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    Old 04-16-2020, 07:40 PM   #1
    DuginMT
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    Hello, new member here.

    Hello all. I was diagnosed with Gleason 6 PC last September. 1/12 cores had 2% adenocarcinoma, in the right base. My VA urologist recommends RP, he was a surgeon himself. He says he would not recommend radiation at my age (56) because of possible long-term complications. He says I can take my time in deciding. There is a Cyber knife with a good radiation doc in my city, and I am currently leaning towards that should I decide on aggressive treatment. Since my diagnosis, I have been taking supplements: Tumeric/Curcumin with Ginger, Vitamin D3, Lycopene, Essiac, Grape Seed Extract, and low dose aspirin. Also lots of garlic, broccoli, fish and tomatoes. My PSA is trending down, from 5.O to 3.5, and I expect the next one to be around 3.0. I read on Urologyweb.com that Gleason 6 PC is not a cancer that should be treated, but just watched. I plan to keep taking the supplements and seek treatment if PSA rises above
    6 or if I feel any symptoms, which I have not, so far. My VA doc feels that supplements won't knock it out, and is probably right. Thanks for any feedback.

     
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    Old 04-17-2020, 05:04 AM   #2
    ASAdvocate
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    Re: Hello, new member here.

    All the medical associations that issue guidelines for the treatment of prostate cancer recommend active surveillance for low risk men. Every one of them.

    I have been on AS for over ten years with no progression. Why risk the possibly life-changing side effects of treatment if you don’t need it?

    But, surveillance must be active, and that means following a regular testing protocol.

    I recommend that you buy Dr. Mark Scholz’ new book The Key to Prostate Cancer. The book clearly explains how your biopsy report can be understood in terms of risk categories, to which he devotes separate chapters. Scholz interviewed 30 prostate cancer experts and presents their descriptions of the treatments that they provide for men in those different risk categories.

     
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    Old 04-17-2020, 05:37 AM   #3
    IADT3since2000
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    Re: Hello, new member here.

    Hi DuginMT and welcome to the Board!

    I see it the same way ASAdvocate does. He really knows this territory because he has lived it.

    Twenty years ago, very few doctors thought active surveillance would work and most believed it to be dangerous. Now, with tons of extraordinarily consistent research from a number of major centers proving active surveillance is safe and highly effective, it is the accepted course, except by some docs who have not kept up or who put making a buck above their patient's welfare.

    Good luck,

    ….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 04-17-2020, 06:11 AM   #4
    Southsider170
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    Re: Hello, new member here.

    Quote:
    Originally Posted by DuginMT View Post
    Hello all. I was diagnosed with Gleason 6 PC last September. 1/12 cores had 2% adenocarcinoma, in the right base. My VA urologist recommends RP, he was a surgeon himself. He says he would not recommend radiation at my age (56) because of possible long-term complications. He says I can take my time in deciding.

    I have a similar situation to yourself. I was positive in one core during my January 2014 biopsy with Gleason 6, and the first specialist I consulted recommended surgery- I was 58 at the time.

    A second opinion was active surveillance and that's what I went with.

    The key is to make sure that you are really a Gleason 6. Biopsies aren't quite "stabbing in the dark" as they are guided by ultrasound. But it isn't infallible and there is a fairly high percentage of false negatives. Something a little bit more risky could be hiding in your prostate.

    If you go for surveillance, you will definitely want a followup 2nd biopsy early in 2021 and regular PSA tests, make sure that you are appropriately classified. The problem isn't so much is Gleason 6 cancer progressing, but in other , higher grade, cancer being missed in a biopsy

     
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    Old 04-17-2020, 07:21 AM   #5
    DuginMT
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    Re: Hello, new member here.

    Thanks all. I do have another biopsy scheduled this August. Wondering how many on AS start thinking, "this is too much hassle, might as well just get it out/zapped". But as long as symptoms seem minor, AS seems worth it to me. Will read that recommended book, thanks!

