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Awaiting operation

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User
Posted 27 Mar 2020 at 20:43

evening all,

well today I have been told I need to have my prostate removed as this is what will be the best option,I have a few concerns and wondered if any of you guys have had the op and what I might expect( I know everyone is different) treatment has started with hormone tablets and in two weeks a injection then two more to slow down my testosterone which is feeding my cancer ???

i know after op which they will be doing by keyhole at the queen Alexander Portsmouth as I live on the Isle of Wight I will have to have a catheter and it's going to effect my erections ( any info on this will be appreciated) again any info on what to expect would be appreciated,

they can't operate yet due to coronaviris so my head is in all different places so any info would be great 

thankyou Tim 

User
Posted 29 Mar 2020 at 19:35

thank you all for your updates and info don't know about you all but my head is going around in circles wondering what the future is with this corona virus having to wait to be safe to be operated on,fingers crossed this will be sorted very soon 

good luck guys and thanks 

User
Posted 28 Mar 2020 at 09:48

Hi, 

Welcome to the club nobody wanted to join, I'm 4 weeks post op (robotic)

I feel fine now, the operation itself was a breeze (I was asleep) seriously I've been fine from the surgery, the catheter caused me problems I just couldn't get on with it, after surgery my scrotum and penis were swollen but once the catheter was out they reduced, I had lymph nodes and nerves removed and have had pain in my groin area feels like I have been scalded, but I have been give gabapentin tablets and this is now controlled.

My incontinence is virtually non existent since having the catheter out, I haven't wet myself once, I do dribble a bit if I'm stood up to long but sat down or on bed no problem whatsoever (make sure you do pelvic floor exercises before operation and once catheter is out) 

Unfortunately I haven't had an erection since and I believe because of the nerve removal I won't, not naturally anyway. 

I have psa test in 2 week then see the surgeon on 20th April fingers crossed. 

Good luck and don't forget the pelvic floor exercises

Chris

 

User
Posted 28 Mar 2020 at 14:23

Hi Tim

I’m in exactly the same position. I did however have my pre op assessment yesterday which was odd to be honest. In a way I’m hoping they cancel my op, because I’m really worried and concerned about have the operation done in these uncertain times, especially today when the news are reporting the covid 19 is going to accelerate and peak in the next week or more. I’d much rather undergone the Da Vinci op when it’s is much safer to do so. 

keep positive mate, here if you need a chat

Carl.

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User
Posted 28 Mar 2020 at 01:37
Download the toolkit from this website - it is a fantastic resource and explains the diagnostics and the impact of the different treatments. You wouldn't normally have the hormones while waiting for the op but I think a lot of hospitals will be doing this now because your surgery is being delayed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Mar 2020 at 09:48

Hi, 

Welcome to the club nobody wanted to join, I'm 4 weeks post op (robotic)

I feel fine now, the operation itself was a breeze (I was asleep) seriously I've been fine from the surgery, the catheter caused me problems I just couldn't get on with it, after surgery my scrotum and penis were swollen but once the catheter was out they reduced, I had lymph nodes and nerves removed and have had pain in my groin area feels like I have been scalded, but I have been give gabapentin tablets and this is now controlled.

My incontinence is virtually non existent since having the catheter out, I haven't wet myself once, I do dribble a bit if I'm stood up to long but sat down or on bed no problem whatsoever (make sure you do pelvic floor exercises before operation and once catheter is out) 

Unfortunately I haven't had an erection since and I believe because of the nerve removal I won't, not naturally anyway. 

I have psa test in 2 week then see the surgeon on 20th April fingers crossed. 

Good luck and don't forget the pelvic floor exercises

Chris

 

User
Posted 28 Mar 2020 at 10:42

thank you Chris 

Glad the operation went well for you and I'm doing my pelvic floor exercises it's just the uncertainty of what lies ahead hope you carry on recovering well and keep us posted 

Tim 

User
Posted 28 Mar 2020 at 11:11

Hi Tim,

Apart from the great posts above, there are a few more personal stories under the treatment section where some of us have charted our progress and received excellent advice. 

It might also be an idea to turn your waiting time to your advantage and try to do some extra physical exercise if possible. I found the exercise beneficial in more ways than one as it helped me focus my mind as well.

