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User
Posted 12 Aug 2016 at 13:17

Hi everyone,

Sorry I've not been active here for a while.....

Just to let you all know that my latest PSA test result @ 26 months post RP remains at <0.01 

Now for the bad news....
My wife has recently been diagnosed with Advanced Renal Carcinoma with spread to areas of spine.. pelvis... and a few small nodules in her lung..
She had no indication that anything was wrong until she started to suffer with severe pain in leg / groin area...
This was ' diagnosed' as damaged cartilage around hip joint.... 
Pain was getting worse and no meds prescribed by GP's were helping..... after months of waiting for a referral she eventually had an x-ray which showed a cracked pelvis...should get better on it's own we were told..

Still in extreme pain we were going to pay for a private consultation, but before that could happen her femur shattered one morning whilst standing making a drink in the kitchen...
At long last ct scans together with MRI and  x-rays were performed which showed secondary tumours in her bones!! ... she has had some spinal chord compression in C3 C6 and C7  areas for which she is currently having palliative  RT in hospital

I hope to have her home as soon as she is mobile and able enough.....

Makes me realise how fortunate I was to get an early diagnosis and to receive treatment with curative intent..

Sorry to go on a bit..

Best Wishes to you all
Luther 

User
Posted 17 Feb 2017 at 13:36

Hello again everyone,

Sorry I haven't contributed to this forum for a while...

Just to follow on from my conversation title......

The bad news is that my wife passed away on 23rd Dec 2016 ....after a short ( 6 months ) but very traumatic and painful illness
( Metastatic Kidney Cancer )

So now I have to face life without her, but at least she is out of pain now....

I have been reading various posts from wives on here who have lost their partners / husbands and how they are coping with life afterwards. I now have some understanding of their emotions as I find myself in a similar situation....

The good news is that my latest PSA results have come back yet again at <0.01 at approx 32 months post op. so I take great encouragement from that.

I still have minor ongoing continence issues, but because of my recent past situation have declined to be referred for further assessment until I can get my head straight and life back on track as far as possible.
I can manage the leaking situation reasonably well, so I'm in no hurry to see if things can be improved just yet....as I said to my consultant this morning, " The leaking won't kill me, and as long as my PSA stays undetectable I'll take that for now" 

I hope to be more active on here as time goes on in order to give some of the 'newcomers' some hope and encouragement and the benefit of my experiences ( both good and bad )

My very best wishes to you all

Luther

User
Posted 12 Aug 2016 at 19:19

Hi Luther
Pleased to hear the news of your low PSA but very sorry to hear your wife isn't doing so well,
Take care of each other
Viv
X

The only time you should look back is to see how far you have come
User
Posted 17 Aug 2018 at 16:35
Luther absolutely lovely news all round friend. Iโ€™m really mega happy for you and your good results and new lady. These ladies can be very very caring canโ€™t they ? And very loving and tolerant and forgiving. Iโ€™m a very lucky man also. Best wishes friend.
User
Posted 17 Aug 2018 at 21:46

Have just read all the posts on your thread here and as someone who is just starting on there journey of PC I can see your held in high regard on here and very understandabley so very sad for the loss of your wife how you have coped  with it and your own illness is an inspiration to someone like me

Edited by member 17 Aug 2018 at 21:50  | Reason: sp

User
Posted 21 Sep 2020 at 19:28

Hello everyone
It's been a while since I last posted... 
I do check in from time to time ...but feel I have nothing much to contribute ..so I keep quiet!  ๐Ÿ˜€
Sadly a few well liked and popular contributors have left us I see, and many new members have joined us 

This is just an update on my latest PSA test result: 
After more than 6 years since my encounter with the robot, I'm pleased to say that my PSA still remains stable at
< 0.01
I'm currently on annual blood tests with just a phone call from a nurse specialist to discuss results and any problems I may have 
Life has returned to as near normal as its likely to .... I still suffer with  ED but Mr Caverject sorts that problem out for me ๐Ÿ˜Š
I also still have some degree of stress incontinence ...but I've decided to manage that with the help of a penile clamp when out and about 
I was offered surgery for an AUS but declined that offer as its easier for me if the external clamp fails to chuck it away and buy a new one ๐Ÿ˜‰
I guess we all see and cope with things in our own way
All in all, I consider myself to be bloody lucky! 
Best wishes to you all 
Luther 


User
Posted 12 Aug 2016 at 13:17

Hi everyone,

Sorry I've not been active here for a while.....

