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Robotic prostatectomy still not recovered

User
Posted 21 Jun 2024 at 19:20

Hi Guys,

I'm 8 weeks post Robotic prostatectomy and still suffering fatigue, pain in the pelvic floor muscles during and after defecation, pain and weakness in my lower stomach muscles and ligaments, urination is ok. I tried to ride my bike the other day but it was too painful to sit on the saddle! I was just wondering if anyone could tell me if this is normal or have I suffered extra damage during my operation? the discharge summary states I should be back to normal activities by now and my consultant was reluctant to comment.

Any feedback would be greatly appreciated  

Kind regards Ross.

  

User
Posted 22 Jun 2024 at 08:17

Good morning Ross.

I'm sorry to see that you've had to find us but I'm glad that you have. Welcome to the forum mate.

I've had the same op about 16 months ago and didn't suffer any of the abdominal pains that you are describing. However, I am aware that there can be big recovery rate differences and seem to recall other posters suffering similar symptoms  to yours. How are you coping otherwise? How is your incontinence?

Constipation is often a problem following surgery. Is it possible that you strained yourself going to the loo?

You'll soon be due your first PSA post op check and it would be worth telling the clinician about your difficulties. Have you had your post op, histology results consultation yet?

If you intend staying, it maybe an idea to give a very brief outline of your journey on your profile. It will help others to understand your exact condition and it will help you not having to repeat what treatment you've had.

Best of luck.

User
Posted 22 Jun 2024 at 12:48

Hi Ross

I think Adrian meant for you to put that in your profile - it's a useful area for people to get your storyline at any point - maybe cut & paste what you wrote into it. :)

Click My Account at the top of the page and then Edit Profile.

Good luck - it does sound as you may have been forcing things toiletwise rather than letting it happen naturally - especially with the extra stitches. It should heal ok, just maybe take a little longer.

Edited by member 22 Jun 2024 at 12:49  | Reason: Not specified

User
Posted 22 Jun 2024 at 12:57

I think you're doing brilliantly mate, especially with incontinence. To be as in control as you are in a couple of months is brilliant. I'd guess your consultant is right about the internal stitches causing a bit of pain, if that's the case it's well worth it for you to be as dry as you are so quickly.

I hope your speedy recovery continues. If you could find time to occasionally update us all,  it would help others going through the same treatment. Unfortunately the very nature of this site is heavily biased towards bad outcomes. It's refreshing and uplifting to hear about successful results.

User
Posted 22 Jun 2024 at 15:37

If you're anything like  I was Ross, you've probably been sleeping less well than you used to. That maybe the cause of your fatigue. Plus it is a big op and your body is still recovering. I'm afraid I know little about testosterone levels, and if the op affects them. 

I feel more fatigued now than I did pre op but I'm not sure if that's due to the op, or just getting older, or another cardiac health issue I have.

 

User
Posted 22 Jun 2024 at 16:10
Testosterone is produced by the testicles primarily and secondarily by the adrenal gland and neither are affected by RP - so I would count that out as a cause.

As Adrian says, although you only have 5 small holes to show for it, RP is some serious abdominal surgery (you can watch videos of it on youtube if you want) and that takes it out of you as the body recovers.

Just take things easy for a while.

User
Posted 23 Jun 2024 at 14:18
That really depends on the type of work you do - in an office then you are likely safe to go back obviously as long as you have easy access to toilets. But if you are doing manual labour or on your feet all day then it does sound too soon.

Maybe in the UK they have a 'recommended recovery time' to work from?

User
Posted 24 Jun 2024 at 12:21

Originally Posted by: Online Community Member
Someone with cancer should be automatically taken out of that system paid the benefits their entitled to
until their either declared fit by their doctor or have passed away.

I agree with that on principle, but when 1 in 2 people are going to suffer from some sort of cancer during their lifetime, is it economically possible? There are folk on here that run marathons and climb mountains when  dealing with our disease. It could be argued that if they capable of that they are capable of work.

