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

Notification

Error
12>

RARP Good News

User
Posted 08 Apr 2018 at 15:50
Hi All

Just for anyone having to choose treatment options and in the interests of reporting good news which may help others.

I had a Robotic Assisted Radical Prostatectomy in January last year. My DX was PT3a, Gleeson 3+4, PSA 6.4. More details on my profile.

It was a difficult decision but the MRI and Biopsy showed the tumor to be close to the edge on the left so surgery was advised with nerve sparing on the right only. Post op pathology report showed extracapsular extension but microscopic negative margins, so the way I see it the right decision and just in time.

Recovery has been fairly good with no pads required after about seven weeks. Urgency to pee and frequency has been a slight issue but manageable and recently much improved. ED also an issue which has really got me down at times but after a year or so there has been significant improvement, no where near back to normal but I am encouraged by recent improvements.

To me the really good news considering the PT3a DX is undetectable PSA so far with the latest check being just last week. I still fear a recurrence but move on positively.

Good luck to you all, especially those whos journeys are more difficult than mine so far. Also thanks to all who contribute on this site, the knowledge and experience you share is absalutely invaluable.

Good Luck to you all

Cheers

Bill

User
Posted 08 Apr 2018 at 15:50
Hi All

Just for anyone having to choose treatment options and in the interests of reporting good news which may help others.

I had a Robotic Assisted Radical Prostatectomy in January last year. My DX was PT3a, Gleeson 3+4, PSA 6.4. More details on my profile.

It was a difficult decision but the MRI and Biopsy showed the tumor to be close to the edge on the left so surgery was advised with nerve sparing on the right only. Post op pathology report showed extracapsular extension but microscopic negative margins, so the way I see it the right decision and just in time.

Recovery has been fairly good with no pads required after about seven weeks. Urgency to pee and frequency has been a slight issue but manageable and recently much improved. ED also an issue which has really got me down at times but after a year or so there has been significant improvement, no where near back to normal but I am encouraged by recent improvements.

To me the really good news considering the PT3a DX is undetectable PSA so far with the latest check being just last week. I still fear a recurrence but move on positively.

Good luck to you all, especially those whos journeys are more difficult than mine so far. Also thanks to all who contribute on this site, the knowledge and experience you share is absalutely invaluable.

Good Luck to you all

Cheers

Bill

User
Posted 26 Jul 2018 at 17:19

Great news Bill. I have my next blood test 1st August and am anxious I have to admit.

Hope things continue to go well for you.

 

Ian

Ido4

User
Posted 26 Jul 2018 at 18:44
Thanks Ian for the good wishes and all the best to you for your results on the 1st

Cheers

Bill

User
Posted 07 Aug 2018 at 22:53
The pellets work for fewer men but those that are successful seem to prefer it to a needle. No oral sex with pellets, I imagine.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Aug 2018 at 14:12

I have tried them all!!

Pellets I found more painful than jabs  and very unreliable. And you have to keep them in the fridge which can be embarrassing when you have house guests! 

Injections WORK but getting the dose right is tricky my URO said start with 15ml I used 10 and still had a 3 hour hard on. In the end I was on 2.5.

Agree with your doc re the pills but they made me feel miserable with dull aches and blurry vision.

Good news is 3 years on and I can get away with a cock ring Thanks again for that tip Chris!!

User
Posted 08 Aug 2018 at 14:35
Injections don’t work for everyone, there are some men for whom nothing works including the vacuum. John was okay with injections until his priapism and after that, they only worked about a third of the time. One of the things that is out of our control is how they have been stored at the pharmacy, whether they have been left in a hot delivery vehicle and so on; we definitely had a faulty batch where every single injection failed. Dad has always used the single chamber caverject which has to be stored in the fridge and then mixed just before injecting and doesn’t seem to be as sporadic as the dual chamber version but is of a much higher dose.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jan 2019 at 08:23
PSA less than 0.01 I don't know why you are even thinking about a recurrence!!!

Forget about it until your next test and get practicing with your knackered willy.

If you did get an occurrence then waiting until PSA greater than 0.1 and scanning for it is certainly a strategy some people use. Unfortunately you will be lucky to spot anything at that level. Like I said forget about it it most likely won't happen even with a T3A.

