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Thread: What I Need to Know About Active Surveillance

  1. #21
    Moderator Top User HighlanderCFH's Avatar
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    7,297
    Great illustration, Otago. Now we can directly see, from you own example, how a PSA can vary even with the same lab with almost the same blood sample. It may have differed even more if one of the samples had gone to a different lab.
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  2. #22
    I am a 70 year old man who has been on AS since 4/09. I have studied this treatment option extensively. I recently had a targeted biopsy. One of the three cores with low involvement, that was positive was upgraded from a 3+3=6 to a 3+4=7(10 percent involvement) by Epstein at Johns Hopkins. I spoke with my urologist who believes that the difference may be nuance between the two hospitals. I did not get a third opinion, however I did have a gene test that shows that my risk is low. Generally I get a biopsy every two years, however this time, I will have a biopsy in one year time. Now I am seventy, and Johns Hopkins is reevaluating the guidelines for men over 70 to include 3+4=7.

    Slappy, sinc e you are a younger man with more extensive PCa found than I have, and I hope in good health with a long life in front of you, I would seriously consider an active treatment, unless a third opinion is done that you can have confidence in.
    There is a new better test that I just read about for analysis of pathology that looks like it will give more reassurance of the results to help in your decision ...it is

    QuadVysion
    Pathologists donít always agree on Gleason grade or
    even on whether or not cancer is present.(9) Having
    a pathology second opinion can improve accuracy.
    Bostwick Labs uses the QuadVysion IS report to help
    clarify uncertain biopsies by immunohistochemical
    staining with 4 antibodies (AMACR, C-myc, HMW
    P63 and Cytokeratin)

    The test is available through your physician by
    phone (877) 865 3262 and online at http://www.
    prolaristest.com. Cost for QV, ~$600

  3. #23
    Welcome to the group, Hopeful. And good luck with your AS.
    Fran
    BD 1950
    DRE in 2005 showed right lobe enlarged/hard
    Biopsies in 2006 and 2009 both negative
    Biopsy May 2013 positive 1 of 14 cores
    4+3=7 T2a. PSA 2.9
    daVinci surgery 7/17/13 by Dr. Dennis LaRock
    Final pathology 7/29/13
    Tumor size 1.5 cm
    PC found on both lobes (biopsy indicated one)
    T2b Gleason 4+3=7
    Negative margins
    first post surgery psa 8/30/13 undetectable
    second post surgery psa 11/23/13 undetectable
    18 month post surgery psa 2/17/15 undetectable
    5 year post surgery psa 3/20/18 undetectable

  4. #24
    Newbie Regular User
    Join Date
    Aug 2013
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    17
    Hopeful, I've pretty much come around to the idea of getting treatment and abandoning AS. I initially decided on surgery, but was never comfortable with the decision, given the side effects, and am now thinking that proton or some other type of radiation will be sufficient.

  5. #25
    JustSlappy, can you post your stats?

    Never mind...I found them in an earlier post.
    If you can, add your history to your blog and viewers will see it every time you post.
    Fran
    BD 1950
    DRE in 2005 showed right lobe enlarged/hard
    Biopsies in 2006 and 2009 both negative
    Biopsy May 2013 positive 1 of 14 cores
    4+3=7 T2a. PSA 2.9
    daVinci surgery 7/17/13 by Dr. Dennis LaRock
    Final pathology 7/29/13
    Tumor size 1.5 cm
    PC found on both lobes (biopsy indicated one)
    T2b Gleason 4+3=7
    Negative margins
    first post surgery psa 8/30/13 undetectable
    second post surgery psa 11/23/13 undetectable
    18 month post surgery psa 2/17/15 undetectable
    5 year post surgery psa 3/20/18 undetectable

  6. #26
    Regular User
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    Apr 2012
    Posts
    17
    Not to be a wise ass, for most of us (in our 60's, close or even older) Life is a year at a time, unless one's denial meter is turned to 11.