     
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    Old 04-17-2020, 08:09 AM   #6
    Terry G
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    Re: Hello, new member here.

    Hi Dugan,
    I’m glad you found this forum and welcome. The very best thing you can be doing right now is getting yourself informed about this disease and this forum is a good start. The worse thing you can do is make an uninformed decision on the next step.

    You’re a young guy with with a biopsy showing a small amount of very low risk prostate cancer. To jump into surgery at this point could be a huge mistake with resulting side effects that can be life changing. Unless you have other urinary issues such as BPH surgery offers no better outcome than any of a number of radiation treatments. Yes radiation treatments can have side effects; however, they are extremely small and much smaller than those associated with surgery.

    As others have said, you appear to be a very good candidate for AS. If you do elect treatment please explore all of the options and make an informed choice. Keep asking asking questions and keep posting.
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3

     
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    Old 04-17-2020, 11:51 AM   #7
    guitarhillbilly
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    Re: Hello, new member here.

    Reading the info that you posted I personally Would NOT do surgery or RT at this time. As several folks have suggested with your stated lab report AS would be my first choice. You can always treat later if needed.

    Don't be fooled by the decreasing PSA which can give false hope. I know about the PSA roller coaster and then wind up with 6.9 PSA and a Gleason Score of 8 - T2a. I rode the PSA roller coaster for 4 years before my biopsy and diagnosis.

    My 4 year Ride: 2.3 / 4.7 / 3.5 / 4.3 / 4.8 / 5.7 / 5.3 / 6.9 [biopsy]
    I was tested more than once a year during this time.

     
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    Old 04-17-2020, 12:25 PM   #8
    DuginMT
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    Re: Hello, new member here.

    Quote:
    Originally Posted by guitarhillbilly View Post
    Reading the info that you posted I personally Would NOT do surgery or RT at this time. As several folks have suggested with your stated lab report AS would be my first choice. You can always treat later if needed.

    Don't be fooled by the decreasing PSA which can give false hope. I know about the PSA roller coaster and then wind up with 6.9 PSA and a Gleason Score of 8 - T2a. I rode the PSA roller coaster for 4 years before my biopsy and diagnosis.

    My 4 year Ride: 2.3 / 4.7 / 3.5 / 4.3 / 4.8 / 5.7 / 5.3 / 6.9 [biopsy]
    I was tested more than once a year during this time.
    Thanks, GH, did you decide on treatment, or are you on AS still? Also, have you heard of anyone testing positive, changing lifestyle (but getting no radical treatment), and then never testing positive again? My urologist also said, "I will never have less cancer without treatment, unless touched by the hand of God." I guess what I am mainly wondering, if lifestyle factors result in cancer formation, can the cancer be killed off with a change of lifestyle (diet, exercise, supplements, etc.).?

     
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    Old 04-17-2020, 03:59 PM   #9
    IceStationZebra
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    Re: Hello, new member here.

    Welcome to a club you don't want to ever be in.

    I'm going to be the lone dissenting voice here because my walk is atypical and you at least need to know there are atypical cases.

    My initial biopsy was 12/12 clean, nothing but benign tissue. A year later I had a very similar result as yours, one core around 2-3% of G6 3+3. Six months later with a different doctor, he found more cores with larger % of G6. At that point, I was like "what to do now?".

    Some said to use AS. But honestly, I was sick of being poked and prodded and never wanted another biopsy. So I opted for surgery and am happy I did.

    I had a small 3mm margin where the cancer just touched the margin in the right base. Thankfully only G6 was found and it was around 3-5% of total tissue. Had I opted for AS, it would have definitely escaped at some point.

    Now in all honesty would G6 cancer escaping the prostate cause any issue? I dont know. I really don't know if that cancer would have contined to grow outside the prostate and become more aggressive or if it would have invaded other areas as who cares G6.

