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That was not in the plan.

User
Posted 10 Aug 2017 at 22:33
11 weeks post salvage RT, PSA down from 0.27 to 0.08.

Thanks Chris
User
Posted 10 Aug 2017 at 22:44

Yay Chris. Hopefully well worth it I'm sure. You're a trooper mate.


If life gives you lemons , then make lemonade
User
Posted 11 Aug 2017 at 00:53

That is so good to see - congratulations x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Aug 2017 at 05:54
Great news, Chris
User
Posted 11 Aug 2017 at 06:35

Great news Chris

User
Posted 11 Aug 2017 at 06:44

Excellent news Chris

User
Posted 11 Aug 2017 at 07:07

Well done Chris.

Very pleased for you.

We can't control the winds - but we can adjust our sails
User
Posted 11 Aug 2017 at 08:50

Top news Chris! Chuffed to rocks for you!

User
Posted 11 Aug 2017 at 14:50
Great news Chris. It's a great feeling isn't it.

All the best,

Kevan

Life doesn't have to be perfect to be wonderful 

User
Posted 11 Aug 2017 at 16:14

Fabulous news Chris
Keep on rocking

Paul

User
Posted 11 Aug 2017 at 16:21

Cool stuff Chris

User
Posted 11 Aug 2017 at 18:10

Woo hoo! Fab news indeed...

User
Posted 11 Aug 2017 at 18:26

Sound result!


 


 

User
Posted 11 Aug 2017 at 23:30
Fandabidosie .
Brilliant result .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Aug 2017 at 02:42
That's wonderful news, Chris.

Really pleased for you.

Steve
User
Posted 12 Aug 2017 at 20:42
Oh wow, so delighted to see this news.
User
Posted 28 Nov 2017 at 18:30
Well the good news is the PSA is down from 0.08 at three months post SRT to 0.04 at six months post SRT.

The water works are still a nightmare and we are still looking at either long term SPC or bladder removal and a urostomy bag. My consultant is happy to refer me to a consultant outside his circle of colleges to get a fresh view of the problem.

I do not recall seeing any other guys on here who have lost their bladder as a result of RARP or RT.

Thanks Chris
User
Posted 28 Nov 2017 at 19:24

You have had a real rough ride of it Chris. When I saw my Uro after the op , he said in hindsight he wished he’d removed the bladder. Having said that they are not attributing my racing psa to that area ! On a good note it seems you did just have rogue cells in the prostate bed and the RT has hopefully fixed it. I was surprised though with all your strIcture probs that they offered RT.
Anyway best wishes mate


If life gives you lemons , then make lemonade
User
Posted 29 Nov 2017 at 09:44
Thanks CJ.

It did take a second opinion to get the RT without having the bladder removed, but the trade off was having the SPC just in case the urethra closed up. The urethra has more or less survived but now they are saying the bladder has been damaged by the RT. Now the bladder capacity is quite low around 200ml uretheral reconstruction and AUS look to be off the table.

I am pursuing alternative options including alternative therapies.

Thanks Chris
User
Posted 07 Mar 2018 at 21:08
Well a bit so a tish day today PSA up from 0.04 to 0.06 now 9 months post SRT. I also went to see a prof in Manchester about the shrinkage of the bladder, he is not optimistic of getting the capacity back and has suggested bladder removal. My already defective kidneys could be made worse by extra pressure from the bladder. I was quite relaxed about such a small PSA rise until prof commented that there was possibly something lurking around.

Then to top it off the 4 carriage train was substituted by a 2 carriage train and it was packed.

Thanks Chris
User
Posted 07 Mar 2018 at 23:26

A packed 2 carriage train Chris? That would be the final straw for me. ;-)

Adore your resilience. Choose wisely mate, and then go for it.

atb to you and D

x

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 Mar 2018 at 08:42

Oh man I remember you trying to decide what to do and I voted for bladder out back then. You’ve been through all this and it’s not worked :-((
I so admire you , always have , and feel so awful what you’ve been through though I’m probably yet to experience it myself. Try and stay strong Chris. Our love and wishes to you

Edited by member 08 Mar 2018 at 08:42  | Reason: Not specified


If life gives you lemons , then make lemonade
User
Posted 08 Mar 2018 at 08:53

What a choice to have to make Chris,

Good luck with whatever path you go down

You are one strong man

***

We can't control the winds - but we can adjust our sails
User
Posted 08 Mar 2018 at 11:44
Sorry to hear about your latest situation, I hope they can find a good resolution for you soon.

