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Recovery following radical prostatectomy

User
Posted 16 Jul 2024 at 15:20

Hello everyone 

Just joined the site and hoping to hear from those of you that have been through this and come out the other side.

I am 62  was asymptomatic and only found out via PSA score of 6.2 which was repeated and came back the same.

Biopsy results were Gleason score of 3+4 , clear lymph nodes and bone scan.

Opted for prostate removal and went in for surgery on 10/7/24. 

Six days post op, I'm feeling better and looking forward to the Twoc next week.

Best wishes 

User
Posted 16 Jul 2024 at 15:20

Hello everyone 

Just joined the site and hoping to hear from those of you that have been through this and come out the other side.

I am 62  was asymptomatic and only found out via PSA score of 6.2 which was repeated and came back the same.

Biopsy results were Gleason score of 3+4 , clear lymph nodes and bone scan.

Opted for prostate removal and went in for surgery on 10/7/24. 

Six days post op, I'm feeling better and looking forward to the Twoc next week.

Best wishes 

User
Posted 16 Jul 2024 at 18:23

High Iggy pop

My diagnosis was similar to yours - Gleason 3+4 - but  I was much older than you when I had prostatectomy. That was over 12 years ago. My PSA has remained steady at <0.003. I regard myself as extremely lucky. Bar some side effects,  my wife and I think that we made the right decision; hindsight is a wonderful skill! 

Good luck with your recovery. If you need to know more about my experience you are welcome to send me a private message. The following thread to my postings on this site may be of interest to you:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

Edited by member 16 Jul 2024 at 18:27  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 16 Jul 2024 at 19:25

Welcome to the forum mate

Great to see you're recovering.

I had the op 17 months ago. PSA 6.6, T3a, Gleason 9(4+5). To date PSA is undetectable.

Wishing you a full and speedy recovery.

User
Posted 17 Jul 2024 at 15:38

HI Iggy Pop.   

Welcome to the forum.   I was in very similar position to you but older at 70yrs old.   Had RARP procedure in early March 2024.    Catheter out after 7 days and no incontinence issues since catheter removal.   ED is still an issue but on Tadalafil 20mg every 4 days (surgeon suggested 5mg every day but I got headaches all the time so I elected to make the change to every 4 days higher dose and now almost no headaches - not sure why).   PSA 8 weeks post surgery is >0.01 and on continuing 3 month PSA tests for another year or so.    Back to normal physically after probably 6 weeks post surgery and planning the next holiday.   Good luck with your recovery.  

User
Posted 18 Jul 2024 at 07:40

I was 63 when I was found to have cancer and like you I had no symptoms . My scores on the door were very similar to yours and almost 3 years after surgery I am fine. My 6 monthly PSA check figures (last one was yesterday) are still  less than 0.1 (The lowest Addenbrookes test to). It is worth bearing in mind that although on the outside the damage does not look too bad, internally you have suffered quite a bit of damage so you do need to take things easy for a while. I would also mention that though it is a wonderful feeling having the catheter taken out it is very likely that you will leak for some time.Now, some people don't but most do and in my case I was not fully dry for nearly 3 months. In fact when out walking I would leak copious amounts and I did wonder whether things would ever get better. But they did and I believe in no small part that was because I had undertaken the pelvic exercises pre-op and continued with them after the catheter had been removed.

 

My journey from start to the present day can be found my clicking on my profile.

 

Ivan

User
Posted 13 Aug 2024 at 12:12

I don't want to make light work about the catheter bag post surgery, but be rest assured that is the least of your worries post surgery. I am 27 months post surgery, came home with the catheter bag for 10days, this passed without any incidence or leaks. I am usually untidy and messy, despite this, did not have any accidents. The trick was to put the catheter in a bucket by the bed and wake up (during the night) 1ce just to empty the bag.  I wish that was all I had to contend with it. The drama that unfolds post surgery - incontinence and ED for me is the main kicker!