    I will say that all my tests indictated prostate confinement so we were all surprised to find that not exactly so.

    There are a lot of other tests you can have to either support or disagree with your choice to use AS: pca3, 4k, 3T MRI. But keep in mind they are also just suggestive.

    Anyway that's my experience and my walk. Just know there are no risk free options, because the only found a small bit of G6 doesn't mean there isn't more aggressive there. Hence the continued testing.

    Good luck!

     
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    Old 04-17-2020, 06:51 PM   #10
    Terry G
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    Re: Hello, new member here.

    Dugan,
    As each of us shares their experience remember we are each a data point of one. One of the challenges of this disease is that there is no one best answer only the best answer for you and your specific situation.

    When they do a biopsy it is like sticking a pin in a blueberry muffin. If there’s not many blueberries the pin can come out dry. Even 12 sticks can miss stuff including a small amount of a serious cancer grade. Not all areas of the prostate are easy to reach. That’s why it’s important to find a sound AS program if that’s your choice of treatment. In my opinion if that’s the way you decide to go seek the advice of ASAvocate. He’s one of several very knowledgeable AS guys on this forum.

    PSA’s can be variable for many reasons including recent sexual activity, cycling, inflammation, etc. prior to the blood draw. Labs can use different standards and show different results. The small amount of Gleason six would support the relatively low PSA numbers you show. It’s a good idea to keep a historical record of each PSA you have to show trends.

    Any cancer you have will not go away with a lifestyle change; however, a future biopsy may miss a small target. The more sticks you have will provide security regarding just what’s there.

    Gleason six is very slow growing and gives you plenty of time to educate your self on all the options.
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3

     
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    Old 04-17-2020, 06:55 PM   #11
    IceStationZebra
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    Re: Hello, new member here.

    Oh one more thing, please let your doctor know all the supplements you are taking. Some could possibly artificially reduce your PSA. You don't want that.

     
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    Old 04-17-2020, 07:04 PM   #12
    ASAdvocate
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    Re: Hello, new member here.

    In my AS program at Johns Hopkins, our prostate cancer specific mortality is one-tenth of one percent at 15 years.

    That should reassure anyone about the confidence of being in AS.

    That said, you have to faithfully follow the testing asked of you. Fortunately, the frequency of “protocol” biopsies is decreasing, and the newer ones, like Precision Point, don’t cause infections or need antibiotics.

    https://www.practiceupdate.com/content/active-surveillance-of-grade-group-1-prostate-cancer/96039

     
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    Old 04-17-2020, 09:36 PM   #13
    guitarhillbilly
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    Re: Hello, new member here.

    Quote:
    Originally Posted by DuginMT View Post
    Thanks, GH, did you decide on treatment, or are you on AS still? Also, have you heard of anyone testing positive, changing lifestyle (but getting no radical treatment), and then never testing positive again? My urologist also said, "I will never have less cancer without treatment, unless touched by the hand of God." I guess what I am mainly wondering, if lifestyle factors result in cancer formation, can the cancer be killed off with a change of lifestyle (diet, exercise, supplements, etc.).?
    I am treating the Gleason 8 T2a PCa with Lupron and IMRT. My biopsy diagnosis was considered an aggressive type which is already in 1/4 of my prostate. My testing at diagnosis did not indicate any PCa outside the Prostate which is good.

    PCa is a hormone based cancer so as long as you have Testosterone the cancer has a fuel supply available.

    We cannot wish and make PCa disappear. Some PCa books do link certain food items such as diary products with an increased risk of PCa but stopping them alone does not make the PCa go away.

    "I will never have less cancer without treatment, unless touched by the hand of God."
    I'm inclined to agree with your UR but AS is also possibly one of your options with your stated diagnosis.
    The decision will have to be made by You after you have been given correct information and done the research for yourself.

     
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    Old 04-18-2020, 03:48 AM   #14
    Prostatefree
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    Re: Hello, new member here.

