I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
ο»Ώ

RARP Good News

User
Posted 23 Feb 2020 at 15:22

Bill

I have had surgical clips, dilations and done ISD as opposed to ISC.

I had one surgical clip removed from the urethra with out any major issues. The other one was just floating in the bladder and came out with the help of a flexi and camera  Following ten plus dilations my continence did suffer but normally only for a short period of time, sometimes only a matter of days post twoc. On a couple of occasions I had dilation with an incision into the bladder neck  / scar tissue, continence probably took a little longer to recover. 

I did ISD to help keep the Urethra open, make sure you get a nice soft tip catheter and as you only want it to drain urine, smaller might be better.

Like Dave I would carry self catheterisation equipment with me just in case.

Thanks Chris

User
Posted 24 Feb 2020 at 05:55
Thanks Dave and Chris that's really useful and will help in my discussion later today.

Cheers

Bill

User
Posted 24 Feb 2020 at 15:08
Three years post op. PSA now detected at 0.02. after three years undetectable for the first rise that seems to me to be a big jump. Test again in three months. Now I'm scared!

As I said in previous post, flow problems worse so have agreed to dilation of the stricture. As advised by Dave and Chris above I asked about self dilation and catheterisation. Specialist nurse said that would be considered but after dilation. I didn't ask as much as I should and didn't take it all in because I was shaken by the PSA result. Gutted really.

I fear RT because it might make the current problems worse

Any thoughts would be appreciated

Cheers Bill

User
Posted 24 Feb 2020 at 16:53

Bill

That is still a very low PSA, unless you have been told something else I would consider that a good result.

Thanks Chris

User
Posted 24 Feb 2020 at 16:54
0.02 is undetectable - it would have to increase five fold for you to be considered to have a problem. It is worth checking whether they just missed off the < sign - sometimes the person reading the results doesn't understand its significance. But at 0.02 you could just have got out if bed on a different side that day, or had the test at a different time of day - PSA can fluctuate from morning to afternoon.

Biochemical recurrence is 0.2 or three successive rises over 0.1 - you are nowhere near worry street yet. Your PSA is currently about the same as a woman who has just had an orgasm. Try to enjoy having a PSA that many men can only dream of.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Feb 2020 at 17:16

All good at this level. It’s just noise and errors from the tests as so small. I’d not worry until you get to 0.1 should that be the case. Maybe have another in three months if the prescribed interval is longer for reassurance?

TG

User
Posted 24 Feb 2020 at 22:18
Thanks All for your support and encouragement it really has helped.

When I take a step back and calm down its what I should have been thinking and should have known better. But Im still thinking it's 7 consecutive undetectable results without an error and now .02, not .01 like I might expect.

Nothing more to do now than hope for the best in three months time.

In the meantime I await the dilation and hope for no worsening of current side effects.

I'm still grateful that I'm not in the same boat as the advanced guys and wish you all and your carers/supporters all the best.

Thanks for taking the time to help, especially when I know you have your own more important issues to deal with

Cheers

Bill

User
Posted 13 Apr 2020 at 10:40

I have copied the below conversation from another thread (UTI by Roy,den) as it is more appropriate here and was hijacking his thread.

I will reply later

Cheers

Bill

Bill63

Posted 12 Apr 2020 at 18:03

Originally Posted by: Andy62

"If your pee rate is slow and you are incomplete voiding, you might ask your doctor about trying Tamsulosin."

Anyone know if Tamsulosin would a be of any help with post RARP bladder neck constriction and would it aggrivate urge and frequency issues or incontinence. My flow is down to 3ml/sec max but detiriates quickly to a dribble. No chance of getting it sorted any time soon.

Cheers

Bill

Andy62

Posted 12 Apr 2020 at 19:30

Someone asked me exactly the same question just recently (maybe on another forum).

If the constriction is significantly smooth muscle based (which is certainly a possibility with it being at the bladder neck), then it might work. If it's predominantly scar tissue, it's less likely to work. The flow rate quickly deteriorating to a dribble could be smooth muscle of the sphincter contracting, and it might help with that, even if it doesn't change peak flow rate because it's limited by scar tissue. Reducing flow rate could alternatively be lack of contraction of the bladder muscle, and it won't help with that (and might even make it worse).

