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My Prostate Cancer Surgery experience

User
Posted 22 Sep 2018 at 19:09

Hi Guys,

Another day of continued feelings of having a full bladder and feeling the need to go every hour but loo visits take around 5-10 mins and only seems like a an egg cup before I have to stop.   Then it's waiting for another hour to repeat again and then again every hour.   Is this "normal"?   If so how many days after they remove the catheter should some kind of more normal peeing activity kick in?    My catheter came out Thursday lunch time so only been 2 days and a bit so far.   Any views would be really appreciated.

Pauly

User
Posted 23 Sep 2018 at 10:01
Not fully qualified to answer as I had a supra pubic catheter which was in a long time due to complications, but even with the complications my peeing was pretty normal when the catheter was switched off and, from what I have read, your experiences are not typical.

My guess is that you still have quite a bit of swelling/inflammation at the new joint. Hopefully this will resolve soon but would suggest contacting your urology nurses sooner rather than later. Do you have any blood in your urine or signs of infection?

Nick

User
Posted 23 Sep 2018 at 14:11

Hi Nick,

No sign of infection or bloods in my pee which is pretty cleqr most of the time.   Just sometimes getting stabbing pains (my bladder being overfull?) and the never ending urge to go.   Will see how things go over next 24 hours as that would by 4 full days since catheter was removed Thursday lunchtime.   

No problems eating or drinking but getting around can be difficult although manageable.   I wouldn't mind if leaked into my pads just to relieve the pressure but nothing.   Have to sit on the loo and wait and wait and wait for anything to happen, even when I squeeze my pelvic floor muscle just get little dribbles even after 5 minutes   I can sleep with it but only for 30-50 minutes at a time and then it's back to bathroom to repeat.   As I said before in the larger scheme it's probably a short term problem but was just wondering how long to give it.

All the best

Pauly

User
Posted 23 Sep 2018 at 15:06
I’ve had problems with urine retention both times I’ve had a catheter in. In my case I think the problems have been primarily psychological rather than physical: the more desperate I am for my muscles to relax in order to allow me to urinate, the more impossible it is to relax them. What happened both times in my case, however, is that when I got to be absolutely at bursting point I was finally able to pass a little urine and then things gradually relaxed after that, but in both cases it took several days to return to a state where I was able to urinate normally again.

Chris

User
Posted 23 Sep 2018 at 16:11
HI Rich,

Thank you for your kind wishes and sorry to hear of some bad experiences. Having a Catheter in for 9 weeks must have been miserable and makes me feel even luckier now. I cannot begin to imagine your relief when it was eventually removed !!

Having a clamp left in must have been awful and that sounds like a basic mistake to make so not surprised the specialist was not impressed. I guess if staff are over worked it can lead to mistakes and that should not be the case when people need a high level of care.

Good news that you were dry within 3 weeks and you are feeling positive

I hope your recovery continues to go well

Best Wishes

Paul

User
Posted 23 Sep 2018 at 18:19

Well the urine issue has got worse and now hardly peeing plus top left front on my stomach  has an underlying swelling that is hard and sensitive to the touch.    Walking has become more of a shuffle and feels like I have balloon of water strapped to me.  At A&E now waiting to be seen so can establish what's happening and any remedies.   Expecting a long wait into the night as board showing 3 hours waiting time.  Guess bladder or maybe kidneys although swelling us around the drain exit wound so perm anyone from those?

Pauly 

User
Posted 23 Sep 2018 at 18:27
So sorry to hear that, Pauly. I do hope A&E are able to bring you some comfort, at least. Not the nicest place in the world to have to go.

Please keep us updated, and I'm keeping my fingers crossed for you.

Chris

User
Posted 23 Sep 2018 at 18:32

thanks Chris will update when I know more.  Part of hopes it's nothing and have wasted every one's time and it's an easy fix.   Other part hopes tat if it serious then I did the rights thing. 

User
Posted 23 Sep 2018 at 18:45
If you're in pain you definitely did the right thing! I was embarrassed when I phoned "999" when I was in horrendous pain after being completely constipated for 8 days after my operation, but they assured me I'd done absolutely the right thing (and A&E sorted me out).