    It is not recommended you manipulate your PSA with anti inflammatory supplements. It has no impact on the cancer and adulterates your one reliable indicator of your cancer's progression. A true and accurate PSA is now your best friend.

    You can't cure cancer with dietary supplements. Your attempt to do so is common and is a yellow warning flag you are in the early stages of the internal acceptance/denial of your cancer. Don't get side tracked into the weeds. Early detection is the key to a successful experience with this cancer. You now have this. Don't squander it.

    Cancer at the base (top of the prostate) has the highest probability of movement up the seminal vesicles and out of the prostate. Biopsies are notorious for being incomplete assessments of the total cancer risk. They sample less than 1% of the gland and rely on the expertise of the doctor to reach a truly random sampling. Some areas are too difficult to reach, so there's that. How big is your prostate currently?

    You are a candidate for AS. Be aware, a professionally monitored AS program has strict protocols to adhere to meaning additional biopsies and MRIs tracking the cancer over time. It is not a get out of jail free card. It is early detection and just the beginning. 50% of men in AS will progress to treatment. Your young age is an indicator your cancer may tend to be more than low risk garden variety old man you'll die of something else legend. This is a marathon, not a sprint. This risk will be with you the rest of your life. Your deligence and persistence now will determine your success overall with this for the rest of your life.

    If you are taking testosterone supplements to counter the effects of aging - stop! If you have taken them tell your doctor. It can exacerbate PCa and also promote smaller more aggressive cancer more difficult to detect and treat. Younger men are tempted by this abuse of hormone therapy and are at serous risk of multiplying their cancer risk unknowingly.

    Finally, in my experience on these forums the VA is not the leading healthcare institution for cancer treatment or healthcare in general. I recommend you move your care to a cancer center of excellence. They will be better equipped to manage your AS program and beyond. Sadly, you will get better care. You may have to make the case, but you have time to make this move. It will be worth the effort.

     
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    Old 04-18-2020, 06:11 AM   #15
    guitarhillbilly
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    Re: Hello, new member here.

    DuginMT:

    In my opinion Prostate Free has given you some EXCELLENT Advice.

    BTW -In case no one has told you PCa can return after treatment no matter which treatment method you choose.

    Please note it is called "Treatment" and not "Cure".

    PCa has become a part of the rest of your life.
    Even if is considered "cured" still going to have follow up PSA testing and in the back of your mind always knowing there is a possibility it can show up again down the road.


    Quote:
    Q: Why should I research how well treatment options cure prostate cancer?

    A: The answer to your question raises the single most important issue in your learning about prostate cancer. This issue can be stated simply. The fundamental purpose for treatment is to cure you of your prostate cancer which means for you to have a zero PSA 15 years later. This is the gold standard PSA measurement for cure. So far, this standard is used to calculate cure rates by doctors only after Radical Prostatectomy and only after ProstRcision.

    Q: What PSA level is used by doctors to show cure rates?

    A: They do not have a PSA level. If your PSA is 0.7, 1.7 or 2.7 after a treatment I shared with you in my previous few questions and your PSA does not later go up very much, you are considered free of cancer using the treatment methods I shared the past few questions you asked me. In fact, there has never been a peer-reviewed medical research paper published using any of the methods I shared with you in the past few questions you asked me that shows a zero PSA 15 years after treatment.

    Q: What is so important about knowing that many doctors do not measure cure by the gold standard?

    A: It is critically important. You cannot talk about “cure rates” or “cure” with a doctor if you do not know the definition. You must speak only of the chance of having zero PSA at 15 years. The refusal by doctors to use the gold standard PSA level is the basic reason for so much confusion about treatment for prostate cancer. Of the 12 different treatment choices for prostate, only two – ProstRcision and Radical Prostatectomy – have cure rates 15 years after treatment measured by zero PSA – the gold standard.

     
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