Tamsulosin is quick acting, so you could ask to try it. It could aggravate incontinence, in which case you could stop it and it should be out of your system in a day or two (it doesn't normally last quite 24h).

I'll also say that Tamsulosin works mainly on the smooth muscle of the internal urinary sphincter (and prostate), and I'm not sure exactly what difference it will make post RP where this sphincter (and prostate) is lost, and you rely on the external urinary sphincter. I have asked a couple of urologists how the external sphincter (which is classically regarded as skeletal muscle which can't remain contracted and give continence) does end up providing continence in most cases after RP, and they've thought for a moment, before saying they don't know. There may be some smooth muscle in the external sphincter too (as is the case for women who only have one urinary sphincter), in which case Tamsulosin would work on that.

It would be interesting to know if there's anyone here, who following a RP, still finds that Tamsulosin increases flow rate. That would suggest the male external urinary sphincter does contain smooth muscle, in addition to skeletal muscle, and would also explain how it takes over primary continence control from the lost internal urinary sphincter.

Thanked 1 time

colwickchris

Posted 12 Apr 2020 at 21:39

Bill

I probably have taken tamsulosin in the early days of my stricture but cannot recall it being effective, hence the reason for trying all sorts of other medications. Good points from Andy on how tamsulosin works.

You say your max flow of 3mls/sec quickly slows to a dribble, do you mean at each visit to the toilet or over a period of time.

Post dilation I could sometimes do an average of between 20 and 10mls/sec and it usually took three or four months to get back down to 0.5mls/sec. Scar tissue continues to grow which is why I needed numerous dilations.

Thanks Chris

Thanked 1 timecolwickchris

Bill63

Posted 13 Apr 2020 at 07:32

Originally Posted by: colwickchris

"You say your max flow of 3mls/sec quickly slows to a dribble, do you mean at each visit to the toilet or over a period of time"

Andy/Chris, thanks very much for the replies.

Chris, I meant each pee,

first minute or so is about 3ml/sec then it slows to a dribble then it stops at which point I have to push down and then push out, kind of push and squirt until no more comes out. Also the first 20 secs or so is painful, not the stinging urethra pain like with a UTI but a horrible pain from inside.

Cheers

Bill

Andy62

Posted 13 Apr 2020 at 08:17

Originally Posted by: Bill63

"first minute or so is about 3ml/sec then it slows to a dribble then it stops at which point I have to push down and then push out, kind of push and squirt until no more comes out."

I'll suggest an alternative strategy to try. Don't try fighting it when the stream stops. Just wait 30 seconds, and then go for a pee again (by relaxing like normal, not by forcing). This is called double voiding. Keep doing this until you reach the point there is nothing more left in the bladder other than the few cc's your kidneys will have generated in the last 30 seconds wait. I can't promise it will work, but it's probably worth a try.

The smooth muscle of the sphincter doesn't relax until your bladder is empty - it relaxes for a length of time which is normally ample to empty your bladder at a reasonable flow rate. For a slow flow rate, it will contract and close the sphincter before your bladder is empty (which is why slow flow causes incomplete voiding). So the suggestion above is to accept that will happen, but then go for a pee again to repeat the process as necessary until you do empty your bladder. Trying to force pee out by tensing can be counter productive by also tensing muscles that restrict flow, and might do some other damage in your abdomen/bowel.

Going for a pee should be a relaxing task. If you find yourself all tensed up worrying if it will work or not, try taking in something to distract you like a book or a smartphone, sit on the loo, and use those between pees to take your mind off it. (Don't sit on the loo for hours - it's not great for circulation in the legs.)

Originally Posted by: Bill63

"Also the first 20 secs or so is painful, not the stinging urethra pain like with a UTI but a horrible pain from inside."

Maybe urine running past an open scar. You probably restrict your fluid intake in the light of the difficulty voiding, and that may make your urine more concentrated and acidic. If you get more confident that you can empty your bladder, increase your fluid intake to make your urine more dilute. It should look no more concentrated than pale straw coloured. If it looks more like orange juice, that might be part of the explanation for the pain.

