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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 ‘hemlock clips’ may be poisonous!😉

‘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 ‘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!😉

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 😄. 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

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