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New here with some(probably) familiar questions

jeffman
Posts: 20
Joined: Oct 2017

I had robotic procedure 5 weeks ago and ,although I have been improving daily, the pace of improvement has slowed considerably. Still going through multiple pads/day and still getting up 4-6 times each night to urinate/change pad. Even when limiting fluid intake before bed I get up. Where is it all coming from? I get a much steadier stream than before but still lots of leaking. My wife and the docs say I'm impatient after 5 weeks and i realize that they are right. I'd just like to hear from others that have dealt with this in real life.I guess misery loves company.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3229
Joined: May 2012

Welcome to you Jeff.

Urinary control following RP varies dramatically between men.  I also had DaVinci. While I only required diapers 2 days after the cath was removed, I can't recall how long I wore pads. But I certainly didn't have to change so often as you currently are; my control was fairly good after only a week or so.  After pads, then liners.

Other men never regain continence, and some even have to have implants or devices for control, years after surgery or whatever.  So "average" falls somewhere in between these extremes.

Five weeks post RP is not long in terms of recovery.  Sexual potency can easily, easily take 6 months or much longer, for instance.

I assume you were taught Kegel exercises regarding this. If not, call today and get trained. My urology group (a dozen or so surgeons) has a full-time RN who does noting but Kegel therapies and training.

Also, be certain that you are taking daily cialias for blood flow to the penis. Cialias at your point ins NOT to give erections, but to maintain vascular health "in the area."  Blood vessels left unattended can atrophy and cause much worse ED months and years later, so be sure this is going on with you now.

In the mean time, if your surgery was successful in curing the cancer (based on the pathology report), think more about no longer having a potentially fatal disease that about the pads.

I'm glad you joined and I hope you continue here with anything you feel anyone here might be able to address,

max

jeffman
Posts: 20
Joined: Oct 2017

Thanks Max.

Pathology does indicate that lymoh nodes and surrounding soft tissue were not involved and a follow up in January will dictate any future treatments. As far as the current state of continence (or lack thereof) I am doing kegels.  I do have a couple things that might possibly slow progress. One is age (65) and the other is a beer gut. (working on that one) I just gotta give it a little more than 5 weeks and be happy where I am as opposed to where I was.

I'm sure this site will be a help. Glad I found it.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3229
Joined: May 2012

Jeff I was 59 at surgery, so about the same age.  A beer gut or generally overweight (also characteristics I shared with you) do make control harder.

And if you are driniking much beer, know that for some reason if I drink more than a few beers I lose control myself. It is something about the alcohol relaxing the spincter or whatever, but NOT DRINKING might improve your situatuion a lot, fast.  Beer is a no no for me, still today.

max

Clevelandguy
Posts: 415
Joined: Jun 2015

Hi,

I would give it more time, you still have a lot of healing to do.  As long as you are making some progress on a weekly basis I would not be all that worried.  I had healing or improvement well past year one after my RP procedure .  Can't beat daily improvement how ever slight it is.  Kegals, walking, get out and enjoy life will all improve your mental outlook a lot. Good luck................


Dave 3+4

Will Doran
Posts: 207
Joined: Sep 2015

Jeff,

Give it time.  I'm 4 years post surgery.  My PSA was 69, Gleason 7 when diagniosed.  I had no symptoms.  Robotic surgery in Dec, 2013. Post surgery pathology had me as aStage pT3bN1.  That's just a "tick" below a Stage 4.  One lymph node involved.  Very small spot that didnt' show in mt MRI's.   I am now 4 + years past diagnosis, and my PSA is still holding below 0.5.  Kegals, Yes. Exercise, Yes.  This isn't an easy thing to go through.  This past year my leakage has almost spotted.  I still wear pads just in case.  It depends on lifting, stretching and such things.  But it has gotten better.  Still get up around 4 times per night.  I do not cut back on fluids.  My doctors have told me to keep flushing fluids.  I understand that you wonder where it all comes from.  Strong Stream, Yes.  And I just had a Kindey Stone "blasted" and have to drink, drink, drink, trying to get that flushed out.  Since I have to strain my urine to see if the stone fragments come through, It's amazing the amount I pass.  Some times, my blood tests show that I am on the edge of dehydrated.  My Dr. Checks that every set of blood tests, and keeps telling to me keep the fluids flowing.  So, be careful with cutting back on fluids.  That has been my experience.  I'm not a doctor, but can only share what I've experienced.  Oh, if you are a drinker of alcohol,  as suggested by my doctors, a little Bourbon ( my doctors Favorite), or my favorite Vodka per day.  Just one small drink.  However ask about that first and get your doctor's blessing.  But water and more water.  