Just to let you all know that my latest PSA test result @ 26 months post RP remains at <0.01 

Now for the bad news....
My wife has recently been diagnosed with Advanced Renal Carcinoma with spread to areas of spine.. pelvis... and a few small nodules in her lung..
She had no indication that anything was wrong until she started to suffer with severe pain in leg / groin area...
This was ' diagnosed' as damaged cartilage around hip joint.... 
Pain was getting worse and no meds prescribed by GP's were helping..... after months of waiting for a referral she eventually had an x-ray which showed a cracked pelvis...should get better on it's own we were told..

Still in extreme pain we were going to pay for a private consultation, but before that could happen her femur shattered one morning whilst standing making a drink in the kitchen...
At long last ct scans together with MRI and  x-rays were performed which showed secondary tumours in her bones!! ... she has had some spinal chord compression in C3 C6 and C7  areas for which she is currently having palliative  RT in hospital

I hope to have her home as soon as she is mobile and able enough.....

Makes me realise how fortunate I was to get an early diagnosis and to receive treatment with curative intent..

Sorry to go on a bit..

Best Wishes to you all
Luther 

User
Posted 12 Aug 2016 at 14:43
L

Go on all you like, good news about you but sorry to hear of you wife's problems.

Thanks Chris

User
Posted 12 Aug 2016 at 15:13

Dear Luther,

I'm so sorry to hear your latest news and hope that your wife gets some relief soon.

Please don't apologise for "going on a bit"

If it was me I'd be going on "a lot" !!

Best Wishes

Sandra

*********

We can't control the winds - but we can adjust our sails
User
Posted 12 Aug 2016 at 20:43
Hi Luther

Whilst I am pleased to hear about your PSA results I am so sorry to hear about your wife.

Thinking of you.

User
Posted 12 Aug 2016 at 22:44

So sorry to hear about your wife. I do hope she is more comfortable soon. Why is it that so many people seem to get so much to deal with? I'm glad to hear your results though.

 

User
Posted 12 Aug 2016 at 23:39
Oh Luther

This is awful news for your family, I'm hoping that despite the late diagnosis she can be made comfortable and mobile again. You poor soul, to have been through the RP and all it means and then have this happen to your wife, it's just horrible.

I wish with all my heart for her to come home again and enjoy some good times with you.

Great about your PSA but I'm guessing that feels a little incidental at the moment.

Lots of love

Devonmaid xxxx

User
Posted 14 Aug 2016 at 10:07
Hi Luther

Your PSA result is fabulous thank goodness for that.

I am so very sorry to hear about your wife though, what a sad and painful way to be diagnosed.

As DM has said it is just horrible that this should happen after all you have both been through already.

I pray that she can be made as comfortable as possible and can come home to you soon.

Thinking of you

xxx

Mo

User
Posted 14 Aug 2016 at 10:09
Hi Luther I am so sorry to read about your wife life can be so unfair sometimes I hope that you have family and friends who can support you both. So glad that your latest psa was all good. Take care Jayne
User
Posted 14 Aug 2016 at 17:10

Hi Luther
I was gutted to read this and really feel for you both at this time. Thankyou so much for your support on my journey thus-far , and please ask for help anytime.
Chris

User
Posted 14 Aug 2016 at 21:16
My thoughts are with you, your good lady and your family. What a bitter sweet experience for you. Wishing you the strength to cope.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 14 Aug 2016 at 21:43

Luther you are right good news and bad news, I hope your wife can get some help to feel better and come home.

Great news for you though

Thinking of you both, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 15 Aug 2016 at 14:35

Luther, I am so sorry to read your news. You are both on my mind x

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

User
Posted 16 Aug 2016 at 08:49
Luther

I don't know what to say. I'm so sorry. It seems so unfair.

I shall be thinking of you

Louise x

User
Posted 16 Aug 2016 at 12:59
Hi Luther,

So sorry to hear of your wife's illness. The longer I live, the more I become aware that life can be so unfair. Just when you get good news something else awful is lurking just around the corner.

