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  • Q for the AMS guys

    Do you wear a pad after AMS was activated or are you 100% dry.?
    YOB 1957

    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.

    3/6/19. Post surgery Pathology Report - Grade Group 4 Intraductal Carcinoma
    T3aNO, <1 mm non focal EPE, GS8, 21 mm uni-focal tumor involved 10% of prostate.
    7 Nodes, SV, SM, PNI, and BNI were negative.
    LVI and Cribriform pattern present.
    Decipher .86 High Risk.

    Post Surgery PSA
    3/25/19 .03. (25 days)
    4/25/19 <.03. (2 months)
    5/25/19 <.02 (3 months)
    9/10/2019. <.02 (7 months)
    11/27/2019. <.02. T < 3 (9 months)
    5/19/2020. <.02 (15 months)
    11/2/2020. <.02 (21 months)
    5/11/2021. <.02 T <3 (27 months)
    8/25/2021. <.02 T <3 (30 months)
    12/6/2021. <.02 T <3 (33 months)
    6/14/2022. <.02 T <3 (39 months) T=37

    3 Part Modality Treatment Completed

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
    ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
    ADT - 5/19- 5/21 Eligard and Casodex.



    3 Part Modality Treatment Completed

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
    ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
    ADT - 5/19- 5/21 Eligard and Casodex.


  • #2
    I do. I find I can occasionally sit on a cushion that pushes a bit of urine out. Not often, but often enough.
    Age Dx'd 57
    PCa History: Father, Grandfathers
    Oct16 Bx: Gleason 4+3 Grade Group 3 w/PNI
    LB: 4+3 (60% pattern 4),
    RA: 3+3, RLM: 3+3, RLA: 3+3

    Jan 2017 RALP - Pathology = pT3a; Gleason 4+3; Weight: 42g

    Jun 2019 AMS800 installed, Jul 2019 activated - Dr. David Rapp
    Sep 2022 AMS800 failed. Scheduling a replacement if possible.
    PSA_TESTS
    Apr16-5.10
    Jul16-4.70
    Aug16-5.13

    ---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
    Nov20<0.10
    May21<0.10
    Apr22<0.10

    Comment


    • #3
      Yes, I must wear a pad constantly. My initial AUS was too tight and I couldn't pee so it was replaced two weeks later with the next larger size cuff, which leaks quite a bit. It's like being an in-between waist size... you can either buy trousers that are too tight or ones which require a belt and some gathering at the waist.

      I generally only use one moderate pad per day. I am not aware of drips, though I know they happen because of staining on the pad. I tend to squirt when sitting down or getting up from being seated. At night I only use a dry washcloth tucked into my groin, no pad.

      I've had the AUS five years now and had radiation immediately after activation. I am planning to have the AUS replaced later this year by a different surgeon. I had hoped it would be sooner but had my right shoulder repaired a year ago and am having the left one done in two weeks from now.
      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, RT base, 2ea 15-40-100% G8(4+4)
      Aug'16:DVRP, "broad cut" 11 LN-, neg margins, gland 53g, 25% involved
      multifocal EPE, PNI, BNI, bilateral SVI, pT3b N0
      Dec 2016: Mrs: Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
      spinal RT boost+6X R-CHOP21+6X IT MTX via LP.
      Remission ended 2020, Follicular NHL. Currently active surveilance.

      Mar 2020: older adult son, T-cell acute lymphoblastic leukemia (TALL)
      Hyper-CVAD + pegaspargase, RBC transfusions in NYC amid COVID-19

      Bone marrow transplant Oct 2020, currently in Remission
      Jan'17: began Lupron ADT, uPSA's ~.03
      May'17: AMS800 implanted, revised 6/17
      Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
      Jan 2018-Jan 2022: PSA's <0.008, T=50
      Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritis
      June 2020: younger adult son, small bowel resection
      adenocarcinoma of lower ileum (SBA) w/+lymph node, stage T3a-N1
      Adjuvant chemo: 12x FOLFOX, currently in Remission

      "Everyone you meet is fighting a battle you cannot see"

      Comment


      • #4
        I was at Cleveland yesterday to discuss the AMS. I was a bit surprised I would not be 100% dry after this surgery and you guys backed that up. I am not scheduled to have the surgery until January, my choice, and I am wondering if it’s worth it with the risk of erosion at the cuff. Currently wear 2 Depends diapers a day for the busy days, 1 if just laying around the crib.

        I have a fairly active life and work out a couple days a week and question giving that up for 6 weeks for what seems a limited benefit.
        YOB 1957

        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 &lt;5%, Right side negative.

