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That was not in the plan.

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.

Ido4

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

User
Posted 22 Feb 2019 at 16:21

Hi

One month on from the last PSA and a slight rise from 0.10 to 0.11, not much but would have preferred a slight drop. So 20 months on from SRT I would have hoped for something lower. Onco nurse has suggested three month testing and see onco if it gets to 0.2. Main thing still here still moaning.

Thanks Chris

User
Posted 22 Feb 2019 at 16:25

Heres hoping is stablises Chris. Lets keep each other informed on clinical opinions as it looks like we will be getting tests at the same time

Bri

Edited by member 22 Feb 2019 at 16:26  | Reason: Not specified

User
Posted 22 Feb 2019 at 17:13
You’re a trooper Chris. Best wishes with it all.

If life gives you lemons , then make lemonade

User
Posted 22 Feb 2019 at 17:17
Gutted for you but all is not yet lost
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Feb 2019 at 18:17

Sorry to read this Chris. 

Ido4

User
Posted 23 Feb 2019 at 13:41
Sorry mate. Lets hope it is still a blip.
User
Posted 23 Feb 2019 at 23:31

Hoping that this is a blip too Chris, love your attitiude

love Devonmaid xxx

User
Posted 28 Feb 2019 at 08:04

Thank you all for the support. So Monday evening I went for my follow up appointment with the urology consultant who is injecting my bladder with Botox. Given the state of my bladder he was surprised that the Botox had actually have any beneficial effects on the spasms and continence. Access to the bladder was quite difficult and at one point during the procedure he did consider abandoning the process. The radiation and or previous treatments have left me with a very rigid urethra and bladder neck. The shrinkage to the bladder also makes manoeuvring of the scope difficult. We may try accessing the bladder through the SPC next time.

 

We discussed bladder removal etc but he is concerned that possible radiation damage to the bowel would compromise the formation of the drainage arrangement and I would then be left needing a alternative way of draining the kidneys. So I am going to keep the SPC.

 

A bit of advice from the consultant, never have an SPC changed on a Friday afternoon, try to get it changed mid week and in the morning. If the replacement SPC will not go in, get to a urology department or ward within an hour, do not go to the emergency department.

 

The consultant also suspects that the prodding and poking of the procedure may have elevated the PSA results and the repeat test was probably taken too soon after the Botox procedure. I am not totally convinced but I cannot do anything about that so I will patiently wait until the next test in three months time. One thing I have learnt from the whole journey is to be patient and not get over stressed with the situation. If you can resolve a situation get on and do it , if you can't make the best of it.

 

Thanks again for all your support and thank you to Prostate cancer UK for providing this forum, it may have some glitches but the pros far outweigh the cons.

 

Thanks Chris

Edited by member 28 Feb 2019 at 08:05  | Reason: Not specified

User
Posted 05 Jun 2019 at 16:25

Update

5/6/2019 PSA 0.11, so no change. Botox to the bladder is starting to  wear off but just waiting for a date for repeating the process. Now five years from RARP and two years post SRT. Still here still moaning.

Thanks Chris

User
Posted 05 Jun 2019 at 16:35
Great news on psa chris. Hope you’ve reached a more steady , comfortable place !

If life gives you lemons , then make lemonade

 
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