One week ago today......

User

Posted 03 Dec 2015 at 14:02

I woke up after my laproscopic radical prostatectomy and was sent home from the hospital with a box of paracetamol, two weeks of catheter supplies and boxes and boxes of fragmin injections!

Both my partner and myself were fairly surprised at how quickly I was discharged from hospital, on the ward from theatre at 7pm following the operation and then the Dr saying "You'll be going home today" about 12 hours later. I didn't have anything at the hospital other than what I was standing up in as the plan was that my partner was going to bring in the bag later that day.

Welcome to the brand new life without a prostate!

Actually I felt (and still do feel) OK, fingers crossed this means that things are going OK. I had a nurse look at the dressings on Monday and they all came off as everything looked so good underneath. The catheter has been OK, but might be interesting. I've had a couple of nights where the drain from the leg bag to the night bag hasn't gone quite as planned (kinked tubing or air blockages we think) but other than the odd twinge of discomfort with it (especially with muscle spasms when a bowel movement occurs) it seems I have been lucky so far. There is a bit of discharge where it enters (again especially during a muscle spasm) but I have been told by the urology nurse that this is normal. Why does nobody tell you that these are going to be happening before they happen though? The first sight of blood isn't exactly a comforting thing!

Anyway, I have got an appointment in a week to have the catheter removed (again fingers crossed) which I think I am dreading more than the actual operation.

So the joys of loss of bladder control to come (thankfully the posts I have read on here suggest it may not be as bad as expected) and the possibility of erection trouble for quite some time. My partner is quite interested in giving the Alprostadil injections (she has asked every doctor since the consultant mentioned them!) but me and needles causes me to squirm, especially near a sensitive area!

Sorry for the waffle, just felt the need to write something down. I'm actually feeling OK about things (most of the time anyway!). Not really looking for responses on anything here, just an update of life in general ;-) If any of the ladies on the site have some tips for my wife on giving these injections when the time comes, I'll pass them on!

User

Posted 03 Dec 2015 at 14:17

It's a brave man who lets his wife do the cabernet injections - and a bit of a passion killer I would have thought.

Unless you had total nerve sparing there are probably a few things they will make you try before they agree to prescribe Caverject - have you been given a prescription for a vacuum pump and has anyone mentioned Cialis one-a-day dose to you? In many regions Caverject and muse are only funded if Cialis, viagra and levitra all fail. Just as well, as Caverject doesn't work for ever one

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

User

Posted 03 Dec 2015 at 14:37

Don't worry about the cathetar removal...its not going to be anywhere near as bad as you are anticipating

Bri

User

Posted 03 Dec 2015 at 15:42

Catheter removal is fine. Resist the temptation to stop them pulling it out. Keep your hands to yourself. I was dry very quickly and I hope you are too. Injecting yourself is HONESTLY fine. Scary at first then really simple. Ultra fine needle.
Chris

User

Posted 03 Dec 2015 at 18:35

Originally Posted by: Online Community Member

A) Guess it depends what I get offered,

B) Certainly won't be worrying about erections till the catheter gets taken out,

C) I suppose that would be my one question, how long after the surgery before you tried to get an erection/started treatment for ED? I've read some posts that seem to say try nothing till after the 6 week appointment to let things settle down and others that seem to say they have had a go with the catheter still in place.

Hi Petra,

Firstly, good luck with your recovery. I will offer some thought on the above extracts from your post, worth thinking about, maybe?

A) Regarding what you get offered, you may not get offered anything? And, if there is resistance to you being supplied recuperative kit then the sooner you start trying to get hold of it, the better. My approach was to present a written business case to my GP, detailing the facts, that I had nerve sparing both sides, was young "ish" and the sooner I was able to start using the pump the more likely I would regain some functionality. Worked for me, I got the kit early and the meds I needed.

B) No point worrying about them yet, they, it may occur spontaneously at any time, celebrate it when it happens.

C) I think that getting an erection with the catheter in place would be highly unlikely, all you will do is pass urine. But if it happens good luck to you.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 03 Dec 2015 at 21:21

I know it's silly but my partner has his op 6th Jan and it was good to read your post. His surgery is nerve sparring and I smiled, all I can say is thankyou and I hope your recovery continues xxx

User

Posted 04 Dec 2015 at 07:16

Petra,

For me the best way to self administer an injection was to stick in my backside, one quick jab and its done, tried everywhere else !

your recovery will take anything from a few months to a few years, believe me most would take the months option given the choice,

Good luck

User

Posted 18 Dec 2015 at 11:21

Petra

all sounding good indeed positive, so you must be very relieved.

like the sound of that computer programme, probably quite reassurng when things are going so well. I haven't heard of that one before.

