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Posted 6/21/2013 3:52 AM (GMT 0)
(I changed the topic name from "Not sure I want this life I saved". I hope the topic change worked. It seemed like emotional blackmail for a temporary confusion. The new topic name I think is a better description of what I wanted)
It seems a lot of people here walk out of the DaVinci surgery completely continent (after catheter removal). I've had the catheter out a week and the doctor seems to think that is sub-normal (compared to his normal result) because I can't even tell the pee is coming out 24 hours a day. Kegel exercises galore (exactly the number I was told to do) and no change. The doctor says he got it all. Doctor said most people leak just a little after the catheter is removed. He didn't mention being a human "copper tube". Can't even tell it's in the diaper until I feel the warmth.

Pathology report: T2C, Gleason 6 (was 7 on original biopsy), no seminal vesicle invasion, 19 node excised, no cancer there.

Post Edited (MHMyers) : 6/22/2013 12:44:23 PM (GMT-6)

Posted 6/21/2013 4:14 AM (GMT 0)
MHMyers,
Welcome to HW. I know this is a dark moment for you. But, plenty of men have been exactly where you are and then experienced significant improvement in short order. Five weeks leaves a lot of time to heal and improve. Your doctor may have overstated things when he said "most people leak just a little after the catheter is removed." Many men go through a significant leaking period after surgery. As hard as it may be to hear, patience is probably the key thing right now. It WILL get better. I am sure others will chime in with more thoughts and suggestions.
Southern Comfort
Posted 6/21/2013 4:20 AM (GMT 0)
There are plenty of people here in your shoes. The continence issue is a function of the skill of the surgeon, the way the surgeon had to cut to get all of the cancer, individual physiology.

The continence issue seems to get better over time but to go from where you are to fully continent in five weeks seems unlikely. However the practical experts are the ones that have been in your shoes so I will let them chime in.

All the best,
An
Posted 6/21/2013 4:35 AM (GMT 0)
When we decided on surgery, we knew the side effects that were possible. You have had the catheter out 1 week and you think you should be continent now? I am 11 months out and I use still 1-3 pads a day. I am a sales consultant, I am on my feet all day talking to customers in a furniture store. I managed as well as thousands of other men using pads. Many times I had to work with customers while I felt the warmth of pee filling my pad. I changed it as soon as I could, sometimes that was 1 hour later. I couldn't break away from a buying customer to get a fresh pad. Being a teacher is not that unique as far as not being able to go to the bathroom whenever you need to.

The side effects you are describing are NORMAL. You have had major surgery. It will take time to return to normal but this is the new normal so the sooner you accept it the better for you.
You will get through this but it will take time. I am going to tell you what my wife told me, she, like all women, had been on pads for many years for 1 week a month, get over it, she told me. She had no sympathy. She kept telling me that it was a small price to pay to have the cancer out of my body.

You are what appears to be cancer free. Look at your path report. Your Gleason score went DOWN! Many men like myself have our Gleason score go up after surgery.

Call it tough love but man up and deal with the side effects. We all have made it through to the other side and are dealing with the consequences. You are now a prostate cancer survivor.

Bill from Florida yeah
Posted 6/21/2013 5:25 AM (GMT 0)
Based on your pathology, you came out pretty clean. Incontinence is a normal side effect from a prostectemy. I f I read this post but the date was 6 months or longer, I would have more empathy. I understand you ain't liking it but lets work on a problem that you were aware of going in. But now we get to take care of the situation. Its really that simple. Its a problem that can be taken care of. Its cool to vent here, we're here for that. Can we at least meet first for a second or 2 before that happens, Just saying. . If you are hanging around with anyone that you think, thinks you are sub human, make that a first priority for change. You have a great future,I mean bright, shake off that first post, I don't even know you and can not imagine that that post is you. I will not imagine that is you, actually.
Posted 6/21/2013 6:13 AM (GMT 0)
Tewari and colleagues published an article on continence in Nature Reviews urology 2012. The article makes the mechanism sound very complex. Among other surprises, he cites articles suggesting the external sphincter muscle has smooth muscle with involuntary control as well skeletal muscle with voluntary control. He also lists 5 things the surgeon should do to allow early continence: 1) minimize damage to bladder;2) avoid any damage to external sphincter and nerve supply; 3) avoid and correct damage to passive collagen support structures; 4) have smooth anastomosis of urethra; 5) minimize mechanical compression of anastomoses.

Problems with any of these 5 will probably have to heal before you have full continence. Less than 50% are continent 3 months out.

