Back home after Open Radical Prostatectomy

User

Posted 28 Feb 2022 at 11:50

Well, I hope that’s the hard part now over with. The surgeon tells me everything went well and that he was able to do some nerve sparing on the right as well as the left (an unexpected bonus). Three nights in hospital which drags a bit with the no visitors policy but I’m back home now and making steady progress. It appears an uncommon side effect of having an epidural is hiccups. In my case they have been incessant, depriving me of any quality of sleep over the initial few days (that and trapped bowel gas). Thankfully, they have both now abated. Has anyone else experienced hiccups post op? The procedure included lymph node dissection, although I don’t know how many at this stage. Apparently, this surgeon’s record is 112!😯 I’m managing okay with the catheter and bag although I do have daft panics in the night as to whether I opened the valve to the night bag🤔. With my long legs I could have done with a longer tube to the bag. It is tending to pull on the end of my penis with the bag attached to my calf, so I’m going to have to be careful with it. The abdominal drain is still collecting plenty of fluid (840 mL in first 24 hours at home). That will remain in place until it’s down to 50 mL per day. It may outlive the catheter. It’s very early days to know whether I made the right decision for me. There's many milestones and hurdles ahead to negotiate first. At least no regrets so far. Chris

User

Posted 28 Feb 2022 at 17:05

This knee position is so much better but you are right, you can't let the bag fill right up without it becoming an incumbrance. An additional strap certainly beats trying to dry them off with a hairdryer. Great tips, thanks. I'll keep my angle grinder in it's box for the time being 😄.

User

Posted 28 Feb 2022 at 17:07

Great news surgery is over 👍 take it easy and wishing you well x

User

Posted 28 Feb 2022 at 20:59

Glad you’re home and ok Chris.

Wishing you a full and speedy recovery.

Rob didn’t have the hiccups.

User

Posted 04 Mar 2022 at 14:27

Hi Les, The Urologist who was treating me only performed open RP on a high volume basis. I did asked about RALP and he said he would refer me if that's what I wanted but didn't recommend it for my T3b diagnosis (further info in my profile). A 7" opening gives plenty of room for manoeuvre and allows him to feel the prostate (cancer tissue feels different from normal tissue apparently). It offers a better chance of getting it out without leaving positive margins when the cancer is close to the capsule. At least that's how he sold it to me. Chris

User

Posted 05 Mar 2022 at 18:15

Originally Posted by: Online Community Member

I haven't managed to spill the night bag yet but I did disconnect it one morning and forgot to turn the tap to off on the leg bag. Didn't find out until I had a wet foot and scent marked half the house 😂 Chris

Sorry Chris I used to include the bit of advice about making sure the joints were tight and the taps were in the right position before disconnecting the night bag.☹️ I have caught the leg bag tap when pulling my trousers down and got a shoe full or urine. I now have a lock on the tap.

I think most of us have some sort of anesthetic in the lower back area, I didn't realize that at the time until it was mentioned on here. I then remembered the anesthetist doing something behind my back as I was asking if it was too late to change my mind.☹️

Thanks Chris

Edited by member 05 Mar 2022 at 18:55 | Reason: Not specified

User

Posted 14 Mar 2022 at 17:54

Originally Posted by: Online Community Member

Hi Paul,

I suppose complications are always something you may bump into on the way with PCa treatment.

Rather strangely I was originally told to come back to the private hospital where I had the surgery but they then referred me to the NHS hospital. It's not that they don’t have the capability to perform the procedure I need. I know someone who had the same procedure performed at the private hospital. I'm still stuck in the NHS hospital at the moment and none the wiser as to when the procedure is to be performed. Such is life. Chris

I hope you get sorted soon Chris and back home continuing your recovery 🤞

User

Posted 14 Mar 2022 at 19:02

Originally Posted by: Online Community Member

On another note Chris, were you given compression stockings to wear after your op?

Yes, I was sent away with two pairs of dark green support stockings. which I am still wearing. I was told to keep wearing for two weeks. Chris

Edited by member 14 Mar 2022 at 19:07 | Reason: Not specified

User

Posted 14 Mar 2022 at 21:26

Hi Chris. I was given the impression that the balloon cuffing issue is not uncommon. When the surgeon/urologist showed me the problem I thought why didn't they try re-inflating the balloon. It would seem an obvious thing to do to me. It did cause a bit of bleeding afterwards so it can't have done the bladder neck much good. I did try walking around to loosen it but no such luck. Chris

User

Posted 14 Mar 2022 at 21:54

Sorry you’re still having a few issues Chris. Hope they can get your swollen leg sorted soon and get you home. Fingers crossed for a full recovery soon x

User

Posted 26 Mar 2022 at 17:11

All the best - hope they get everything sorted and you can get on with healing and life

