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Chris J's Journey

User
Posted 11 Oct 2016 at 13:42
Hi Chris how soon can you get a scan? Jx
User
Posted 11 Oct 2016 at 13:47

We waiting for PSA to reach 3 to 5 to make sure we can see the suckers wherever they are grrrr

User
Posted 11 Oct 2016 at 19:10
Chris

I completely forgot about the possibilty of a "flare" rise when coming off Bicalutamide, I had always been led to beieve it was common when first going onto it but had not thought about it happening when you come off it . Do ask about that when you see the Onco. If it is a viable reason then maybe the next test will reflect that? I am almost certain it is as you say, they will not want you to have that scan until your PSA indicates that any mets will actually be identifiable and located.

all my very best wishes for your Onco session

xx

Mo

User
Posted 11 Oct 2016 at 21:24

Originally Posted by: Online Community Member

Update only.
Six weeks off the Bicalutamide HT and PSA up from 0.13 to 0.45.
So the doubling time is 2.4 weeks.
So wherever my Mets are , they're not happy bunnies at all. Could just be a mini flare up , but to be honest the sooner I have the scan the better in my opinion.

 

You are not thinking clearly my friend - the rise from 0.13 to 0.45 is perfectly normal, it would be weird if the score didn't rise after the HT is stopped. The hormones have held the PSA falsely low - you are now going back to a more normal level because the cells are no longer being starved. 

Obviously 0.45 is high for a man with no prostate but you can't calculate your doubling time from these two numbers, my friend ... it simply doesn't work like that. 

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

User
Posted 11 Oct 2016 at 21:30

That's quite patronising Lyn.

User
Posted 11 Oct 2016 at 23:16

Not intended to be, just on a train x

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

User
Posted 11 Oct 2016 at 23:38

Hi Chris,

I know how worrying it is when PSA starts to rise, as you say '...We waiting for PSA to reach 3 to 5 to make sure we can see the suckers wherever they are grrrr...'

Thing is when I was in that position back in 2013, my PSa rose 2 to 4, in 6 months and 4 to 6 in two months, at which point I had an appointment with the Consultant's assistant, I think they call them 'housemen'.  The scheme they had in place at my hospital was that patients got to alternate, seeing the main consultant at one appointment, and his assistant at the next one.  So I was only seeing the main man once a year.  Anyway with PSA at 6 and rising rapidly the assistant 'houseman' suggested I go back on HT and I had no qualms about that.

He was also telling me at that time that because I had already had one bout of radiotherapy, there were no treatment options other than HT.  So logically there was no point in further scans, because they were not going to do anything other than HT whatever the scans might show.

Later, having done a little research myself, and identified options such as cyberknife, and having sent them a polite and detailed letter, I ended up getting referred to another hospital for salvage HDR brachytherapy.  

Then I had to have scans, indeed I had the full set of MRI/CT and Bone scans twice, not because they were so much looking for PCa, but because they were double checking that I was otherwise healthy and not about to die from something else.

They picked up interesting facts like I have arthritis, I had cysts on my kidneys, two different types of cysts on my thyroid gland etc, but none of the scans were of any use for finding the PCa as my prostate and surroundings were likened to a bombsite, they had to do template biopsies to find the actual cancer.

In the middle of all this, I actually got my 6 monthly appointment with my Consultant, he is a nice guy, I have every faith in him, but he has that habit I guess a lot of doctor's have, of looking at his notes and bringing himself up to date while you are sitting next to him.  He read through my notes, and sort of asked me 'you went back on HT when your PSA got to 6?'  When I replied yes, he said sort of talking to himself that he might have been inclined to let it go higher, he didn't say how high and I didn't ask.  

I wish I had taken that conversation further because he was implying that when the PSA starts to rise there is some minimum threshold it needs to cross, before there is any chance of seeing a tumour on a scan, and presumably in my case with an irradiated prostate that was higher than 6?

Right at this moment I am feeling very uneasy, on paper I am doing very well, my last PSA was a mere 0.2, but I can sort of sense, a gut feeling, (I almost said a feeling in my bones!) that it is on the rise, quite how high it will be prudent to let it rise to before going back on HT is something about which I am far from clear.