You are not different than many men that regain continence. You probably have to heal a bit before you can play much of a role.
Posted 6/21/2013 7:30 AM (GMT 0)
Welcome

Sorry you're feeling unhappy about where you find yourself.

We all talk here about a prostate journey. And one trick on that journey is not to be the kid in the back seat who keeps saying "Are we there yet?"

One week after the cath comes out is very very much at the beginning of your period of recovery. I might even go as far as to say that it it perhaps the low point, as at about two weeks after surgery you can start to feel that surgery is behind you as the scars are healing up there is less aching etc in your abdomen, you taking less or no pain meds now, and Hey! you've got rid of that pesky cath. But on the other hand there is often almost no measurable sign of improvement on the continence front and you're dreading the idea that you've got ED.
Howerer, if you could still see inside your abdomen, then you'd be able to see that the surgery area was defintiely not yet healed. There will be all kinds of areas (especially round the baldder) that are swollen and trying to reposition themselves etc, there are probably also some stitches about and even blood clots. My docs also reckoned it might be as long as two weeks before my liver and kidneys finished processing all the drugs put into my system. You should have been started on antibiotics the day the cath caem out so they will take a while yet to work their way through you. And antibiotics can mess with your digestion.
And you've been told to do Kegels, but they don't seem to be helping, but have you also been told that if you do too many kegels you can make things worse!
You've also been told to take plenty of exercise, but again too much exercise will make things worse.

Some people here have found that what they eat and drink doesn't affect their bladder, but others have had to change their diets to keep away from
caffeine, alcohol, soda, spicy foods etc.
And of course your bladder is that bit of your body that can react to you being worried or anxious, so you can accidentally steer yourself into a vicious circle sometimes. To paraphrase FDR "We have nothing to worry about except worrying about things."

Inside some of our heads it was totally impossible to detect any change whatsoever between say Day 16 and Day 17. But there are also a few of us with too much time on our hands who have actually opted to measure "output" and therefore we were able to conquer our perceptions, by being able to see on paper that there had indeed been improvements.

I expect, therefore, that in another week and then another month you will be much more in control.

As for your job, as others have already said they have simply had to adjust to the idea that when interacting with other people during the day you may be peeing in your pants. And I recall a couple of guys here who talked about doing so when having to stand up and give lectures. (I think Mel may have been one?)
Sure it's not pleasant, but if you change pads at the right time to keep ahead of the volume you produce you will manage.

And this is as good a place as any to say thankyou to teachers round the world. People can often look down on the job of teachers, but the kids that they teach grow up to become engineers, doctors, scientists, lawyers, businessmen, writers, musicians, accountants, servicemen etc, and of course idiots like me.

So with my best wishes

Alf
Posted 6/21/2013 9:23 AM (GMT 0)

MHMyers said...
It seems a lot of people here walk out of the DaVinci surgery completely continent (after catheter removal). I've had the catheter out a week and the doctor seems to think I am sub-normal because I can't even tell the pee is coming out 24 hours a day.

The doctor thought you were "sub normal"? Well, I guess I was too.

I can't speak to the issue of "a lot of people here walk out of the DaVinci surgery completely continent", but that was never my understanding. It was more like, "some do and some don't."

In my case, I was about the same as you immediately after the catheter was removed. As the weeks went by I noticed the pad changes reduce slowly, and it took what seemed like forever to get control. I continued to walk, do kegels and drink lots of water. But after about six months - guess what? Completely dry, no pads needed... ever. Back to normal.

So just as a suggestion, wait a few weeks, maybe a month or so, to see if things begin to change. The future may be MUCH brighter than you think.
Posted 6/21/2013 10:15 AM (GMT 0)
- so sorry to hear you feel so negative about yourself and your choice for surgery.
- As others had stated - you have been through major surgery and it will take time for your body to recover from the trauma and start talking to its other re-aligned bits.
-it can take 14 - 16 weeks for bladder control to begin - it all depends on the surgery - location of the cancer - what is left over and your healing time -
-you made it sound like the doc was mean to you - calling you sub-normal - but that could be his knee-jerk reaction to a less than stellar immediate outcome ( "It's not my fault - it's yours) - which makes his more like a jerk ( regardless of format of surgery)

1- you will get through this
2- things will get better - you may become 100% dry in time - you may not - many are not, and they cope ( or seek additional surgical intervention- ie. the lsing)
3 - don't beat yourself up over this - you beat up the cancer - CELEBRATE !

-wishing you patience and peace,
hugs,
Bronson
Posted 6/21/2013 10:49 AM (GMT 0)
After my robotic surgery I had no control for like 7 weeks and then things turned around. At about 3 - 4 months the only time I had problems was when exercising.

