Good News and Bad News

User

Posted 17 Feb 2017 at 18:44

Dear Luther

Please accept my sincere condolences on your loss.

It is still very early days for you but I am sure you will remember the good times and I hope those memories far outweigh the sad ones.

Best Wishes my friend

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

User

Posted 17 Feb 2017 at 18:46

Dear Luther

Please accept my sincere condolences on your loss.

It is still very early days for you but I am sure you will remember the good times and I hope those memories far outweigh the sad ones.

Best Wishes my friend

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

User

Posted 18 Feb 2017 at 01:44

So sorry for your loss Luther,

I wish you strength in coming to terms with having lost a partner and hope you will receive good support.

Barry

User

Posted 19 Feb 2017 at 15:01

Hi Luther

All the very best.

Gordon

User

Posted 19 Feb 2017 at 19:24

Hi Luther

I don't come along here much at the moment but popped in tonight to see your sad news. I am so sorry for your loss, rereading your post on your wife's diagnosis and the time it took to get there, is equally upsetting. Having recently lost my sister I am aware that sometimes death isn't the worst thing to happen, it sounds like this was the case for you and your wife.

Your story does demonstrate the difference between an early and late diagnosis.

My sincere condolences.

Devonmaid

User

Posted 19 Feb 2017 at 19:31

So sorry to hear of your loss, take care of yourself.

Thanks Chris

User

Posted 19 Aug 2017 at 19:14

Hello everyone,

Sorry I don't participate on here as much as I should ... I'm still adjusting to life after losing my wife on 23rd Dec 2016

I do however read most of your posts and I'm pleased to see the 'regulars ' are still active and offering good advice to the newbies as always.

My latest update:

I'm pleased to say that my latest PSA level still remains at <0.01 @ 38 months post RP ... ( very good news! )

I've finally asked for a referral to Bristol Southmead ( where my da Vinci op was performed ) for an assessment to see if my continuing incontinence problem can be improved upon...

My main concern is that I don't want to risk making things any worse... I was assured that if any procedure were to be performed then it would be to improve rather than make things worse ...
Anyhow...I've nothing to lose by attending an assessment and I can make a decision if help is offered..

Best wishes to you all
Luther

User

Posted 19 Aug 2017 at 19:26

Great words Luther. I have to admit I've missed you and am still grateful for your early help. You've been very lucky in some ways with your treatment , but I'm sure ongoing incontinence must be atrocious when you are essentially cured. And then your wife ..... it was awful news for everyone and a shock. I would go with your gut. At least get advice and see what you are comfortable with , especially if it involves more surgery. Wish I could help more. Nice to hear from you !

If life gives you lemons , then make lemonade

User

Posted 19 Aug 2017 at 20:36

Condolences Luther. X

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

User

Posted 22 Aug 2017 at 20:09

Good news Luther, always glad to hear positive news.

I hope you are getting along ok, it can't be easy for you.

Cheers

Devonmaid

User

Posted 18 Feb 2018 at 15:16

Hello again everyone..

Well.... Another 6 months have passed and 'squeaky bum time' has been and gone for me once more....

My 6 monthly PSA result remains undetectable at < 0.01 ...so another good result!

I'm well aware that I'm by no means out of the woods yet, and I doubt I ever will be......but at almost 4 years since my RP I have to be encouraged and grateful....

However... my leaking still continues...so I guess it's not all plain sailing.. ( Please don't tell me to do my PFE's lol! ) https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

I've recently had a consultation with a Professor bloke at Bristol Southmead.... The only procedure they currently offer is an AUS implant...
A recent trial at Bristol ...Sling v AUS finished in December 2017 and the results won't be available for a couple of years according to said Professor bloke...
Having considered all the info available to me I've decided to decline the offer of an AUS for the foreseeable future as I feel the procedure is just too invasive for my liking at the moment...
If my leaking deteriorates to a point that it becomes hard to manage on a daily basis the Professor bloke says he will be happy to review me again....
So it's a Dribble Stop ( external AUS ? https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif lol! ) and a pad when out and about walking with the dogs ..... not ideal.... but manageable for me.
A small price to pay in the grand scheme of things ...so I'll stop moaning and just get on with it! https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Best wishes to you all.

