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Posted 6/25/2014 9:52 AM (GMT -5)
It has been 13 months since my surgery, last PSA a month ago was <.02. The problem I still struggle with is that I still leak and I go through a pad a day. I know that I am in a better position than some of me fellow PC brothers but this is getting me down. Should I be asking my surgeon for options that may help me.
Posted 6/25/2014 11:04 AM (GMT -5)
My husband aged 53 had a radical prostatectomy on May 1st this year. He had a Gleeson score of 3+4 and had clear margins, with no seminal vesicle involvement or no lymph node involvement. There was 70% involvement of the prostate gland when the pathology report came back. The surgery was nerve sparing. He has recovered quite well. However he has major incontinence issues. He is using 4-6 pads per day. He is dry at night but there seems to be no improvement during the day.
One pad per day sounds good where I am. He is quite depressed over this.
Posted 6/25/2014 11:23 AM (GMT -5)
Pww,

Of course you should. But the first step isn't necessarily surgery. Many men find pelvic floor physical therapy and/or biofeedback training helpful and there are drugs that help somewhat as well. I know a lot of guys with slings and artificial sphincters and they do work, but try the easy stuff first.

Peems,

It's early days for him yet. While there are a few guys who are continent when the catheter comes out, the majority are leaking at six weeks and one third still leak at three months. Of those who leak at three months the majority will be dry inside a year. It takes a while for the stitches to be absorbed and a while longer for the scar tissue to thin and become more supple. If he isn't seeing any improvement in another month he might ask his urologist about pelvic floor physical therapy.

And like I told Pww, there are ways to make almost anyone dry. So he shouldn't feel like the diapers are a permanent feature of his new life.
Posted 6/25/2014 4:39 PM (GMT 0)
PeterDisAbelard, thanks. Your reply was very, very helpful to me. Thank you !
I had my surgery just 4 weeks ago, and see my doctor in 3 weeks.
This place has been so helpful with my emotional recovery too

Prostate cancer treats us all so differently, but it sure is a life changer for EVERYONE.
Posted 6/25/2014 2:48 PM (GMT -5)
PeterDisAbalard, many thanks from me also. This forum is so good to get advice and support. While this is my first time to make a posting, I have been diligently following this forum as I started on this prostate cancer journey with my hubbie. We live in Ireland and its great to share worldwide information on this subject.
We are back to consultant on July 11 th and will have our first post op PSA test done so fingers crossed.
In the meantime we will keep up the kegels and hope there is an improvement in the continence situation.
Posted 6/25/2014 3:32 PM (GMT -5)
Pwww099,
Peter gave you good advice, try everything else before you go to the surgeon. I had to have an AUS installed at 22 months to end the leaking and I tried everything first but.............I was still leaking 3-5 pads daily. My surgeon told me to try to not wear a pad at home to try to train my brain to go with out a pad. I tried but I was still leaking a lot. Try it since you are using only 1 pad. You are almost there. Good Luck

Peems,
Yes, none of us like the leaking part but with surgery, you have to go through it to get to the other side. Dry at night is the first step.
Sounds like your husbands surgery came out great. I was a Gleason 3+4=7 but I came out with 2 positive margins to be concerned with.

My family came from Ireland over 200 years ago so my last name begins with MC, that is why my forum name is "Big Mac".
Welcome to Healing Well!!

Bill from Florida cool
Posted 6/25/2014 4:15 PM (GMT -5)
At 13 months I was for sure going to be looking for something other than Kegels if I didn't improve noticeably! But like Peter says, maybe it doesn't have to be surgery just yet. Still, if surgery was required bring it in!

However, 3 months + ~ 3 weeks since the catheter came out, despite my previous pessimism, I am finally seeing noticeable improvement and am almost to a point where I can live with it. Almost all of the improvement has come in the last 2 or 3 weeks after what seemed to me almost no improvement for over 2 months.

I got my clamp the other day, and it works good for those times when the constant dribbling is just too much to put up with. (have only used it twice briefly) I used it on the hike in today. I stayed dry and had no noticeable urgency, no spasms. I peed and removed it for the hike out. I still stayed dry(but with some effort required) and had just one or two minor spasms. A few weeks ago I would have taken a precautionary- because it felt like I just couldn't hold it anymore- pee every 10 mins and still would have been quite wet, hiking was total misery! No problem the last 2 times. Still have a ways to go, but praise the Lord! If it had kept up for near it's worst 1 year, I for sure would have been looking to do something NOW!

Thanks to all of you who kept telling me I had reasonable hope of improvement and to hang in there!

Now does any one know anything to do about that lack of wood without shots/pumps thing and, oh yeah, pesky G9/SV+ thingy? ( wink wink )

Bill
Posted 6/25/2014 4:31 PM (GMT -5)
Bill,

Several suggestions occur to me for your lack of wood but I find myself constrained, both by the rules of propriety of this site and by certain words that it is probably unwise to type into a search engine here at work.
Posted 6/25/2014 8:34 PM (GMT -5)

PeterDisAbelard. said...
Bill,

Several suggestions occur to me for your lack of wood but I find myself constrained, both by the rules of propriety of this site and by certain words that it is probably unwise to type into a search engine here at work.

nono smilewinkgrin
Posted 6/25/2014 9:13 PM (GMT -5)
Hang in there...they say it gets better? My self at 7 months 15 days post op and if was only using a pad a day I'd be doing back flips and smiling!

Here is what I have been through so far... Quit my second job do to all the leaking, now working only on recovery and trying to get dry...been dry at night for about three months unless I have a beer or three...

Use on average 3-6 pads a day, but have had so e days which are great, just took a road trip from home upstate NY to Long Island and back two days and did great both ways, driving about 6.5 hours each way used only 1 pad able to drive, stop squeeze and make it to pee..success...

Been doing PT for pelvic floor for about four months, went every week for about an hour for a month now every other week, great stuff highly recommend it, used bio feedback that shows the pelvic floor working, manual stimulation, like massage, as well as a unit with probe that is inserted anally, that delivers shock like a TENS unit while you squeeze the pelvic floor, also been walking for the past few weeks 3-5 miles a day five days a week, adding yoga next week, going to do what ever it takes to get dry...because it's no fun, sometimes you just have to laugh say screw it have beer or soda, relax and start over the next day!

I personally have let this entire thing overwhelm me, cried, been depressed, second guessed every choice, but know deep down inside I know and understand that it's better than the obvious op piste results had they never found this! And taken it out.

Thanks to everyone here, hope to be dry sooner rather than later, hope by fall to be pad free, thanks for all the positive support, good luck everyone.
Posted 6/25/2014 10:06 PM (GMT -5)
Paul: "been dry at night for about three months unless I have a beer or three".

Paul, what size was your prostate? My surgeon insisted that the best predictor of finally getting continent was being dry at night, which I was, but that my giant prostate would probably make it take a lot longer. Then I found some studies that indicated guys with large prostates indeed take a good bit longer but ultimately end up as dry on average as anyone else.

Paul: "I personally have let this entire thing overwhelm me, cried, been depressed, second guessed every choice, but know deep down inside I know and understand that it's better than the obvious op piste results had they never found this! And taken it out."

I can really relate to all of that, and have had some really negative emotions since my surgery and complications. But then I think of the funny young gal in my Sunday school class, about 5 years younger than me with no apparent health problems, lived about 5 days post brain aneurism and died Sunday. Weighing even more on me, I have a very close 39 yrs old family member and mother of 2 young children diagnosed with stage 4 Mesothelioma, no symptoms until a few weeks ago. So I just need to stop all of those negative vibes.
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