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Another "date with a robot"

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Posted 6/10/2010 12:04 PM (GMT -5)
We, too, have a date with a robot (thanks for the line, Timm).


Yep, the 6 weeks after diagnosis on 5/3/10) brought research, research and more research so that now I guess that Mac and I are at least somewhat knowledgeable lay people. For a while I spent what seemed like every waking hour on this site and it has, indeed, been truly helpful. We consulted at 3 medical centers (UCLA, USC and the City of Hope) and chose between an open expert (Mark Litwin at UCLA) and a robotic expert (Tim Wilson at Hope). It’s Robotic at Hope 6/14/10.

Now that I’m back on the site I have a few questions (HAD to take a mental break):



1. It appears that many (most?) of the HW members had higher Gleason scores post RP…a lot more than the statistical 40% I’ve been able to find. Is that because of the nature of the site? Do men who have the same gleason pre and post surgery also tend not to have involvement with margins, lymph nodes, seminal vesicles and extracapsular extension, etc?…therefore not actively using/needing the information and support available on the site?

2. A big worry we have (after surgical margins, lymph nodes, seminal vesicles, extracapsular extension, perineural invasion, vascular invasion, etc) is catheter problems. Several friends had plenty of catheter pain, saying it felt like the catheter was pushing too far up into the bladder and it hurt. So here’s my question: if they insert a catheter that is long enough to handle erections (“erections or partial erections on while catheter still in”), how can it NOT be too long the rest of the time? Maybe this is a stupid question and before he goes under, we’ll ask the doc how this works, but does anyone have any thoughts on this?

Thanks, Paella

Mac’s stats:

Age 65 - 5'11"

Weight 208 BMI 29.1

Overall Health Condition: Good to excellent.

PSA: 1.0 in November 2001…slowly but consistently rising to 4.4 in Feb 2010
16-needle Biopsy 4/19/10: Gleason 3 + 4 with 6 positive cores; 1@ 35% 1@ 25% 2@ 15% 1@ 5% 1@<5%
Both lobes involved (right lobe with 1@5% and 1@<5%)
Left Lateral & Left Apex involvement
No Base involvement
Posted 6/10/2010 12:16 PM (GMT -5)
Paella,

I am wishing Mac many erections when the catheter is still in!!! I wish I had them.

From the end of the penis to the junction piece where the bag/bag tube plugs in there was probably 6 or 7 inches of the catheter tube exposed. If Mac gets an erection the penis has that 6 or 7 inches of tube to slide over as you get the erection. Just keep it very clean and well lubed with antibiotic ointment. An inflated 'balloon' at the end of the catheter in the bladder keeps the tube in place. I never felt like the tubing or balloon was pushing too hard in the bladder. I did have a feeling of bladder fullness periodically but as long as the catheter is draining (easy to visually see through the clear tube that goes into the collection bag) everything was OK

I recommend not expecting the erections because they may not happen. Just be pleasantly surprised if they do!

I really didn't have catheter pain, I would just call it discomfort. I could feel the movement of the catheter as I moved around. Plus it is just a big nuisance to walk around with it.

Dan
Posted 6/10/2010 12:46 PM (GMT -5)
Paella,

I'm no expert but I have spent a LOT of time on various forums in the last 15 years of internet addiction. One thing holds true for all of them, it seems there are 3 types of people that frequent forums, one is folks needing information because they are facing something new (car/hobby/disease) 2nd is people who are having issues and need help in dealing with them, the 3rd is those who have a lot of experience and wish to share it. So far no forum that I've seen is a honest cross section of a particular group.

BTW I had to take a break from the site before surgery due to depression and living in fear of the future caused by too much reading.

As for your questions

1. My Gleason was the same before and after RP, my tumor staging went up but my uro' expected it and called the final post op staging right on the money (darn it) I did have seminal vessicle invasion but clean lymph nodes. Come to think of it she expected lymph involvement so I guess my staging went down a bit.

2. I didn't mind my cath' at all, I know, weird to say the least but I got a full 8 hours sleep for the first time in years and had no pain etc. I kept the tip lubed with a generic ointment triple antibiotic and had no pain. The extra length is all on the outside, I probably had 12" hanging loose, more than enough. The last thing on my mind was an erection, and none happened.

