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Thread: What I Need to Know About Active Surveillance

  1. #261
    Quote Originally Posted by working_man View Post
    So, first post for me (I've been lurking for several months). I was diagnosed this past August, but I almost feel silly given that my diagnosis, at least for now, is about as good as you could hope for. In any event, I am going with the Active Surveillance option at Johns Hopkins. I live just outside of Baltimore so at least that was fortuitous under the circumstances. I met with Dr. Christian Pavlovich last Friday to join the AS program at JHH. I plan to share all of this experience here in the hopes of helping someone else out as this forum has done for me.


    I would like to thank all the posters here for the frank and open discussions both in this thread and all the rest. It's comforting to hear from folks who are going through what you are and I appreciate it deeply.

    Best regards,
    working_man
    Hello working_man, and welcome to the Forum and thank you for your first post!! It looks like AS is the perfect way to deal with your G6 PCa. Keep us posted going forward, please. Out of curiosity, was your dad's PCa high-grade or serious is some way, or is he, too, being followed without treatment yet?

    Djin
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg., 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
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%, 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day retest)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  2. #262
    Djin,

    Thanks for the welcome and I will definitely be hanging around. Dad's was a higher grade and he had his prostate removed 24 years ago, but is still going strong at 85. His Gleason score was higher (It added up to 8 but I forgot what the distribution of the numbers were) and he actually had pain in his rectum that forced the whole thing out into the open. He did suffer post-op both ED (he uses injections for that) and incontinence (which he has the artificial sphincter to go with). He never lets any of that affect his outlook or lifestyle which is still quite active for his age.

    I notice you are taking the Pomi-T. I started last month and just finished my first container full. Any thoughts on the effectiveness in your case?

    Best regards,
    working_man
    Age 59
    PSA 09/13 - 2.6
    PSA 05/18 – 4.7
    DRE 05/18 – Nothing of note
    MRI PROSTATE W/WO CONTRAST WITH 3D 06/18 – Assessment Low (clinically significant cancer is unlikely to be present)
    Biopsy 08/18 - SMALL FOCUS OF PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1), INVOLVING LESS THAN 5% OF ONE (1) CORE.
    08/18 - Joined Active Surveillance Program at JHH under Dr. Christian Pavlovich
    PHI 02/19 - PSA (Hybritech) 3.8 ng/ml, PSA % Free 5%, PHI - 31.0
    PSA 08/19 - 5.8
    Biopsy 10/19 - in

    Family history: Father diagnosed with PC at 61

  3. #263
    Quote Originally Posted by working_man View Post
    Djin,
    ...

    I notice you are taking the Pomi-T. I started last month and just finished my first container full. Any thoughts on the effectiveness in your case?

    Best regards,
    working_man
    Yes, I'm taking Pomi-T, based on the research that was done, and no, I have absolutely no idea if it's helping. That's the problem when you have only yourself as a one-man study: there is no control! I can say that it doesn't appear not to be working.

    However, let's say your doc recommends a daily multivitamin -- which you take, and for years you have no medical problems at your checkups. Do you have an argument for stopping the multivitamin? Or a good one for continuing?

    Some Washington legislators have put forth the argument that, since many waterways have over the years been converted from polluted to clean by Federal industrial waste-dumping restrictions, we can now do away with, or loosen, these restrictions (!!??)

    When the Supreme Court ruled that provisions of the Voting Rights Act regarding preclearance in some Southern states be removed, RBG said the lawsuits that have been brought and won under theses provisions show they are both working and still needed. She wrote in her dissent: “[t]hrowing out preclearance when it has worked and is continuing to work to stop discriminatory changes is like throwing away your umbrella in a rainstorm because you're not getting wet.”
    Last edited by DjinTonic; 12-06-2018 at 09:45 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg., 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
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%, 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day retest)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  4. #264
    Quote Originally Posted by working_man View Post
    So, first post for me (I've been lurking for several months). I was diagnosed this past August, but I almost feel silly given that my diagnosis, at least for now, is about as good as you could hope for. In any event, I am going with the Active Surveillance option at Johns Hopkins. I live just outside of Baltimore so at least that was fortuitous under the circumstances. I met with Dr. Christian Pavlovich last Friday to join the AS program at JHH. I plan to share all of this experience here in the hopes of helping someone else out as this forum has done for me.


    I would like to thank all the posters here for the frank and open discussions both in this thread and all the rest. It's comforting to hear from folks who are going through what you are and I appreciate it deeply.

    Best regards,
    working_man

    Let me ask you W/M, as your circumstance seems similar enough to mine.

    Did you get your biopsy at Johns Hopkins- or was that a 2ndary opinion situation? I saw a different urologist for my first biopsy and they hard sold me on surgery, and went to the academic medical center at UPMC for the 2nd opinion.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  5. #265
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,279
    Welcome aboard, Working Man!

    We're glad you found us and intend to stick around with us. Also VERY happy to see that you have a very non-life threatening form of the disease and are probably the best case for AS that I've ever seen.

    Being on this protocol with Johns Hopkins is as good as it gets.

    Looking forward to your future posts!
    Chuck
    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.

  6. #266
    Quote Originally Posted by Southsider View Post
    Let me ask you W/M, as your circumstance seems similar enough to mine.