Chris

User
Posted 23 Sep 2018 at 18:48

Pauly

We often hear on here don't let any Tom Dick or Harry shove a catheter into your bladder following RP. I am sure you are in good hands but worth a reminder to the people treating you. 

Best wishes

Thanks Chris

User
Posted 23 Sep 2018 at 18:50

bloods nurses had 3 stabs trying to get sample all failed...ouch.  waiting for someone to try next. ...not nice 

User
Posted 23 Sep 2018 at 20:04

just had the best pee in ages filled half litre  bowl...phew 

No newst but bladder scan suggests issue is.not pee related.    Guessing likely culprit is would be infection from the drain which has never really healed right.   Hope urologist confirms this and gives me a anti bioptics and sends me home.

User
Posted 23 Sep 2018 at 20:35
That’s good to hear, Pauly, but if they just send you home with antibiotics aren’t you going to be having the same problem again when you get back home?

Chris

User
Posted 23 Sep 2018 at 20:39

I will let you know when the doc tells me.   Still waiting for someone to see me.   

User
Posted 24 Sep 2018 at 08:00

Hi Guys,

Finally got out of A&E at @11pm yesterday.

Doc confirmed that the drain wound area has become infected post op and was in his words "full of puss"....I can definitely feel and see the difference on my left side which is larger than my right side now so must be a fair bit of muck down there at the moment.

No action taken last night, just given a course of anti-biotics Co-amoxiclav (3 doses per day over 7 days).

Glad I went to A&E in the end, it was the right thing to do otherwise no telling how much worse I would be feeling and how much the infection would have spread etc.

Fingers xxd this works out as the peeing seems to have actually improved since yesterday and got 2 hours kip instead of only 1 hour before visiting the toilet last night.  That extra hour really makes a difference...can't wait for that to become 3 hours.

All the best

Pauly

User
Posted 24 Sep 2018 at 08:39
That definitely sounds as though it's something that needs treatment sooner rather than later, so you did absolutely the right thing in going to A&E!

Hope the infection clears up quickly and that things improve for you.

All the best,

Chris

User
Posted 24 Sep 2018 at 09:21
Ouch! Can relate - my sympathies!

Only thing to add is that this needs to be followed up with the urology dept that did the op sooner rather than later, if only to make sure that they are fully aware of what is going on. Hopefully arrangements were made as part of your A&E encounter but if not I suggest ringing the specialist nurse today. Need to be sure that the infection gets fully resolved.

If you've got issues, don't be shy about contacting the nurses. All the ones I've had dealings with have been great but they can't help if they don't know there's a problem. And don't hang on until Friday afternoon 'cause that usually results in a weekend A&E visit. I have three of those t-shirts.....

Hope you are much more comfortable now!

Nick

User
Posted 24 Sep 2018 at 12:15

Just spoke with my hospital urology office and advised them what has happened.   They checked their records and confirmed that blood results are on the system from my visit last night to A&E and count were seen at 16.8 (normal range is between 4-11) so definitely got an infection that my immune system is responding to.   Still waiting for other results on swabs from the wound area and urine to be captured.   Their advice was to take the new course of anti-biotics and see how things are at the end of that in a week's time.   If no improvement might need something powerful next.

User
Posted 15 Oct 2018 at 15:02
HI Rich

Apologies I thought I had replied to your post a few weeks ago but I cannot now see it so it must have gone into the Internet ether so will try again!!

I am so sorry to hear you had the Catheter in for 9 weeks!!! I was lucky but even after only 7 days I was so relieved to have it taken out. I feel for you.The clamp on your catheter tube sounds really painful too and you must have been in agony. I am not surprised the specialist said he would be "having words"

Great news you were dry within 3 weeks too. After 5 weeks I am not yet dry but now on one pad a day and it is improving and I saw the Surgeon today who said I am ahead of schedule. How are you doing now ?

I got my Lab test results today. Thankfully the results showed all the cancer was removed and that the tissue he removed was surrounded by a layer of normal tissue so a clear or negative surgical margin. I was so relieved I shed a few tears.

He also said the laboratory report showed the cancer was more aggressive than the original biopsy and tests showed and that the Gleason Score that they downgraded from a 4:3 to a 3:4 was in fact the more aggressive 4:3 and I had more of the 4 than originally was thought which proved I needed the operation and the suggestion of going on active surveillance as I did at first was not the right thing to do.

