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User
Posted 05 Jun 2019 at 17:19
😎😎👍👍

Well done!

User
Posted 05 Jun 2019 at 17:30

That’s good news.

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

 

Ido4

User
Posted 05 Jun 2019 at 17:54
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 18:44
Glad to hear the good PSA news Chris and hope your other issues are still improving.

Cheers Bill

User
Posted 01 Aug 2019 at 17:09

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 17:11  | Reason: Spelling

User
Posted 01 Aug 2019 at 17:55
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

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 01 Aug 2019 at 18:05
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 19:00

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 19:49

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 19:50  | Reason: Not specified

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

User
Posted 01 Aug 2019 at 21:49

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 00:10
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 06:21
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.

If life gives you lemons , then make lemonade

User
Posted 03 Oct 2019 at 16:03

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 18:17
Excellent result Chris.

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

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 03 Oct 2019 at 18:41
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 19:15
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

If life gives you lemons , then make lemonade

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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