User

Posted 26 Mar 2022 at 18:35

Gosh Chris.....you've had a rough time of it what with one thing and another.......hope you have better news soon. Best wishes

User

Posted 26 Mar 2022 at 18:37

Hi Chris

Sorry to read this, you are having a bumpy ride and this PCa lark is still throwing you curve balls. I hope the UTI soon clears up and hope the drain can be removed successfully without giving you any more pain. I hope the next time you post it will be much better news. Wishing you well x

Originally Posted by: Online Community Member

Hi Jane,

Things haven't been going too well since my last post. The good news is the I had an additional drain fitted which has relieved the fluid pressure on my Iliac vein. My swollen leg quickly returned to normal. I was discharged from hospital only to rush back a few hours later with severe urinary retention. I had another catheter inserted which thankfully was removed after three days. Still getting intermittent retention but it's manageable. My main problem is the original drain which is stuck fast. Three attempts have been made to pull it out. The last attempt felt like my insides were coming with it. The disturbance caused the drain to start flowing again but this time it was a brown foul smelling liquid. I can only imagine it is trapped blood debris from the surgery. The Dr didn't seem particularly concerned about it. Better out than in I suppose. At this point they decided not to have any further attempts to remove the drain while it was still flowing. It does seem to be a case of kicking the can down the road but it at least got me discharged from hospital. However fate was against me. No sooner had I got home when I went down with a UTI. Still suffering the effects as I write but hopefully the antibiotics will sort it out. The original drain has now all but dried up again so it will be back in touch with the hospital on Monday to see how the hell they can get it out. It's not helped by the surgeon who did my prostatectomy being off with Covid. I hope next time I make a post the news will be a bit better. Chris

Show Most Thanked Posts

User

Posted 28 Feb 2022 at 12:57

Chris, unfortunately hospitals sometimes give out what they have got, not what is best. I am a permanent catheter wearer so I have learnt over a long period what works best for me.

Have you got the catheter secured to your thigh, the adhesive devices are better than the staps, unless your skin reacts to the glue. I wear my bag across my knee with one strap above the knee to stop it slipping down ,I also use a leg sleeve. At night I attach the night bag tube to my ankle with a thigh strap, this help reduce pull on the joint. I have my bag on a stand in a bucket or bowl.

Instilagel or hydrocaine can help reduce soreness at the eye of the penis. It is available without prescription from a pharmacist.Some national chains tend to want a prescription, Lloyds pharmacy sell it for just under £2.

No hiccups for me.

Thanks Chris

User

Posted 28 Feb 2022 at 14:37

Originally Posted by: Online Community Member

Have you got the catheter secured to your thigh, the adhesive devices are better than the staps, unless your skin reacts to the glue.

Hi Chris, unfortunately wishing for an extra two inches has been the story of my life 😁. The nurse fitted the bag to my calf with elastic straps. It did occur to me about moving it up so I have one strap above the knee and one below but I ruled it out because of the knee flexing the bag. However I have just been trialing it for the last hour. It solves the tube length problem perfectly and no pulling/rubbing. The bag had just been emptied so I'll monitor how things as it fills. The tube was actually rubbing on a still very swollen foreskin. The soreness has been improving since I've been more careful (holding on to the tube when walking around). I'll keep the Instillagel/hydrocaine in mind though if the bathing doesn't work. Thanks for your advice. Chris

User

Posted 28 Feb 2022 at 15:52

Chris, make sure you empty your leg bag before it get more than half to two thirds full. I have worn my leg bag across the knee but slightly to one side for the last five years without any issues. I have been very active helping with a house renovation and only damaged a bag a couple of times, usually with an angle grinder 😀. Hopefully you will only be taking gentle walks until the catheter comes out.

I had to have a few dilatations after my main surgery and the nurses were happy to administer a squirt of gel to prevent any soreness in the eye of the penis.

From personal experience of those dilatations our urology ward seems to be a training ground for new nurses. The new nurses, although caring people did not have alot experience on how to set me up with the catheter.

I got a couple of extra G straps/thigh straps. The extra strap is useful for showering. Drain the leg bag remove the leg bag straps make sure the thigh strap is secure and is supporting the empty leg bag. Have your shower , dry yourself , fit the spare strap to the other thigh and transfer the catheter to the the dry strap remove wet strap and dry for next shower.

Thanks Chris

User

Posted 28 Feb 2022 at 17:05

User

Posted 28 Feb 2022 at 17:07

Great news surgery is over 👍 take it easy and wishing you well x

User

Posted 28 Feb 2022 at 20:59

Glad you’re home and ok Chris.

Wishing you a full and speedy recovery.

Rob didn’t have the hiccups.