User
Posted 15 Jan 2019 at 08:53

The problem Bill is that we imagine the 'what's left in the prostate bed' to be a little tumour that is tangible. In reality, it would be tiny clusters of cells which wouldn't usually be seen on scans, even the best ones, until much later when it might be too late for salvage RT. 

As francij says, you are worrying about something before it happens but if it did happen, bear in mind that John still had ED when he started salvage RT/HT and is now fully functioning; most of his improvement came in the year after RT finished.

Edited by member 15 Jan 2019 at 08:54  | Reason: Not specified

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

User
Posted 31 Jan 2019 at 08:22

Great news with the indetectable PSA Bill.

Hope the other appointments help you out regarding flow and ED. 

Ian

Ido4

User
Posted 08 Feb 2019 at 06:21

Hi Chris thanks for the reply.
I had read your profile before and now refreshed my memory.
You have mentioned hemlock clips to me before and I have researched them.
Do you know if they can be seen on an ultrasound? how were yours found?
It seems your case is very rare. I asked my Uro if the op could cause incontinence and he said not normally because they would be dilating the bladder joint and not near the outer sphincter. But it sounds like that's what you had.

Bri's (Brianissac) profile doesn't mention refusing the op but I remember a post where some one actually on the slab turned it down when the risk of incontinence wad mentioned. I think that was him. I wander how he is getting on with flow now.

If the risk is significant I can manage as I am but I fear leaving it may make it more difficult or risky in the future.

Im sorry you had such bad luck with yours but it does seem you had particularly bad luck.

I need to have a more detailed chat with my Uro.

Thanks again

Cheers
Bill

Edited by member 08 Feb 2019 at 07:27  | Reason: Typo

User
Posted 08 Feb 2019 at 15:43

John, I love your quick wittedness πŸ˜„. I should have checked the spelling.

Chris

Thanks for the detailed reply. It seems both you and Flexi were OK continence wise after straight forward dilations and your problem got worse due to ongoing problems. Your information will help me ask the right questions at my next appointment which will be once infection has been ruled out as the cause. I have been on anti biotics for three days and I feel the infection has gone but the flow has not improved so I think I already know that answer.

Thanks again and all the best

Cheers

Bill

 

 

 

User
Posted 15 Aug 2019 at 22:24

Bill

Great news, if that flow has stabilized leave well alone, it might mean a little more time in the loo, but so be it. I found the stricture helped reduce my inconvenience. Perhaps some medication to reduce the night time visits ? Best wishes for the future.

Thanks Chris

User
Posted 16 Aug 2019 at 09:23

Great news Bill.

Ido4

User
Posted 23 Feb 2020 at 09:56

Yes I have used self catherisation and I have posted about it a few times. In my opinion it is an excellent solution. 

My PCa story started with retention one Saturday night. Solved with permanent catheter for a few weeks, but then moved to clean intermittent self catheterisation (Cisc). I was lucky that my retention turned out to be temporary (though PCa isn't).

Cisc is brilliant, yes a little uncomfortable at first but you get used to it. The best thing about it is, if the problem clears up you aren't left for months with a catheter in which you don't need. BTW a catheter is bad for the sex life. 

I have not had surgery and know nothing about surgical clips so I think you need to establish if cisc is safe for you. 

I now never need to do cisc, but I still do it once every six months to keep in practice. 

Whenever I travel in th UK I always take three or four disposable catheters with me, enough that if retention suddenly recurred I could get relief and then either get back home or get to a hospital but not be in an emergency situation. 

If travelling abroad I take enough for two per day, this wouldn't be enough if I actually needed them regularly or if retention started on day one of the holiday and didn't clear up, but for me retention has not been a problem for more than a year so I can take a chance.

If you need anymore details let me know. 

Dave

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 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 13 Apr 2020 at 16:33
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 18:30

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

Angex

User
Posted 11 Jun 2020 at 08:34

I went for the Specialized Power Expert saddle which I'm very happy with

User
Posted 18 Jun 2020 at 22:21

Bill

I used to do mine in the bath/shower, with one foot on the side of the bath. 18 is a bit brutal to start off with , I started with 12s and worked my way up. I got on well with tiemann tips, they are slightly angled so you can turn them to get round the bends. The spout end had an embossed line so you could tell which way the tip was facing. Remember to be gentle , it's easy to  damage your bits without feeling any pain.

