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I just turned 62 and Prostate issues are our family curse.
My dad has had issues for a long while and while he has not had his removed and does not have cancer he has had the roto rooter a couple of times so years ago I knew my time was most likely limited and I was a candidate.
The first urologist I went to had the bedside manner of a rock. We did a biopsy and I was told I was good but there “could” be something there so he suggested we do it again. I had to pay cash for these due to insurance deductibles (not fun). The second result we got he said “well there is something there but I would not worry about it, it grows slow and you have many years and will most likely die before you are affected” so I went on my way.
About a year later as I was contemplating moving the TV into the bathroom, I was starting to study my condition more as it really was affecting my quality of life. Every where I went the first thing I looked for was the bathroom and I was up at least 4 times a night. Out with friends I was always in the bathroom.
My PSA was now around 8-10 and climbing so something was for sure up!
My wife works at a hospital and told me of a doc on campus that was supposed to be one of, if not the best surgeons in the US. From what I was told, all of the Doctors with Prostate issues came to to see him and as I learned, he has done over 500 robotic removals.
After a visit, I really liked him and he suggested a trip to their new MRI that works really well seeing the prostate in detail. When those results came back, something was there so he did a in-depth biopsy (fun but I was asleep). After the results come back I was told I was at stage 3+ and from what he could see it looked like it “could” be contained but you never know.
I went home with the O shit I have cancer feeling and came back to see him a few weeks later. When given my options of waiting and monitoring or having it taken out I ask what would happen if I did nothing. The answer was "most likely 5-7 years" so I elected radical prostatectomy via the robot and we did the surgery on August 21 2019.
There were so many questions I should of ask but did not know to ask. I read all I could and after talking more, was confident in my Doc. He said I most likely I would have to wear a small pad sometimes for “just in case” leaks but that was all.
If I knew then what I know now I am pretty sure I would have taken the 5-7 years.
The morning of the surgery the Doc ask how I was feeling I told him apprehensive but confident. He thanked me for the confidence in him and I was rolled in. I remember laying on the table as the surgery began and them going through the protocols and starting the Propofol. I chuckled and ask who invented Propofol and as the lights were starting to dim the last thing I heard was one of the nurses say Michael Jackson ;-)
5 Hours later I woke up, and said out loud, well I don’t see velvet fabric or dirt so everything must of gone OK! After the nurses broke out laughing (my care was really good) I was told the surgery went great. I was beat up, as was expected after having seven holes cut in me and my belly being blown up 7-10 times normal size so a robot could poke, prod and cut on me. Doc said the nerves were mostly saved and I should be good.
Weeks later, my PSA was 0 (and still is), so, we got the cancer in time. What I remember the most was having the catheter removed a couple of weeks after surgery. It felt like someone reaching in my penis all the way up and pulling my head out the hole! Thank God it was quick and no one had told me what was going to happen.
Two + years have now past and my troubles are still here. I am still up 2-3 times a night, I can barely get a small erection even using all of the drugs (anybody got any suggestions) and apparently, even after working hard with what felt like millions of Kegels each day, my Sphincter did not heal properly. I am leaking, a lot, and having to change the heavy duty pads 6-10 times a day. My quality of life is gone. I find I am staging these dam pads everywhere, in all of the cars, coat pockets, in and around my desk, in a cabinet at my shops bathroom plus, its just plain embarrassing as these pads leak even when used properly (I have lots of experience). I’ve tried tight underwear and pants, and still my pants get wet. I even quit drinking for three days once to see what would happen (don’t do that). I find I am running to use a hair dryer or heat gun to dry out my pants and undies so I can keep a semblance of a normal schedule and God forbid if I try to go on a small hike or ride my motorcycle on a trip!
My doc was shocked and says this is a very very rare occurrence, 1 in thousands! He suggested I see a colleague of his that specializes in options for me. I saw her and after discussion she grabbed my balls and said cough, I said you really don’t want me to do that and she said go for it, naturally I peed all over her hand. I told you so! ;-)
During this visit and after doing my homework, I ask about having a urethral sling put in. She said it will not help me at my stage. I ask about that fancy Emsella machine and she said it is not covered by insurance, is expensive, doesn’t/won’t work and to save my money. She said my best hope is for the Artificial Urinary Sphincter so I went home to study more.
So after this long story and after reading on this forum for a few days and after having bad thoughts and putting the gun away several times, I am here to see if any of you actually have this AUS device and could answer some questions?
To me, it looks really invasive, I am reading it last only 5 or so years, rubs you raw and there is a large chance of infection.
So…..
Did it work for you?
How long have you had it?
Who was your doctor (if you want to say)
Do you still leak?
If so are you wearing the big pads or the lite pads? Now many a day?
Can you feel it as you walk around?
Is it hard to operate, squeezing your balls?
How much time do you have once you push the button?
Did you have to have a catheter ?
Did it hurt?, Does it still hurt.
How long before you could ride a bike, run or hike?
What am I not asking that I should be asking?
Before this surgery I was really active, I am a small business owner, a pilot flying small planes, experimental planes, sailplanes, hang gliders and ultralights. I am a motorcycle addict with three different bikes, I love to hike and travel. Yes, I am happy to be alive but all of my quality of life is now gone. I am gaining weight, cant get it off and if I knew then what I know now I am pretty sure I would have taken the 5-7 years. I just don’t know if I can go on living like this.