Best wishes, Arthur
User
Posted 08 Mar 2018 at 12:04
I know you will make your choice and live with it Chris as you have always done.
You are very strong, hope you get things sorted out.
Ian
User
Posted 28 Mar 2018 at 20:12
Hi guys

Well I had a couple of days in The Christie this week and I have got to say it is a superb hospitial.

I had cystoscopy and urethrotomy under general anesthesia, the surgeon has cut into the stricture so a little nervous of how that will affect my already iffy incontinence. They filled the bladder to ascertain it's capacity and sadly it it now down to 120ml. The bladder is badly scarred by the radiotherapy and there is little chance of the bladder recovering. I see the surgeon in a couple of weeks to discuss options but it comes down to Suprapubic catheter for life or bladder removal and urostomy bag, I am leaning towards SPC but do wonder how I might cope as I get older.

I now have two catheters again for two weeks, on this occasion the SPC is trouble and pain free, the urethral catheter is very uncomfortable mostly in the perineum area, the instilagel soon relieves the tip of penis stinging. I had forgotten how in uncomfortable bypassing could be.

I am going to have another 20 sessions of oxygen treatment, not over optimistic of it working, but there does not seem to be any effective treatment for radiation damage, only management of the side effects.

For my moaning subject I will pick hospital gowns, mine only had a tie trap on one side and I got fed up of seeing men's bare backsides hanging out of untied gowns.

Thanks Chris
User
Posted 28 Mar 2018 at 21:00

So sorry Chris really I am. It’s an utter credit to you as a man what you have squared up to. You’ve never given up and I doubt you ever will but we genuinely feel so sorry for all you’ve been through. Strength to you both from us both


If life gives you lemons , then make lemonade
User
Posted 28 Mar 2018 at 21:33

So sorry to read your latest update Chris.

I'm sure you'll deal with it all in your usual phlegmatic manner.

Good luck and Best Wishes

We can't control the winds - but we can adjust our sails
User
Posted 28 Mar 2018 at 23:01

Chris what an awful time you continue to have. I just hope some kind of doable procedure can give you some respite. Thinking of you,mate.

User
Posted 28 Mar 2018 at 23:24

I thought the NHS had done loads of work around respect and dignity? Apparently, the newsletter about patient bums hasn’t made it as far as the Christie :-/

A terrible choice for you to make but I think you have a real trust and confidence in your surgeon who will guide you in the right direction. Did you ask though, if you choose SPC now does that completely rule out bladder removal in the mid to far future?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Mar 2018 at 11:36
Sorry to read this Chris. As others have said you have dealt with issues as they come along.
I really admire how you have done that.
Hoping you can get a workable solution to this.
Wishing you all the best, Ian.
User
Posted 29 Mar 2018 at 12:58
Thanks for the support guys.

Lyn

I think it is the older male patients who need the newsletter, preferably pinned to the back of their gowns. The staff are very good at the modesty and privacy procedures,saying "knock knock" and always asking before entering closed curtains etc and very quick to cover up the elderly gentleman's exposed bits when thet get out of bed or come out of the bathrooms etc.

As regards the SPC if you mean am I aware a long term catheter can cause bladder cancer then yes I am. Having a urostomy or a SPC still means messing around draining bags etc. My new normal is having a suprapubic and I can cope with it. Going through another major op and with my luck having possible complications isn't a risk I want to take at the moment. It is a pity there is not a reasonably priced decent incontinence system that does not involve clamps or gluing things to my penis.

Sandra not sure about phlegmatic, I have my ups and downs and some very dark days. Just coming up to the fourth anniversary of my surgery and it take its toll. In my bay at hospitial there were 4 beds the other three guys were all in a worse situation than me.

When I started my journey nearly four and a half years ago there was talk of a vaccine for PCa, within 5 years, will it happen this year ?

Thanks Chris
User
Posted 29 Mar 2018 at 14:36

Originally Posted by: Online Community Member
Thanks for the support guys.

Lyn

I think it is the older male patients who need the newsletter, preferably pinned to the back of their gowns.


 


https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Mar 2018 at 14:54

Sorry no, I wasn't thinking about bladder cancer down the line - I was just thinking that if you choose SPC now and then can't manage it when you are older, would you be able to have the bladder removed? In other words, you can't choose option B and then revert to option A but could you go with option A and still have option B if you needed it?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Mar 2018 at 19:29

Bloody hell Chris....what a decision. As others have said you have had it tough but you continue to face up to the issues with dignity

Stay strong mate

Bri

User
Posted 30 Mar 2018 at 18:47

Hi Chris,

Blimey. What to say? All along, you have been just amazing, stoic, strong, taking each new hurdle in your stride. Much respect.