Thanks Chris

User
Posted 18 Jun 2020 at 22:26

Hi Bill, I replied to this thread a few months back extolling the virtues of cisc. It really is such a life changer that it is worth persisting. Anyone else reading this post who is a little squeamish may find it goes in to more detail than you want, you certainly won't want to read it whilst you're having your tea. 

You are right about the need for three hands. I'll try and give you some tips.

My caths are 14f I think 18f would be a challenge.

I am using HiSlip plus. I assume yours are the same or similar.

Once you succeed your going to get a lot of urine flowing out of the cath if you get it wrong that could be going over your carpet or sofa so best do this in the bathroom.

I don't know whether you intend attaching a bag to the cath, I think we did for the demo but in practice I think you will just want to be able to use the cath on its own and hopefully get the urine down the toilet without having to manage the bags as well. 

Forget about aiming for the toilet, as any woman will tell you, us blokes have got a bad aim at the best of times, add in the complications of the cath and your aim is anywhere.

So put an old bowl in the bathroom washbasin this is about waist height which means you don't have to aim far when your standing right next to the sink and any which misses the bowl you're going to just have to turn the taps on and wash down the sink.

Next sit on the edge of the bath, I find this a bit better than sitting in a chair which is a bit too low, and easier than standing which is a bit too tiring if things are taking there time. 

Get the cath lubricated and out of its sachet. It has the bag end which is green (maybe different colour on an 18f) plastic, the bladder end, and in between a wrap around blue sleeve. Ideally you only want to touch the bits which aren't going in your body, the rest is slippery and will be going inside you so you don't want to contaminate it.

Sit with you thighs clamped together this should make your penis jut out a little. Left hand holding the bag end of cath with a finger or thumb blocking the cath exit hole, you'll only take that finger or thumb off when it's fully in and you're standing up and pointing straight at the bowl.

With your right hand fist gently around penis, but thumb and forefinger just above head of penis holding the blue plastic sleeve gently and guiding cath down eye of penis. You should manage about four or six inches with ease, then you have to get around the bend.

Left hand should keep applying pressure but not so much that the cath just flexs and bends. Right hand fist should be supporting penis to stop it bending, relax your thighs now, having them clamped will not help the next bit. If possible pull penis away from body a little that way you have to go around a 90degree bend rather than nearly 180degrees.

Now slide sleeve along catheter about half an inch further up than eye of penis keep as much of fist supporting penis as possible grip sleeve with thumb and forefinger as hard as possible so you can use them to push cath in the extra half inch, you have to be gripping hard enough that sleeve does not slip along cath. Repeat this process half an inch at a time.

Best tip I ever had was, if you feel resistance COUGH. I think it just relaxes the bladder muscle for a second.

You should be in in no time at all. The cath seems almost compelled to come out so don't let go of it or penis with either left or right hand. Stand up, go to sink, aim at the bowl remove thumb or finger, relief. 

You've not finished yet, stay at sink. Slowly start to remove cath, more urine will then come out from lower in your bladder, keep removing cath, just as the end of cath leaves the eye of penis a little more urine will come out. It's these silly unexpected bits of urine that could make a mess. 

Now tip bowl down toilet, tidy up, drink a load of beer so you can have another go. After practice you'll be able to do this sitting on a toilet seat and once cath is in, stand up, turn around and piss down toilet. I still spray a little over the toilet seat but that's just me marking my territory. 

 

Dave

User
Posted 19 Jun 2020 at 19:00

Bill

I used, lo fric and IQ, my favourite was a WyCathH2O, it has a very soft slightly angled tip.

Thanks Chris

User
Posted 19 Jun 2020 at 19:08
I needed to self catheterise for a little while, such a strange experience. I'm not too proud but the 1st time was being instructed by the urologist nurse it just felt wrong. Anyway not too much problem then but the next two times I tried at home on my own just could not do it at all probably equal split between brain thinking this isn't right, nervousness and plain fear. As mentioned I was absolutely drenched in sweat as well. However from 3rd night onwards no problem once I got it in my head, I think, that you have to push a bit when you get to the 'closed food's. Best of luck. I would say being as relaxed as possible, pretending its perfectly natural is good, in general of course.

