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Thread: AMS800 to be installed in a month.

  1. #1
    Senior User
    Join Date
    Nov 2016
    Posts
    296

    AMS800 to be installed in a month.

    My RP was done in January 2017 and I have been fully incontinent since.

    I tried doing kegel exercises by myself, following the Mayo Kegel instructions, then switching to other more aggressive kegel plans.

    I was enrolled in PT with a pelvic floor specialist, also to no avail. We tried combinations of core body and pelvic floor strengthening exercises.

    The sensor the PT used indicated that, yes, I had the correct muscle group and yes, I could tighten the muscles with a considerable amount of force.

    My former Uro had attempted to schedule me for an AUS at 18 months post RP. Due to a spat between the hospital system and the manufacturer of the AUS, the plan fell through.

    In January my insurance changed from an employer plan to an ACA plan. That change necessitated changing the Uro as he is not covered by the new insurance. Finally got in to see a new Uro in late March and then again in April. They don't perform the AUS operation, so that ended with another referral to surgeons and hospital 225 miles away.

    Met with the new/new Uro and now have surgery scheduled for June 19th.

    So, it looks like I'll be joining RobLee, RedBelly and MichiganMan in the AUS club. (I've re-read all the AUS posts from you three here and RobLee's elsewhere as well.)
    Last edited by MRJ; 06-20-2019 at 11:32 PM.
    Age at Dx 57
    PCa History: Father, Uncles, Grandfathers

    Oct 2016 Biopsy 12 core: Adenocarcinoma, Gleason 4+3=7 Grade Group 3) w/PNI
    Left Lateral Base: Suspicious
    Left Lateral Mid: PIN
    Left Base: 4+3=7 (60% pattern 4) Core involvement 30% (5mm)
    Right Base: Suspicious
    Right Apex: 3+3=6 Core involvement 60% (7mm) discontinous
    Right Lateral Mid: 3+3=6 Core involvement 10% (1mm)
    Right Lateral Apex: 3+3=6 Core involvement 10% (1mm)

    Jan 2017 DaVinci - Dr. Grant Taylor - Path = pT2c pNX pMX; Gleason 4+3=7; Weight: 42g

    Jun 2019 AMS800 installed - Dr. David Rapp - Jul 2019 activated

    ED: Light to moderate

    (Note: All PSA tests prior to Jun19 were done by LabCore)
    PSA_TESTS

    Apr 2016=5.1
    Jul 2016=4.7
    Aug 2016=5.13

    ----Surgery----

    Mar17<0.01
    Jul17<0.01
    Oct17<0.01
    Jan18<0.01
    May18<0.01
    Nov18<0.01
    Jan19<0.01
    Jun19<0.02

  2. #2
    Good luck with the surgery and in your new life with the AUS. One thing we all have in common is that it's never easy. You've read my story, so you know what I went thru. And like many things in life, they more often than not fall short of our expectations. But as many have said, life with the AUS is certainly far better than life without it. We'll be at the clubhouse door waiting to hand you your honorary membership!
    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:
    began 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

  3. #3
    Experienced User
    Join Date
    Sep 2017
    Posts
    74
    That is AUSome MRJ! Good luck for complete success and dryness.

  4. #4
    Hello MRJ: Welcome to another sub-club of PCa that nobody wants to belong to. Glad to hear that u got your insurance checked out, I was going to say that because u need this operation due to PCA, it should be covered. I would agree with Brother Roblee, that nothing is ever easy. My doctor prior to the surgery just gave it to me straight up, I was about a 5/6 out of 10, and he could get me up to 9ish....( in terms of being dry). So far I am pleased with the results, as that is exactly what has occurred. The true test for me was what was going to happen when I became active..i.e. golf, walking, weights, etc. Prior to the surgery I was using 3.5 pads when active, now not even one. So yes, it has been a success.
    One thing u should know: it is not a easy surgery, and lots of pain and sleepless nites are in front of u. It should not come as a shock that the doctors fail to mention that part of it. All in all u will get thru it, and get used to it. Beats the hell out of leaking all over the place. Wishing u the best possible results...MM
    DOB:Feb 1958
    PSA: 9/15: 5.9
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. +9 of 12 cores. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: -CT scan/BS
    Clinical Staging: 10/28/15 T2c
    ( RALP) UC 12/29/15

    Final Pathology Report; Jan. 6 2016

    -15 lymph nodes
    G9 ( 4+5)
    +EPE
    +LVI
    +Right SV -Left SV and vasa deferentia,
    PI present
    PM
    pT3bNO
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex 4/1/16-8/5/16
    Lupron 4/15/16-5/15/18
    SRT 6/14/16...8/5/16 38Tx
    uPSA 8/10/16---8/22/19 <0.05
    Feb. 2017 Loyola Chicago
    11/15/2018 AUS 800 Implanted
    12/18/18...T Levels...Free T 42.8...Total T...262

  5. #5
    Senior User
    Join Date
    Nov 2016
    Posts
    296
    Semiramide, I like the AUSome. Perhaps my new slogan.