Luther

User

Posted 18 Feb 2018 at 15:53

Hi Luther.

Glad yo hear your PSA is undetectable again. 😁 That gives us hope that remission will be long term if not indefinate. My husband's post op stats are just about identical to yours.

He is only coming up to 3 months post surgery and still suffering from the dreaded incontinence. Although no problems whilst in bed or just sitting he is still leaking badly the rest of the time. We thought there may have been a bit of an improvement by now.He is now seeing a specialist physiotherapist so hopefully she can help him strengthen his pelvic floor. We are just hoping the external sphincter is not badly damaged.

Early days I know but the urologist has said he will refer him to a colleague for consideration of an AUS after about 9 months if the situation is still the same. This worries me a bit that the Urologist is even thinking along these lines already.

Time will tell I suppose but I know we just have to be pleased that the cancer is hopefully gone and get on with life.☺

User

Posted 18 Feb 2018 at 17:49

Hi Luther

It's great to hear from you again and to see that your PSA is behaving itself.

Sorry that you are still suffering with incontinence problems but I understand the reluctance to go with the AUS.

As you say, it's not all plain sailing but I'm sure that I'm not the only one to appreciate you sharing your good news when you have had your own problems to come to terms with.

Thanks again and take care.

Kevan

User

Posted 18 Feb 2018 at 20:15

Glad there is some positive news there Luther.

Hopefully there will be improvement in the leaking area in time.

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

User

Posted 18 Feb 2018 at 21:50

Luther

Great news on the PSA, have you considered using the sheath system before you commit to the AUS ?

Thanks Chris

User

Posted 19 Feb 2018 at 14:23

Hi Chris,

Yep....I've used the Conveen sheath system with 'sports' leg bag in the early days...

But I'm finding it much easier these days to use a Dribble Stop with a light pad when out and about....especially when walking or visiting the pub!

Cheers https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
Luther

User

Posted 17 Aug 2018 at 13:59

Hello again everyone...

Just a little update from me:

Well......Squeaky bum time has been and gone again and I'm pleased to report that my PSA remains stable and 'undetectable ' at <0.01 ...so over 4 years now since my RP.
I've now been put back under the care of the Specialist nurses at my local hospital, who will ring through my future blood results ...so no need to see my urologist unless I request a consultation ...or my PSA level starts to misbehave...

I'm still managing my leakage problems with the aid of a Dribble Stop and a pad when out and about....so still no intention as of yet to go for an AUS

My neurovascular nerve bundle was spared on one side only and I'm still unable to achieve an erection without the help of Caverject or Invicorp
( both work very well I'm pleased to say)

Since losing my wife to cancer over 20 months ago I now have a new partner .... ( not a live in one...... yet... lol! )
She is very supportive and not in the least bit phased by my side effects resulting from surgery and so we have a 'normal' healthy relationship....something that I thought I'd never be able to find again after losing my wife..

I guess what I'm trying to say is, even when you think that no one will be interested in you because of some pretty life changing side effects a lot depends on a person's attitude and approach to things?...
I've been very lucky so far....I appreciate not everyone has been so fortunate

Best Wishes to you all
Luther

User

Posted 17 Aug 2018 at 14:47

Luther - good to read your good news - Ulsterman

User

Posted 17 Aug 2018 at 15:35

Luther absolutely lovely news all round friend. I’m really mega happy for you and your good results and new lady. These ladies can be very very caring can’t they ? And very loving and tolerant and forgiving. I’m a very lucky man also. Best wishes friend.

If life gives you lemons , then make lemonade

User

Posted 17 Aug 2018 at 16:26

Luther

Great news ,long may it continue. Really pleased things are going well for you, best wishes.

Thanks Chris

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