Peter

User
Posted 19 Jun 2020 at 22:35

Doing with an empty bladder will take some of the stress away, mind you don't be surprised if you find your bladder wasn't as empty as you thought. I guess if the main purpose is dilation they may have gone for the size 18f to make a bigger impression, but I think a less ambitious 14f may have been a better idea.

It does feel weird and unnatural. But once you have PCa being prodded and poked becomes natural and you may as well be prodding and poking yourself rather than leave the doctors to do all the prodding and poking. 

Dave

User
Posted 22 Jun 2020 at 20:29

Bill

It will get easier, on a scope my hole looked quite big, but the consultant described it as a pin hole.

Remember be gentle.

Thanks Chris

User
Posted 24 Jun 2020 at 19:41

Bill

Gently advance the curved tip catheter into the urethra using a large amount of water-soluble lubricant. Maintain the catheter in the 12 o'clock position during passage (curved tip pointing up). 7. Insert the curved tip as per normal catheterizations, until urine return is obtained, then insert 2-3 inches more.

The above is from a makers web site.

I think this describes how I did mine and sounds the same as your interpretation. If you hold the penis up , the route to the bladder is a big U shape and the curve of the catheter follows around the curve of the Urethra.

 

Thanks Chris

 

User
Posted 24 Jun 2020 at 21:22

I have encountered these failures in logic amongst professionals before. I won't go in to all the tedious detail of a recent occurrence, all I will say is when I thought about it afterwards I thought "yes in a few circumstances what you have said is correct, and that's what you've been taught, but you're not seeing the bigger picture". However it's sometimes me who's not seen the picture. So you'll have to try each method and then post back and let us know. 

Dave

User
Posted 10 Jun 2021 at 14:54

Bill 

Great news,long may it continue. On ED, never give up, I still get surprises seven years on.

Thanks Chris

User
Posted 10 Jun 2021 at 21:24
That's a great update Bill πŸ‘
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jun 2021 at 22:42

Great news Bill.

Ido4

Show Most Thanked Posts
User
Posted 08 Apr 2018 at 19:05

Thanks for the update Bill

Always good to see a positive post

We can't control the winds - but we can adjust our sails
User
Posted 08 Apr 2018 at 19:50

Brilliant news Bill - keep on keeping well :-)

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

User
Posted 09 Apr 2018 at 08:06
Hi Bill

What great news and I am sure it will give encouragement to others in the earlier stages of their journey.

All the best,

Kevan

User
Posted 26 Jul 2018 at 15:40

Just been for another 4 month follow up and good news, PSA still <0.01 undetectable, phew I hate the anxiety increase as the day gets closer.

Maybe going to try envicorp for ED and seeing ED Nurse soon to discuss. Not sure whether to go for injection or pellets. Any thoughts anyone?
Uro insists high dose Viagra is still better than daily Cialis, but as discussed in other posts I'm not convinced and will also discuss with ED Nurse.if no luck there I may try getting it on line.

Urge and freaquancy is not to bad now and manageable. Thinking of trying Mirabetron just when travelling, but this will only work if it acts fairly quickly for me. Uro said it acts quickly for some and can take weeks for others.

All the best of luck to all of you and your carers especially those who's news has not been so good.

Cheers
Bill

Edited by member 15 Jan 2019 at 08:00  | Reason: Not specified

User
Posted 26 Jul 2018 at 17:19

Great news Bill. I have my next blood test 1st August and am anxious I have to admit.

Hope things continue to go well for you.

 

Ian

Ido4

User
Posted 26 Jul 2018 at 18:44
Thanks Ian for the good wishes and all the best to you for your results on the 1st

Cheers

Bill

User
Posted 07 Aug 2018 at 21:17
Anyone tried both Alprostadil pellets and injections. Any preference either way?

Cheers Bill

User
Posted 07 Aug 2018 at 22:53
The pellets work for fewer men but those that are successful seem to prefer it to a needle. No oral sex with pellets, I imagine.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Aug 2018 at 11:37

Originally Posted by: Online Community Member
No oral sex with pellets, I imagine.

πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

User
Posted 08 Aug 2018 at 14:12

I have tried them all!!

Pellets I found more painful than jabs  and very unreliable. And you have to keep them in the fridge which can be embarrassing when you have house guests! 

