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Thread: Views on when to start Hormone Therapy after failing Surgery and Savage Radiation

  1. #11
    Newbie New User
    Join Date
    Jun 2019
    I think you are very wise to recognize that the question of when to start ADT is, at least partly, philosophical. I entered a clinical trial at UCSF when my PSA hit approximately 1.0 after prostatectomy and SRT failed to wipe out the 3+4 beast.

    The hypothesis in the trial was hit hard, hit early. I was in a branch that got ADT and Apalutamide for 1 year, ending in February 2019. We'll see. The ADT didn't mess me up too badly, except powerful hot flashes and night sweats that persist to this day.

    I gambled on "hit hard, hit early" but it will take years for the trial to reach any conclusions. My "philosophical" inclination was to enlist in a clinical trial. I say "philosophical" because it was a choice that didn't have a scientific underpinning -- just a willingness to let my clinical outcome advance the cause of medical science. Even if my treatment arm proves very successful.

    I might be one of those who do poorly. I do think that the more of us who make ourselves available for clinical trials, the more men who will benefit downstream from our willingness to step forward. The researchers don't have enough volunteers.

    If I were in your shoes, I would definitely check out what clinical trials might be available and not assume that your not a candidate. My $.02.
    Last edited by HighlanderCFH; 06-25-2019 at 10:26 AM. Reason: white space added

  2. #12
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Welcome to the forum, Notadoctor. And here's hoping that you are one of those who do VERY WELL.
    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.

  3. #13
    UUggggh! I hate when a thought-out reply gets zapped and lost!

    I want to start by thanking everyone for the responses they were exactly what I was hoping for. I appreciate all the responses and for that reason hesitate to mention a few but I trust everyone knows that's an inherent limitation with such responses.

    I watched the video of Dr. Small that garyi provided it was just the kind of help I needed to refresh my mind and give me a few new basics as I research this phase of my battle. I am just starting on the study that KarlEmagne posted. It too seems to be the sort of information I need to make an informed decision and not just trust the impulse of my urologist. I bookmarked the clinical trials link that DjinTonic provided and did a little initial searching. There just was not a post that was not helpful.

    As far as speculation on where the cancer has been hiding aspect, I too have considered that there could have been some metastatic cancer back when I had the early and significant dose of SRT or maybe when I had surgery. I just have a difficult time thinking metastatic Gleason 8 cancer would take 10 - 15 years to grow big enough to produce a PSA of .74 and remain invisible to an Axumin scan. I have an impressive urologist I see when I am in another state part of the year. He suggested the radical concept that the same factors that cause me to develop the initial cancer would likely act on the non-cancerous prostate cells that were very likely left behind. His theory was that these cases of long delays could be new cancers in prostate cells left behind. He acknowledges that there is no proof or even direct evidence of that but it would explain the part of this that is very difficult to explain otherwise.

    Thanks again to everyone! Now I am off to try to figure out how to follow the studies on the subforum. At first glance, it was a little confusing.
    History: age 53 It took 3 biopsies (34 cores) to find 2 cores 4+4 Gleason 8
    Lap RP at MSKCC Apr 2004, age 54 All neg margins, nodes & structures. (T2a).
    Post RP PSA: <.1 until Feb, 08 (46 mos) PSA 0.1 - I then got sensitive tests -> 2008: Feb 0.06,
    May-08 0.09 - Jun-08 0.10, - Aug-08 0.10, - Nov-08 0.15
    SRT Dec-2008 ---Post SRT PSA 2009, Feb-09 0.10, May-09 0.09, Aug-09 0.06, Dec-09 .04, - 2010 Mar-09 0.04, 2011 .02, 2012 .02,
    STARTED UP Feb 2014-0.06, Jul-2015 0.10, Oct-2015 0.10, Feb-2016 0.15, Jun-2016 0.17, Dec-2016 0.25, Jan-2019 0.74, Jun -2019 0.72
    Aug 2018 Auximin scan - nothing
    Had an inflatable penile implant 2018 for ED. Best decision ever https://www.peyroniesforum.net/index...oard,56.0.html

  4. #14
    Hawk, see also IndyGuy's post #48 here on radioligand therapy. As a therapy concept I think it's brilliant -- in practice, we'll see.
    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(16): 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 check)
    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

  5. #15
    Top User garyi's Avatar
    Join Date
    Apr 2017
    Hawk....trying to determine the bottom line on most of these studies is excellent exercise for avoiding dementia. The researchers are trying their best, but unfortunately there are no absolute answers just as there is no 'cure' for prostate cancer.

    Have at it...we all have. You will get to a comfort level with them. Good luck!
    72...LUTS for the past 7 years
    TURP 2/16,
    G3+4 discovered
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor still in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    Radiation Procitis, and Ulcerative Colitis flaired after 20 years
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19, .074 7/19, .081 9/19, .116 11/19
    We'll see....what is not known dwarfs what is thought to be fact


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