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prostate operation

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User

Posted 22 Feb 2019 at 22:02

That's good news on the PSA front.

Eventually I got a pump supplied and use it regularly (while brushing my teeth! Looks weird but so what). I couldn't make he rings work so hasn't worked as an aid to regaining any sexual ability. After a long wait to see someone in the Urology Dept of my local hospital, an appointment which was a complete waste of time, I paid to see a specialist who recommended Invicorp which my GP then maintained on prescription. Its been brilliant. Painless and effective.

I hope that you have found something that works for you.

All the best

stu k

User

Posted 23 Feb 2019 at 05:11

Hi stu k

thanks for the thumps up, sorry to see you needed further treatment and your cancer was upgraded, not what you want to hear when you go for the operation but hopefully the follow up treatment gets rid of the cancer for good. I was lucky my cancer was down graded and totally contained in the prostate so hopefully I don't have any further problems but it's still a worry every time you go for a PSA test that the dreaded thing has returned. As for the pump it's a bit of a come down when you can only get a erection using this contraption, I find it works well and can maintain a erection using the rings, it is a bit of a passion killer when you have to pump it up (haha). I was reading about the Invicorp injections do they work straight away or is it similar to using the pump and how long does the erection last.

thanks again Stu k and good luck with your treatment hope all goes well.

eddy.

User

Posted 23 Feb 2019 at 10:34

Eddy, the next time you see the ED nurse you can ask about the injections and creams - she will explain the pros and cons and will probably do it there and then to show you how.

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

User

Posted 23 Feb 2019 at 10:46

Eddy, sent you a pm

regards

stu k

User

Posted 03 Jun 2019 at 15:56

PSA test tomorrow followed by my results on the 13th June and that's my first year out of the way since my operation. The last 3 tests have been clear so hopefully this one is the same but you do start to get a bit twitchy when the time comes around. I am pretty much continent now, but now and again if I cough or sneeze I leak very slightly but its not a problem at all. I still have no ability to get a erection and I can't say its ok because its not but it's something you just have to cope with.

This last year has not been easy at all, I still have times when I feel sorry for myself and think why me, but you just have to get on with it. The support from my family and friends has been great at helping me cope with this but most of all the support from my wife has been fantastic.

So hopefully my check up goes ok and I will post my results next week.

User

Posted 03 Jun 2019 at 21:45

Re erections it's NOT something you have to put up with. There is a treatment option for pretty much every failure cause, the question is whether you can put up with the side effects or associated risks!

Re PSA anxiety it never goes away!

User

Posted 03 Jun 2019 at 22:16

It's worth keeping up with the penile rehabilitation too (vacuum pump, etc). Someone here has had recovery after 3 years without nerve sparing - I guess nerves can regrow in some cases. (A friend severed nerves in his arm when a window broke and speared him, and those nerves regrew over 18-24 months - I don't know if the same can happen with erection function nerves.) Even if they don't, you want it fully working for injections, creams, pump/rings, etc. If you give up waiting, an implant might be an option too.

User

Posted 03 Jun 2019 at 22:42

Originally Posted by: Online Community Member

The stats at the national urology conference in 2017 - 10% of men who had full nerve sparing never have an erection again. The % for men who had partial or non nerve sparing is obviously worse.

I communicate with a wife whose husband had full nerve sparing at the same time as John. He has tried everything; even the pump failed to produce any kind of response. Sadly for some men, nothing works and, as is the case with men who are left with permanent incontinence, it is important not to suggest that they are simply not trying hard enough or have given up too easily.

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

User

Posted 04 Jun 2019 at 08:36

It’s a year today since my operation, and my truncated Thomas has shown no sign of life since then, despite partial nerve-sparing surgery and attempts at chemical erectile assistance.

I am grateful to be cancer-free😉 and continent. I can still enjoy a sort-of orgasm.

Quite happy.

Cheers, John.