Thanks for reading
My dad has had issues for a long while and while he has not had his removed and does not have cancer he has had the roto rooter a couple of times so years ago I knew my time was most likely limited and I was a candidate.
The first urologist I went to had the bedside manner of a rock. We did a biopsy and I was told I was good but there “could” be something there so he suggested we do it again. I had to pay cash for these due to insurance deductibles (not fun). The second result we got he said “well there is something there but I would not worry about it, it grows slow and you have many years and will most likely die before you are affected” so I went on my way.
About a year later as I was contemplating moving the TV into the bathroom, I was starting to study my condition more as it really was affecting my quality of life. Every where I went the first thing I looked for was the bathroom and I was up at least 4 times a night. Out with friends I was always in the bathroom.
My PSA was now around 8-10 and climbing so something was for sure up!
My wife works at a hospital and told me of a doc on campus that was supposed to be one of, if not the best surgeons in the US. From what I was told, all of the Doctors with Prostate issues came to to see him and as I learned, he has done over 500 robotic removals.
After a visit, I really liked him and he suggested a trip to their new MRI that works really well seeing the prostate in detail. When those results came back, something was there so he did a in-depth biopsy (fun but I was asleep). After the results come back I was told I was at stage 3+ and from what he could see it looked like it “could” be contained but you never know.
I went home with the O shit I have cancer feeling and came back to see him a few weeks later. When given my options of waiting and monitoring or having it taken out I ask what would happen if I did nothing. The answer was "most likely 5-7 years" so I elected radical prostatectomy via the robot and we did the surgery on August 21 2019.
There were so many questions I should of ask but did not know to ask. I read all I could and after talking more, was confident in my Doc. He said I most likely I would have to wear a small pad sometimes for “just in case” leaks but that was all.
If I knew then what I know now I am pretty sure I would have taken the 5-7 years.
The morning of the surgery the Doc ask how I was feeling I told him apprehensive but confident. He thanked me for the confidence in him and I was rolled in. I remember laying on the table as the surgery began and them going through the protocols and starting the Propofol. I chuckled and ask who invented Propofol and as the lights were starting to dim the last thing I heard was one of the nurses say Michael Jackson ;-)
5 Hours later I woke up, and said out loud, well I don’t see velvet fabric or dirt so everything must of gone OK! After the nurses broke out laughing (my care was really good) I was told the surgery went great. I was beat up, as was expected after having seven holes cut in me and my belly being blown up 7-10 times normal size so a robot could poke, prod and cut on me. Doc said the nerves were mostly saved and I should be good.
Weeks later, my PSA was 0 (and still is), so, we got the cancer in time. What I remember the most was having the catheter removed a couple of weeks after surgery. It felt like someone reaching in my penis all the way up and pulling my head out the hole! Thank God it was quick and no one had told me what was going to happen.
Two + years have now past and my troubles are still here. I am still up 2-3 times a night, I can barely get a small erection even using all of the drugs (anybody got any suggestions) and apparently, even after working hard with what felt like millions of Kegels each day, my Sphincter did not heal properly. I am leaking, a lot, and having to change the heavy duty pads 6-10 times a day. My quality of life is gone. I find I am staging these dam pads everywhere, in all of the cars, coat pockets, in and around my desk, in a cabinet at my shops bathroom plus, its just plain embarrassing as these pads leak even when used properly (I have lots of experience). I’ve tried tight underwear and pants, and still my pants get wet. I even quit drinking for three days once to see what would happen (don’t do that). I find I am running to use a hair dryer or heat gun to dry out my pants and undies so I can keep a semblance of a normal schedule and God forbid if I try to go on a small hike or ride my motorcycle on a trip!
My doc was shocked and says this is a very very rare occurrence, 1 in thousands! He suggested I see a colleague of his that specializes in options for me. I saw her and after discussion she grabbed my balls and said cough, I said you really don’t want me to do that and she said go for it, naturally I peed all over her hand. I told you so! ;-)
During this visit and after doing my homework, I ask about having a urethral sling put in. She said it will not help me at my stage. I ask about that fancy Emsella machine and she said it is not covered by insurance, is expensive, doesn’t/won’t work and to save my money. She said my best hope is for the Artificial Urinary Sphincter so I went home to study more.
So after this long story and after reading on this forum for a few days and after having bad thoughts and putting the gun away several times, I am here to see if any of you actually have this AUS device and could answer some questions?
To me, it looks really invasive, I am reading it last only 5 or so years, rubs you raw and there is a large chance of infection.
So…..
Did it work for you?
How long have you had it?
Who was your doctor (if you want to say)
Do you still leak?
If so are you wearing the big pads or the lite pads? Now many a day?
Can you feel it as you walk around?
Is it hard to operate, squeezing your balls?
How much time do you have once you push the button?
Did you have to have a catheter ?
Did it hurt?, Does it still hurt.
How long before you could ride a bike, run or hike?
What am I not asking that I should be asking?
Before this surgery I was really active, I am a small business owner, a pilot flying small planes, experimental planes, sailplanes, hang gliders and ultralights. I am a motorcycle addict with three different bikes, I love to hike and travel. Yes, I am happy to be alive but all of my quality of life is now gone. I am gaining weight, cant get it off and if I knew then what I know now I am pretty sure I would have taken the 5-7 years. I just don’t know if I can go on living like this.
Thanks for reading
. Thank god for the bottle of oxy! Now to get rid of this catheter in a few days and heal for 6 weeks before throwing the switch.