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Thread: Please educate me

  1. #11
    Tough break mostth, but there are a few of us here who went thru the same thing. In fact, your pathology is identical to mine... T3b w/SVI. This is serious stuff. It CAN kill you. Your chances with or without adjuvant RT are about 50/50. In my case, the Dx and RP occurred right in the middle of my wife and I retiring and moving to Florida, a thousand miles away. In fact, we sold our house while I was still in bed recovering, and completed our move six weeks after surgery. Then as soon as we got to Florida, my wife was hospitalized and diagnosed with stage 4 lymphoma. She required twelve all-day visits to the hospital over the coming months, and I was her transporter and caregiver.

    My cancer treatment took a back set to hers. Meanwhile, I had not regained urinary continence from the surgery and went thru PT with a Kegal coach. No good. I had found a radiation oncologist as it had been recommended that I commence adjuvant RT within six months of the prostatectomy, and the RO started me on Lupron ADT to buy me some time while my wife and I both healed. She eventually got better, but I did not.

    The SE's were bad. I begged my RO for something, anything to help, and got nothing. I did my own research and begged my GP for venlafaxine, which I credit with having saved my sanity. Eventually, after two more surgeries, I started the RT exactly one year after my RP. The SE's of that were also pretty bad.

    You can read my experiences in the stickies on this forum. The entire ordeal was very difficult, and the saga continues. My final Lupron injection was 18 months ago and my testosterone is still at castrate levels. But my PSA also remains undetectable. It appears that I have won, but only because I threw everything at it, in spite of what life was throwing at me. "Damn the torpedoes, full speed ahead".

    The battle is not easy. Nothing worthwhile ever is. Be thankful that your PCa was caught just in time, as was mine, before it went metastatic... and pray there is no lymphatic involvement. And vjbaba, good luck with your remaining treatments. You are fighting the good fight.
    Late 2012: PSA 4, age 62 all DRE's 'normal'
    Early 2014: PSA 9.5, TRUS biopsy (false) negative
    2015: PSA's 12 & 20, LOTS of Cipro ... Mar'16: PSA 25, changed Urologist
    Jun'16: MRI fusion biopsy, tumor right base, 6/16 cores: 2ea 15-40-100% G8(4+4)
    Aug'16: DVRP,
    "broad cut" 11 LN-,-SM, 53g 25% involved, multifocal EPE, PNI, B/L SVI, pT3b

    Jan'17: started Lupron ADT, uPSA's ~.03
    May'17: AMS800 implanted, revised 6/17
    Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
    Jan'18-July 2019: PSA's <0.008, T~12
    Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritis
    "Everyone you meet is fighting a battle you cannot see"

    Mrs: Dec 2016: Dx stage 4 NHL/DLBCL,
    Primary Bone Lymphoma
    spinal RT boost+6X R-CHOP21+6X IT MTX via LP. Now in remission
    Read our story at CancerCoupleBlog

  2. #12
    Mostth, SRT is your last chance of a cure, it can only be done once and is significantly more efficient combined with HT.

  3. #13
    Senior User
    Join Date
    Jan 2019
    Posts
    479
    Quote Originally Posted by KarlEmagne View Post
    Mostth, SRT is your last chance of a cure, it can only be done once and is significantly more efficient combined with HT.
    Add, don’t F around. Getter done.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT - 6/3/19
    ART - 8/5/19

  4. #14
    Top User
    Join Date
    Aug 2016
    Posts
    1,653
    Radiation is the next step. Hormone therapy stuns the cancer cells and makes them more susceptible to the radiation even sending some into remission. Your getting the best healthcare available. Your job now is to be the patient and it is certainly a full time job. Work to give up the aniexty about whether what comes next is the best that is available to you. It is. You have that part covered. Graditude is your best friend now. I'm overwhelmed by it everytime I walk into a hospital, and I've been there many times. Those who choose this way of service are special people. Enjoy them.
    Born 1953
    family w/PCa; grandfather, 3 brothers
    07-12-04 PSA 1.90
    07-10-06 PSA 2.02
    08-30-07 PSA 3.20
    12-01-11 PSA 5.69 Internist recommends urologist, I say no
    05-16-12 PSA 4.76 manipulate w/diet & supplements
    12-11-12 PSA 5.20, Health system changes to 3 years on testing
    03-07-16 PSA 7.20 Internist adamant on urologist
    DRE smooth, enlarged
    03-14-16 TRUS biopsy-prostatic adenocarcinoma 1%-60% across 8 of 12 samples, Gleason 3+3=6
    03-31-16 MRI pelvis w/o dye
    05-04-16 DaVinci prostatectomy, nerve sparing, Dr. Kent Adkins - recommend
    Final Path; weight 65g, lymph nodes, seminal vesicles, capsule, margin all negative, Gleason 3+4=7, Tumor volume 35%, +pT2c
    Catheter out - 16 days
    Incontinence at 6mos is minimal – no pad
    Cialis 3x/wk & Viagra on occasion
    Begin self-injection needle therapy for erections, stop after 6 due to onset of Peyronie’s
    Erections 100% - 14 months
    5-21-19 PSA <0.02, Zero Club 3.5 years

  5. #15
    While HT is still likely in my future, I have had a RP and SRT

    Side-effects from SRT were very minimal to non-existant during the process. I forget the intensity but know I talked my radiation oncologist into upping the dose after a consultation at Memorial Sloan-Kettering Cancer Center. He now uses that higher dose on for all SRT for PCa. I did get some side-effects years later but minor and manageable to the point I don't ever think about them.

    If you are worried about erectile dysfunction, there are many solutions to that problem.
    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

 

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