Edited by member 24 Jun 2024 at 12:25  | Reason: Not specified

User
Posted 24 Jun 2024 at 14:27
I think the challenge is that there are so many different types of Cancer and some have a low impact on lifestyle and some are highly aggressive. PCa is generally not a killer unlike some of the more aggressive variants.

Given the state of the UK finances (I left it a long time ago) then I can imagine the pressure that those who have to ensure that those claiming are legit must be under.

Someone, a couple of months post RARP doing a desk job would likely be able to resume work - I am sure plenty of self-employed desk jockeys are back as soon as they can. Physically challenging jobs would definitely require longer to be fit for work.

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User
Posted 22 Jun 2024 at 08:17

Good morning Ross.

I'm sorry to see that you've had to find us but I'm glad that you have. Welcome to the forum mate.

I've had the same op about 16 months ago and didn't suffer any of the abdominal pains that you are describing. However, I am aware that there can be big recovery rate differences and seem to recall other posters suffering similar symptoms  to yours. How are you coping otherwise? How is your incontinence?

Constipation is often a problem following surgery. Is it possible that you strained yourself going to the loo?

You'll soon be due your first PSA post op check and it would be worth telling the clinician about your difficulties. Have you had your post op, histology results consultation yet?

If you intend staying, it maybe an idea to give a very brief outline of your journey on your profile. It will help others to understand your exact condition and it will help you not having to repeat what treatment you've had.

Best of luck.

User
Posted 22 Jun 2024 at 12:06

Hi Adrian 

Thanks for your quick reply 

yes I've had my first blood test and consultation (PSA was zero)

incontinence wise I have pretty much recovered

I did mention to the consultant about the pain and he said they had put stiches in the floor muscle to help with incontinence? and to take it easy with the rehabilitation (A bit vague I know!) 

I might of injured myself going to toilet but It was pretty much like it from the get go! 

Apart from that everything went smoothly, from diagnosis to operation under 6 months, I can't fault the NHS, they were all fantastic and the nurses on the ward have a really difficult job putting up with some cantankerous, attention seeking old men! lol 

As far as my History go's not really much to tell but it might help as a warning! 

Around September time last year (2023) I had a bit of a problem burning pain in my bladder and trouble peeing.

I booked an appointment with my GP's but the symptoms went away before I attended, I was given a prostrate exam which seemed normal and a PSA blood test, I was started on antibiotics for suspected prostratitis.

the blood test come back a bit high so I was sent for a MRI scan which come back normal size prostrate but an area of concern.

I was then sent for a biopsy and other tests in December and everything seemed ok (prostrate exam, urine flow etc)

up until this point I had no more symptoms at all and I was quite confident it was a false alarm.

Unfortunately a few weeks later the biopsy come back positive for cancer 4+3. 

I was then called back to the Urology Clinic to discuss my options going forward (we are into January 2024 now)

which was Surveillance and hormone tablets, radiation therapy or a robotic prostatectomy.

because of my age (58) we agreed on the Prostatectomy over other the treatments.

The  reasons was A) I was going to have to have it done at some stage so why put it off,and there is more risk of it spreading with surveillance, B) the radiation treatment is normally aimed at older patients.

So then come April I was in having my operation and out again 24hrs later. everything was a bit difficult and painful for the first month but thing have slowly got better from then on.

At this Point I would really like to stress, apart from that one weekend in September all the way through to the operation, I never had any symptoms! and a very nearly never bothered going to my GP's appointment in the first place! which obviously would of meant I could of been going around undiagnosed with cancer until it was too late! 

So people if in doubt you really need to get yourselves checked out👍

 Good luck Ross

 

 

   

   

User
Posted 22 Jun 2024 at 12:48

Hi Ross

I think Adrian meant for you to put that in your profile - it's a useful area for people to get your storyline at any point - maybe cut & paste what you wrote into it. :)

Click My Account at the top of the page and then Edit Profile.

Good luck - it does sound as you may have been forcing things toiletwise rather than letting it happen naturally - especially with the extra stitches. It should heal ok, just maybe take a little longer.