I wish both of you the very best of luck, you deserve it.

Steve

User
Posted 16 Aug 2016 at 20:41

Hi Luther,

So sorry to hear about your wife. Hope you have the strength to bring her home but don't be afraid to ask for help from hospice/social services/ Macmillan nurses. It is appropriate in the circumstances. With best wishes to you both.Elajai.

User
Posted 17 Feb 2017 at 14:42

Really sorry to read this. Belated condolences and strength to you. I hope as the months roll by and summer comes that the grief lessens for you. Good news on the PCa front though. Thanks for your help in the early days and best wishes.

User
Posted 17 Feb 2017 at 15:18

Oh Luther, I am so sorry to see your news and how wonderful that even in your own darkness you are thinking about helping others.

Take good care of yourself,
Lyn x

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

User
Posted 17 Feb 2017 at 17:19
So sorry to hear of your loss Luther. Your compassion and care for other is very special. What an amazing guy.... my thoughts are with you.

Leila

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 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
L

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

Thanks Chris

User
Posted 19 Aug 2017 at 20:26

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 !

User
Posted 19 Aug 2017 at 21:36

Condolences Luther. X

We can't control the winds - but we can adjust our sails
User
Posted 22 Aug 2017 at 21:09
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. ๐Ÿ˜ 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.โ˜บ

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 15:47

Luther - good to read your good news - Ulsterman

User
Posted 17 Aug 2018 at 17:26

Luther

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

Thanks Chris

User
Posted 18 Aug 2018 at 01:10
Brilliant update Luther - my dad has also met a new partner although I havenโ€™t asked him whether he has introduced her to the caverject yet ๐Ÿ˜‚
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Nov 2018 at 20:03

Luther,

Thanks for posting your positive update. See that your gleason score was upgraded after surgery...seems quite a common occurrence.

I wish you all the very best.

Neil.

User
Posted 21 Sep 2020 at 22:59

Luther

Great to hear from you and what a brilliant result. 

Thanks Chris

User
Posted 21 Sep 2020 at 23:46

Great news Luther x

User
Posted 22 Sep 2020 at 07:10
Lovely to hear from you mate and great result all round essentially.
User
Posted 22 Sep 2020 at 11:58

Great result Luther. 

Ido4

User
Posted 22 Sep 2020 at 12:28

Great news Luther. We need posts like yours during these trying times.

User
Posted 22 Sep 2020 at 13:04

Yes, great news for you Luther. My husband had similar stats to yourself although we know everyone's situation is different. He will be 3 years on from his RARP in November so it gives us hope that just maybe he can remain recurrence free for years to come ( hopefully indefinitely) He only has a very slight leak if he is doing anything extremely strenuous although sadly our sex life is effectively ended. He cannot bring himself to try the injections so I have never pressurised him into it. We still consider ourselves to be lucky that the cancer was found when localised and at the very least it will buy him many years. Here's to your next 6 years being cancer free.

Best Wishes

Ann

Show Most Thanked Posts
User
Posted 12 Aug 2016 at 14:43
L

Go on all you like, good news about you but sorry to hear of you wife's problems.

Thanks Chris

User
Posted 12 Aug 2016 at 15:13

Dear Luther,

I'm so sorry to hear your latest news and hope that your wife gets some relief soon.

Please don't apologise for "going on a bit"

If it was me I'd be going on "a lot" !!

Best Wishes

Sandra

*********

We can't control the winds - but we can adjust our sails
User
Posted 12 Aug 2016 at 19:19

Hi Luther
Pleased to hear the news of your low PSA but very sorry to hear your wife isn't doing so well,
Take care of each other
Viv
X

The only time you should look back is to see how far you have come
User
Posted 12 Aug 2016 at 20:43
Hi Luther

Whilst I am pleased to hear about your PSA results I am so sorry to hear about your wife.

Thinking of you.

User
Posted 12 Aug 2016 at 22:44

So sorry to hear about your wife. I do hope she is more comfortable soon. Why is it that so many people seem to get so much to deal with? I'm glad to hear your results though.