  7. #27
    Experienced User
    Join Date
    Aug 2012
    Posts
    70
    Quote Originally Posted by JustSlappy View Post
    I am 58 and pretty concerned about post-treatment quality of life, so I've decided to pursue Active Surveillance until circumstances dictate otherwise. My doctor relented even though he points out that 5 of my 12 cores were positive, and one was 50%, both of which are outside of the recommended Johns Hopkins guidelines. I got my biopsy results in May 2013. I had a Gleason Score of 3+3=6, and PSA of 4.5. It was re-tested last week and was 3.9. I even had a Prolaris test, which looks for genetic markers of more aggressive cancers, none of which it determined that I had (I am not sure I'd bet the ranch on this test, but it does support my AS strategy, regardless of its reliability.) I was comfortable with the decision -- the odds are very high that something other than prostate cancer will kill me, and I'll take those odds if I can avoid those possible nasty side effects.

    Here's the monkey wrench. Last week, I got the results of a second opinion on my biopsy from University of Pennsylvania Hospital. They said they detected 3+4=7 in one of my five positive cores. They suggested I get Dr. Epstein's opinion at Johns Hopkins as the tie-breaking interpretation, and I may do that, but regardless of his interpretation, I'll always know at least one pathologist thinks my prostate cancer is a little more serious than the initial biopsy reading.

    So I'm just not sure if Active Surveillance is still the way to go.

    Appreciate any suggestions or insights. Thanks
    I consider myself to be on AS. I had hemi ablation with HIFU, now focused on keeing the remainder of my prostate healthy. I have decided that Dr. Charles Myers is the primary go to person that is shaping my diet and supplements. He has published several books on diet; be sure to buy the latest if you're going to read his thoughts. Since he is a former cancer drug researcher, I trust his judgment on which supplements are effective. My PSA was as high as 6.3, adopting his diet and supplements took it down to 2.0 in three months. I'm just trying to avoid those annoying side effects from surgery as long as I can. I have a yearly MRI, and as long as it comes back clean, I'm happy for another year. I am going to ask my new uro to get me set up with Sand Lake Imaging this next time if I can, and do a Faraheme MRI, just to make sure it has not gotten into the lymph nodes. That's my plan- what works for me doesn't work for everyone, esp. given that I am willing to accept more risk in exchange for a better quality of life. If it makes you happy and relieved to have surgery when diagnosed with a 3+3, then you made the right decision for you.
    58 years old
    PSA 6.3 at peak 10/2011
    PSA 2.0 after diet changes and supplements 1/2012
    PSA 1.4 after diet changes and supplements and Avodart 6/2012
    5/21/2012 12 needle biopsy
    Gleason 3+4
    Left apex 15% of tissue
    Left base lat 10% of tissue
    Left mid small focus atypical
    T1c
    HIFU hemi-ablation on 8/24/2012 with
    no urinary, bowel, or sexual side effect

  8. #28
    Newbie New User
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    Aug 2013
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    Hi Walt

    Thanks for your input to my post.
    I Am just heading down AS road.
    Could you give some advice on the diet you have adopted

    Thanks

    petermollie

  9. #29
    Walt, I'm basically following your diet now... I lost some weight when I was on the "DaVinci & Catheter Diet" and resolved to keep it off and eat healthier.

    In hindsight, after I had my first biopsy, and it was negative, instead of "business as usual", I should have put myself in "AS" mode and immediately changed my diet and lifestyle.

    Maybe it would have made a difference, maybe not. But it is definitely healthier. I'm down 15 pounds from my high before the surgery with another 10 to go...
    BD: 1959 PSA 4.9 11/2012 (no symptoms)
    Biopsy 12/2012 Negative
    PSA 5.9 05/2013 (still no symptoms)
    Biopsy 6/2013 3+4 (thank goodness for PSA tests)
    1 core positive (upper left), 1 suspicious (lower left) out of 12
    DRE: bump right side T1c; PCA-III = 20 (normal)

    Da Vinci 7/18/2013: Invasive carcinoma involves left lobe of prostate only, extends from left apex to posterior mid region of left lobe Gleason 7/10 (4+3); G4 tumor comprises 75% of invasive carcinoma present
    Estimated total volume of carcinoma in entire prostate gland: 10%
    TNM: T2b NX MX (Stage IIA)

    8/13 11/13 2/14 8/14 2/15 8/15 3/16, 8/16, 3/17,9/17,4/18, 9/18 PSA undetectable
    3/19: .1 (damn), 4/19,6/29 retests: .1 (damn)


    My Story:
    T-Minus-36-Hours-until-da-Vinci...
    Catheter is Out!

  10. #30
    Newbie New User
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    Thanks for the information on your diet Walt.
    petermollie

 

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