User
Posted 13 Aug 2024 at 12:52

Hi GraWood,

 

I was also worried about nights with the catheter. Like you I'm a restless sleeper and was concerned I'd somehow compress or dislodge the tube but in the event it was okay. I slept on my back, the catheter bag will be on a night stand, and I realised there was a fair bit of flex in the tubing that allowed for some movement. 

Everyone's different of course but sleeping through was possible with the capacity of the night bag. Laying off fluids for a few hours before night time probably helped. 

Overall catheter was use was fine. Didn't leak and could move about comfortably and walk reasonable distances.  

 

Good luck with whatever path you choose. 

 

 

User
Posted 13 Aug 2024 at 14:50

GraWood, I have had a urethral catheter on around 13 separate occasions , probably amounting to around a couple of hundred nights. In that time I have probably had a couple of disconnections and they were the catheter to leg bag connection and were probably after a new leg bag had been fitted, make sure that connection is tight, nurses never seem too push them together properly. If they do come apart make sure the surfaces are dry before reconnecting or they may just come apart again. Technically a bag should never be refitted, but in the middle of the night I know what I would do.

At night make sure the inside of the leg bag connection is dry before connecting the night bag, make sure the connection is tight. I use a g strap or thigh strap to secure the night bag tube to my ankle, get a spare one from the hospital, I can toss and turn all night and there is no strain on the joint. The night bag is designed to fit on a stand, I have my night bag on a stand inside a bucket. I have read a medical article that suggested blockages in the catheter were frequently caused by unsupported night bags. 

If it is not too warm a pair of pyjama bottoms will also help stop and tangles.

There are some gels that contain anesthetic, antiseptic and lubricant that are designed for catheter insertion and maintenance. The gels are available from a pharmacy without prescription (except Boots), for around £3. Instilagel, hydrocaine or optilube are the three I have used ,they are particularly good if the eye of the penis gets sore. The hospital may supply you with some. Make sure the catheter is fixed to you leg, the less it can move the less likely it is to rub in the eye of the penis. 

Your catheter should be your new best friend for those first days after surgery,no need to get out of bed in the middle of the night. Make sure you remember to open the leg bag tap before going to sleep and make sure you close the leg bag tap before disconnecting the night bag. 

It is sometimes easy to accidentally catch the leg bag tap , you only find out when your socks get wet. I use a lock, but a cut down velcro leg strap can achieve the same result.

The extra thigh strap is also useful when showering. Disconnect the night bag if applicable. Make sure the catheter is secured to the leg strap, drain the leg bag and remove the bag straps. Either let the bag hang from the catheter or tuck the leg bag tap under the thigh strap. Shower as normal, some leg bags have a fabric backing just dab it dry after showering. Dry off after your shower, take the spare G,-strap and put it on the opposite leg , transfer the catheter to the dry strap and refit the leg bag straps, remove the wet strap and let it dry for next time.

The catheter is quite robust and the balloon inside will prevent it from pulling out. Almost Inevitably at some point you will catch the catheter,that will get your attention. 

I was told rosé coloured urine in the bag should be okay ,red coloured urine needs attention.

Hope all goes well.

User
Posted 19 Aug 2024 at 21:55

Thanks for sharing. Got my result an hour ago - Gleason 4.3. PSA 28. I'm 65 and active. Decided on the spot for radical prostatectomy over radiation mainly due to recovery time/side effects. I was told that incontinence would be an issue with radiation as well, so rather get rid of the damn thing. Not taking it likely and have been told there is a 2 month waiting list. Thinking of going private but 20k is out of my budget. ED I can manage - widowed and not interested. Keep in touch and all the best, mate.

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User
Posted 16 Jul 2024 at 18:23

High Iggy pop

My diagnosis was similar to yours - Gleason 3+4 - but  I was much older than you when I had prostatectomy. That was over 12 years ago. My PSA has remained steady at <0.003. I regard myself as extremely lucky. Bar some side effects,  my wife and I think that we made the right decision; hindsight is a wonderful skill! 