 

User
Posted 12 Aug 2016 at 23:39
Oh Luther

This is awful news for your family, I'm hoping that despite the late diagnosis she can be made comfortable and mobile again. You poor soul, to have been through the RP and all it means and then have this happen to your wife, it's just horrible.

I wish with all my heart for her to come home again and enjoy some good times with you.

Great about your PSA but I'm guessing that feels a little incidental at the moment.

Lots of love

Devonmaid xxxx

User
Posted 14 Aug 2016 at 10:07
Hi Luther

Your PSA result is fabulous thank goodness for that.

I am so very sorry to hear about your wife though, what a sad and painful way to be diagnosed.

As DM has said it is just horrible that this should happen after all you have both been through already.

I pray that she can be made as comfortable as possible and can come home to you soon.

Thinking of you

xxx

Mo

User
Posted 14 Aug 2016 at 10:09
Hi Luther I am so sorry to read about your wife life can be so unfair sometimes I hope that you have family and friends who can support you both. So glad that your latest psa was all good. Take care Jayne
User
Posted 14 Aug 2016 at 17:10

Hi Luther
I was gutted to read this and really feel for you both at this time. Thankyou so much for your support on my journey thus-far , and please ask for help anytime.
Chris

User
Posted 14 Aug 2016 at 21:16
My thoughts are with you, your good lady and your family. What a bitter sweet experience for you. Wishing you the strength to cope.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE
User
Posted 14 Aug 2016 at 21:43

Luther you are right good news and bad news, I hope your wife can get some help to feel better and come home.

Great news for you though

Thinking of you both, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 15 Aug 2016 at 14:35

Luther, I am so sorry to read your news. You are both on my mind x

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

User
Posted 16 Aug 2016 at 08:49
Luther

I don't know what to say. I'm so sorry. It seems so unfair.

I shall be thinking of you

Louise x

User
Posted 16 Aug 2016 at 12:59
Hi Luther,

So sorry to hear of your wife's illness. The longer I live, the more I become aware that life can be so unfair. Just when you get good news something else awful is lurking just around the corner.

I wish both of you the very best of luck, you deserve it.

Steve

User
Posted 16 Aug 2016 at 20:41

Hi Luther,

So sorry to hear about your wife. Hope you have the strength to bring her home but don't be afraid to ask for help from hospice/social services/ Macmillan nurses. It is appropriate in the circumstances. With best wishes to you both.Elajai.

User
Posted 17 Feb 2017 at 13:36

Hello again everyone,

Sorry I haven't contributed to this forum for a while...

Just to follow on from my conversation title......

The bad news is that my wife passed away on 23rd Dec 2016 ....after a short ( 6 months ) but very traumatic and painful illness
( Metastatic Kidney Cancer )

So now I have to face life without her, but at least she is out of pain now....

I have been reading various posts from wives on here who have lost their partners / husbands and how they are coping with life afterwards. I now have some understanding of their emotions as I find myself in a similar situation....

The good news is that my latest PSA results have come back yet again at <0.01 at approx 32 months post op. so I take great encouragement from that.

I still have minor ongoing continence issues, but because of my recent past situation have declined to be referred for further assessment until I can get my head straight and life back on track as far as possible.
I can manage the leaking situation reasonably well, so I'm in no hurry to see if things can be improved just yet....as I said to my consultant this morning, " The leaking won't kill me, and as long as my PSA stays undetectable I'll take that for now" 

I hope to be more active on here as time goes on in order to give some of the 'newcomers' some hope and encouragement and the benefit of my experiences ( both good and bad )

My very best wishes to you all

Luther

User
Posted 17 Feb 2017 at 14:42

Really sorry to read this. Belated condolences and strength to you. I hope as the months roll by and summer comes that the grief lessens for you. Good news on the PCa front though. Thanks for your help in the early days and best wishes.

User
Posted 17 Feb 2017 at 15:18

Oh Luther, I am so sorry to see your news and how wonderful that even in your own darkness you are thinking about helping others.

Take good care of yourself,
Lyn x

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

User
Posted 17 Feb 2017 at 17:19
So sorry to hear of your loss Luther. Your compassion and care for other is very special. What an amazing guy.... my thoughts are with you.

