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That was not in the plan.

User
Posted 10 August 2017 21:33:09(UTC)
11 weeks post salvage RT, PSA down from 0.27 to 0.08.

Thanks Chris
User
Posted 10 August 2017 21:44:44(UTC)

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




If life gives you lemons , then make lemonade
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User
Posted 10 August 2017 23:53:29(UTC)

That is so good to see - congratulations x

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


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User
Posted 11 August 2017 04:54:42(UTC)
Great news, Chris
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User
Posted 11 August 2017 05:35:08(UTC)

Great news Chris

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User
Posted 11 August 2017 05:44:21(UTC)

Excellent news Chris

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User
Posted 11 August 2017 06:07:09(UTC)

Well done Chris.

Very pleased for you.

We can't control the winds - but we can adjust our sails
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User
Posted 11 August 2017 07:50:00(UTC)

Top news Chris! Chuffed to rocks for you!

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User
Posted 11 August 2017 13:50:06(UTC)
Great news Chris. It's a great feeling isn't it.

All the best,

Kevan
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User
Posted 11 August 2017 15:14:06(UTC)

Fabulous news Chris
Keep on rocking

Paul

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User
Posted 11 August 2017 15:21:41(UTC)

Cool stuff Chris

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User
Posted 11 August 2017 17:10:14(UTC)

Woo hoo! Fab news indeed...

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User
Posted 11 August 2017 17:26:04(UTC)

Sound result!

 

 

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User
Posted 11 August 2017 22:30:20(UTC)
Fandabidosie .
Brilliant result .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 12 August 2017 01:42:00(UTC)
That's wonderful news, Chris.

Really pleased for you.

Steve
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User
Posted 12 August 2017 19:42:41(UTC)
Oh wow, so delighted to see this news.
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User
Posted 28 November 2017 18:30:53(UTC)
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 November 2017 19:24:40(UTC)

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 November 2017 09:44:13(UTC)
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 March 2018 21:08:56(UTC)
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 March 2018 23:26:32(UTC)

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

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 08 March 2018 08:42:09(UTC)

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




If life gives you lemons , then make lemonade
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User
Posted 08 March 2018 08:53:41(UTC)

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
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User
Posted 08 March 2018 11:44:06(UTC)
Sorry to hear about your latest situation, I hope they can find a good resolution for you soon.

Best wishes, Arthur
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User
Posted 08 March 2018 12:04:36(UTC)
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
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User
Posted 28 March 2018 19:12:26(UTC)
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
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User
Posted 28 March 2018 20:00:07(UTC)

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
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User
Posted 28 March 2018 20:33:26(UTC)

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
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User
Posted 28 March 2018 22:01:30(UTC)

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.

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User
Posted 28 March 2018 22:24:28(UTC)

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


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User
Posted 29 March 2018 10:36:01(UTC)
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.
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User
Posted 29 March 2018 11:58:03(UTC)
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
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User
Posted 29 March 2018 13:36:03(UTC)

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.

 

  

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


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User
Posted 29 March 2018 13:54:45(UTC)

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


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User
Posted 29 March 2018 18:29:01(UTC)

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

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User
Posted 30 March 2018 17:47:18(UTC)

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


Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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