If you are going back in for a TWOC next week, fingers crossed it will be a good result so you can enjoy Christmas without the catheter. Of course it may mean using pads for a while until things start to mend and heal.

The important thing now is to take things easy and listen to what your body tells you.

All the very best

User

Posted 18 Dec 2015 at 16:42

The computer programme will just be the Sloane Kettering nomogram or a local version, I should think. I would be a bit worried at any consultant or MDT that doesn't use it to help work out the likely outcomes, although I guess not all doctors will show it to the patient. On John's very first appointment, they tapped his stats into the nomogram to show him the likely success rate for him for RT / surgery etc. After the op, Mr P used it at some of the appointments to show us the implications of the path results, rising PSA etc. When a newish member posts that the doctor says he has an 80% chance of cure, SK website is where they are probably getting the prediction from.

For anyone thinking of googling the SK nomogram to see what their future holds, a health warning ....

1. men tend to do rather better in new York than they do in the UK so the results may be a tad on the optimistic side and there are quite wide variations across the UK. In Leeds, the urology/oncology dept have adjusted the nomogram downwards because outcomes in West Yorks are generally not as good as in the USA.
2. Don't put your numbers into a nomogram unless you have the personality to be able to shrug it off afterwards. They can be quite frightening
3. If you don't know one of the numbers or results or dates DON'T GUESS - it can completely skew the prediction. I tried it once for Stan but didn't have a couple of the results - it predicted he would live another 20 years which was clearly wrong

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

User

Posted 18 Dec 2015 at 20:00

Originally Posted by: Online Community Member

For anyone thinking of googling the SK nomogram to see what their future holds, a health warning ....

Ha!..... I put my stats into the SK nomogram ...for me it predicts a 99% survival rate at 15 years.... and an 87% chance of being recurrence free at 10 years...
Rather optimistic methinks?......but I'm not complaining .....I'll willing settle for those predictions http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

User

Posted 18 Dec 2015 at 20:12

Lyn you were right !
Really not a good read at all , but nothing I didn't expect
Chris x

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User

Posted 03 Dec 2015 at 14:17

It's a brave man who lets his wife do the cabernet injections - and a bit of a passion killer I would have thought.

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

User

Posted 03 Dec 2015 at 14:37

Don't worry about the cathetar removal...its not going to be anywhere near as bad as you are anticipating

Bri

User

Posted 03 Dec 2015 at 15:42

User

Posted 03 Dec 2015 at 15:48

I did wonder why my other half has been so interested in doing the injections since they were first mentioned by the consultant. Think she sees it as an interesting new type of foreplay, perhaps she wants to bring out her sadistic side. She is going to be quite disappointed if she doesn't get the chance to do them lol

Not had a prescription for anything as yet, I did ask about the pump with the consultant and he seemed to be suggesting that the injections would be the recommended way to go about things, well that and a regular dosage of viagra. It's only a week after surgery so I haven't had all the details, but the surgery was planned as nerve sparing and, from what has been said, it was all successful. Hopefully I will be able to find out a bit more info from the urology nurses next week at the catheter removal about what's available to me. I;m being realistic about all this, not expecting to be dry or get an erection for a while, so fingers crossed things on both fronts go better than expected.

I've seen your posting about the amount of pump usage, so in part would quite like to give that a go maybe as well as the injections and viagra. Guess it depends what I get offered,

Certainly won't be worrying about erections till the catheter gets taken out, unlike the chap who had the op on the same day as I did, who was asking the discharge nurse about how soon he should start taking Viagra (that still makes me wince at the thought!). Even the discharge nurse said he might want to wait till the catheter came out.

I suppose that would be my one question, how long after the surgery before you tried to get an erection/started treatment for ED? I've read some posts that seem to say try nothing till after the 6 week appointment to let things settle down and others that seem to say they have had a go with the catheter still in place.

User

Posted 03 Dec 2015 at 18:35

Originally Posted by: Online Community Member

A) Guess it depends what I get offered,

B) Certainly won't be worrying about erections till the catheter gets taken out,

Hi Petra,

Firstly, good luck with your recovery. I will offer some thought on the above extracts from your post, worth thinking about, maybe?

B) No point worrying about them yet, they, it may occur spontaneously at any time, celebrate it when it happens.