I suppose it is a sort of bare knuckle ride, because the higher you let PSA go without treatment, the more chances of further spread, but as you say you need it high enough to see the suckers?

I don't know if any of this helps?  But best of luck.  

:)

Dave 

Edited by member 11 Oct 2016 at 23:41  | Reason: Not specified

User
Posted 24 Nov 2016 at 10:29

Hi folks
17 months post op and 1 year of HT.
PSA rise from 0.13 to 0.45 after 6 weeks off HT.
Today's result 12 weeks off HT is 0.91. So a doubling in six weeks which is similar to pre op. Based on this CholinePET will be mid to end Feb but remaining on 6 weekly testing
Chris

User
Posted 24 Nov 2016 at 14:03

Don't know what to say Chris. I don't have the knowledge to comment.

Just to let you know I've seen the post and feel for you as I know this is going to worry you.

Hopefully somebody will come along to reassure you

Best Wishes

Sandra

********

We can't control the winds - but we can adjust our sails
User
Posted 24 Nov 2016 at 14:54

Hi Chris.

Sad to read your latest update. Perhaps this is not much comfort but it could be PSA will rise to pre HT (2.4) at the same rate as now and then stay there or at least slow down somewhat. Hopefully a future PET will pick up just a single cluster that can be easily got rid of.

Good luck

Ray

User
Posted 24 Nov 2016 at 18:00
CJ

Sorry to hear your news ,I know how it feels to get PSA rises. I am attending a weekly class at a Maggie's centre, as the Urology nurse said we are coming up with new treatments all the time and we never know what tomorrow with bring.

Take care.

Thanks Chris

User
Posted 24 Nov 2016 at 18:21
Hi Chris

Sorry to hear about your latest battle. Hopefully something can be picked up in next scan and dealt with.

Sandy

User
Posted 24 Nov 2016 at 18:52
Horrid, grumbling persistent disease! Very sorry to read your update.

Henry

User
Posted 24 Nov 2016 at 19:36

Hi Chris

I'm a newbie on here but I have read a lot of your posts and you are a frequent contributor on so many issues. I'm sorry to hear about the latest results, but I'm sure you will remain positive.

Good luck

Chris

User
Posted 24 Nov 2016 at 20:52
Hi Chris,

This bl##dy disease, I loathe it with a passion. I'm sorry you are having it tough.

Thoughts are with you.

Leila

User
Posted 24 Nov 2016 at 21:07

I looked at your post and felt pleased that something is happening - this is exactly why you stopped treatment, to let the cancer grow a little so that the specialist can find it on a scan and hopefully convince you that targeted treatment is worthwhile (or not)

I am always the odd one out - sorry love - but just relieved that you are not going to be in the no-man's land for too long. The sooner you can have that scan the better, in my opinion xxx.

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

User
Posted 24 Nov 2016 at 21:54
Hi Chris,

I am not going to offer advice or platitudes just a helping hand through the tough times.

Keep your chin up.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Nov 2016 at 22:21

100% agree !
I don't think I said anywhere in my post that I was feeling sorry for myself. I'm glad it's moved on , and the sooner the scan the better in my opinion. The waiting sucks. My biggest problem is what to do about the results , but I can worry about that when I get there. Thing is , if the word cure isn't used anywhere , then I'm still fully against RT just for the sake of it.
I'm just glad it seems Xmas will be clear , and so I can eat and drink and try to be merry. But to be fair I think I've truly forgotten how to be happy and enjoy myself :-(

User
Posted 25 Nov 2016 at 10:15
Chris,

Only just read your update... hope scan goes OK and good luck with whatever you decide on the next part of your journey.

Keep Right On...

KRO..

User
Posted 25 Nov 2016 at 11:07

Hi Chris. Just caught up with your update. Sorry to hear the road is still bumpy but keep on with the positive attitude - it can't hurt and some people believe it can seriously help. You're an inspiration with your candour and understanding of others, and you deserve the ball to bounce your way. I'm sure it will. 

 
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