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Newbie but on my way..

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User

Posted 28 Mar 2016 at 18:50

Just thought I would introduce myself.. Had Radical Open Removal 6 days ago and well on my way in post op recovery.

Diagnosis confirmed last October after 4 months investigations including RDE, MRI, CT, Biopsies.

T1c, Gleason 3+3, PSA 6.25 but rising since diagnosis.

Was on Active surveillance since October but could not cope and decided in that time to have the operation.

I am upbeat... now waiting for post op results, hopefully to tell me good news.

Edited by member 29 Mar 2016 at 12:02 | Reason: Not specified

User

Posted 28 Mar 2016 at 19:20

Good luck with it all!

User

Posted 28 Mar 2016 at 19:24

Hi, welcome to this site and if there is anything you need help with ask on here and you will get sound advice.

Best wishes with your treatment and recovery

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 28 Mar 2016 at 19:33

Hi KRO

It sounds as though you are feeling pretty up beat following your surgery which is great. Hope things will continue well for you but don' t overdo it as you need to give your body time to recover.

Keep us posted with your post op results.

Kind regards,

Kevan

User

Posted 28 Mar 2016 at 19:51

Welcome from me too KRO

We can't control the winds - but we can adjust our sails

User

Posted 31 Mar 2016 at 14:37

Trial without catheter today.

Catheter out, three wees, three scans, bladder emptying so no more tubes!

Small amount of dribbling - but expecting that.

PFME regime starts now.

User

Posted 31 Mar 2016 at 16:00

Hi KRO,

Welcome from me too.

It's great to get the catheter out, 10 days now for me, I too dribbled for a few days but now almost totally dry although I still wear a pad when out and about as I don't trust myself yet!!

Plenty of help and advice on this site which I have found invaluable and as Kevan says please take it easy. Best wishes with your recovery.

Regards

User

Posted 08 Apr 2016 at 18:17

Brilliant news.
Sounds like text book surgery on a cancer caught at the right time. And bundles could mean future fumbles. Best wishes for next psa
Chris

User

Posted 08 Apr 2016 at 19:23

Sounds like your upbeat about everything and I hope it all goes well for you.

Recover well !

Regards ,

John

User

Posted 08 Apr 2016 at 19:41

Kro

That all sounds good news hope your recovery goes well. Have you got all your penile rehabilitation appointments and treatment planned ?

Thanks Chris.

User

Posted 08 Apr 2016 at 19:43

So very pleased to hear that things are continuing well for you. Always nice to share good news and I hope the PSA test result will be good.

All the very best for the future.

Kevan

User

Posted 08 Apr 2016 at 20:35

Kro good news get positive but make sure you take it easy and don't over do it. Take care x

User

Posted 08 Apr 2016 at 20:39

Great news KRO,

Fingers crossed for a good psa result.

Cheers AL.

User

Posted 09 Apr 2016 at 05:07

hi KRO
great update heres to any follow ups being as good if not better

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 09 Apr 2016 at 08:33

Hi KRO steady progress , congrats, with the rehab definitely keep it in hand! Oops sorry keep on top,of it.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 14 Apr 2016 at 15:43

That has got to be a relief, well done to you and your surgeon.

Thanks Chris

User

Posted 14 Apr 2016 at 19:24

Great news KRO all seems to be going good, keep doing the PFE's don't strain anything too soon.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

Show Most Thanked Posts

User

Posted 28 Mar 2016 at 19:20

Good luck with it all!

User

Posted 28 Mar 2016 at 19:24

Hi, welcome to this site and if there is anything you need help with ask on here and you will get sound advice.

Best wishes with your treatment and recovery

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 28 Mar 2016 at 19:33

Hi KRO

It sounds as though you are feeling pretty up beat following your surgery which is great. Hope things will continue well for you but don' t overdo it as you need to give your body time to recover.

Keep us posted with your post op results.

Kind regards,

Kevan

User

Posted 28 Mar 2016 at 19:51

Welcome from me too KRO

We can't control the winds - but we can adjust our sails

User

Posted 31 Mar 2016 at 14:37

Trial without catheter today.

Catheter out, three wees, three scans, bladder emptying so no more tubes!

Small amount of dribbling - but expecting that.

PFME regime starts now.

User

Posted 31 Mar 2016 at 16:00

Hi KRO,

Welcome from me too.

It's great to get the catheter out, 10 days now for me, I too dribbled for a few days but now almost totally dry although I still wear a pad when out and about as I don't trust myself yet!!

Plenty of help and advice on this site which I have found invaluable and as Kevan says please take it easy. Best wishes with your recovery.

Regards

User

Posted 08 Apr 2016 at 17:52

Update: Post op follow up.

Two areas of cancer one Gleason 3+3 the other 3+4.

All contained within prostate and with good margins.

No evidence of cancer at surgery areas.

Both sets of nerves spared.

Next step PSA test at 3 months.. but looking good!

User

Posted 08 Apr 2016 at 18:17

Brilliant news.
Sounds like text book surgery on a cancer caught at the right time. And bundles could mean future fumbles. Best wishes for next psa
Chris

User

Posted 08 Apr 2016 at 19:23

Sounds like your upbeat about everything and I hope it all goes well for you.