Best of luck to both of you.
Dave in Durango CO
Posted 6/10/2010 12:56 PM (GMT -5)
I was about to write a response when Daveshan's response came in...I would agree with both his comments:
1. The site participants does not represent the total population of PC patients.
2. Erection with the catheter...not going to happen.  (you might find the rare exception, but don't waste one ounce of energy worrying about this)
Posted 6/10/2010 12:59 PM (GMT -5)
I had my cath in for five weeks. Short version of the story is the cath holds 15ml or some other mesurement of fluid. My surgeon reduced the amount by a third and I was then able to sit in an office chair without issue.

Only time I had any pain was when the cath slipped out of shorts and hit the ground shocked   If you avoid doing that - you shouldn't have any problems espicially if its only in a week - which is much closer to the norm.

Posted 6/10/2010 7:35 PM (GMT 0)
I think most of upgrades are when biopsy is 3+3 and goes 3+4. My surgeon told me this and have noticed this on this site. You are starting with 3+4 and this will probably hold. Perinueral invasion will probably be in path report, it VERY arguably has no prognostic value. I say no.based on my research. but again, what do I know. The rest of the pathological concerns are above my paygrade. the volume is higher than some, but not outrageously. The large majority of path reports now a days do show prostate confined specimens, so that is on your side. Stay positive!!
Posted 6/10/2010 2:59 PM (GMT -5)
I can assure you first hand, that you don't want to have a full errection with a foley catheter in place. With as many catheters as I have been on, I have experienced that more than once first hand, it can hurt for starters when you go errect, and it can hurt for hours later. My original surgery catheter was in for 63 days, and I had no ED problems. As I was healing, I had to make myself not have sexual thoughts or interest, as the catheter errections hurt too much. Now that I have been on SP caths for nearly 9 months (suprapubic), the errection issue isnt a problem, as the catheter exits below my navel, and not through my penis.

Most standard foley's are the same length, they mostly vary by diameter and tip style. Since inserting one in a man involves quite a curve to enter the bladder, they usually use a different tip for a man than for a woman, and they do make shorter ones for women, because it doesnt have to go in as far.
co
On insertion, the general rule is to push it in just as far as it takes to clear the other side of the bladder neck, they know as urine will start to flow immediately if it is in far enough. Then they fill the balloon portion with saline, and with a foley, the balloon sits at the bottom of the bladder just on top of the bladder neck. There may be some exceptions to some of this, but not usually.

The balloon is what keeps the catheter in place. After having 17 of them, I dont see how one could possibly pull out as long as the balloon is properly inflated, but I sure wouldnt want to try.

Urine enters the tiny inlets at the top side of the balloon. Sometimes, the inlet tip can move about and poke the bladder wall, and it will hurt like hell, I assure. Some of my caths have fitted well, and others were problems. Fortunately, for the average surgery guy, you are talking about one foley catheter for 6-15 days tops, then its all over with.

Bladder spams hurt terrible. Most mmen arent on the cath long enough to experience them. The bladder is a powerful muscle, and it tries to expel the foreign object in it, the catheter, and talk about pain. Some will force urine around and under the balloon, and you could have some leakage. That kind of spams hurts bad, but the leakage helps relieve the pressure. The other type of spasm, the balloon holds tight, and there is no leakage, the pain is all pressure and can linger a good while.

I have been on the generic version of the med ditropan , I take it from 2-3 times a day, its cheap, and its suppose to relax the bladder walls so that you dont have the spams, or they wont hurt as much. I am either immune to ditropan by now, or it doesnt work, because its never stopped a bladder spasm from happening when one wants to happen.

Again, most men aren't on the catheter long enough to experience the problems with having one long term. And thank goodness.

Some hospitals now use the SP suprapubic catheter, and one would leave the hospital with one. They insert it when they are done with your surgery, and it usually exits just below your navel. Not as annoying a having one come through your penis, but just as prone to bladder spasms and UTI's if you have one in long enough.