    Did you get your biopsy at Johns Hopkins- or was that a 2ndary opinion situation? I saw a different urologist for my first biopsy and they hard sold me on surgery, and went to the academic medical center at UPMC for the 2nd opinion.
    Hi Southsider - I had both my biopsies done at JHH. I forgot to mention that I had a previous biopsy in 2006 due to a high PSA reading which turned out negative. Where I work there is a sizable population of older men and Dr Alan Partin of JHH was conducting a study over s few years where we who were interested would get a free DRE and PSA test, My results casued them to recommend a biopsy, which Dr. Partin actually performed. Since my most recent biopsy and subsequent diagnosis at every step I was told that AS was an excellent option for me. No hard sell one way or the other to include the resident who ordered the biopsy, the intern who performed the biopsy, the Oncology Radiation Doc who provided me with options there and finally Dr. Pavlovich who I consulted with most recently.

    best regards,
    w_m
    Age 59
    PSA 09/13 - 2.6
    PSA 05/18 – 4.7
    DRE 05/18 – Nothing of note
    MRI PROSTATE W/WO CONTRAST WITH 3D 06/18 – Assessment Low (clinically significant cancer is unlikely to be present)
    Biopsy 08/18 - SMALL FOCUS OF PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1), INVOLVING LESS THAN 5% OF ONE (1) CORE.
    08/18 - Joined Active Surveillance Program at JHH under Dr. Christian Pavlovich
    PHI 02/19 - PSA (Hybritech) 3.8 ng/ml, PSA % Free 5%, PHI - 31.0
    PSA 08/19 - 5.8
    Biopsy 10/19 - in

    Family history: Father diagnosed with PC at 61

  7. #267
    Quote Originally Posted by HighlanderCFH View Post
    Welcome aboard, Working Man!

    We're glad you found us and intend to stick around with us. Also VERY happy to see that you have a very non-life threatening form of the disease and are probably the best case for AS that I've ever seen.

    Being on this protocol with Johns Hopkins is as good as it gets.

    Looking forward to your future posts!
    Chuck
    Hello Chuck,

    First off please allow me to thank you for your time and dedication to this site and its members - extremely admirable and you have my respect. Thanks for your reassurances - you can second guess yourself to death on this subject. The "what-ifs" can really knock you for a loop.

    Kind regards,
    w_m
    Age 59
    PSA 09/13 - 2.6
    PSA 05/18 – 4.7
    DRE 05/18 – Nothing of note
    MRI PROSTATE W/WO CONTRAST WITH 3D 06/18 – Assessment Low (clinically significant cancer is unlikely to be present)
    Biopsy 08/18 - SMALL FOCUS OF PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1), INVOLVING LESS THAN 5% OF ONE (1) CORE.
    08/18 - Joined Active Surveillance Program at JHH under Dr. Christian Pavlovich
    PHI 02/19 - PSA (Hybritech) 3.8 ng/ml, PSA % Free 5%, PHI - 31.0
    PSA 08/19 - 5.8
    Biopsy 10/19 - in

    Family history: Father diagnosed with PC at 61

  8. #268
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,279
    Thank you for the kind words, w_m. And yes, "what ifs" can drive us crazy, especially on this particular topic. LOL
    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.

  9. #269
    W_M, Glad to read that you are now part of the JH AS program.

    When I watched Dr. Pavlovich’s presentation on prostate cancer to a seniors’ group about 8 or 9 years ago, it was all about the impressive precision of the DaVinci robot. Nothing about any other type of action for PCa. His hospital had not yet merged with JH.

    Times have changed. All good. Keep us informed as you continue.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Strict protocol of tests, including PHI, DRE, MRI, and biopsy.
    Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.
    PSA has varied up and down from 3 to 10 over the years. Is 4.0 as of September 2019.
    Hopefully, I can remain untreated. So far, so good.

  10. #270
    Quote Originally Posted by ASAdvocate View Post
    W_M, Glad to read that you are now part of the JH AS program.

    When I watched Dr. Pavlovich’s presentation on prostate cancer to a seniors’ group about 8 or 9 years ago, it was all about the impressive precision of the DaVinci robot. Nothing about any other type of action for PCa. His hospital had not yet merged with JH.

    Times have changed. All good. Keep us informed as you continue.
    ASAdvocate,

    Hello and thanks for your responses to my PM's. I will certainly stay in touch.

    Kind regards,
    w_m
    Age 59
    PSA 09/13 - 2.6
    PSA 05/18 – 4.7
    DRE 05/18 – Nothing of note
    MRI PROSTATE W/WO CONTRAST WITH 3D 06/18 – Assessment Low (clinically significant cancer is unlikely to be present)
    Biopsy 08/18 - SMALL FOCUS OF PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3+3=6 (GRADE GROUP 1), INVOLVING LESS THAN 5% OF ONE (1) CORE.
    08/18 - Joined Active Surveillance Program at JHH under Dr. Christian Pavlovich
    PHI 02/19 - PSA (Hybritech) 3.8 ng/ml, PSA % Free 5%, PHI - 31.0
    PSA 08/19 - 5.8
    Biopsy 10/19 - in

    Family history: Father diagnosed with PC at 61

 

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