Good luck with your recovery. If you need to know more about my experience you are welcome to send me a private message. The following thread to my postings on this site may be of interest to you:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

Edited by member 16 Jul 2024 at 18:27  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 16 Jul 2024 at 19:25

Welcome to the forum mate

Great to see you're recovering.

I had the op 17 months ago. PSA 6.6, T3a, Gleason 9(4+5). To date PSA is undetectable.

Wishing you a full and speedy recovery.

User
Posted 17 Jul 2024 at 15:38

HI Iggy Pop.   

Welcome to the forum.   I was in very similar position to you but older at 70yrs old.   Had RARP procedure in early March 2024.    Catheter out after 7 days and no incontinence issues since catheter removal.   ED is still an issue but on Tadalafil 20mg every 4 days (surgeon suggested 5mg every day but I got headaches all the time so I elected to make the change to every 4 days higher dose and now almost no headaches - not sure why).   PSA 8 weeks post surgery is >0.01 and on continuing 3 month PSA tests for another year or so.    Back to normal physically after probably 6 weeks post surgery and planning the next holiday.   Good luck with your recovery.  

User
Posted 18 Jul 2024 at 07:40

I was 63 when I was found to have cancer and like you I had no symptoms . My scores on the door were very similar to yours and almost 3 years after surgery I am fine. My 6 monthly PSA check figures (last one was yesterday) are still  less than 0.1 (The lowest Addenbrookes test to). It is worth bearing in mind that although on the outside the damage does not look too bad, internally you have suffered quite a bit of damage so you do need to take things easy for a while. I would also mention that though it is a wonderful feeling having the catheter taken out it is very likely that you will leak for some time.Now, some people don't but most do and in my case I was not fully dry for nearly 3 months. In fact when out walking I would leak copious amounts and I did wonder whether things would ever get better. But they did and I believe in no small part that was because I had undertaken the pelvic exercises pre-op and continued with them after the catheter had been removed.

 

My journey from start to the present day can be found my clicking on my profile.

 

Ivan

User
Posted 18 Jul 2024 at 19:16

Iggy Pop

Your situation very similar to mine (I was 59 when I had prostatectomy in 2019)  PSA 4.8 & Gleason 3+4

Now my PSA settled at 0.1.

I had catheter out after 7 days and continence came back pretty quickly, now I only need pads if it's a long car journey etc. I'd struggle with a 3 hour film and no interval but I can live with that. 

Don't worry if recovery seems 2 steps forward 1 step back once catheter is out. As someone else has pointed out there is a lot of internal change gone on, it's a major operation.  Take it easy at first  - walking is a great therapy, I found it really helped in early days but listen to your body and build up. Keep positive. I had recurrent pelvic floor discomfort for about 2 years but it gradually got better.  Now I'm cycling 40-50 km but it took a while to get to that stage.

Gerard

User
Posted 18 Jul 2024 at 23:21

Hi mate

I’m 7 days behind you, having had my surgery yesterday. It will be interesting to compare notes on progress if you fancy doing so.

All the best with your recovery.

Ian.

User
Posted 13 Aug 2024 at 11:32

Hi all,

I'm probably opting for surgery after a year of active survellience as PSA is rising now to 10 and the Urology has recommended surgery.

Going to meet the Radiotherapy and Surgeon to get their views.

While I'm pretty ambivilent about the whole thing, wifey is getting a tiz about me coming back with a catheter in and, basically, urine leaking out and going everywhere, which she's seen before with some of the people she cares for.

I wonder what have been folks experience post surgery with the tube and bag, especially sleeping?

I'm always pretty mobile when sleeping, rolling around and shifting about - these won't be good with a tube in, I imagine.

User
Posted 13 Aug 2024 at 12:12

I don't want to make light work about the catheter bag post surgery, but be rest assured that is the least of your worries post surgery. I am 27 months post surgery, came home with the catheter bag for 10days, this passed without any incidence or leaks. I am usually untidy and messy, despite this, did not have any accidents. The trick was to put the catheter in a bucket by the bed and wake up (during the night) 1ce just to empty the bag.  I wish that was all I had to contend with it. The drama that unfolds post surgery - incontinence and ED for me is the main kicker!