Injections WORK but getting the dose right is tricky my URO said start with 15ml I used 10 and still had a 3 hour hard on. In the end I was on 2.5.

Agree with your doc re the pills but they made me feel miserable with dull aches and blurry vision.

Good news is 3 years on and I can get away with a cock ring Thanks again for that tip Chris!!

User
Posted 08 Aug 2018 at 14:26

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
No oral sex with pellets, I imagine.

πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

 

I said I was getting an appointment with the ED Nurse to try pellets or injections. I dont think oral sex was actually on offer. But if that is the case welll injections it is thenhttp://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-tongue-out.gifhttp://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-tongue-out.gif

Cheers

Bill

User
Posted 08 Aug 2018 at 14:35
Injections don’t work for everyone, there are some men for whom nothing works including the vacuum. John was okay with injections until his priapism and after that, they only worked about a third of the time. One of the things that is out of our control is how they have been stored at the pharmacy, whether they have been left in a hot delivery vehicle and so on; we definitely had a faulty batch where every single injection failed. Dad has always used the single chamber caverject which has to be stored in the fridge and then mixed just before injecting and doesn’t seem to be as sporadic as the dual chamber version but is of a much higher dose.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Aug 2018 at 15:36
Thanks again all

I'm not sure if I will actually try anything for real at the appointment or have a chat and take either or both to try at home?

I have a slight concern of getting a stiffy that lasts to long and having to wait there for it to subside. Although I suppose if that happens atleast I'll know it works.

Cheers

Bill

User
Posted 15 Jan 2019 at 08:10
I never got thet ED clinic appointment due to staffing issues and cancellations. However I now have a repeat prescription for 5mg daily tadalafil with viagra for events. Things are still slightly and slowly improving in that department.

Urinary urge and frequency is manageable.

My next PSA test will be in about two weeks with follow up appointment another week on.

I posted the below in CJ's thread about a week ago.

β€˜β€™I so far have undetectable psa following RARP almost two years ago but with extracapsular extension there is a fare chance of recurrence. If if it does recur I too will resist scattergun RT to the prostate bed without something to target as I already suffer with IBS, fissures, hemorrhoids urinary frequency and urgency, ED etc and fear making things worse.’’

Lyn replied pointing out that a PSA increase now, after being undetectable since RARP would be typical indication of a recurrence in the prostate bed and salvage RT would likely be successful.

My thoughts are that if they don't know where in the prostate bed the cancer is they would zap the whole area and due to previous existing issues and ongoing ED and urge/frequency issues I would not want to risk making things worse so would resist RT.

I hope that if there ever is a recurrence I could wait until it could be seen on a scan so that there is a specific area to target, therefore limiting damage to other organs. I have not heard of this approach though.

Hopefully my PSA will not rise, but if it does I would rather be prepared with the right questions and arguments if appropriate at any future consultations in advance.

Any thoughts anyone please?

Cheers

Bill

User
Posted 15 Jan 2019 at 08:23
PSA less than 0.01 I don't know why you are even thinking about a recurrence!!!

Forget about it until your next test and get practicing with your knackered willy.

If you did get an occurrence then waiting until PSA greater than 0.1 and scanning for it is certainly a strategy some people use. Unfortunately you will be lucky to spot anything at that level. Like I said forget about it it most likely won't happen even with a T3A.

User
Posted 15 Jan 2019 at 08:53

The problem Bill is that we imagine the 'what's left in the prostate bed' to be a little tumour that is tangible. In reality, it would be tiny clusters of cells which wouldn't usually be seen on scans, even the best ones, until much later when it might be too late for salvage RT. 

As francij says, you are worrying about something before it happens but if it did happen, bear in mind that John still had ED when he started salvage RT/HT and is now fully functioning; most of his improvement came in the year after RT finished.

Edited by member 15 Jan 2019 at 08:54  | Reason: Not specified

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

User
Posted 15 Jan 2019 at 09:03
Thanks Lyn & francij1

Yes, PSA test anxiaty at play. I just like to know the what ifs in advance.

Both your replies are reassuring and helpful thanks.