User

Posted 01 Mar 2022 at 10:39

Chris

I was advised not to let the leg bag get anymore than about half full. I had the catheter for 7 weeks (had salvage prostatectomy) and found if it got over half full it began to ‘pull’. I had no problem having the bag at about knee level, as someone else mentioned, slightly to one side - it did bend as you mentioned but didn’t seem to cause any problems.

Instillagel works well around the tip of the penis if it’s uncomfortable.

Zum

Edited by member 01 Mar 2022 at 10:40 | Reason: Mistake

User

Posted 01 Mar 2022 at 11:15

Thanks Zum, I'm finding the bag round the knee is working surprisingly well. It does reduce it's capacity a little but other than that it's fine. Stays in position great.

I see you had lymph node removal with your salvage RP. How long did you have the abdominal drain in for? I'm not seeing much reduction in fluid discharge thus far (710 mL yesterday, day 6). Chris

User

Posted 04 Mar 2022 at 14:03

Hi Chris

I had my meeting with consultant surgeon to discuss surgery option. I had started to lean in the direction of Radiotherapy (I'm meeting the oncologist next week) I was very impressed by the surgeon and he started me thinking I should go down the route however he said in my case he would go for open RP and not RARP which he said he did use in some cases. Can I ask why you went for open RP & not RARP or radiotherapy? I'm localised 3+4=7 although I'm 70 I'm fit & otherwise healthy. My biopsy showed that 100% of prostate had cancerous cells which was the surges main reason for using open surgery. Many thanks

Edited by member 04 Mar 2022 at 17:30 | Reason: Not specified

User

Posted 04 Mar 2022 at 14:27

User

Posted 04 Mar 2022 at 14:53

Thanks Chris

That was also the main argument used by the surgeon I met. Wasn't in Bucks by any chance?

Why did you rule out radiotherapy?

Les

User

Posted 04 Mar 2022 at 15:19

No, I'm in Worcestershire but I think a lot of surgeons who perform open RP make that claim. I can't say I ever ruled out HT/RT. Both routes had a good chance of being curative although at my appointment following the MDT meeting the preferred option was said to be RP. It wasn't an easy decision (it never is). At lot of people just want it out and I think I was one of them. Also the HT/RT approach seemed like a very protracted interruption on my normal life. Chris

User

Posted 04 Mar 2022 at 17:28

Many thanks Chris that's really helpful.

Good luck with a speedy full recovery

Les

User

Posted 05 Mar 2022 at 12:13

Best of luck Chris with recovery. I’m now 6 weeks post RALP and it gets better with time.

I had the same thing with night bag where I was petrified of pulling catheter out and even managed to knock over the night bag one night and it went everywhere! 😂

not sure if anyone mentioned it yet but I emptied the bag at about half full as it started to become heavy and then pulled on the catheter.

take care mate

User

Posted 05 Mar 2022 at 15:47

Thanks Steve,

Yes, someone has already said don't let it get too full. Good advice. The last thing you want is it pulling on the catheter. I haven't managed to spill the night bag yet but I did disconnect it one morning and forgot to turn the tap to off on the leg bag. Didn't find out until I had a wet foot and scent marked half the house 😂 Chris

User

Posted 05 Mar 2022 at 16:27

Hi Chris

Yes I had the abdominal lymph nodes removed on the rhs because they thought there was a trace of cancer in one of them. they removed 7 but the histology came back as all being clear! I didn't have an abdominal drain for some reason.

Zum

User

Posted 05 Mar 2022 at 16:36

Thanks Zum,

It makes me suspect I've had quite a lot of nodes removed. I think without the drain I would be looking like a giant sumo wrestler by now. Still producing around 900 mL per day. Chris

User

Posted 05 Mar 2022 at 17:11

Hi Chris, You're an interesting case. I haven't come across an epidural open prostatectomy. Are you awake and listening to what happens during the op?

In my opinion. Open surgery is probably better but reduced throughput means it isn't preferred by the hospital. Also having the lymph nodes removed is probably for the best even if they say they found nothing, you never know.

I had a pelvic drain and the continued bleeding was the reason I stayed in 2 nights, at my request. It sounds like your surgeon has all that worked out.

Presumably your aftercare is on the NHS for 5 years?

All the best
Peter

User

Posted 05 Mar 2022 at 18:05

Hi Peter,

Thankfully, I was not not awake! I also had a general anesthetic which followed the epidural. I don't know the reason for having both. I think the surgeon's motto must be if in doubt take it out. I believe once I've had the six week check my care is effectively signed off by the private care provider. Whether that defaults back to the NHS or whether I have to start it from my GP again I'll need to find out. RALP seems to have benefits for both the patient and the NHS. Greater throughput as you say and I believe less training. Open surgery may be better for some stage 3 cases. Chris

Notification

Join the online community now.