Hope this info helps.
Posted 6/10/2010 3:47 PM (GMT -5)
Why are foleys more common than suprapubic caths? (I imagine most men, if given the choice, would just as soon not have the cath running through their penis).
Posted 6/10/2010 7:04 PM (GMT -5)
Med,

A suprapubic is a surgical situation. The Foley is not. From a simplistic view, that is a big difference. As well, they are going to put something in the urethra to protect and support it after the re-connection.
Posted 6/10/2010 8:04 PM (GMT -5)
The reasons some surgeons prefer the suprapubic, is because it takes all the strain off the delicate urethra-bladder neck connection. With a foley in place, it can irratate that connection, so the thinking is to bypass it altogether to allow the bladder neck to heal better. I know Sonny here had his done that way, and it seems like there's been at least a couple of other guys.

A supra cath requires a real surgical procedure to install the initial one They actually make an emergency smaller version, but my surgeon said that most caretakers or even nurses would not be able install it without difficulties. The op to install my SP was about 15k, including surgeon and hospital,so its not a cheap easy fix.

Mine was installed, because of my bad track record with strictures and blockages prior to my salvage radiation. The original plan was to have the SP in place at the most, 3 months, to get through the radiation without any emergency procedures being needed. The fact that it is approaching 9 months now definitely wasn't in the cards, but considering the pain that is still present in my bladder neck post radiation, its definitely the lesser of evils at this time.

Most nurses can easily install or replace a foley cathether, thats a good advantage there.
Posted 6/10/2010 8:54 PM (GMT -5)
I believe the proper medical term is,   Catheter Erectus Interruptus or as we call it in norther California C.E.I.

    

                                                                                                                            Tim

Posted 6/10/2010 9:28 PM (GMT -5)
Here is a snapshot I took of the DaVinci robot that was used during my surgery. It might have been an older model. Dan
Posted 6/10/2010 9:39 PM (GMT -5)
Just to add my two cents, since my path report came in today. My Gleason was unchanged at 6. The cath was no problem while it was in; just a bother. There was no pain, but as April6th mentioned, I could feel it when moving around. My issues with the cath started when it was removed. Apparently, it was more difficult than normal. So my urethra was inflammed a couple of days and there was a lot of pain trying to void, but Advil helped bring things back to normal.
Posted 6/10/2010 9:52 PM (GMT -5)
Drums, glad your urethra has settled down since the removal of your cath. Another reason some men have a lot more problems then others with the cath phase, is their doctors get over zealous in the diameter of the catheter. Too small, you can get blockages and sediment in the way, too large - they can cause extra pain against the bladder.
Posted 6/13/2010 3:18 AM (GMT -5)
Paella, you have started some excellent threads, and the responses have been very informative. Thank you to everyone who has responded to these questions!

Aimzee
Posted 6/13/2010 5:44 AM (GMT -5)
Paella, Aimzee and all,

If you haven't had surgery on the area where the Foley goes, then inserting a Foley is actually a very simple procedure and one of the first things nurses have to learn how to do when they are being trained. (A quick search on Google truns up lots of medical sites with details)
Basically things have to be clean/sterile and lubricated and then the thintg gets slid in, and it can all be done in a minute.
The difficulty, where there is any, is for the patient who has to put up with the discomfort. (Plus those emergemcy situations of course where it is simply painful; but in those cases the alternatives are much worse)

After a radical prostatectomy however it is a job for a skilled operator as the act of insertion of the Foley must not damage the new join that has been made between bladder neck and urethra. I was thus under the impression that the Foley catheter was actually inserted in the final stage of surgery when the robot camera is still inside and thus able to look at the join between bladder neck and urethra as the catheter passes.
I was told on leaving hospital that if there were problems with the Foley, including it coming out if the balloon deflated that I was ONLY allowed to have it sorted out by one of them and not any old nurse or doctor from any old hospital.

As for erections with catheters and the idea that the catheter is not long enough, firstly I agree that the chances of getting an eredction are minimal on the basis of what the guys here ahve reported. (I am the exception in having had erections with the catheter in, it was a case of move the rubber pipe as quickly as possible without pulling on it to get it aligned the same way as my penis and then squeeze the glans of the penis firmly between finger and thumb to make the erection go away as quickly as possible.) With my catheter there was about ten inches of slack available of which two or three inches disappeared up my penis when I had that surprise erection. The idea that catheters may not be long enough may arise if someone has only ever seen female catheters which for anatomical reasons are considerably shorter than male ones. I have seen 25cm, 31cm and 40cm ones.