I am now waiting for the results of my first PSA Blood test following the OP

I know like you I am lucky as the outcome for some is not as positive

Best wishes

Paul

User
Posted 15 Oct 2018 at 15:12

Hi Pauly C

 

Sorry to here what you have been going through it sounds traumatic !! I have not been on line so just seen your posts

How are you doing ?

Best wishes

 

Paul 

User
Posted 15 Oct 2018 at 17:54

Hi Paul,

Thanks for asking, btw I saw you had some excellent news following your op re zero cancer cells being found outside the prostate, fantastic result.

We both had our ops at the same time in September (mine was 10th).   I went back to work after 4 weeks (office based) and been doing ok since the infection cleared up with the anti biotics.   

Frustrating that the urge to pee is as strong as ever and still going every hour or so even at night.   Docs say no sign of any other infections in my urine etc and just have to wait until the sensitivity reduces.   Driving me slightly crazy as broken sleep means energy levels are low and wondering how and when I can ever expect to get back to some normality but it is what it is just a waiting game for me I guess.  Next follow up with the surgeon 15 november to see if any psa levels detectable.

For now just dog tired all the time but at least I am finally off the meds and no need to do those daily belly jabs which seem to go on and on.

Looks we both had great outcomes from surgery so fingers crossed that's it.

 

 

 

 

User
Posted 15 Oct 2018 at 18:34
Hi Pauly C

Yes thank you as you can imagine It was a big relief to get some good news !!

Yes I remember my Op was the day after yours the 11th Sept. You are doing well to go back to work after 4 weeks and glad your infection has cleared up. I had a minor infection ten days ago and hopefully a weeks anti biotics have cleared it up. I went for another test on Friday

Going every hour at night is a lot and no wonder it is driving you crazy as you cannot get a decent sleep and then you must be tired for work. I hope the sensitivity improves soon for you. I am going around every two hours a night and the surgeon said this is probably normal for me and is not unusual

Have you had a PSA test since your OP or will November 15th be your first one?

Yes sounds like we are both fortunate with our outcomes

I hope the urge to pee at night improves for you soon

Best wishes

Paul

User
Posted 16 Oct 2018 at 02:11
At around five months after my operation I find I have nocturia too, and have to get up around every two hours, whereas I did not before as I had no symptoms. I drink a lot of beer so that may be a contributory factor.....😉
User
Posted 16 Oct 2018 at 10:34

Originally Posted by: Online Community Member

Hi Paul,

Thanks for asking, btw I saw you had some excellent news following your op re zero cancer cells being found outside the prostate, fantastic result.

We both had our ops at the same time in September (mine was 10th).   I went back to work after 4 weeks (office based) and been doing ok since the infection cleared up with the anti biotics.   

Frustrating that the urge to pee is as strong as ever and still going every hour or so even at night.   Docs say no sign of any other infections in my urine etc and just have to wait until the sensitivity reduces.   Driving me slightly crazy as broken sleep means energy levels are low and wondering how and when I can ever expect to get back to some normality but it is what it is just a waiting game for me I guess.  Next follow up with the surgeon 15 november to see if any psa levels detectable.

For now just dog tired all the time but at least I am finally off the meds and no need to do those daily belly jabs which seem to go on and on.

Looks we both had great outcomes from surgery so fingers crossed that's it. 

Mechanically, there should be no reason for night weeing now; if it continues you could ask the GP whether there are any bladder training classes in your area. Sometimes the brain stops trusting the messages it gets from the bladder leading to habitual waking. 

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

User
Posted 16 Oct 2018 at 15:29

HI LynEyre 

 

re your comment that  Mechanically, there should be no reason for night weeing now if it continues you could ask the GP whether there are any bladder training classes in your area. Sometimes the brain stops trusting the messages it gets from the bladder leading to habitual waking. 

Thanks very much for this suggestion which I am sure others will also find helpful

 

Best Wishes

 

Paul 

User
Posted 16 Oct 2018 at 16:24
Hi Gowerboy - no problem.

When you want to quote someone's post, just click on the " sign at the side of the post - once it appears in the text box, move your cursor to after the final bit of type and start writing.