        3/6/19. Post surgery Pathology Report - Grade Group 4 Intraductal Carcinoma
        T3aNO, <1 mm non focal EPE, GS8, 21 mm uni-focal tumor involved 10% of prostate.
        7 Nodes, SV, SM, PNI, and BNI were negative.
        LVI and Cribriform pattern present.
        Decipher .86 High Risk.

        Post Surgery PSA
        3/25/19 .03. (25 days)
        4/25/19 <.03. (2 months)
        5/25/19 <.02 (3 months)
        9/10/2019. <.02 (7 months)
        11/27/2019. <.02. T < 3 (9 months)
        5/19/2020. <.02 (15 months)
        11/2/2020. <.02 (21 months)
        5/11/2021. <.02 T <3 (27 months)
        8/25/2021. <.02 T <3 (30 months)
        12/6/2021. <.02 T <3 (33 months)
        6/14/2022. <.02 T <3 (39 months) T=37

        3 Part Modality Treatment Completed

        2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
        ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
        ADT - 5/19- 5/21 Eligard and Casodex.



        3 Part Modality Treatment Completed

        2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
        ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
        ADT - 5/19- 5/21 Eligard and Casodex.

        Comment


        • #5
          Since I was one of the "special" kids who failed and flailed during the continence classes...

          I will not hesitate to get a replacement when either this device or my urethra wears out.

          Right now, it's irritating to squirt occasionally. Before the AMS it was a constant liquid in, liquid out. I could judge how many pads I would use by how much I drank. I'm not missing those days.
          Age Dx'd 57
          PCa History: Father, Grandfathers
          Oct16 Bx: Gleason 4+3 Grade Group 3 w/PNI
          LB: 4+3 (60% pattern 4),
          RA: 3+3, RLM: 3+3, RLA: 3+3

          Jan 2017 RALP - Pathology = pT3a; Gleason 4+3; Weight: 42g

          Jun 2019 AMS800 installed, Jul 2019 activated - Dr. David Rapp
          Sep 2022 AMS800 failed. Scheduling a replacement if possible.
          PSA_TESTS
          Apr16-5.10
          Jul16-4.70
          Aug16-5.13

          ---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
          Nov20<0.10
          May21<0.10
          Apr22<0.10

          Comment


          • #6
            I know there are guys on HW who say they have had the AUS for ten years and are dry except the occasional drip, rare enough that cotton underwear can soak it up.

            Personally I was in a time crunch. The surgeon did my RP with a broad cut without nerve sparing because the local spread was so extensive. After surgery I was so incontinent that I was totally unaware of how much I was leaking until I had soaked thru the pad. I went thru PT with a Kegel nurse and the anal probe and she said I was "holding" properly but I could not spend every moment of every day with my butt clenched. I had to get ART underway and my RO said there was typically little progress made in continence after nine months, so that's when I scheduled the implant.

            Still sometimes if I hang the wrong way the pee runs down my leg. I would venture to say that my condition with the AUS is probably similar to yours without it. The scary thing to me at the time that I made the decision to go for it was that I would never be able to go back to peeing without pumping the AUS. In fact, before my shoulder surgery last year, I deactivated the AUS and wore a diaper for a few weeks because I would only have one hand, and will probably do the same for this next surgery. I have practiced doing it one handed and do not trust myself to be able to do it every time.

            If I were in your shoes, I'd probably pass on getting the AUS. Last time I spoke with MichiganMan he'd had the AUS implanted and was happy with it, but there are no guarantees. At least where you are now you know what you can expect from one day to the next, unless your condition begins to deteriorate.
            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, RT base, 2ea 15-40-100% G8(4+4)
            Aug'16:DVRP, "broad cut" 11 LN-, neg margins, gland 53g, 25% involved
            multifocal EPE, PNI, BNI, bilateral SVI, pT3b N0
            Dec 2016: Mrs: Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
            spinal RT boost+6X R-CHOP21+6X IT MTX via LP.
            Remission ended 2020, Follicular NHL. Currently active surveilance.

            Mar 2020: older adult son, T-cell acute lymphoblastic leukemia (TALL)
            Hyper-CVAD + pegaspargase, RBC transfusions in NYC amid COVID-19

            Bone marrow transplant Oct 2020, currently in Remission
            Jan'17: began Lupron ADT, uPSA's ~.03
            May'17: AMS800 implanted, revised 6/17
            Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
            Jan 2018-Jan 2022: PSA's <0.008, T=50
            Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritis
            June 2020: younger adult son, small bowel resection
            adenocarcinoma of lower ileum (SBA) w/+lymph node, stage T3a-N1
            Adjuvant chemo: 12x FOLFOX, currently in Remission

            "Everyone you meet is fighting a battle you cannot see"

            Comment


            • #7
              Well...this is a disappointment!

