamin D3 Trial: Effectiveness, Safety, Recommendations". Vitamin D3 did not impact PSA levels (which was their original objective to determine), but resulted in a decrease in positive PC cores in over 50% of the guys studied for one year. Therefore, I don't plan to stop this particular supplement anytime soon. It's now prescribed for many PC patients. In my view, it can't hurt at reasonable dosages, less than 10000 iu/day.
    Anybody else taking it, experiences or thoughts on Dr. Hollis's work?

     
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