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

User
Posted 16 Oct 2018 at 17:44

Hi Lyn,

Thanks very much for your suggestion which I will be implementing as of today.   Bladder training seems simple enough although it can be a long process so sooner I get started the better.   Just got to tell my brain to ignore the pee signals for long enough so I can visit the loo every 2 hours instead of every hour so will keep you and Paul how that works out.   Surprised my GP/Nurses never suggested this when I told them several times since my op so your advice is greatly appreciated.

Pauly, let me know how you get on.  BTW my next visit to the Urology dept will be mid november and I will be getting blood/psa tests 1 november.

Pauly

 

User
Posted 16 Oct 2018 at 19:33

Originally Posted by: Online Community Member
Hi Gowerboy - no problem.

When you want to quote someone's post, just click on the " sign at the side of the post - once it appears in the text box, move your cursor to after the final bit of type and start writing.

 

Hi LynEyre

Thank you for your advice. I must admit I did wonder what it was for and now thanks to you I know :) 

User
Posted 16 Oct 2018 at 19:37
Ha ha

Pauly, best to do it under the watchful eye of medical people if you can - it is important not to overdo it.

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

User
Posted 16 Oct 2018 at 19:38

Hi Pauly,

Good luck with the Bladder training and let us know how you get on

I will let you know how I get on and likewise do the same for your PSA test on Nov 1st

 

Best wishes

 

Paul 

User
Posted 17 Oct 2018 at 15:40

Just an update to say I got the results of my first PSA Test following Robotic Surgery 5 weeks ago and I was so relieved to be told that my PSA level is now less than 0.1 ng/Ml which is what they hope for. I never take anything for granted and I know I am fortunate. As I think I said previously the surgeon said that on examination the Prostate Cancer was more advanced and aggressive than at first thought and at some stage it would have broken out of the prostate and I was a Gleason 4:3 and not 3:4 . I was at one stage told I could go on active surveillance or have treatment. My wife and I are so relieved that I chose treatment. 

 

Paul 

User
Posted 17 Oct 2018 at 16:10
Congratulations.

Long may you have low PSA results.

P

User
Posted 17 Oct 2018 at 16:49

Pete

Thank you for this it is appreciated 

Best wishes

 

Paul 

User
Posted 17 Oct 2018 at 17:45

Hi Paul,

WOOOOOOHOOOOOOO!!!!!!!!!!!!!!!!!!

 

Fan-bloody-tastic news really really pleased for you mate, get your rags on and party like it's 1999.

 

Sincerely

 

Pauly

 

User
Posted 17 Oct 2018 at 17:58

Thank you so much Pauly C 

yes again I shed a few tears when the Nurse rang me. It was a relief 

Hope you are doing ok too 

Best wishes

Paul 

User
Posted 17 Oct 2018 at 21:45

Great news, long may it continue.

Ian

Ido4

User
Posted 17 Oct 2018 at 23:17

Thank you Ian for this

Best Wishes to you too

Paul 

User
Posted 23 Oct 2018 at 16:45

Good to hear your positive experience. Thanks for taking the time to post your story. I am having my pre-op checks next week (1/11/18) and then I am waiting for a date for my robotic prostatectomy. Broomfield Hospital in Essex. Feeling more comfortable with the prospect now.Good luck to you. Steve

User
Posted 23 Oct 2018 at 22:49

Thanks for this Steve. I wish you all the very best with the Surgery at the Broomfield hospital in Essex. I was nervous before surgery which is natural but now I am glad I had it. Let us know how you get on.

Best Wishes

Paul

User
Posted 24 Oct 2018 at 09:05

Yes I will. Thanks.

User
Posted 25 Oct 2018 at 10:55

Hi Paul and Chris

Thanks for the story so far, yours mirrors mine in a lot of areas, good luck with the future

If sleeping is an issue, and it was for me, especially as i put it, jumping legs syndrome!

I found taking magnesium tablets from your local independent natural health food shop helped immensely.

my surgery was on the 23rd July, still pain on left hand side, although Raw legal CBD Oil is again helping 

just little thought to share, help

Andy

 

User
Posted 29 Oct 2018 at 10:56

Andy, I suffer from restless legs syndrome already, let alone after I've had my surgery. I used to take crampex which seemed to help but it is no longer available. The magnesium tablets sound like they are worth a try. Thanks for sharing.