Edited by member 22 Jun 2024 at 12:49  | Reason: Not specified

User
Posted 22 Jun 2024 at 12:57

I think you're doing brilliantly mate, especially with incontinence. To be as in control as you are in a couple of months is brilliant. I'd guess your consultant is right about the internal stitches causing a bit of pain, if that's the case it's well worth it for you to be as dry as you are so quickly.

I hope your speedy recovery continues. If you could find time to occasionally update us all,  it would help others going through the same treatment. Unfortunately the very nature of this site is heavily biased towards bad outcomes. It's refreshing and uplifting to hear about successful results.

User
Posted 22 Jun 2024 at 14:50

Hi Adrian and Steve,

Thanks for your advice and  encouragement👍 

I was just wondering if the prostatectomy would of lowered my testosterone levels

as I'm still feeling quite fatigued 

regards Ross 

 

User
Posted 22 Jun 2024 at 15:37

If you're anything like  I was Ross, you've probably been sleeping less well than you used to. That maybe the cause of your fatigue. Plus it is a big op and your body is still recovering. I'm afraid I know little about testosterone levels, and if the op affects them. 

I feel more fatigued now than I did pre op but I'm not sure if that's due to the op, or just getting older, or another cardiac health issue I have.

 

User
Posted 22 Jun 2024 at 16:10
Testosterone is produced by the testicles primarily and secondarily by the adrenal gland and neither are affected by RP - so I would count that out as a cause.

As Adrian says, although you only have 5 small holes to show for it, RP is some serious abdominal surgery (you can watch videos of it on youtube if you want) and that takes it out of you as the body recovers.

Just take things easy for a while.

User
Posted 23 Jun 2024 at 09:44
Thanks Guys

one of the reasons I ask these questions is I have the DWP trying to pressurize me into going back to work!

they have been on my case since day 1 TBH and I had to get the nice people mcmillan to get them to back off!.

cheers Ross

User
Posted 23 Jun 2024 at 14:18
That really depends on the type of work you do - in an office then you are likely safe to go back obviously as long as you have easy access to toilets. But if you are doing manual labour or on your feet all day then it does sound too soon.

Maybe in the UK they have a 'recommended recovery time' to work from?

User
Posted 24 Jun 2024 at 10:22

Hi Steve

I work construction

In the UK we have a universal benefit system where just you get lumped in with, and treated like all the other benefit claimants!
and despite being signed off sick by a doctor, you still get someone from the benefits office calling you every 2 weeks to check your progress???.
Some of them are quite confrontational and in my opinion shouldn't be asking personal heath questions!
(the last thing you need when worrying about dying!)

Someone with cancer should be automatically taken out of that system paid the benefits their entitled to
until their either declared fit by their doctor or have passed away.

 

Edited by member 24 Jun 2024 at 10:23  | Reason: Not specified

User
Posted 24 Jun 2024 at 12:21

Originally Posted by: Online Community Member
Someone with cancer should be automatically taken out of that system paid the benefits their entitled to
until their either declared fit by their doctor or have passed away.

I agree with that on principle, but when 1 in 2 people are going to suffer from some sort of cancer during their lifetime, is it economically possible? There are folk on here that run marathons and climb mountains when  dealing with our disease. It could be argued that if they capable of that they are capable of work.

Edited by member 24 Jun 2024 at 12:25  | Reason: Not specified

User
Posted 24 Jun 2024 at 14:27
I think the challenge is that there are so many different types of Cancer and some have a low impact on lifestyle and some are highly aggressive. PCa is generally not a killer unlike some of the more aggressive variants.

Given the state of the UK finances (I left it a long time ago) then I can imagine the pressure that those who have to ensure that those claiming are legit must be under.

Someone, a couple of months post RARP doing a desk job would likely be able to resume work - I am sure plenty of self-employed desk jockeys are back as soon as they can. Physically challenging jobs would definitely require longer to be fit for work.

 
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