    RobLee & MIchiganMan, Although I tolerate pain pretty well, with Rob's description of a scrotum using 'eggplant' as both a color descriptor and size indicator mean I suspect I will be filling the pain Rx.
    Last edited by MRJ; 05-23-2019 at 11:21 AM.
    Age at Dx 57
    PCa History: Father, Uncles, Grandfathers

    Oct 2016 Biopsy 12 core: Adenocarcinoma, Gleason 4+3=7 Grade Group 3) w/PNI
    Left Lateral Base: Suspicious
    Left Lateral Mid: PIN
    Left Base: 4+3=7 (60% pattern 4) Core involvement 30% (5mm)
    Right Base: Suspicious
    Right Apex: 3+3=6 Core involvement 60% (7mm) discontinous
    Right Lateral Mid: 3+3=6 Core involvement 10% (1mm)
    Right Lateral Apex: 3+3=6 Core involvement 10% (1mm)

    Jan 2017 DaVinci - Dr. Grant Taylor - Path = pT2c pNX pMX; Gleason 4+3=7; Weight: 42g

    Jun 2019 AMS800 installed - Dr. David Rapp - Jul 2019 activated

    ED: Light to moderate

    (Note: All PSA tests prior to Jun19 were done by LabCore)
    PSA_TESTS

    Apr 2016=5.1
    Jul 2016=4.7
    Aug 2016=5.13

    ----Surgery----

    Mar17<0.01
    Jul17<0.01
    Oct17<0.01
    Jan18<0.01
    May18<0.01
    Nov18<0.01
    Jan19<0.01
    Jun19<0.02

  6. #6
    Experienced User
    Join Date
    Jul 2017
    Posts
    76
    Yea, it's a lifestyle change. I take a bucket on boat to pee in, but I'm not changing a pad once an hour. The description of eggplant is correct and I had an incision on bottom of scrotum that took about 8 weeks to quit bleeding. At our age, not great, but I can hunt and fish, and it's somewhat embarrassing, but I've survived PCa, so who cares.
    06/16 TURP, Diagnosed Gleason 6, wait & watch
    02/17 Biopsy - Gleason 9
    05/3017 RALP, cancer in margin walls and seminal vesicles
    No cancer in 34 lymph nodes
    06/27/17 PSA 0.04
    06/29/17 started Lupron,
    07/21/17 Follow up w/Emory PSA 0.01
    08/29/17 Started Zytiga
    10/23/17 Started radiation 39 treatments
    12/18/17 End radiation
    12/18, End Zytiga and prednisone
    03/19 PSA .06
    03/19 Last Lupron shot and starting Casodex until end of July

  7. #7
    Senior User
    Join Date
    Nov 2016
    Posts
    296
    AUS went in yesterday. Got a late start on the surgery, but all in all was done by 5PM.

    A bit sore, but not terrible.

    Pulled the Foley catheter this morning. I hadn't forgot how much I detested that thing.

    For now, walking like a cowboy.
    Age at Dx 57
    PCa History: Father, Uncles, Grandfathers

    Oct 2016 Biopsy 12 core: Adenocarcinoma, Gleason 4+3=7 Grade Group 3) w/PNI
    Left Lateral Base: Suspicious
    Left Lateral Mid: PIN
    Left Base: 4+3=7 (60% pattern 4) Core involvement 30% (5mm)
    Right Base: Suspicious
    Right Apex: 3+3=6 Core involvement 60% (7mm) discontinous
    Right Lateral Mid: 3+3=6 Core involvement 10% (1mm)
    Right Lateral Apex: 3+3=6 Core involvement 10% (1mm)

    Jan 2017 DaVinci - Dr. Grant Taylor - Path = pT2c pNX pMX; Gleason 4+3=7; Weight: 42g

    Jun 2019 AMS800 installed - Dr. David Rapp - Jul 2019 activated

    ED: Light to moderate

    (Note: All PSA tests prior to Jun19 were done by LabCore)
    PSA_TESTS

    Apr 2016=5.1
    Jul 2016=4.7
    Aug 2016=5.13

    ----Surgery----

    Mar17<0.01
    Jul17<0.01
    Oct17<0.01
    Jan18<0.01
    May18<0.01
    Nov18<0.01
    Jan19<0.01
    Jun19<0.02

  8. #8
    Best wishes for a good recovery with great results.

    Djin
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3 -
    7-05-13 TURP (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

  9. #9
    Good luck MRJ. This has made a huge difference in my life....takes a while to heal,but worth the wait. Best of luck, MM

  10. #10
    Coming in right behind you RJ getting mine Friday 7am good luck and I'll update.

 

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