User
Posted 30 Oct 2018 at 07:22

Sorry for the late congratulations. What great news to get. That is the kind of feedback everyone hopes for.

Two weeks ago I got the news following my biopsy that I have prostate cancer cT2a, 3+4. There were two recommendations given to me: 1) Have a procedure (removal or RT) or 2) AS. Fortunately, I have a great GP and his advised removal; pointing out I'd really been doing AS for years now, as my PSA levels have slowly risen from 3.9 to 7.9. So, I am checking with consultants to see how soon a surgery can be scheduled. My biggest decision will be whether to go with a standard RALP approach or opt to go with Retzius. Some of this will depend upon timing.

Feedback like yours and the others is so very informative and helpful, and goes well beyond the raw statistics of ops performed and all.

Best wishes on your continuing recovery and return to good health.

 

User
Posted 01 Nov 2018 at 13:37

Well done long may the results be good

Its a great feeling getting a good result i had my op 19th September 2017 and results are still <0.02 which is great 

User
Posted 16 Nov 2018 at 19:01

Hi Guys,

Been a while since I posted as I was waiting to see my urologist this week.

Had my appointment on Thursday which was my follow up to robotic surgery on 10 September 2018 so it was my first post op blood test results that were being provided to me.

Consultant confirmed my PSA is currently 0.1 which he said was the minimum measurable assessment so that was very good to hear but as he reminded me this is very early days and there will still be a long way to go in terms of follow ups and then next one will be in 3 months (February 2019).

Will enjoy this weekend and Xmas on the back of that news.

I wish everyone well and hope for good outcomes for all of you.

Sincerely

Pauly

User
Posted 16 Nov 2018 at 19:04
Great news. Many hospitals now don’t assess psa lower than 0.1 due to reliability issues and over-treatment based on results which could alter purely due to machine and calibration issues. My advice to you ( easier said than done ) is that with a result as low as that I’d just have an utter blast next 3 months. Good luck

If life gives you lemons , then make lemonade

User
Posted 16 Nov 2018 at 23:04
Good news Pauly.

Ido4

User
Posted 28 Nov 2018 at 11:43

Originally Posted by: Online Community Member

Good to hear your positive experience. Thanks for taking the time to post your story. I am having my pre-op checks next week (1/11/18) and then I am waiting for a date for my robotic prostatectomy. Broomfield Hospital in Essex. Feeling more comfortable with the prospect now.Good luck to you. Steve

HI Steve thank you for this and if you have had your robotic prostatectomy I hope it went well and if not let us know.

Best wishes

 

Paul 

User
Posted 28 Nov 2018 at 11:46

Originally Posted by: Online Community Member

Hi Paul and Chris

Thanks for the story so far, yours mirrors mine in a lot of areas, good luck with the future

If sleeping is an issue, and it was for me, especially as i put it, jumping legs syndrome!

I found taking magnesium tablets from your local independent natural health food shop helped immensely.

my surgery was on the 23rd July, still pain on left hand side, although Raw legal CBD Oil is again helping 

just little thought to share, help

Andy

 

HI Andy

Thanks for sharing this and good luck to you too for the future and I hope your recovery is going well

Best wishes

Paul 

User
Posted 28 Nov 2018 at 11:49

Originally Posted by: Online Community Member

Sorry for the late congratulations. What great news to get. That is the kind of feedback everyone hopes for.

Two weeks ago I got the news following my biopsy that I have prostate cancer cT2a, 3+4. There were two recommendations given to me: 1) Have a procedure (removal or RT) or 2) AS. Fortunately, I have a great GP and his advised removal; pointing out I'd really been doing AS for years now, as my PSA levels have slowly risen from 3.9 to 7.9. So, I am checking with consultants to see how soon a surgery can be scheduled. My biggest decision will be whether to go with a standard RALP approach or opt to go with Retzius. Some of this will depend upon timing.

Feedback like yours and the others is so very informative and helpful, and goes well beyond the raw statistics of ops performed and all.

Best wishes on your continuing recovery and return to good health.

 

 

Hi Carl M

I have only just seen this and thank you for your kind comments

Have you decided what treatment to have or had it yet ?

Best wishes with any decision you make and let us know how you get on

Paul 

 
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