Cheers

Bill

User
Posted 16 Jan 2019 at 11:33

My husabnd Michael is the samw age as you and had an identical pre op psa and histology as yours. His Psa waa found to be raised on a routine health check in Feb . We work in Saudi so came home to the UK in April and the cancer diagnosis was confirmed . Ww returned to the UK in June for the surgery and thankfully aa we are both teachers he had the summer to recover which was surprisingly quick . He was fully continent witin 2 weeks. He still has ED which is getting better in 5mg Cialis . He has just used his first Caverject. Michael has now had 3 psa tests at <.002. I suffer greatly from the psa anxiety , he less so. 

Everything crossed that there will be no recurrance . 

User
Posted 17 Jan 2019 at 08:49
Thanks for the reply Shabari and good luck with OH's ongoing recovery.

Cheers

Bill

User
Posted 30 Jan 2019 at 21:41
Update:

Two years today since the RARP and I just got another <0.01 PSA, so the good news continues and the PSA anxiety can do one for a while.

Urge and frequency are still a bit of a nuisance but managable

ED was very slowly improving but recently seems to have plateaued, although that has happened before and improvement continued again so I live in hope and keep trying with pump, ciallis and viagra. I finally got an ED Clinic appointment for soon and will try injections or muse.

Over the past few weeks flow has decreased from 13 to 7.5 ml/sec. I fear a stricture forming but the last few days have had some slight stinging so I hope it's an infection. Im doing a urine sample tomorrow and seeing my Uro on Tuesday.

There are many sufferers and carers whose journeys are far worse than mine and my heart and best wishes go out to you all.

Good luck to you all.

Cheers

Bill

User
Posted 31 Jan 2019 at 08:22

Great news with the indetectable PSA Bill.

Hope the other appointments help you out regarding flow and ED. 

Ian

Ido4

User
Posted 07 Feb 2019 at 19:54

I saw my Uro and he has prescribed anti biotics for a slight infection. He doughts that the infection will be causing the low flow. I will see him again in two weeks. He said that the low flow could be caused by scar tissue building up at the new bladder anastomosis. He has said that his likely approach will be to have a look with a rigid systoscope with a view to doing a dialation or a small incision if necessary while he is in there.

Flow now varies between 5 and 7ml/sec. I will ask if early intervention is best or could it be left because I dont want to agrivate anything that may effect continance or urge and frequency.

Any experiences or thoughts would be appreciated.

Maybe I should post this in a new thread with a different heading?

Cheers

Bill

User
Posted 07 Feb 2019 at 20:35

Bill

I personally keep all my personal posts on the same conversation/thread it is easier to keep track of your history. 

I started with slow flow problems a few weeks after RARP and have had numerous dilatations and cuts into scar tissue. Read my profile. Bri on here declined treatment at the last minute and as managed quite well. They do say it can take several attempts to sort the problem.

Any questions please ask.

Thanks Chris

 

Edited by member 07 Feb 2019 at 20:37  | Reason: Missing word

User
Posted 08 Feb 2019 at 06:21

Hi Chris thanks for the reply.
I had read your profile before and now refreshed my memory.
You have mentioned hemlock clips to me before and I have researched them.
Do you know if they can be seen on an ultrasound? how were yours found?
It seems your case is very rare. I asked my Uro if the op could cause incontinence and he said not normally because they would be dilating the bladder joint and not near the outer sphincter. But it sounds like that's what you had.

Bri's (Brianissac) profile doesn't mention refusing the op but I remember a post where some one actually on the slab turned it down when the risk of incontinence wad mentioned. I think that was him. I wander how he is getting on with flow now.

If the risk is significant I can manage as I am but I fear leaving it may make it more difficult or risky in the future.

Im sorry you had such bad luck with yours but it does seem you had particularly bad luck.

I need to have a more detailed chat with my Uro.

Thanks again

Cheers
Bill

Edited by member 08 Feb 2019 at 07:27  | Reason: Typo

User
Posted 08 Feb 2019 at 07:26
I fear β€˜hemlock clips’ may be poisonous!πŸ˜‰

β€˜Hem-o-lok’ clip ligations are sometimes used in abdominal surgery, but my surgeon said he didn’t like or use them. I have read about them coming loose and β€˜migrating’ and causing problems elsewhere.

Best of luck.

Cheers, John.

