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That was not in the plan.

User
Posted 01 Aug 2018 at 23:05

Thanks for the support, firstly it has been a long day, the total round trip was eight and a half hours for a twenty minute consultation. Fortunately the twenty minutes was with the consultant I wanted to see and who has been realistic and gives me some reason to be cautiously optimistic.


He has suggested a change of anti spasm medication and a bladder function test to establish exactly what is happening. Depending on the outcome of that there was talk of botox injections into the bladder and possible bladder augmentation using part of the bowel, he even spoke about urethral reconstruction that had previously been dismissed.They are all more appealing options than bladder removal, but I am well aware that may be the ultimate solution.


I don't think the hyperbaric oxygen treatment is making any difference apart from giving me  toothache and causing my slight hearing problems to get worse. 


I am considering an alternative treatment but I won't go into that, if it helps I will let you know.


The PSA reduction  is obviously a step in the right direction. CJ you are quite right, four and a half years of treatment and about twelve months of discomfort or pain takes it toll mentally and physically. Lynn ,how do I feel about the plan ? disappointed it wasn't implemented by my local hospital last year, 


Having said all that I am still here and still moaning, and the ******* train only had two carriages instead of four again.


Thanks to you all Chris


 


 

User
Posted 02 Aug 2018 at 08:52
Quote" Having said all that I am still here and still moaning, and the ******* train only had two carriages instead of four again."

and the train isn't in the siding yet Chris. !!


*****
We can't control the winds - but we can adjust our sails
User
Posted 03 Aug 2018 at 17:08

it was really a tough test but you seem to have the courage pal

User
Posted 20 Dec 2018 at 07:31

Hi all


Today is the fifth anniversary of my prostate cancer diagnosis.  A big thank you to all who have supported and helped me over the years. Best wishes.



 


Thanks Chris


User
Posted 21 Dec 2018 at 04:15

And the support you give others has been fantatsic too xxx

User
Posted 21 Dec 2018 at 11:06
Well done, Chris. Keep fighting and have a great Xmas.
User
Posted 24 Dec 2018 at 02:18
Happy anniversary xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jan 2019 at 17:44

A quick update. My bladder capacity is now down to around 50ml. A few days ago I had some bottox injections into my bladder in an attempt to calm the spasms down, for the last few days I have been spasm and pain free, only leaked a very small amount, how long it lasts remains to be seen.  So you would think things were on the up , no. Now 20 months post SRT and my latest PSA is up from 0.05 to 0.1, not a less than but an actual 0.10.  On the remote chance that the dilation, prodding around in the bladder and injections a few days before the blood test  have somehow elevated the PSA, I am having another test in 4 weeks time. We often talk about refraining from bike riding and sexual activity etc before PSA tests but does that still apply when your prostate has been removed and the bed irradiated ?


 


 

Thanks Chris

User
Posted 25 Jan 2019 at 17:56

Chris sorry to hear the PSA has risen. I have no idea if the sexual activity bit still applies. I think it’s unlikely the bike riding will as there is no prostate to ‘massage’ with the seat.
Here’s hoping the PSA has dropped in four weeks. Im giving blood next week to see what’s happening with my rise


Keep the faith Chris


Bri

User
Posted 25 Jan 2019 at 18:04
I don't have any advice to offer Chris but I'd like to return the support you have given me. I hope they can find a way to improve the waterworks for you soon. Best wishes.
User
Posted 25 Jan 2019 at 20:36
Just sending best wishes and regards and respect from us both. Spent 7 hrs at hospital today getting a full body bone scan and stuck in the waiting room with an end-stage guy and his wife. It only seems to get bl**dy worse and worse doesn’t it !! Can they still remove your bladder Chris?? Is that still on offer ??

If life gives you lemons , then make lemonade
User
Posted 25 Jan 2019 at 20:46

Sorry to read that Chris. Sending good wishes.

User
Posted 25 Jan 2019 at 21:20
Hi Chris,

Sorry to read that the figure is an "actual" value.

I don't know the answer to your question, maybe someone at the helpline can assist?

Fingers crossed for your test at 4 weeks.

dave
Do all you can to help yourself, then make the best of your time. :-)
User
Posted 25 Jan 2019 at 22:30

Hi Chris   Fingers crossed for you also and hoping that it's as you say just the poking and prodding that's caused the rise in your PSA.  Would seem a possibility to me.


Best Wishes


Ann

User
Posted 26 Jan 2019 at 01:06
Chris, John's PSA went up to 0.1 and then 0.11 about 3 years ago and has then gone back to <0.1 more or less every test since. Too soon to panic, I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Jan 2019 at 08:17
Just returning support Chris. Sounds like good advice above.

Hopefully just a blip

Good luck

Cheers
Bill
User
Posted 26 Jan 2019 at 09:49

Hi Chris,


Hope it drops back down soon. Good luck.


Michaela

User
Posted 26 Jan 2019 at 10:09

Originally Posted by: Online Community Member
Chris, John's PSA went up to 0.1 and then 0.11 about 3 years ago and has then gone back to <0.1 more or less every test since. Too soon to panic, I think.


i was telling Lesley this last night. It does offer reassurance


Bri

Edited by member 26 Jan 2019 at 10:10  | Reason: Not specified

User
Posted 26 Jan 2019 at 17:39

Thanks to you all for your support.


CJ I can still have the bladder removed but it is a major and risky operation, I joined a urostomy site and I know what we say about forums but many have to deal with leaking bags and stomas. Many also suffer with phantom urges and pelvic discomfort. The SPC is an inconvenience but is manageable.


Kentish , what a trooper you are. 


Lyn


Not quite in panic mode yet, disappointed yes. I follow John's progress with great interest and as Bri says it is reassuring to see his results. Do you have a view on the elevated PSA being caused by the op ect?


Thanks again to you all Chris.


 

User
Posted 27 Jan 2019 at 09:13
Hi Chris

Just adding my wishes that this is a blip.

PP
 
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