Hang in there. I felt the same way, but you will find your old life again soon.
Posted 6/21/2013 11:18 AM (GMT 0)
MHMyers,

I agree with all the posters above. Patience is the key when you body needs to heal.

Your perception that "a lot of people here walk out of the DaVinci surgery completely continent" is not consistent with my experience on HW or reading medical literature. While some people have been unusually fortunate to be mostly continent after the catheter was removed, it is definitely unusual.

If you are not yet seeing good progress in a few weeks, ask your doctor about biofeedback. That's a program where a small probe is inserted in your backside, and a computer monitors your kegel exercises. The doctor/nurse can help you to learn how to focus your kegels on the muscles that are most important. And, the biofeedback system will give mild electric shocks to those muscles to force tight contractions and strengthen the muscles. I did a few of those biofeedback sessions before surgery to strengthen the muscles. bluebird's husband had serious continence issues after surgery, and he had significant improvement with the help of biofeedback.

-Gedman
Posted 6/21/2013 12:49 PM (GMT 0)
MH-

Some guys get lucky some don't. I've been where you are. It sucks. But it gets better.

Your doctor said...
it won't get better unless I can go when I first start feeling the urge, and then extend the time a little bit. Peeing in my diaper will doom me to permanent incontinence.

He either misspoke or was misquoted. There is no way for your sphincter to know about the diaper. What will hinder your recovery is making no effort at control. You can get exactly the same medical effect by picking out a corner of your classroom and designating it your personal imaginary "men's room". Draw a mental dotted line around a spot and then do your level dammednest to only pee in your diaper when you are standing in your invisible circle.

When I was where you are -- one week out from catheter removal -- I was 100 percent incontinent while standing up. I could hold it while sitting, lying down or reclining but when I stood up, whoosh. My goal at that point wasn't to get to the toilet with a dry diaper, it was to get to the toilet with something left when I got there. I gradually achieved that goal. Then I worked on distance. When I started biofeedback one of my stated objectives -- something I would consider a milestone in my progress -- was to be able to walk a mile and then step up to a urinal and manage a squirt. I got there. Then I gradually increased the squirt to a modest pee. Managed that, too. It is slow for some guys. At one year I am out of the "Depends"-style pull-ups and wearing big-boy underwear again with "Guards"-style stick-in pads. I use one pad a day on weekdays As a computer programmer I sit for a living and I leak more while standing. On weekends I ofter will use two. I am still improving but I may wind up talking to my doctor about a sling at some point to see if I can get dry.

That'd be nice. But in the meanwhile I am OK. And you will be too.
Posted 6/21/2013 12:54 PM (GMT 0)
Alf summarized what I would tell you pretty well.

At a week out, I had no control at all. None. It was several months before I made any significant improvements, and even now still us a pad or two a day for leaks. 

The biggest improvements for me came when I spread the Kegels out over the day, and split my one long walk into several, done at the same intervals as the Kegels. As well, totally stopping coffee, orange juice, and anything carbonated/sparkling helped significantly.

The guy who got his cath out before me was dry as a bone, and stayed that way. I flooded the exam room floor. Same surgeon, same procedure.

It is much to early to even evaluate where you are. There is a lot of healing to be done yet. I often tell people that the biggest disadvantage of DaVinci surgery is that the holes are too small. It leaves you the opportunity to try to think that not much was done, and you should be healed faster. The internal impact is the same.

Hang in there.

Posted 6/21/2013 1:08 PM (GMT 0)
We all know how you're feeling.  The side effects of a prostatectomy can be discouraging and depressing.

Still, and I don't mean to sound harsh, the first thought that occurred to me when I saw the title of your thread was that I'm pretty sure it wouldn't be hard to find thousands of children and adults who would gladly trade their situations for that life you don't think you want.

My older brother does a lot of work with St. Jude's, raising money for children battling cancers.  I'll bet any of those little kids dying so young would switch places with you in a heartbeat and not care a bit about having to wear diapers and pads.

Our brave military men and women coming back from war zones minus limbs, or with brain damage, or with other disabilities would probably also accept the life you now find yourself living in exchange for the one they're going to have to live with for the next 50 years. 

If you have children, or grandkids, or a wife.....I'll bet they think the life you have is just as precious today as it was prior to your surgery, and probably more so.  I'm pretty sure they're thanking God you're still present in their lives, incontinent or not.

I'm not trying to minimize the impact of coming to terms with (temporary) incontinence.  I'm just saying that you can't let yourself lose perspective.  Be patient.  Give your body time to heal.  Focus on the positives in your life. 