              Two night ago, I woke up to a soaked pad.

              Over the last two days, I squirt when getting up, when wresting with a dog that wants to go that way when I want to go this way, etc.

              The pump seems like it's functioning. (I can feel the fluid as it goes through the pump bulb and the bulb fills after use.)

              It's possible that something got out of place after the twisting and bending while weed-whacking the hillside. (30 - 50 degree slant from left to right. Living in the mountains is easier when you're younger.)

              Will be scheduling a visit with a urologist/mechanic to see what's going on.
              Age Dx'd 57
              PCa History: Father, Grandfathers
              Oct16 Bx: Gleason 4+3 Grade Group 3 w/PNI
              LB: 4+3 (60% pattern 4),
              RA: 3+3, RLM: 3+3, RLA: 3+3

              Jan 2017 RALP - Pathology = pT3a; Gleason 4+3; Weight: 42g

              Jun 2019 AMS800 installed, Jul 2019 activated - Dr. David Rapp
              Sep 2022 AMS800 failed. Scheduling a replacement if possible.
              PSA_TESTS
              Apr16-5.10
              Jul16-4.70
              Aug16-5.13

              ---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
              Nov20<0.10
              May21<0.10
              Apr22<0.10

              Comment


              • #8
                I am interested in the determination of what happened, keep us in the loop.
                YOB 1957

                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 &lt;5%, Right side negative.

                3/6/19. Post surgery Pathology Report - Grade Group 4 Intraductal Carcinoma
                T3aNO, <1 mm non focal EPE, GS8, 21 mm uni-focal tumor involved 10% of prostate.
                7 Nodes, SV, SM, PNI, and BNI were negative.
                LVI and Cribriform pattern present.
                Decipher .86 High Risk.

                Post Surgery PSA
                3/25/19 .03. (25 days)
                4/25/19 <.03. (2 months)
                5/25/19 <.02 (3 months)
                9/10/2019. <.02 (7 months)
                11/27/2019. <.02. T < 3 (9 months)
                5/19/2020. <.02 (15 months)
                11/2/2020. <.02 (21 months)
                5/11/2021. <.02 T <3 (27 months)
                8/25/2021. <.02 T <3 (30 months)
                12/6/2021. <.02 T <3 (33 months)
                6/14/2022. <.02 T <3 (39 months) T=37

                3 Part Modality Treatment Completed

                2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
                ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
                ADT - 5/19- 5/21 Eligard and Casodex.



                3 Part Modality Treatment Completed

                2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
                ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
                ADT - 5/19- 5/21 Eligard and Casodex.

                Comment


                • #9
                  I've found that any and all discussions with a urologist regarding an AUS begin and end with just one question... how many pads do you go thru in a day?

                  The surgeon whom I recently saw about replacing mine pointed out that I was wearing a "light" pad. Duh... that's why I have the AUS.

                  I admin the AUS support group on FB (https://www.facebook.com/groups/ams800/) and we have some guys who say they go thru five pads a day... and that's WITH the AUS!

                  Casualty of 2012 USPSTF recommendations

                  Comment


                  • #10
                    That’s disturbing.
                    YOB 1957

                    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 &lt;5%, Right side negative.

                    3/6/19. Post surgery Pathology Report - Grade Group 4 Intraductal Carcinoma
                    T3aNO, <1 mm non focal EPE, GS8, 21 mm uni-focal tumor involved 10% of prostate.
                    7 Nodes, SV, SM, PNI, and BNI were negative.
                    LVI and Cribriform pattern present.
                    Decipher .86 High Risk.

                    Post Surgery PSA
                    3/25/19 .03. (25 days)
                    4/25/19 <.03. (2 months)
                    5/25/19 <.02 (3 months)
                    9/10/2019. <.02 (7 months)
                    11/27/2019. <.02. T < 3 (9 months)
                    5/19/2020. <.02 (15 months)
                    11/2/2020. <.02 (21 months)
                    5/11/2021. <.02 T <3 (27 months)
                    8/25/2021. <.02 T <3 (30 months)
                    12/6/2021. <.02 T <3 (33 months)
                    6/14/2022. <.02 T <3 (39 months) T=37

                    3 Part Modality Treatment Completed

                    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
                    ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
                    ADT - 5/19- 5/21 Eligard and Casodex.



                    3 Part Modality Treatment Completed

                    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
                    ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
                    ADT - 5/19- 5/21 Eligard and Casodex.