It might help to look at Wikipedia which has a photo of a male catheter in place at
en.wikipedia.org/wiki/Foley_catheter
however the catheter shown is about three or four inches shorter than the one I had in me. so I may have had a 40cm one in me (it looked very very long when it was taken out.)

I guess that for those men with large penises it would be as well to check that they are not going to get given a short catheter simply because they have a "one size fits all" attitude.

Keeping the catheter clean is also important, but you should get told all about how to look after it before leaving hospital If not ask, ask and ask.

Walking/moving too fast with a catheter inside my make the end inside the bladder move and touch the sides which feels unpleasant. It is also possible that a new position will have to be found for sleeping or sitting. (I had extra cushions behind me when sitting as it was uncomfortable it I sat too far back, but others might find the opposite is true).

And if the catheter is painful, then that too is pain that can be helped so ask for pain relief. Even one tylenol/paracetamol can make all the difference ( I was on six paracetamol a day after surgery and when I tried to cut it down to four or five becasue I thought that that would be better for my it wasn't worth it as things started aching too much. And things down below are aching once more after RT has finished so it's back on the pain relief again while things are healing)

All the best
Alfred
Posted 6/13/2010 7:01 PM (GMT -5)

Thank you, Alfred!  My husband slept in his recliner for 10 weeks after back surgery.  I have seen that recommendation here.  I will be sure to ask questions and hope my sweetie gets an experienced nurse.

Aimzee

Posted 6/13/2010 7:27 PM (GMT -5)
Aim:

Most men that go through prostate surgery leave the operating room with a foley catheter already in place, and of course, it exits the penis. Some surgeons will do the suprapubic catheter (SP) instead, and they install that during the end of surgery, it involves, for sake of simpler terms, puncturing the wall of the bladder and exiting the catheter either to the left or right of the navel, but slightly below. They use the exact same kind of catheter for either type, the diffference is in how they are inserted. Most nurses can easily install a foley catheter, thought I had a terrible experience with one of my foley's at the local ER. My uro/surgeon will not let his own nurses swap out my SP caths, he does them himself. They are tricker, and the hole can close over in as little as 2 minutes if something goes wrong.

Alfred my friend, you are not the sole exception, I have had full natural errections with both folley and SP catheters in place, and my advice to the few that could experience that: DONT DO IT!! lol. They hurt, and should not be encouraged. I have had 2 episodes with achieving orgasm with a foley in place, and trust me, despite my desire, the pain after was not worth the effort, and I would never do it again. With the long term SP's that I have been dealing with for nearly 9 months now, even though the cath exits below the navel, and not through the penis, sex can still be more painful than its worth on my end of the equation.

David in SC
Posted 6/16/2010 12:55 AM (GMT -5)

Just a quick post for tonight.  My husband had the meeting with the surgeon who will perform his da Vinci Prostatectomy.  I had my list of questions and the doctor was very polite about answering them.  Ron found out all he needs to know about his robotic surgery, and he's not happy.  We meet with the doctor again in 4 weeks, and the surgery will be in 6-8 weeks.  

Now we found out April 27th that he had  prostate cancer, and it may be August until he has his surgery.  That will be about 15-16 weeks. Doesn't that seem like a long time to wait?

Feeling a bit discouraged over here.  I do appreciate all the information I have read.

Aimzee


Posted 6/16/2010 1:59 AM (GMT -5)
Aimzee & Ron

Hey I was diagnosed on April 27th too, but in 2009.

I had my Da Vinci on 29th July 2009 which I felt was about right time wise. I'd say a 15-16 week gap till August would not be a long wait at all.

Nobody can be certain but I'd guess that the view at HW would be that suergery after 15-16 days would be too soon and 15-16 months MIGHT be too long.

The next few weeks won't be easy for either of you, but my advice would be to enjoy them, or rather do lots of things that you enjoy. And perhaps try and ration when you worry about stuff. if you think you'll lie in bed late at night with your head spinning then try and talk about it when you're wide awake earlier in the day. And if you make yourselves tired with extra exercise sleep may come easier too.
Good time for a holiday too: my wife and I went to France for a week to celebrate our silver wedding anniversary.