And, as someone said previously, there are medical options to help correct permanent incontinence, if that should turn out to be true in your case.  Someone mentioned the sling. 

Hang in there and keep moving forward.  Patience.  Good luck to you, my friend.

 

Posted 6/21/2013 1:38 PM (GMT 0)
Sorry that your incontinence is not playing by the rules. It may seem an overwhelming task at this time, but I think with the good fortune of your post op results and some (or a lot) of patience and will power, you will be able to get this under control. I do know that there are options available if you cannot do it by yourself, but being fairly new to this I will let others with more knowledge chime in on that. On removal of my catheter I also was pretty much a steady leak for several days. Then things started getting better until I began trying to get around more, at which time the flood gates opened up again. 3 weeks later I was much improved so I started walking for exercise again. One morning I stopped to talk with a neighbor in the midst of my walk and noticed my entire front side was soaking with urine, right through the pad and all. I didn't even realize it was happening. Getting to the point, somewhere around week 5-6 the incontinence improved drastically and now at 7 weeks post op I am using 1 shield/day, and 1/pad at night just in case (usually dry in the morning). Give it some time, I'm sure your improvement is coming soon. Hang in there.
Posted 6/21/2013 1:52 PM (GMT 0)
Welcome aboard, sorry you need to be here, but glad you are.

Be fair to yourself. You have had the cath out for only 1 week per your post. Yes, a few men are "dry" immediately, most aren't. Not sure why your surgeon would tell you that you were "sub normal", not a very encouraging thing to say to a man so soon out of a complex surgery, whereby your entire "plumbing" has been severely re-worked.

You have already been given great advice by the other posters, the key word, and I bet you don't won't to hear it again, Patience. Lots of patience.

You are not doomed to be incontinent forever as you indicated (highly unlikely scenario). There are things you can do to help yourself, i.e. the exerecises described above. Many men go back to very physical jobs while still incontinent. There are all kinds of tips at HW PC, about how to dress, how to deal with pads/pull ups, etc.

For most, incontinence fades in little steps at the time, not one giant rush of improvement. Many start out being dry at night, then sitting up, then standing up. That seems to be a very normal route of progress.

Don't beat yourself up, you aren't very far out of this major surgery, no reason to give up hope that you won't become dry again.

david in sc
Posted 6/21/2013 2:12 PM (GMT 0)
Thanks to all.

I actually was fine until I talked to the nurse about everything just pouring straight through. The doctor had not discussed incontinence with me at all, except to say it "would be minimal". You guys have made me feel normal again.

It seems I am completely normal, not sub-normal, and that helps a lot. Thanks, guys.

Post Edited (MHMyers) : 6/21/2013 7:47:37 PM (GMT-6)

Posted 6/21/2013 2:18 PM (GMT 0)
I can relate because my cath was in 10 days after open RRP and is out just 2 weeks today.

Robotic surgery is cool technology which may be a good choice for many but it is unfortunate that it is being so heavily marketed and oversold. There is no evidence that it offers better continence outcomes versus traditional open surgery. It is unfortunate if this contributed to unrealistic expectations for you.

Personally I was under no such illusions but still I doubt anyone who was previously fully continent can be truly prepared for how it feels once the cath come outs. It is an unpleasant, alien and humbling experience.

But, in all likelihood, you will improve significantly in 5 weeks (and, I'm not sure how it is where you teach, but in most places actual classes don't start for more like 10 weeks from now).

I was told that progress is usually gradual and you will notice it from week-to-week not really day-to-day. For me the first week was the worst to be sure. I am doing and feeling better this week -- not a dramatic change (still leak badly while walking), but I felt comfortable enough to go back into the office since Tues (3 weeks post op).

But in the unlikely event you (or I) are in the 3% who never regain full control there are other surgical interventions to fix. In my view, this is a small price to pay for likely being cured and being around for my family.

Despite the very unpleasant feeling I had the first week after the cath came out, more than anything I was just extremely thankful for having even caught the disease early and ending up with excellent final pathology -- in particular not having my GS be upgraded (which happens ~ 30% of the time) from GS6 (which, when fully resected, virtually never reoccurs distantly). I can't imagine how grateful I would have been if my biopsy had said I was GS7 (which, due to GS pattern 4, has the significant potential to metastasize) and I ended up being downgraded on final pathology to GS6 (i.e. no GS pattern 4 present after all, which is very unusual after biopsy indicated GS7) .