C) I think that getting an erection with the catheter in place would be highly unlikely, all you will do is pass urine. But if it happens good luck to you.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 03 Dec 2015 at 21:21

I know it's silly but my partner has his op 6th Jan and it was good to read your post. His surgery is nerve sparring and I smiled, all I can say is thankyou and I hope your recovery continues xxx

User

Posted 04 Dec 2015 at 07:16

Petra,

For me the best way to self administer an injection was to stick in my backside, one quick jab and its done, tried everywhere else !

your recovery will take anything from a few months to a few years, believe me most would take the months option given the choice,

Good luck

User

Posted 09 Dec 2015 at 11:57

Well a minor disappointed today, I had the cystogram and there is still some leakage, so suspect I won't be having my catheter out tomorrow as hoped.

Also had a copy of the letter from my surgeon to my GP keeping them up to date, it was nerve sparing and went well (apparently) so good news really. It does say that I was meant to have been discharged with PDE-5 inhibitors (only got paracetamol, lactulose and fragmin when discharged) will have to check on that when I see the urology nurse tomorrow. Guessing I will get more catheter supplies then too as opposed to a removal, deep joy!

In the grand scheme of things it's a disappointment but hopefully not too much of a setback.

Just had a call from the urology nurse and it'll be another 2 weeks before my twoc, so just in time for Xmas!

Edited by member 09 Dec 2015 at 19:12 | Reason: Not specified

User

Posted 17 Dec 2015 at 21:14

So another little update, three weeks since my op date, had my review with the consultant this afternoon and got the histology results. All good, grading was 4+3 as per my pre op grading, so no worse and at least it was worth getting the damn thing removed had it been reduced to 3+3 I think I'd have felt a little cheated. Good negative margins so fingers crossed all good and there aren't any of those pesky little cancer cells left behind. Obviously won't know for sure till I start having PSA tests again in a couple of months, but feels and sounds positive. He had an interesting little programme on his PC, entered my results and it showed the percentage chance of prostate cancer returning. 99% chance of it being clear in the first year, dropping to 85% after 15 years, from a gambling point of view, I can go with those sorts of odds.

Still got my catheter in, 2nd cystogram and TWOC booked for next week, so fingers crossed for second time lucky. Speaking to the consultant it sounds quite common that the catheter stays in longer than 2 weeks, in fact, I got the impression that he feels it might not be totally ready to come out next week either. Wish I had been told this was fairly common before as it felt a bit like a kick in the teeth when it didn't come out after 2 weeks. Oh he also said that he feels that it isn't worth doing PFE's whilst the catheter is in, I know this has been a subject of discussion on the forums, so good to hear it from the horses mouth so to speak.

Finally got my prescription for Cialis (5mg once a day), took a bit of sorting and should have been issued when I left hospital. Then took a few letters between the consultant and my GP before I was able to get the prescription. Anyway, better late than never and hopefully 3 weeks isn't going to make a huge difference to my erectile rehabilitation. Also filled in the form at the GP to have the exemption for prescription charges, again why this isn't mentioned as standard practice I have no idea.

Just wanted to say how thankful I am for the numerous people on the forum for their posts which have been useful to me (and I'm sure to others) with information. I'll keep posting updates on here in the hope that others who are going through the same thing find them useful.

User

Posted 18 Dec 2015 at 11:21

Petra

all sounding good indeed positive, so you must be very relieved.

like the sound of that computer programme, probably quite reassurng when things are going so well. I haven't heard of that one before.

The important thing now is to take things easy and listen to what your body tells you.

All the very best

User

Posted 18 Dec 2015 at 16:42

For anyone thinking of googling the SK nomogram to see what their future holds, a health warning ....

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

User

Posted 18 Dec 2015 at 20:00

Originally Posted by: Online Community Member

For anyone thinking of googling the SK nomogram to see what their future holds, a health warning ....

User

Posted 18 Dec 2015 at 20:12

Lyn you were right !
Really not a good read at all , but nothing I didn't expect
Chris x

User

Posted 19 Dec 2015 at 15:33

Hi Lynne, it was indeed something very similar to the Sloane Kettering nomogram though I think it had a local front end. Think he knew that my results would look fairly good and hence was happy to show me the results.

I'm realistic enough to know that it's a prediction tool and not a guarantee, certainly wouldn't suggest that everyone who hasn't already seen their scores rushes to put them in online ;-)

I'm thankful that for me it was found and duagnosed early and have been so lucky that things have gone smoothly. For me the amount of knowledge on this forum never ceases to amaze.

User

Posted 19 Dec 2015 at 17:17

It is quite a sophisticated bit of kit based on the outcomes of many thousands of men. On the face of it John should have been in the 100% cure camp with a PSA of 3.1, T1, clear scan and small gland. The nomogram though predicted a 55% chance of recurrence which we first thought was a typo on the surgeon's letter to us but turned out to be correct - salvage RT 2 years post op and now likely recurrence 3 years post salvage treatment

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

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