Recover well !

Regards ,

John

User

Posted 08 Apr 2016 at 19:41

Kro

That all sounds good news hope your recovery goes well. Have you got all your penile rehabilitation appointments and treatment planned ?

Thanks Chris.

User

Posted 08 Apr 2016 at 19:43

So very pleased to hear that things are continuing well for you. Always nice to share good news and I hope the PSA test result will be good.

All the very best for the future.

Kevan

User

Posted 08 Apr 2016 at 20:35

Kro good news get positive but make sure you take it easy and don't over do it. Take care x

User

Posted 08 Apr 2016 at 20:39

Great news KRO,

Fingers crossed for a good psa result.

Cheers AL.

User

Posted 09 Apr 2016 at 00:33

Originally Posted by: Online Community Member

Kro

That all sounds good news hope your recovery goes well. Have you got all your penile rehabilitation appointments and treatment planned ?

Thanks Chris.

In hand.. Consultant on the case :-)

User

Posted 09 Apr 2016 at 05:07

hi KRO
great update heres to any follow ups being as good if not better

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 09 Apr 2016 at 08:33

Hi KRO steady progress , congrats, with the rehab definitely keep it in hand! Oops sorry keep on top,of it.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 10 Apr 2016 at 21:28

Sounds good. So how did you get both nerves spared? My prospective surgeon has said one will have to go. I have Gleason 3+4 but it's one tumour in the middle (20%) of one side only, none on the outside, Stage 2a, no weeing issues, so I dont see why I can't have both spared.

Thanks

David

User

Posted 10 Apr 2016 at 22:13

Welcome, David.
I suspect your surgeon wants to get 'good clearance' on the side of the prostate with the tumour in. This will optimise the chances of them removing all the cancer. Prostate cancer has a nasty habit of having got further than scans and biopsies show!
Good luck with your treatment?
Henry

User

Posted 10 Apr 2016 at 22:25

Hi Henry,
Yes I agree but how come one person has both nerves saved when the cancer is in part of one side.....when one of mine will go! ? I dont get how anyone gets both saved....if I dont!

User

Posted 10 Apr 2016 at 22:28

?....and what is the experience of folks for ED for when only one nerve is saved...in a relatively young man of 56?! Is one nerve actually any good?

User

Posted 11 Apr 2016 at 00:12

Originally Posted by: Online Community Member

Hi Henry,
Yes I agree but how come one person has both nerves saved when the cancer is in part of one side.....when one of mine will go! ? I dont get how anyone gets both saved....if I dont!

Your consultant and other members of your medical team have had the benefit of seeing your scans, which we haven't. The surgeon is obliged to operate in a way that preserves tyour life and eradicates the cancer. Presumably, they are concerned enough about the siting of your tumour to believe that it isn't a good idea to leave that nerve bundle. To leave a nerve bundle intact could be likened to leaving the outer skin of the prostate - imagine that a cobweb is fixed to the outside of an apple and they are trying to remove the apple without disturbing the cobweb. That means leaving some of the apple-skin but as little of the apple white as possible.

If leaving a nerve bundle behind means that there is a chance of any cancer being left behind, a responsible surgeon simply won't do it.

The science says that only having one set of nerves reduces the chance of erectile recovery. But not as straightforward as you might imagine - there are men who have full nerve-sparing but never regain erections, even with chemical / mechanical help. There are men who have non-nerve sparing and somehow recover. Men with some nerves may be impotent for the rest of their lives, may manage fine with help or may recover fully. See my 'one wife's story of ED' for John's experience - one bundle saved, lots of angst but full recovery of natural erections about 4 years post-op. Unfortunately, no cure though - the op didn't get it all so salvage treatment 2 years later and now holding our breath in case it has come back again. Possible reason for this? They left the nerve bundle on the side they believed was unaffected but once it was in a petrie dish it turned out there was far more cancer on the 'nerves saved' side than the 'nerves removed' side.

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

User

Posted 11 Apr 2016 at 07:59

Hi David,

My original diagnosis was T1c Gleason 3+3 and with no previous symptoms. It was a bit of an "accidental" find after blood tests for another ailment.

After all tests biopsies and MRI, my consultant was confident that it was all contained and I opted for open surgery (as he prefers that for nerve sparing).

Are you thinking of having robotic surgery - as I believe that it may be more difficult to spare both sides using that method?

Oh... and post ops showed that 10% of prostate cancerous - yours at 20% and all in one side is probably quite different?

Edited by member 11 Apr 2016 at 08:04 | Reason: Not specified

User

Posted 14 Apr 2016 at 14:43

Got confirmation of post ops in post today.

Gleason 3+4 organ confined... pT2c Nx with all the margins negative.

Sildenafil on its way... :-)

User

Posted 14 Apr 2016 at 15:43

That has got to be a relief, well done to you and your surgeon.

Thanks Chris

User

Posted 14 Apr 2016 at 19:24

Great news KRO all seems to be going good, keep doing the PFE's don't strain anything too soon.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

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