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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 ??
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

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

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.
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 17:25

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 17:35
Great news on psa chris. Hope you’ve reached a more steady , comfortable place !
User
Posted 05 Jun 2019 at 18:19
😎😎👍👍

Well done!

User
Posted 05 Jun 2019 at 18:30

That’s good news.

Long may you be here moaning! You’ve earned the right.

 

Ido4

User
Posted 05 Jun 2019 at 18:54
Seems we are both on a plateau at the moment Chris. I’m not having a PSA test for 6 months. But will keep an eye out for your 3 monthly result which I hope dips

Bri

User
Posted 05 Jun 2019 at 19:44
Glad to hear the good PSA news Chris and hope your other issues are still improving.

Cheers Bill

User
Posted 01 Aug 2019 at 18:09

A few weeks ago I got my annual  letter from my GP with a form for blood tests and a request to bring a urine sample to the surgery and have a BP check. The blood test form included a PSA test, my next  test is not until October but I just let them get on with it. Today I attended the surgery, everything thing seemed okay, " oh what was the PSA", " that is 0.22" .

So has my PSA gone up by 0.11 or doubled in two months ? A call to the onco nurse who got in touch with the oncologist (J) and not surprisingly I Will  have  my planned test  in the beginning of  October and see where we are going. "No point doing scans at such a low PSA level."

Having my Botox repeated tomorrow that should be interesting with a 50ml capacity bladder.

Thanks Chris.

Edited by member 01 Aug 2019 at 18:11  | Reason: Spelling

User
Posted 01 Aug 2019 at 18:55
Hi Chris,

Could that result be a blip, different machine, recalibrated machine etc? Or is it in line, ish, with your other results? I don't know what level they start to worry at? I know I start to worry at any rise.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 01 Aug 2019 at 19:05
You posted in Feb that the nurse had advised you to have 3 monthly tests so was there a result in May or did that test get missed?

Either way, you are aware that 0.22 is significant for a man with no prostate. All you can do is wait for the next test result and see what onco suggests ... if they are still saying in October “too low for scans” you will have a number of us supporting you to challenge that! PSMA, gallium, choline 68, FACBC - more sensitive tracers are coming along all the time.

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

User
Posted 01 Aug 2019 at 20:00

Dave

Blood taken at same place , so machine should not be an issue. I  did have some fluctuations both after surgery and RT but if you did s graph it would be an upward trend. Not sure when I should start worrying but it won't be until October. What would worrying achieve. 

 

Lyn

Good job are looking after all of us. I should have had my blood test around 19th May but delayed it until 29th of May to coincide with a Pre op appointment, I then had my telephone review with the onco nurse on 5th June. The rise in May June was very small so we decided to stretch the tests to Four months. I have seen on here where some hospitals wait until 5, 10 or greater before any action is taken, the onco nurse said at our hospital all patients are accessed individually. She did say some London and Liverpool hospitals are not taking out of area scans because of increased demands.

Thanks Chris

 

 

 

User
Posted 01 Aug 2019 at 20:49

It's usually me that posts 'some oncos wait until 5, 10 or even higher' 😂 However, that is for men who will have no other option but long term HT and possibly chemo. I think it is worth a detailed scan as early as possible after October just in case there is an isolated met that can be zapped unilaterally. That's what Mr B intends to do when John gets to 0.2

Edited by member 01 Aug 2019 at 20:50  | Reason: Not specified

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

User
Posted 01 Aug 2019 at 22:49

Lyn

Thanks for the advice I will be pushing for a scan but I am aware of the failures we have seen on here.  How confident can you, John , me and the oncos be that mets will be found at such a low level. I don't think we have the best scanning techniques in our area, but I do have medical insurance.

Thanks Chris.

 

User
Posted 02 Aug 2019 at 01:10
John just ignores it all. Drives me mad sometimes. We were having a conversation today because a dear friend of ours has been diagnosed; the nurse had said to him "if you have surgery first, you can still have RT later if needed." I said something like "that's flawed thinking; if you need salvage treatment, your chance of remission drops significantly."

John sat quietly for a minute or two and then said "so where does that leave me?" ... I don't know where he goes when we are at appointments but he ain't in the room :-/

There is always the exception - Ulsterman's met was spotted at something like 0.03!

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

User
Posted 02 Aug 2019 at 07:21
Does seem quite strange deep down that I’m not being offered another PET scan even though we have one in the car park at Southampton now. My psa must be roughly 200. I think it’s because deep down he knows I’m not keen on treatment anyway. We are sticking to six monthly bone and CT only. Not even been offered full body MRI which I hear are good. My kidneys have taken quite a knock blamed on the contrasts and PET injections. Part of me likes it this way ( got the whole summer to enjoy ) but the other half realises I could just get very ill very quickly which is worrying me.
User
Posted 03 Oct 2019 at 17:03

Hi

Got my latest result yesterday, down from 0.22 to 0.19. next test in 4 months.

Thanks Chris

 

User
Posted 03 Oct 2019 at 19:17
Excellent result Chris.

Pleased for you, a victory, however small, is still a VICTORY!

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 03 Oct 2019 at 19:41
Going in the right direction, Chris x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Oct 2019 at 20:15
Sorry Chris I didn’t realise your PSA had risen from 0.11. But I’m glad to see it’s dropped a bit on the last test. I’ve recently started to feel a bit worried (I know not like me) about my next test but it’s not until December.

I think Si’s funeral yesterday also got me thinking a bit. Sorry we didn’t get chance to chat

Bri

User
Posted 11 Feb 2020 at 15:58

Just got a text from my GP PSA O.33.

Wonder if she understands the significance. Have telecon with onco nurse tomorrow. 

Thanks Chris

User
Posted 11 Feb 2020 at 16:06
Well it’s wandering around a bit Chris isn’t it ? But still relatively stable yeh. Easy to say don’t worry. Keep us informed ok
User
Posted 11 Feb 2020 at 16:21

Sorry it has risen a bit Chris. Let us know how you get on with the oncology nurse.

Ido4

User
Posted 11 Feb 2020 at 17:10
Positive vibes being sent your way
 
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