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Do you wear a pad after AMS was activated or are you 100% dry.?
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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 month)
5/20/22. < .02 (39 months). T=37
11/7/22. <.02 (45 months) T=54
5/8/2023 <02 (51 months)
3 Part Modality Treatment Completed
2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery his #41st 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.
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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: 57
PCa History: Father, Grandfathers, Uncles
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
Jan17 RALP - Pathology = pT3a; Gleason 4+3; Weight: 42g - Dr. Grant Taylor
AMS800 Dr. David Rapp @ UVA:
Jun19 Installed; Jul19 Activated; Sep22 Failed; May23 Revision
PSA_TESTS: Apr16-5.10, Jul16-4.70, Aug16-5.13, 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, Sep22<0.10 -
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 N0Dec 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 RemissionJan'17: began Lupron ADT, uPSA's ~.03
May'17: AMS800 implanted, revised 6/17
Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
Jan 2018-July 2022: PSA's <0.008, T ~ 50
Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritisJune 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
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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 month)
5/20/22. < .02 (39 months). T=37
11/7/22. <.02 (45 months) T=54
5/8/2023 <02 (51 months)
3 Part Modality Treatment Completed
2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery his #41st 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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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: 57
PCa History: Father, Grandfathers, Uncles
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
Jan17 RALP - Pathology = pT3a; Gleason 4+3; Weight: 42g - Dr. Grant Taylor
AMS800 Dr. David Rapp @ UVA:
Jun19 Installed; Jul19 Activated; Sep22 Failed; May23 Revision
PSA_TESTS: Apr16-5.10, Jul16-4.70, Aug16-5.13, 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, Sep22<0.10Comment
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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 N0Dec 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 RemissionJan'17: began Lupron ADT, uPSA's ~.03
May'17: AMS800 implanted, revised 6/17
Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
Jan 2018-July 2022: PSA's <0.008, T ~ 50
Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritisJune 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
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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: 57
PCa History: Father, Grandfathers, Uncles
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
Jan17 RALP - Pathology = pT3a; Gleason 4+3; Weight: 42g - Dr. Grant Taylor
AMS800 Dr. David Rapp @ UVA:
Jun19 Installed; Jul19 Activated; Sep22 Failed; May23 Revision
PSA_TESTS: Apr16-5.10, Jul16-4.70, Aug16-5.13, 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, Sep22<0.10Comment
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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 month)
5/20/22. < .02 (39 months). T=37
11/7/22. <.02 (45 months) T=54
5/8/2023 <02 (51 months)
3 Part Modality Treatment Completed
2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery his #41st 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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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 recommendationsComment
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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 month)
5/20/22. < .02 (39 months). T=37
11/7/22. <.02 (45 months) T=54
5/8/2023 <02 (51 months)
3 Part Modality Treatment Completed
2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery his #41st 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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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: 57
PCa History: Father, Grandfathers, Uncles
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
Jan17 RALP - Pathology = pT3a; Gleason 4+3; Weight: 42g - Dr. Grant Taylor
AMS800 Dr. David Rapp @ UVA:
Jun19 Installed; Jul19 Activated; Sep22 Failed; May23 Revision
PSA_TESTS: Apr16-5.10, Jul16-4.70, Aug16-5.13, 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, Sep22<0.10Comment
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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 month)
5/20/22. < .02 (39 months). T=37
11/7/22. <.02 (45 months) T=54
5/8/2023 <02 (51 months)
3 Part Modality Treatment Completed
2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery his #41st 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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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.Originally posted by MRJ View Post
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 month)
5/20/22. < .02 (39 months). T=37
11/7/22. <.02 (45 months) T=54
5/8/2023 <02 (51 months)
3 Part Modality Treatment Completed
2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery his #41st 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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Long time no post.
In the world of Urology here in SW VA, things move slowly. Usually averaging 6 - 8 weeks to get a Uro appt.
My PCP referred me to the local Uros. The uro there that did the prosthetic surgeries had left. The uro I saw got bug eyed and said no dice.
Two months later, I'm seeing the surgeon who did the implant. We disagree on the cause of the failure. I think the pump failed, he thinks it's something else. They are going to schedule to exploratory procedures on same day. I'm told this could be problematic due to getting both specialists there on the same day.
Two months go by. No appt. I call. I get sincere apologies for no follow up and appt scheduled for (yes, 6 weeks later).
So in mid March, I'll be getting a cystogram? So the doc can see if something happened to my tubing. Interestingly the instructions state I should arrive with a full bladder. Not really sure the specialist got the incontinent message.
I'll update after the process. (I'm still holding to a device failure.)
Age Dx: 57
PCa History: Father, Grandfathers, Uncles
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
Jan17 RALP - Pathology = pT3a; Gleason 4+3; Weight: 42g - Dr. Grant Taylor
AMS800 Dr. David Rapp @ UVA:
Jun19 Installed; Jul19 Activated; Sep22 Failed; May23 Revision
PSA_TESTS: Apr16-5.10, Jul16-4.70, Aug16-5.13, 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, Sep22<0.10Comment
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I don’t believe a Cystoscopy is going to reveal much. They will inactivate the AUS for insertion and then activate and watch the operation, which you already know doesn’t work.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 month)
5/20/22. < .02 (39 months). T=37
11/7/22. <.02 (45 months) T=54
5/8/2023 <02 (51 months)
3 Part Modality Treatment Completed
2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic, Dr. Kaouk, surgery his #41st 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.
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