User

Posted 13 Jun 2019 at 17:19

Had my 12 month appointment today with the consultant that did the operation. My PSA was undetectable for the 4th time and I have now been put on 6 monthly checks at my GP, the consultant said he didn't expect any further problems so all in all I too am quite happy John, just have to cope with the impotence but I must say the vacuum pump does work and is keeping my equipment healthy.

User

Posted 17 Jun 2019 at 17:09

My actual 12 months Diagnosis.

Prostate cancer Gleason 3+4=7 stageT2c NO with negative margin.

Robotic assisted radical prostatectomy and bilateral pelvic lymph node dissection 14/06/2018.

left lower limb lymphoedema.

On going erectile dysfunction.

04/06/2019 PSA 0.003 ug/l.

Well I must say not a lot to complain about!! haha.

User

Posted 17 Jun 2019 at 22:52

Originally Posted by: Online Community Member

I communicate with a wife whose husband had full nerve sparing at the same time as John. He has tried everything; even the pump failed to produce any kind of response.

That sounds like very poor blood supply to the penis (assuming correct pump usage). It does happen in men who haven't had PCa where it can be an early sign of cardiovascular disease, commonly preceding the first heart attack or angina by about 3 years.

User

Posted 17 Jun 2019 at 23:14

Great PSA result Eddie - hopefully the ED will improve.

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

User

Posted 17 Jun 2019 at 23:22

Originally Posted by: Online Community Member

I communicate with a wife whose husband had full nerve sparing at the same time as John. He has tried everything; even the pump failed to produce any kind of response.

NHS stats are (were) that approximately 10% of men never have an erection again. Nothing wrong with his pump technique that I could ascertain and he was mid-50s at dx. Nine years on the husband in question hasn't yet had a heart attack, there is no diabetes and I am not aware that anyone has raised questions about cardiovascular disease, he was just one of the unlucky ones, it seems. It didn't help that he lived in the area of a small Trust and travelled out of area for private RP - his local NHS then refused any kind of ED support or treatment so there was a significant delay in dealing with it which probably led to major atrophy.

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

User

Posted 18 Jun 2019 at 04:49

Thanks Lyn. Not holding out much hope regarding the impotence absolutely no sign of life down below since the op.

I find it surprising to read some people are having problems with the vacuum pump I would have thought it was a sure way to get a erection, it's been a game changer for me mentally as it does give me the ability to have a erection .

eddy...

User

Posted 18 Jun 2019 at 18:18

Hi I am glad to hear you are progressing well after your OP, I had robotic assisted prostatectomy Sept 29th 2016 so nearly 3 years post OP, I still wear the smallest of pads mainly small drips after going to the toilet, erections started after about 18 months now pretty much normal it all just takes time, I still remember when I had my catheter out I just leaked everywhere it was just awfull and I never thought I would be where I am today about 98% continent erections almost normal and best of all PSA undetectable, best wishes to all on this site,

Paul

User

Posted 22 Dec 2019 at 08:27

18 months since my op and my PSA is still undetectable so all is looking well for the future, I have been handed back to the doctors and now have a 6 monthly PSA check. Incontinence pretty much cured but I do leak sometimes when I sneeze or cough which can be annoying depend where I am. Erections are a thing of the past no sign of movement but I do use a vacuum pump which is a game changer and keeps me healthy down below. All in all I could complain but I feel very lucky I am not in the same situation some people are on this site.

I wish everyone a merry Christmas and hope 2020 is a better year for you all.

User

Posted 24 May 2020 at 12:00

I've not been on for a while but I was wondering if anyone has a problem with sharp pains in there bladder area especially thought the night when it's full and you need the toilet when you wake up. the pain goes straight away when I have a wee, I thought it might be pressing on a nerve when it's full seeing my prostate has been removed.( 2 years ago).

User

Posted 25 May 2020 at 08:05

Hi wow, that’s amazing how quickly you’ve had it all done. I was diagnosed Dec 19, 2019 and am still waiting for my surgery. My score was 4&3 and psa was 13. It’s nice to hear that all went well and your not in to much pain. Hope you have the motion your expecting and speedy recovery.

Car.

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