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User

Posted 28 Apr 2024 at 17:37

You have had a tough time Chris. But you’re still here and that is really good to say the least.

You have had support and friendship on the forum as you say, but you’ve also been a great support to others.
Here’s to many more anniversaries.

Ido4

User

Posted 28 Apr 2024 at 20:31

Colwick Chris,

Best wishes to you. I read all of your posts with great interest. You are an inspiration.

Jed See.

User

Posted 30 May 2024 at 20:05

Thanks as always for your continued support.

Just an update, bloods done 22 May, came back as 1.4 that's up from 0.44 four months ago,I worked out the doubling time to be 2.4 months. GP sent email "Normal,no further action",my patient record says refer to urology if it reaches 1.0. I have lodged an official complaint.

I saw the oncologist this afternoon, he offered me another PSMA scan at a local facility rather than a 220 mile road trip to Oxford. I opted for the Oxford centre as they do the Gallium 68 tracer as opposed to the F18 1007 tracer used locally.

Depending on the outcome of the scan we may do some more SABR treatment. He knows I don't want long term HT but has said we won't go into that minefield until it is the only option. I have said to him "don't want" isn't "won't have" 🙂, I have a proven track record for changing my mind.

So a bit more waiting.

Thanks Chris

User

Posted 30 May 2024 at 20:18

Fingers crossed for you Chris. Hope the plan goes in your favour.

Good luck.

Kev.

User

Posted 30 May 2024 at 20:42

Wise men change their mind.

Good that you're going for another PSMA, in case there were any spot it could be easier to target and eliminate, but I hope there won't be any.

Good luck, Chris.

User

Posted 30 May 2024 at 21:05

Originally Posted by: Online Community Member

Wise men change their mind.
Good that you're going for another PSMA, in case there were any spot it could be easier to target and eliminate, but I hope there won't be any.
Good luck, Chris.

Hi Lola, thanks for your thoughts. He did say we may not see anything. He also said I was assuming they would find another tumor in a lymph node. He then said there is no doubt you have cancer somewhere.

Thanks Chris

Edited by member 30 May 2024 at 21:12 | Reason: Not specified

User

Posted 31 May 2024 at 08:05

Originally Posted by: Online Community Member

GP sent email "Normal, no further action",my patient record says refer to urology if it reaches 1.0. I have lodged an official complaint.

It's really not good enough. It's exasperating having to check that your treatment plan is being followed correctly.

Best of luck with your next scan Chris, and resultant procedures.

User

Posted 31 May 2024 at 21:06

Sorry to hear this, Chris.

Take good care of yourself. You give a lot of support to others on this forum. Many of us will be here to support you in turn.

Best wishes,

JedSee.

User

Posted 01 Jun 2024 at 09:01

Hi Chris, sorry about the increase, fingers crossed whatever they may find will be an easy fix. Re hormrone treatment, its not always the beast that some say, I have been on abiraterone for 8.5 years, zoladex 9 years, minimal side effects that bother me. Enjoy today and every day.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 01 Jun 2024 at 09:01

Hi Chris, sorry about the increase, fingers crossed whatever they may find will be an easy fix. Re hormone treatment, its not always the beast that some say, I have been on abiraterone for 8.5 years, zoladex 9 years, minimal side effects that bother me. Enjoy today and every day.

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 01 Jun 2024 at 20:33

Sorry to hear about the rise Chris. So frustrating re the GP. Hopefully the next scan will detect the rogue cells.

Chris what’s the difference with the two tracers

Take care

Bri

User

Posted 01 Jun 2024 at 22:43

Originally Posted by: Online Community Member

Sorry to hear about the rise Chris. So frustrating re the GP. Hopefully the next scan will detect the rogue cells.

Chris what’s the difference with the two tracers

Take care
Bri

I have now got an official complaint going with the GP surgery, I was told to put my complaint in an email to the practice manager, on a follow up call I asked for an appointment with the practice manager, the reply was "we don't have one at the moment" .

As regards the difference in the scans I don't really know, I opted for the Gallium for a few reasons. The F18 appointment locally was cancelled due to the tracer production problem. At Oxford they said it was very rare for their G68 tracer to fail.

The F18 only saw one tumor but the G68 picked up the second tumor 10 months later and still saw activity in the first tumor. So my thought was either the G68 was better or this cancer is not as slow growing as we think.

If you go to page 10 of this conversation and scroll down a few posts there were a few contributions to the difference between the tracers

I hope your SABR has worked well for you.

Thanks Chris

User

Posted 02 Jun 2024 at 09:08

Sorry to hear about your increased PSA Chris, I hope you can find out why and get it resolved. It’s really bad that your GP behaved in this way, I’ve found you’ve got to be so proactive on this journey to ensure you get the best level of care.

With regard to long term HT some men seem to manage on it without any issues whilst some(like me😩) seem to get every side effect going, so I hope if it is required for you that you are one of the lucky ones.

Good luck!

Dereh

User

Posted 02 Jun 2024 at 20:26

Hi Chris,

Your G.P. Practice Manager needs a serious talking to. "No appointments available"?? That's appalling.

Stay strong.

Best wishes,

JedSee.

User

Posted 02 Jun 2024 at 21:55

Originally Posted by: Online Community Member

Hi Chris,

Your G.P. Practice Manager needs a serious talking to. "No appointments available"?? That's appalling.

Stay strong.

Best wishes,

JedSee.

Sorry, I wasn't very clear she meant ,we don't have a practice manager at the moment ☹️.

Thanks Chris

User

Posted 03 Jun 2024 at 20:50

Thanks Chris, for the clarification re: the Practice Manager's lack of availability.

I was getting on my hobby horse...:-).

Take care of yourself.

JedSee.

User

Posted 04 Jun 2024 at 16:41

Hi Chris,

Your oncologist sounds a good one. To persevere with PSMA scans, having options on which type and then talking about SABR treatment sounds like they're fighting for you

It's always good to hear and such information is useful if pressing for treatment for others. All the best Peter

User

Posted 04 Jun 2024 at 22:30

Originally Posted by: Online Community Member

Hi Chris,

Your oncologist sounds a good one. To persevere with PSMA scans, having options on which type and then talking about SABR treatment sounds like they're fighting for you

It's always good to hear and such information is useful if pressing for treatment for others. All the best Peter

Thanks Peter, my wife has family health insurance so we did switch to the private sector. It is unfair but you do get more options if you have insurance or can afford to pay.

Thanks Chris

User

Posted 06 Jun 2024 at 23:29

Sorry to hear it's gone up again, the rise seems like bit of a sea change too. Is there any chance it's PSA released by dying cells after the RT??

PSMA scan is a no brainer IMHO..

User

Posted 06 Jun 2024 at 23:45

Franci, I did ask that question but he said not likely. He said he expects further spread. PSMA booked for 23rd of June, I could have had it done next week, how different things are when you or your private insurance pays for it. Going kite flying next week so something to distract the mind,not that I worry about it.

Thanks Chris

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