(But don't overdo it, and don't wear yourselves out)

Alfred
Posted 6/16/2010 9:00 AM (GMT -5)
Aimzee,

Alf has a good point (several, actually). There are some minimum times to wait, just so that the biopsy site will heal properly, and if I had lower Gleason numbers, I would have waited a bit as well.

Take that time to get in shape (if not already), learn the kegels and start doing them, get the house ready to be "comfortable" for recovery and to move around in with the catheter, and then take it easy for a while. Going to surgery with a good mind-set will help a lot.

I've not noticed if there was mention of your geographic location, but if you are in a July/summer region, it will be better to wait a bit. All that recovery walking is tough to do on a hot July day.
Posted 6/16/2010 9:07 AM (GMT -5)
Hi Aimzee,

My husband was Diagnosed 3/18/10 and his surgery is scheduled 8/9/10. My husband is also a gleason 6 and from everything I've read, been told by my husband's uro , his Da vinci surgeon and the folks on this site there is no rush to treatment with a 6. We took plenty of time to learn all we could before we made our decision. My husband has been surprising calm thru this whole process-says he goes days without even thinking about his pc. I, in the other hand, hang out on this forum daily. Don't know if we're being naive but we're both very positive people and don't really worry very much.

Renee
Posted 6/16/2010 9:31 AM (GMT -5)
Another note about the catheter. It is actually used as kind of a splint where the resectioned urethra and bladder are joined. It keeps the urethra and bladder from closing up and forming scar tissue. Not all doctors use this technique, but I would say the vast majority do. It is another reason why it is kept in for 1 to 2 weeks to insure a good plumbing job.

Aimzee, with your stats, and Gleason, I would not worry about an extra month or two, in fact, I would go and enjoy the summer for all I was worth. Where you are sitting now, is a whole lot different after you cross the bridge. I would use my "equipment" every chance I could, (even if I didn't particlulary need to or want to ) and I would try as best I could to ignore the gorilla in the room.

Post surgery is a bummer. Wet pants, pads, discomfort, probable ED for a while, etc. It will most likely be a miserable six months.

It sounds really good when talking to the doctor, but in reality, it is not so much fun, both physically and emotionally.

Go enjoy yourselves until August, and good luck. Maybe even take a break from HW for a while.
Posted 6/17/2010 12:17 AM (GMT -5)
rhb47, thank you for your reassurance.  It looks like your husband is scheduled at perhaps the same time as mine.  The office will be calling with the information.  That is great that you are so calm!  My parents died of heart disease and diabetes.  Ron's father died of a stroke and his mother was quite elderly and her little heart just gave out.  So, we have no experience in dealing with cancer.  It is the fear of the unknown.  We do believe in prayer.

Alfred, I would love to go to France.  That's really a nice trip!  However, we have to settle for the Rock and Roll Hall of Fame in Cleveland.  It is one of our most favorite places to go.   On Thursday, we are going to a Tigers/Nationals baseball game.  We also have a Graduation party coming up.  Then my daughter's Garage Sale.  So, there is a lot to keep us busy.  And time for lots of cuddling, too.  If rest is needed, plans can be changed.

We aren't babysitting for two weeks. 

142, we are in Michigan, and it gets very hot over here.  Ron is in good shape and does a lot of walking.  Good advice!  He does get tired, but napping helps.

Thank you, Goodlife.  The doctor wants to see him again on July 20.  I am not sure why he has that appointment. The waiting is most difficult, but we are trying to accept this thing.

Thank you everyone for your kindness!

Aimzee

Posted 6/17/2010 8:31 AM (GMT -5)
You will see a lot of doctors in the month just before surgery.

I had to have a mini-physical with my GP to certify me for surgery no more than two weeks before.
I've had colo-rectal surgery, so had to see the colo-rectal guy for his clearance.
Then back to the surgeon to be sure I wasn't falling apart at the seams mentally.
Then within the week before surgery, the hospital will likely have you come in for a chest x-ray, blood tests for communicable diseases, blood typing, etc. The hospital also had me meet with the finance people to be sure I had the insurance and $$$ in a row.
Also the hospital had an evening "meet and greet" to do a walkthrough of the facility, see the waiting areas, rooms, what the meals looked like, etc.
Last night before surgery the Anesthesiologist (sp?) will call to be sure you don't have a cold, sinus flare-up, intenstinal issues, anything that would keep you from being under for the required time.
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