User
Posted 08 Feb 2019 at 07:29

Bill

I read that the clips can only be seen on certain types of CT machines at a specific setting, if they have been in there for long enough they may get coated and the coating may show up. My first clip was found just floating in the bladder the second one was sticking the urethra and needed a bit of persuasion to come out. Mine were found with the camera while investigating the very slow flow, at times down to 0.5/sec.

It was Bri who turned it down on the slab. I was 99 percent dry soon after the RARP and I did regain my continence after each of earlier dilatations. The combination of RT and further problems means I always wear a pad and do suffer with urge inconvenience, but the bladder situation means a leak is quite small.

Bri's flow was around 5MLS/sec. Subject to  advice from your team you could monitor the flow and get intervention if it gets worse. My flow declined quite rapidly, so had no choice but to have intervention. I did intermittent self dilatation after my dilations, I sometimes wonder if all the prodding into the bladder and the additional effects of the RT made the damage worse.

If the dilations are not successful there is the option of urethral reconstruction or Urethroplasty. Not a simple op.

Best wishes with you treatment. Have a look at the member "Flexi" I think he has also had stricture issues.

Thanks Chris

 

User
Posted 08 Feb 2019 at 07:34

Originally Posted by: Online Community Member
I fear ‘hemlock clips’ may be poisonous!πŸ˜‰

Best of luck.

Cheers, John.

John, I hope not, I probably still have around five in my body.

Thanks Chris

User
Posted 08 Feb 2019 at 15:43

John, I love your quick wittedness πŸ˜„. I should have checked the spelling.

Chris

Thanks for the detailed reply. It seems both you and Flexi were OK continence wise after straight forward dilations and your problem got worse due to ongoing problems. Your information will help me ask the right questions at my next appointment which will be once infection has been ruled out as the cause. I have been on anti biotics for three days and I feel the infection has gone but the flow has not improved so I think I already know that answer.

Thanks again and all the best

Cheers

Bill

 

 

 

User
Posted 08 Feb 2019 at 15:50

John 

Very good, that went straight over my head.

Thanks Chris

User
Posted 19 Feb 2019 at 16:22
Hi All

I have at last had an ED appointment. I tried Caverject 2.5mcg supervised by the nurse. It was the closest thing to a proper natural erection for over two years so really pleased about that but there was some discomfort bordering on pain and the head did not really grow.

He has given me three to try at home and suggest I try 5mcg which should be enough to get it fully working, but as the shaft was actually really hard I am worried this may increase the pain and maybe the duration. The duration was roughly one hour full on then fifty minutes gradual deflation.

Is it the same every time or might 2.5 work slightly differently if I try it again?

Any thoughts or advice please

Btw Invicorp is not an option at the moment.

Cheers

Bill

User
Posted 19 Feb 2019 at 17:19

If you are going for full penetration use the higher dose he recommended - you really need some success at this stage of the game.

Once you get confident then start backing it off.

I started at 15 but soon got down to 2.5 now I don't need them 😁😁😁. Don't exceed what your doc said!!

 

Edited by member 19 Feb 2019 at 17:21  | Reason: Not specified

User
Posted 04 Apr 2019 at 16:34
Update

I have now tried the Caverject 5mcg dose and hell what an experience! The erection happened quickly as with 2.5mcg but then the pain started. It was so uncomfortable I just wanted to get rid of it so I took some sudafed and started excercising. After four hours I was considering A&E but had had a few glasses of wine and it was now about midnight so transport was a problem. After Six and half hours it began to subside. Phew what a relief that was.

I got another EDC appointment and have now tried muse in both 250mcg and 500mcg doses with no effect. I will now persevere with the Caverject at 2.5 ml.

On the low flow I had a flow test and max was 5ml/sec. Agreed with my Uro that monitoring would be OK with a dilation in the future if I want.

Cheers

Bill

User
Posted 04 Apr 2019 at 18:18
Never leave it that long again - a prolonged erection of 4 hours or more can cause permanent serious damage.

Once it gets to a couple of hours, a cold shower, brisk walk in the cold, climbing up and down the stairs multiple times can all help but when you get passed 3 hours, you need to start thinking about A&E

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

User
Posted 05 Apr 2019 at 06:17
Thanks Lyn, yes I knew about the four hours. The problem was transport. With hindsight it was a stupid risk and I should have phoned the hospital. As it turns out it seems no harm done luckily.