Leila

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
L

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

Thanks Chris

User
Posted 19 Aug 2017 at 20:14

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 20:26

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 !

User
Posted 19 Aug 2017 at 21:36

Condolences Luther. X

We can't control the winds - but we can adjust our sails
User
Posted 22 Aug 2017 at 21:09
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. ๐Ÿ˜ 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.โ˜บ

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 14:59

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 15:47

Luther - good to read your good news - Ulsterman

User
Posted 17 Aug 2018 at 16:35
Luther absolutely lovely news all round friend. Iโ€™m really mega happy for you and your good results and new lady. These ladies can be very very caring canโ€™t they ? And very loving and tolerant and forgiving. Iโ€™m a very lucky man also. Best wishes friend.
User
Posted 17 Aug 2018 at 17:26

Luther

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

Thanks Chris

User
Posted 17 Aug 2018 at 21:46

Have just read all the posts on your thread here and as someone who is just starting on there journey of PC I can see your held in high regard on here and very understandabley so very sad for the loss of your wife how you have coped  with it and your own illness is an inspiration to someone like me

Edited by member 17 Aug 2018 at 21:50  | Reason: sp

User
Posted 18 Aug 2018 at 01:10
Brilliant update Luther - my dad has also met a new partner although I havenโ€™t asked him whether he has introduced her to the caverject yet ๐Ÿ˜‚
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Nov 2018 at 19:40

Ok peeps... 

Just a little update from me... 

I've recently been transferred into the care of the Specialist Nurses at my local hospital.. 

For some reason they wanted me to undergo a PSA blood test 3 months after my last consultation with the urologist which was in August 2018.. even though I currently have 6 monthly tests... 
I was informed that this was just to get me onto the 'system' ..anyhow.. mine is not to reason why in this case... 

My latest PSA was phoned through yesterday and ....it's still stable at  < 0.01 ...so very good news for me! ... 

My next PSA blood test will be around May / June 2019...which will be 5 years since my surgery... so fingers crossed for that one... 

As always, I'm very aware that I'm not out of the woods yet.... but I'm very grateful for 5 years of being cancer free so far.. 

In the words of my surgeon before my op... " You can choose to do nothing, but you'll be in serious trouble in 4 years if you choose to ignore it" 

I'm glad I didn't ignore it 

I hope this offers some encouragement to others with a similar clinical staging who have either recently undergone treatment or are about to undergo radical treatment of any kind... 

Best Wishes to you all 
Luther  


User
Posted 28 Nov 2018 at 20:03

Luther,

Thanks for posting your positive update. See that your gleason score was upgraded after surgery...seems quite a common occurrence.

I wish you all the very best.

Neil.

User
Posted 21 Sep 2020 at 19:28

Hello everyone
It's been a while since I last posted... 
I do check in from time to time ...but feel I have nothing much to contribute ..so I keep quiet!  ๐Ÿ˜€
Sadly a few well liked and popular contributors have left us I see, and many new members have joined us 

This is just an update on my latest PSA test result: 
After more than 6 years since my encounter with the robot, I'm pleased to say that my PSA still remains stable at
< 0.01
I'm currently on annual blood tests with just a phone call from a nurse specialist to discuss results and any problems I may have 
Life has returned to as near normal as its likely to .... I still suffer with  ED but Mr Caverject sorts that problem out for me ๐Ÿ˜Š
I also still have some degree of stress incontinence ...but I've decided to manage that with the help of a penile clamp when out and about 
I was offered surgery for an AUS but declined that offer as its easier for me if the external clamp fails to chuck it away and buy a new one ๐Ÿ˜‰
I guess we all see and cope with things in our own way
All in all, I consider myself to be bloody lucky! 
Best wishes to you all 
Luther 


User
Posted 21 Sep 2020 at 22:59

Luther

Great to hear from you and what a brilliant result. 

Thanks Chris

User
Posted 21 Sep 2020 at 23:46

Great news Luther x

User
Posted 22 Sep 2020 at 07:10
Lovely to hear from you mate and great result all round essentially.
User
Posted 22 Sep 2020 at 11:58

Great result Luther. 

Ido4

User
Posted 22 Sep 2020 at 12:28

Great news Luther. We need posts like yours during these trying times.

 
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