                    Comment


                    • #11
                      Will be scheduling with the Uro. The AUS seems to have failed and I'm back to the days of no control.

                      The pump still seems to work, but seems to take less pumps to get it fully pumped down.

                      I did de-activate/activate it to see if that helped. It didn't. The bulb did stay depressed while de-activated.
                      Age Dx'd 57
                      PCa History: Father, Grandfathers
                      Oct16 Bx: Gleason 4+3 Grade Group 3 w/PNI
                      LB: 4+3 (60% pattern 4),
                      RA: 3+3, RLM: 3+3, RLA: 3+3

                      Jan 2017 RALP - Pathology = pT3a; Gleason 4+3; Weight: 42g

                      Jun 2019 AMS800 installed, Jul 2019 activated - Dr. David Rapp
                      Sep 2022 AMS800 failed. Scheduling a replacement if possible.
                      PSA_TESTS
                      Apr16-5.10
                      Jul16-4.70
                      Aug16-5.13

                      ---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
                      Nov20<0.10
                      May21<0.10
                      Apr22<0.10

                      Comment


                      • #12
                        I guess this is why I wanted to try pelvic PT before getting the AMS. The concept seems fragile.
                        YOB 1957

                        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 &lt;5%, Right side negative.

                        3/6/19. Post surgery Pathology Report - Grade Group 4 Intraductal Carcinoma
                        T3aNO, <1 mm non focal EPE, GS8, 21 mm uni-focal tumor involved 10% of prostate.
                        7 Nodes, SV, SM, PNI, and BNI were negative.
                        LVI and Cribriform pattern present.
                        Decipher .86 High Risk.

                        Post Surgery PSA
                        3/25/19 .03. (25 days)
                        4/25/19 <.03. (2 months)
                        5/25/19 <.02 (3 months)
                        9/10/2019. <.02 (7 months)
                        11/27/2019. <.02. T < 3 (9 months)
                        5/19/2020. <.02 (15 months)
                        11/2/2020. <.02 (21 months)
                        5/11/2021. <.02 T <3 (27 months)
                        8/25/2021. <.02 T <3 (30 months)
                        12/6/2021. <.02 T <3 (33 months)
                        6/14/2022. <.02 T <3 (39 months) T=37

                        3 Part Modality Treatment Completed

                        2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
                        ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
                        ADT - 5/19- 5/21 Eligard and Casodex.



                        3 Part Modality Treatment Completed

                        2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
                        ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
                        ADT - 5/19- 5/21 Eligard and Casodex.

                        Comment


                        • #13
                          Originally posted by MRJ View Post
                          Will be scheduling with the Uro. The AUS seems to have failed and I'm back to the days of no control.

                          The pump still seems to work, but seems to take less pumps to get it fully pumped down.

                          I did de-activate/activate it to see if that helped. It didn't. The bulb did stay depressed while de-activated.
                          Just watched an AMS surgery video, primary cause of failure is inadvertent device uncoupling due to improper securing of a tab during surgery. The tab is a simple notch snap that secures the cuff.

                          Last edited by Duck2; 09-14-2022, 05:28 AM.
                          YOB 1957

                          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 &lt;5%, Right side negative.

                          3/6/19. Post surgery Pathology Report - Grade Group 4 Intraductal Carcinoma
                          T3aNO, <1 mm non focal EPE, GS8, 21 mm uni-focal tumor involved 10% of prostate.
                          7 Nodes, SV, SM, PNI, and BNI were negative.
                          LVI and Cribriform pattern present.
                          Decipher .86 High Risk.

                          Post Surgery PSA
                          3/25/19 .03. (25 days)
                          4/25/19 <.03. (2 months)
                          5/25/19 <.02 (3 months)
                          9/10/2019. <.02 (7 months)
                          11/27/2019. <.02. T < 3 (9 months)
                          5/19/2020. <.02 (15 months)
                          11/2/2020. <.02 (21 months)
                          5/11/2021. <.02 T <3 (27 months)
                          8/25/2021. <.02 T <3 (30 months)
                          12/6/2021. <.02 T <3 (33 months)
                          6/14/2022. <.02 T <3 (39 months) T=37

                          3 Part Modality Treatment Completed

                          2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
                          ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
                          ADT - 5/19- 5/21 Eligard and Casodex.



                          3 Part Modality Treatment Completed

                          2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery #41 in US.
                          ART - 7/25/-9/25 2019 (78 Gy, yes, I glow in the dark).
                          ADT - 5/19- 5/21 Eligard and Casodex.

                          Comment

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