Drink, Flush, Drink, Flush, Repeat, Repeat.  Just my suggestion.

Give it time, you have a lot of healing to go at this point.  

Good Luck

Love, Peace and God Bless

Will 

 

Grinder
Posts: 437
Joined: Mar 2017

Average time lapse for significant improvement from incontinence is three months. I was about six months removed from RP but I was not at all worried before that because the surgeon had to remove a large prostate, but avoided any other damage because the cancer was confined to the "caspsule". So, judging from your prognosis, you probably had adequate nerve sparing and should have a correctly normal recovery that will still take time, up to six months, even a year. The short recovery times are exceptions to the rule. I was told from the beginning to expect three months or more.

CleanGene
Posts: 5
Joined: Nov 2017

I posted simiilar coments concerning leaking. I'm new to this game. My prostatectomy was Nov 28, 2017, and catheter was removed Dec 5 - just 10 days ago. I'm dry overnight, waking up 2-3 times to pee. Throughout the day, I drip, drip, drip.  Not too bad if I'm sitting, but if I'm up and about, it's happening. I kegel, I exercise, I pray.  Don't know what to expect. I am using 3-5 pads per day.  I am looking for signs that things are headed in the right direction. I understand that "gravity" keeps the urine in place when I sleeping.  It would be helpful if someone would develop a chart that presents typical  recovery progress; signs that things are getting better. It's discouraging right now, but I am thrilled the cancer was cut out and the post-surgery path report  was negative. As we struggle in life, sometimes all we need is a little affirmation that we'll be OK.. I know it's way too early for me to expect the leak to stop, but would like to know a bit more about the road ahead. 

eonore
Posts: 29
Joined: Jun 2017

Hi Gene,

I think that everyone is different in terms of regaining continence, but to the extent it helps, I will tell you my experience so far.   I had my surgery on October 2, 2017.    The surgery lasted ten hours due to the size of my prostate and my size (large).   My Doctor had warned me that given these two factors, I needed to be patient in terms of recovery of continence.   Initially it was a nightmare.   I was wetting the bed at night and had to use multiple pads to protect the linen, so that I didn't have to do laundry in the middle of the might.   I was using six to eight pullups a day.   To my surprise, in about two weeks after surgery, I was able to get through the night with the same pullup.   Gradually over the next six weeks I have been able to decrease the number of pullups I need during the day.   At the present time I am using one pullup during the day and one at night.    I am virtually dry at night and use the pullup just in case.

I am very pleased and a little surprised with this progress.   However I am prepared to be patient about futher progress.   I have talked to a lot of people, and it seems that six months to make significant progress is not uncommon.   For example, I have a friend who opted for surgery even though he was a Gleason 6.  His prostate was barely enlarged.   He had his surgery in April, and he still has a little leakage during the day.   He uses one pad a day.

I wouldn't worry about it at this point.   Nighttime progress is first, and the rest will follow.   Statistics say the at one year, something like 95% of all patients are   mostly continent.   If after a  month or two, you don't see any progress, I would speak to the doctor about physical therapy.

 

jeffman
Posts: 20
Joined: Oct 2017

Approaching 3 months and there has been some improvement. Still getting up at night and using pads but to a lesser extent thatn before. Much better at night and a little better during the day.

I could probably cut down on pad use but I still go through 5/day and 3 a/night mainly as a precaution. I learned the hard way that it's better to change them too much than to let them go too long!

Patience is a virtue dealing with the incontinence issue. I'm just glad I can see improvement,even though it's not exactly rapid. Another thing I noticed is that some days are better than others. At this point I know things will eventuall be much better. 

On a more personal and unrelated note I have also found that even though there is no erection/ejaculation anymore-orgasms are as pleasureable as ever. So I got that going for me!

Happy Holidays to all.

Grinder
Posts: 437
Joined: Mar 2017

Your recovery sounds right on schedule. Incontinence will continue to gradually improve until you are down to a minipad, probably in 6 to 12 months. ED takes 1 to 2 years average to improve. I did not expect ED improvement, but after a year and a half I am nearly there, about 90% recovered from ED.

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