Cheers

Bill

User
Posted 15 Aug 2019 at 20:32
Another six month PSA result and follow up today and the title of this thread is still appropriate. PSA still <0.01 so undetectable. Phew! PSA test anxiety seems to get worse.

Pee flow steady at 5ml/sec and up twice a night, that's inconvenient but manageable. There is obviously a stricture of some discription, Uro says probably due to scar tissue. The offer of a dilation is still on the table if I want it, but as long as it's manageable I'll leave it alone.

Urge and frequency also inconvenient but manageable.

ED - still some very gradual improvement at 2.5 years post op.

I have almost given up on the Caverject due to the prolonged ache it causes, but I'm lucky to be prescribed both daily Tadelifel and Sildenefel for "events" which has some effect but no full erection yet. I'm not giving up on that any time soon.

Since my DX and op I have done a lot of research, including what I read on this site and as a result have changed my diet and lifestyle considerably, I now exercise regularly and eat a "prostate cancer friendly" diet. I'm about 2. 5 stone lighter than pre DX and fitter than any time in the last 20 years or so.

I would just like to say that I feel very humbled by the past and more recent posts from both men and their carer's/partners who are far worse off than me and suffering from this awful disease and those carers/partners who still post and offer support to others dispite their loss, almost guilty that so far I have got away with it. I have had tears running down my face reading some recent posts.

There is some wonderful support on this site so thanks to all who post here and good luck to you all whether you are suffering from, living with or have lost someone to this awful disease which is to often so irritatingly discribed as one of the better ones to have.

All the best of luck to you all

Cheers

Biil

User
Posted 15 Aug 2019 at 22:24

Bill

Great news, if that flow has stabilized leave well alone, it might mean a little more time in the loo, but so be it. I found the stricture helped reduce my inconvenience. Perhaps some medication to reduce the night time visits ? Best wishes for the future.

Thanks Chris

User
Posted 16 Aug 2019 at 09:23

Great news Bill.

Ido4

User
Posted 23 Feb 2020 at 09:11

Next review and PSA result tomorrow. 3 years post op now.

Flow has decreased only very slightly but the problem now is only the first half of the volume comes out naturally, for the rest I have to adopt a kind of push and squirt technique. Now taking a long time to get it all out, about 8 minutes at night.

I fear I will go into retention so I'm now considering the dilation. In particular I am afraid it could happen while traveling and I have someone inexperienced trying to get a catheter in. But I also fear the dilation could effect my continence.

Also I might ask about intermittent self catheterisation/dilation but I am still concerned that it could be a migrated surgical clip. I worry about what could happen and damage could be done if catheterisation is attempted and there is a clip in the way.

Any thoughts, anyone tried self catheterisation/dilation?

Cheers
Bill

Edited by member 23 Feb 2020 at 09:39  | Reason: Added info

User
Posted 23 Feb 2020 at 09:56

Yes I have used self catherisation and I have posted about it a few times. In my opinion it is an excellent solution. 

My PCa story started with retention one Saturday night. Solved with permanent catheter for a few weeks, but then moved to clean intermittent self catheterisation (Cisc). I was lucky that my retention turned out to be temporary (though PCa isn't).

Cisc is brilliant, yes a little uncomfortable at first but you get used to it. The best thing about it is, if the problem clears up you aren't left for months with a catheter in which you don't need. BTW a catheter is bad for the sex life. 

I have not had surgery and know nothing about surgical clips so I think you need to establish if cisc is safe for you. 

I now never need to do cisc, but I still do it once every six months to keep in practice. 

Whenever I travel in th UK I always take three or four disposable catheters with me, enough that if retention suddenly recurred I could get relief and then either get back home or get to a hospital but not be in an emergency situation. 

If travelling abroad I take enough for two per day, this wouldn't be enough if I actually needed them regularly or if retention started on day one of the holiday and didn't clear up, but for me retention has not been a problem for more than a year so I can take a chance.

If you need anymore details let me know. 

Dave

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 11:40

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 14:51

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 14:59  | Reason: Not specified

User
Posted 13 Apr 2020 at 15:55

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

 

 
Forum Jump  
12>
©2021 Prostate Cancer UK