Good luck with everything. 

User
Posted 28 Mar 2020 at 14:23

Hi Tim

I’m in exactly the same position. I did however have my pre op assessment yesterday which was odd to be honest. In a way I’m hoping they cancel my op, because I’m really worried and concerned about have the operation done in these uncertain times, especially today when the news are reporting the covid 19 is going to accelerate and peak in the next week or more. I’d much rather undergone the Da Vinci op when it’s is much safer to do so. 

keep positive mate, here if you need a chat

Carl.

User
Posted 29 Mar 2020 at 19:35

thank you all for your updates and info don't know about you all but my head is going around in circles wondering what the future is with this corona virus having to wait to be safe to be operated on,fingers crossed this will be sorted very soon 

good luck guys and thanks 

User
Posted 30 Mar 2020 at 17:56
Most cases of pCa do not require immediate treatment.

Often waiting and monitoring for a year makes no difference.

It depends on how aggressive the cancer is (the Gleason number).

And on how close the tumour is to breaking out of the prostate.

If the gleason indicates a non-agressive tumour and it is located away from the edge,

then it may be best to wait till we are the other side of the COVID-19 epidemic.

User
Posted 30 Mar 2020 at 19:46

Hi Tim

Sorry to read about your postponed surgery.

My husband received a call today informing him that his TRUS has been cancelled on Wednesday.

The not knowing what we are dealing with is difficult. I phoned two private hospitals today to see if we could book a scan but they aren’t taking bookings either due to CV19.

🌹

User
Posted 30 Mar 2020 at 21:11
Hi lexi

Sorry to hear that your husbands trus has been cancelled at such short notice yes the not knowing and waiting is difficult hope this cv19 goes away and we can get this sorted

Tim

User
Posted 31 Mar 2020 at 15:18

Hi Tim how are you getting on.

Carl

User
Posted 31 Mar 2020 at 19:35

Hi Carl 

started hormone therapy tablets daily, injections every month feeling very mixed up in head at the moment unable to talk to anyone at the moment due to present situation with the virus . The  treatment is to reduce my testosterone levels as I have been told it feeds the cancer they have told me I'm am only taking these drugs due to having to wait fort the procedure as they are not admitting anyone  at present thanks to infamous virus . I have big concerns and seem to be constantly worried about my sex drive, incontinence, after removel of the catheter , thanks for your message Carl and I hope this message finds you in a better place than I am at the moment 

Tim 

User
Posted 31 Mar 2020 at 22:41

Hi Tim I’ve heard that HT messes with you libido and gives you horrendous mood swings. I’ve not been told my op is being cancelled yet, due to have it in Cardiff. On the same note know one has remotely mentioned an alternative treatment if I am indeed being cancelled. 
Sorry to hear that your not in a good place at the moment, but let me say when your finding it difficult to express you anger, frustration you’ve always us on here. I’ve almost pushed my wife away beyond repair due to this awful disease and situation. I’ve had some very dark thoughts and feelings these last few weeks but knowing there is a community on here that will always understand and listen has helped.

you can vent your spleen to me anytime you need to, god knows I’ve done it enough and I’m sure it won’t be the last. 

Stay positive, stay strong.....

User
Posted 01 Apr 2020 at 19:20

Hi carl

 thanks for your message today your right about all the different emotions you go through at the moment think mine at present is anger but it's good to know we have this site to go on and either go nuts or just ask questions . Spoke to my doctor today he said to be prepared to have to wait until at least July / August  time due to the mad world we are living in a the moment thanks to the virus anyway thanks again mate take care 

Tim 

User
Posted 01 Apr 2020 at 20:20

Hi Carl 

I was due to go as soon as but   now due to the virus they are now thinking it will be the months I said on the last post and it's going to be taking place at the QA in Portsmouth 

Tim 

User
Posted 02 Apr 2020 at 19:41

Hi Carl 

thanks for your post unfortunately I can't private message you yet as I have not been on the web site long enough  it doesn't let me just tells me I haven't posted enough messages yet . Thanks for info we will check it out and let you know,heads still all over the place keep me posted on your decision take mate 

Tim 

 
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