As for people being worse off than you? There will always be people worse off and better off. Mind you I think there are probably fewer people in the latter category? Anyway, it does not detract from your situation.

Make your best choice, and go for it. Your luck has to change some time!

atb to you and D.

dave


Do all you can to help yourself, then make the best of your time. :-)
User
Posted 28 Apr 2018 at 08:17
Four years on

Well 4 years ago today I had surgery to remove my cancerous prostate.

Congratulations to those who are well on the road to full remission.

Commiserations to those who are still battling with this awful disease or its adverse effects and thanks to all the loved ones who have supported thier men during thier journeys.

Condolences to the loved ones of the men who sadly did not make it.

Thanks Chris
User
Posted 28 Apr 2018 at 08:40
Hi Chris

Thank you for sharing your story over this time as the information and advice you share has been and will continue to be appreciated by many on this site.

Very best wishes to you.

Kevan

Life doesn't have to be perfect to be wonderful 

User
Posted 28 Apr 2018 at 09:40
Thanks for this message Chris. It sums things up nicely.
Best wishes to you, Ian.
User
Posted 28 Apr 2018 at 11:33

Three years mid June for me and it’s far from over. I guess it will only get worse. I can’t think of many men who have had it tougher than you Chris. You’ve been amazing and strong


If life gives you lemons , then make lemonade
User
Posted 28 Apr 2018 at 16:48

 


"Congratulations to those who are well on the road to full remission.

Commiserations to those who are still battling with this awful disease or its adverse effects and thanks to all the loved ones who have supported thier men during thier journeys.

Condolences to the loved ones of the men who sadly did not make it".


 


Chris, what a poignant, humbling message that is.


It has special meaning for everyone on here.


Here you are, four years on, after years of everything going wrong with your treatment, and yet you can type those words which say it all!


 


May you now look forward to things going right for you at last.


Nobody I know could have fought against your particular and constant problems with such strength as you have.


 


I salute you, and I pray that the day will come when we can all share good news from you.


 


Stay strong my friend,


 


 


George

User
Posted 03 May 2018 at 20:50

Hi Chris, so sorry to hear all the trouble you've had, I will stop complaining about the little i have gone through. I also suffered bladder retention and I know how painful that is, I had to be re-catheterized and ended up getting a water infection that was sorted fairly quickly with antibiotics. But my God what you have had to go through is just unbelievable.


Stay strong and I hope that you win your battle.

User
Posted 03 May 2018 at 21:07
Ants

Welcome to the site, complain all you like, that is part of the reason for the site. Our individual problems great or small are important to ourselves. I joined another site that supports people with radiation damage, my problems pale into insignificance when I read some of thier stories.

Hope your recovery goes well.

Thanks Chris
User
Posted 31 Jul 2018 at 21:21

I am now 14 months post SRT, just had my latest PSA result, it has gone down from 0.06 to 0.05 in the last three months. In view of the recent discussions about testing and assuming my maths is correct, that is a reduction of 0.00000000001 of a gram per /mil. Makes you wonder how such a minute amount (the 0.05) can even be detected.


The destruction of the bladder is almost complete and I see my consultant tomorrow.


Thanks Chris

Edited by member 01 Aug 2018 at 07:18  | Reason: Not specified

User
Posted 31 Jul 2018 at 22:16
As per recent discussions , that result has zero value potentially. Unfortunately!!
Quite understandably I’m seeing a sad Colwick Chris and not your old self which makes me quite unhappy too. You’ve had it really really tough compared to a lot of us but have kept digging in and put a brave face on it all. I so hope surgery could fix things for you Chris. No one knows the right path but I’m steadfast on mine. Quality over quantity. I think pain and discomfort is the only thing that will sway me which sadly you’ve had plenty of. Otherwise I’m happy chugging along on zero treatment at all with psa over 38 and no test till January next year. Please keep well my friend. Don’t give up

If life gives you lemons , then make lemonade
User
Posted 31 Jul 2018 at 22:30
Good luck tomorrow Chris.

I hope the meeting gets you whatever it is you need and want

*************************
We can't control the winds - but we can adjust our sails
User
Posted 01 Aug 2018 at 10:55

All the best for appointment today Chris. 

User
Posted 01 Aug 2018 at 20:27
Hope the appt has gone ok Chris

Bri
User
Posted 01 Aug 2018 at 21:52
hope Your app went as well as you wanted it go Chris

Viv
X
The only time you should look back is to see how far you have come
User
Posted 01 Aug 2018 at 21:54
So how did it go? I hope there is a plan in place and you are feeling okay about it
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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