I've given some quite detailed suggestions here, but note that I am not a clinician, and you may have some condition I have failed to recognise. You might want to run them past your own clinicians first. At a flow rate of 3ml/s, you are at risk of going in to retention.

Edited by member 13 Apr 2020 at 08:33 | Reason: Not specified

Thanked 1 time

colwickchris

Posted 13 Apr 2020 at 08:45

Bill

Question time, have you had a flow test at the hospital, what was the result , how much do you urinate at each visit to the toilet , how often do you go, how much fluid do you drink per day and what do you drink. How much do you output per day. How long have you had the flow of 3 or 4mls.

Have I already mentioned may favourite subject of hem o lok clips migrating into the Urethra or bladder neck being the cause of the problem ?

Until you get camera in there you are not going to find a solution, you could ask about self dilation, but that is before done after surgical dilation. I appreciate and understand why you are trying to find a solution in the current covid situation.

Brissac has had a flow of 5mls for years and seems to cope quite well if he does not see this conversation you could perhaps PM him.

Finally apologies to Royden for hijacking your conversation.

Thanks Chris

User
Posted 13 Apr 2020 at 13:51

Andy/Chris, thanks for taking the time for such thorough replies


Andy
There's a lot of good theory there and I'll give it a try thanks.

Chris
Having had RARP end Jan 2017 My flow first decreased back end of 2018 so I had a flow test and it was 13ml/sec but I don't know what it was originally. I wasn't to bothered at 13ml. By the beginning of 2019 it had dropped to 7.5 and then 5ml by April 2019. All were flow test results which matched my self measures. The 3ml is just my own measure and probably for about 2 months ish.

I was first offered the rigid cystoscopy under GA with a view to carrying out whatever necessary at the same time at the beginning of 2019 but declined until a few weeks ago.

Yes we have discussed hem o lok clips further up this thread thanks.
The decrease in flow seems to be fairly stepped rather than steady and gradual which leads me to also think there's a possibility of a moving clip.

I know there is a fair chance I will go into retention before I am able to get this sorted and my biggest concern is that I have someone trying to insert a catheter past a clip protruding into the urethra without having used a cystoscope first, but I will make that point if that time ever comes.

I haven't measured my intake or total output, but I stay well hydrated and every Ultrasound after the flow tests showed empty bladder.

I drink two cups of coffee every morning then mostly water all day. Beer and wine at the weekend mostly but also in the week recently. I have tried cutting out caffine, adding cranberry juice and cutting out known bladder irratents but nothing changes either flow or urge/frequency.

The longest between having to go is about 2 hours but 1.5 is more likely and often less. The problem there is the time from need to desperate is very short, so I go just in case if I leave home or work at all. Also up twice per night when the flow is even slower and can take almost ten minutes to finish.

Most times when I measure it is anything from 150ml to 450ml but normally about 250ml. Incidentally I notice some squiggly bits of skin like stuff in the sample. Google says they are dead epithelial cells. I discussed this with my specialist nurse thinking maybe an infection and she said could also be caused by scar tissue.
I did have a slight infection beginning of 2019 but twice since had two negative tests.

The urge and frequency is also a nuisance. The worst times being long drives/traffic and flying. I once got caught out by the seat belt sign coming on just before I was going to go. On that occasion when the light went off I didn't get to the loo first and wasn't quite able to hold on and I wet myself.

Another more recent symptom is having been totally dry since not long after the RARP l get a sudden slight leak even if I have recently voided and feel no need to pee at all. There's no way or chance to stop it because it is so sudden. I feel a sudden feeling of my urethra filling then a slow dribble/drip. Very slight and not enough to really wet anything, just a spot.

Thanks again for all your advice.

Cheers
Bill

 

Edited by member 13 Apr 2020 at 13:59  | Reason: Not specified

User
Posted 13 Apr 2020 at 14:55

Bill

Without the cystoscopy we are going to be guessing at the cause. My clips and scar tissue were both happening at the same time. We need some input from someone who has had one or the other.