So, hang in there...
Posted 6/21/2013 2:31 PM (GMT 0)
MH, trust me, you are well in the range of "normal" for this juncture. Sorry your doctor wasn't a little more sensitive in what he said to you, instead of worrying about his personal score card. Dryer days are ahead for you, my friend.

david
Posted 6/21/2013 2:53 PM (GMT 0)
MHMeyers, I so wish you could have found this site prior to your surgery as I did before my hubby's. It's a very hard thing to go through without the sharing of others who've gone before you. Too bad doctors wouldn't hand out a link to this site to their pre-treatment patients!

The people on here are soooo great about sharing their experiences, answering questions, removing so many of the unknowns about it all - as you've now discovered for yourself! :)

I hope you come back often, and keep us updated on your progress!
Posted 6/21/2013 3:14 PM (GMT 0)
MHMeyers hang in there.
Posted 6/21/2013 3:32 PM (GMT 0)
Hey MHM

You wrote: "It seems a lot of people here walk out of the DaVinci surgery completely continent (after catheter removal). I've had the catheter out a week and the doctor seems to think I am sub-normal because I can't even tell the pee is coming out 24 hours a day."

Boy that pisses me off! Feel free to kick that arrogant doc in the nuts for me. He's trying to pull the "Patient did not respond to treatment" carp on you.
We all know the first line of the Hippocratic Oath (I) First do no harm.
But the second line is less well known since it is a carefully guarded secret. Shhh.... don't tell anyone... Ready?... (II) It's always the patient's fault.

I too could not tell if I was peeing and after 16 months of leaking. I had it fixed with sling surgery. It's great! I'm normal again.

This will improve. You will get better. You will find tricks to limit fluid, pee in the shower, fully emptying your bladder by poking your perineum, etc. You'll figure it out. It's early yet. This is a journey that will take months and as such the improvement will be small per day.

Start measuring how much you leak and record your data. Weigh your pee pads. Then plot the data with a 2 day moving average. The scale will show improvement even if you don't recognize it.

Remember, no matter how bad it is, or how depressed the sight of your water logged winkie makes you, you can always get incontinence fixed. Read that last sentence again. Go ahead. I'll wait....
Set a line in the sand that says for example "In 14 months I will be dry - one way or the other." It can happen naturally, you can buy a clamp, you can have a sling installed, or you can get an AUS.
Repeat after me... You can always get incontinence fixed.

Believe it or not, but you are learning to be a better, more tolerant person now. It is a life lesson experienced by 10% of the population.
Don't do anything rash. Got it?
Jeff
Posted 6/21/2013 3:38 PM (GMT 0)
MHMyers

I had Divinci on 5/29 & catheter out 6/6. The first two days it just flowed out constantly as though the cath were still in. I had no control what so ever, and yes it was a little depressing. I got some encouragement from the forum & moved ahead. On day 3, I discovered I stopped going if sitting in the lazy boy & I had 5 seconds after standing to make it to bathroom. And that's what I did, I ran to bathroom and went. It was a pain if I just got up to grab remote across the room, I had to make the trip to bathroom first. My uro told me to do 20 Kegels in morning & 20 in the evening, not to over do it, from get go I added a third set of 20 mid day. Went thru an entire package of depends and guards the first three days. Eight days later made the hour drive to Canada for my wives birthday, did a little gaming, never would have dreamt a week earlier that would have been possible, used three pads the whole trip, casinos have many nice spacious restrooms. Lol
Anyhow, with me improvements weren't daily, but instead weekly and big time. I'm now dry unless I cough hard, sneeze and for some reason pass gas, although that's improved in last two days.
In summary, hang in there improvements will come and when your least expecting them!!
Posted 6/21/2013 3:38 PM (GMT 0)
Hang in there MHMeyers. I didn't do surgery myself, but I see so many surgery stories on HW where there's lot of incontinence up front and it soon recedes. Plus, everyone I personally know that had the robotic surgery has been happy in the long run, although they had some trying times out of the gate. No reason to think it won't do the same for you. All the best!

Michael
Posted 6/21/2013 3:59 PM (GMT 0)
In all fairness to the doctor, I've read these posts carefully and I see it as a leap to say MHM was personally called "sub normal" His results, for this doctor at least, were sub normal. and saying that is not the same as saying the patient is sub normal. As one who tends to parse words, myself and has a above normal penchant for hyperbole, I suggest a fair amount of that from MHM's post. His doctor, imo, was less than sympathetic and should have, at least warned MHM of the worse case scenario. MHM, seemingly was blindsided by trust, and that might have prompted his reaction. My experience with the medical system tends to see his doctor as " normal ", unfortunately. The obvious bright side is a stellar path report. MHM , in balance came out very, very, well in this story and upon reflection and us telling him, what he probably already knows, will see a very nice recovery indeed. congratulations on that MHmeyers.
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