User
Posted 13 Aug 2024 at 12:52

Hi GraWood,

 

I was also worried about nights with the catheter. Like you I'm a restless sleeper and was concerned I'd somehow compress or dislodge the tube but in the event it was okay. I slept on my back, the catheter bag will be on a night stand, and I realised there was a fair bit of flex in the tubing that allowed for some movement. 

Everyone's different of course but sleeping through was possible with the capacity of the night bag. Laying off fluids for a few hours before night time probably helped. 

Overall catheter was use was fine. Didn't leak and could move about comfortably and walk reasonable distances.  

 

Good luck with whatever path you choose. 

 

 

User
Posted 13 Aug 2024 at 14:50

GraWood, I have had a urethral catheter on around 13 separate occasions , probably amounting to around a couple of hundred nights. In that time I have probably had a couple of disconnections and they were the catheter to leg bag connection and were probably after a new leg bag had been fitted, make sure that connection is tight, nurses never seem too push them together properly. If they do come apart make sure the surfaces are dry before reconnecting or they may just come apart again. Technically a bag should never be refitted, but in the middle of the night I know what I would do.

At night make sure the inside of the leg bag connection is dry before connecting the night bag, make sure the connection is tight. I use a g strap or thigh strap to secure the night bag tube to my ankle, get a spare one from the hospital, I can toss and turn all night and there is no strain on the joint. The night bag is designed to fit on a stand, I have my night bag on a stand inside a bucket. I have read a medical article that suggested blockages in the catheter were frequently caused by unsupported night bags. 

If it is not too warm a pair of pyjama bottoms will also help stop and tangles.

There are some gels that contain anesthetic, antiseptic and lubricant that are designed for catheter insertion and maintenance. The gels are available from a pharmacy without prescription (except Boots), for around £3. Instilagel, hydrocaine or optilube are the three I have used ,they are particularly good if the eye of the penis gets sore. The hospital may supply you with some. Make sure the catheter is fixed to you leg, the less it can move the less likely it is to rub in the eye of the penis. 

Your catheter should be your new best friend for those first days after surgery,no need to get out of bed in the middle of the night. Make sure you remember to open the leg bag tap before going to sleep and make sure you close the leg bag tap before disconnecting the night bag. 

It is sometimes easy to accidentally catch the leg bag tap , you only find out when your socks get wet. I use a lock, but a cut down velcro leg strap can achieve the same result.

The extra thigh strap is also useful when showering. Disconnect the night bag if applicable. Make sure the catheter is secured to the leg strap, drain the leg bag and remove the bag straps. Either let the bag hang from the catheter or tuck the leg bag tap under the thigh strap. Shower as normal, some leg bags have a fabric backing just dab it dry after showering. Dry off after your shower, take the spare G,-strap and put it on the opposite leg , transfer the catheter to the dry strap and refit the leg bag straps, remove the wet strap and let it dry for next time.

The catheter is quite robust and the balloon inside will prevent it from pulling out. Almost Inevitably at some point you will catch the catheter,that will get your attention. 

I was told rosé coloured urine in the bag should be okay ,red coloured urine needs attention.

Hope all goes well.

User
Posted 19 Aug 2024 at 21:55

Thanks for sharing. Got my result an hour ago - Gleason 4.3. PSA 28. I'm 65 and active. Decided on the spot for radical prostatectomy over radiation mainly due to recovery time/side effects. I was told that incontinence would be an issue with radiation as well, so rather get rid of the damn thing. Not taking it likely and have been told there is a 2 month waiting list. Thinking of going private but 20k is out of my budget. ED I can manage - widowed and not interested. Keep in touch and all the best, mate.

User
Posted 20 Aug 2024 at 04:46

Sorry to hear about your diagnosis. However, as regards the wait time, I doubt if your prognosis would get worse in 2months. The nature of the disease is typically slow growing. I waited 5months, a slot became available half-way through my wait which I politely declined, as I was not mentally ready. So I would not worry too much about the wait time of 2months.

All the best.

 
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