Based on your timeline it took nearly two years for the flow to slow, no medic but would scar tissue take that long to develop. A clip can take years to move. A clip in the bladder can get calcified. 

Some guys have passed the clips so yes they can move. This could also be a cause of the recent urgency.

As regards retention we have mentioned before the possibility of having a SPC fitted if they can't get I through the Urethra. 

I have cut down on water and  drink loads of black caffeinated every day, my bladder spasms have almost stopped.  Not sure about your liquid intake regime, I would swap beer for vodka or gin.πŸ˜€.

Not sure what is happening in urology clinics due to the present crisis. 

Take care.

Thanks Chris

 

User
Posted 13 Apr 2020 at 15:33
Thanks again Chris

"Not sure about your liquid intake regime, I would swap beer for vodka or gin.πŸ˜€."

Yes I don't mind either occasionally. Variety is the spice of life 🍷🍸πŸ₯ƒπŸ»

Just have to hang in there untill all this c19 stuff settles down. Others need help more than me right now.

Good luck with your own issues

Cheers

Bill

User
Posted 04 Jun 2020 at 17:04
Latest

PSA still 0.02. I got the last one double checked also 0.02 so thats 3 in a row after 3 years of undetectable.

Telephone review and now got an appointment for dilation on Monday, despite c19 due to further flow deterioration, pain and increased urge and frequency. I think it was that or high risk of full retention and A&E very soon. Had to have c19 test and self isolating until admission.

Hope you all keep virus free and as well as possible.

Cheers

Bill

User
Posted 04 Jun 2020 at 17:30

Great PSA result Bill.  Hope all goes well for you next Monday.

Angex

User
Posted 04 Jun 2020 at 17:40

Bill

Very good set of results , hope it stays that way. Best wishes for the dilation don't forget to get some instilagel or hydrocaine.

Thanks Chris

User
Posted 06 Jun 2020 at 09:21

Hi, Bill

Your post is very encouraging!

I also had RALP, at the end of February this year.

The encouraging post-surgical analysis says:

"His final histology revealed a Gleason 3+4 cancer, which was organ confined and clear margins were achieved."

It's been a 6 year journey.

you can see my blog with details:

www.andrewhamm.uk/prostate

So far, I'm down to only 1 small, light pad per day, nothing at night.

We obviously all respond differently, so I will have to see if I ever reach your no-pads situation. The clinic nurses say it's still early days yet (3 months).

My PSA and gleason were previously almost identical to yours. Now, it's undetectable at 0.03. 

My ED is clinically defined as "no spontaneous erection". I do have an appointment booked with a specialist on 16th July to be "sized up" (!) for a vacuum pump. (See blog mentioned above for details). I can manage a non-rigid erection at the moment if I use a small band ring and stand up.

Thanks again for sharing,

Andrew

Edited by member 06 Jun 2020 at 12:21  | Reason: added to follow conversationi

______Grateful for the goodness of God________

User
Posted 06 Jun 2020 at 11:20
Bloody hell Andrew, I hope it wasn't your autopsy! 🀣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jun 2020 at 12:23

LOL no!

But thanks to faith in Christ, I'd be ready if it was! 

I've corrected it to the formal surgeons report now.

______Grateful for the goodness of God________

User
Posted 06 Jun 2020 at 15:20

😁

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jun 2020 at 18:18

Hi Andrew

That's an interesting blog.

If your getting a pump the Somarect is good and makes it easy to get the rings on but I find the cheap on line ones also just as good for producing an erection. The advantage is the one I use is so lite and less bulky I can use it standing up and moving around, no hands. Also in the shower.

ED still improving after three + years so very early days on that front for you and the same with the leaking.

Good luck with your ongoing recovery

Cheers
Bill

Edited by member 06 Jun 2020 at 18:27  | Reason: Not specified

User
Posted 10 Jun 2020 at 15:27
I had the dilation on Monday. Catheter out on Friday.

I just got some instillagel. The leaflet says the tube is single use and discard the rest. Surely it's ok to use a bit at a time?

Cheers

Bill

 
Forum Jump  
©2025 Prostate Cancer UK