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Question about PSA rates

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User
Posted 11 Nov 2018 at 10:14

Hi all

I hve been turning a question over in my head and cannot figure out an answer.

My pre-op PSA was 4.9, 3.9 and 4.0 then 0.05 (they never specifically said < which was interesting) post op and then as you may know rose to 0.24 after 9 months thus SRT/HT.

I  have seen similar trends in others here and elsewhere.

Question: Why was my PSA stable pre-op but rose post op assuming there were already some cells elsewhere (hopefull localised)? Why did my PSA pre-op not rise rather than remain stable-ish? Why is the removal of the prostate a trigger for additional growth?

Stuck here...

Cheers

P

User
Posted 12 Nov 2018 at 14:45
I hate the fact that my psa is likely to be over 100 next January yet nothing can be found post removal. Sometimes I lie awake at 3 am and feel fit and strong and potent , then imagine the fu****ers multiplying somewhere waiting to kill me just when everything is good in my life. Not nice. Keeping busy and red wine helps.

If life gives you lemons , then make lemonade

User
Posted 13 Nov 2018 at 02:48
They are having good results trialling the Thorium 227 isotope as a tracer, better even than Gallium 68.

Did you read about that poor guy in India on here whose family chipped in to buy him a PSMA scan at around £500, but can’t afford ongoing HT, so he’s being physically castrated instead to save money?

God bless the NHS!

Cheers, John.

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User
Posted 11 Nov 2018 at 21:49
I guess most of the PSA you were producing was being generated by healthy prostate cells and this normal production was disguising any fluctuations from the cancerous cells?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Nov 2018 at 22:02
Cheers Lynn

Makes sense. Also suggests both tumours were very small to start which given the fact that my pathology only suggested 3% volume makes sense.

Got some interesting feedback from another forum that suggests that primary tumours suppress secondary ones until removed. Then the brakes are off.

https://www.ncbi.nlm.nih.gov/pubmed/29302774

What a complex flipping disease!

P

User
Posted 11 Nov 2018 at 23:29
Yes, I have read papers on that topic - the idea of the mothership is unproven but quite popular among lay people. Some research says the opposite, that removing the bulk of the tumour weakens the PCa cells that remain and significantly improves outcomes for T3 / T4 patients.

I like the mental image of your remaining tiny cluster of cells screaming in rage that it has lost its control centre; cancer cells can produce higher levels of PSA as they die.

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

User
Posted 12 Nov 2018 at 03:38
I wonder if that’s the case with me, now Tommy the Tumour has been consigned to a mountain of medical waste somewhere.

I am always slightly surprised when I get a <0.1 PSA result, and latterly <0.04, especially considering some lymph node involvement due to a seven year gap in PSA.....blah blah blah

We live in hope.

Cheers, John.

User
Posted 12 Nov 2018 at 12:33
Thanks Lyn - I too like the idea of the little sh*ts screaming as they burn like the bad guy at the end of a cheesy '90s action movie. I can see Ahnuld there with his flamethrower saying "metazdazize dat, muddafuddas!" :)

Bollinge - the waiting game is pretty naff. All we can do is keep our heads in the game and stay fit and positive. Hopefully with the HT beginning to wear off (I am beginning to smell my armpits - whoo hoo!) that will become easier.

User
Posted 12 Nov 2018 at 14:45
I hate the fact that my psa is likely to be over 100 next January yet nothing can be found post removal. Sometimes I lie awake at 3 am and feel fit and strong and potent , then imagine the fu****ers multiplying somewhere waiting to kill me just when everything is good in my life. Not nice. Keeping busy and red wine helps.

If life gives you lemons , then make lemonade

User
Posted 12 Nov 2018 at 19:55
Chris

I feel for you.

I know you have had scans but have you looked at all the newest isotope based imaging methods?

P

User
Posted 12 Nov 2018 at 20:06
Only Choline and Gallium 68 PET done so far. I hear there is new stuff. I’ll ask in January. Apparently gallium 68 PSMA can fail in up to 8% of people. Until then I’ll enjoy Xmas and wine and a stack of meat lol.

If life gives you lemons , then make lemonade

User
Posted 12 Nov 2018 at 20:08
Both my PET were at psa > 3 so should have lit anything up. So I’ll stay confident.

If life gives you lemons , then make lemonade

User
Posted 12 Nov 2018 at 21:35
Chris

Sod cancer, enjoy life. Perfect attitude :)

User
Posted 13 Nov 2018 at 02:48
They are having good results trialling the Thorium 227 isotope as a tracer, better even than Gallium 68.

Did you read about that poor guy in India on here whose family chipped in to buy him a PSMA scan at around £500, but can’t afford ongoing HT, so he’s being physically castrated instead to save money?

God bless the NHS!

Cheers, John.

User
Posted 13 Nov 2018 at 17:50
A couple of members on here have also been surgically castrated Bollinge, including one who has attended the Leicester meet up for many years. The side effects are irreversible but for a man who either doesn’t have a sustained response to HT or who can’t have the hormones for some reason, castration is a good option. It is also more common in some European countries than others.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Nov 2018 at 20:23

Originally Posted by: Online Community Member
A couple of members on here have also been surgically castrated Bollinge, including one who has attended the Leicester meet up for many years. The side effects are irreversible but for a man who either doesn’t have a sustained response to HT or who can’t have the hormones for some reason, castration is a good option. It is also more common in some European countries than others.

64 million dollar question but how long does that treatment work for

Bri 

Edited by member 13 Nov 2018 at 20:24  | Reason: Not specified

User
Posted 13 Nov 2018 at 20:58
Research suggests that it works for about as long as HT would and maybe a little longer but how can anyone guess how long HT would have worked for a particular patient? In some cases, it is a next option when HT has failed but the impact is quite short lived in those cases, I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Nov 2018 at 16:06
More information to add to the mix from YANANOW.

http://www.yananow.org/PSAexperiment.shtml

Terry reported a huge variation in PSA levels over a 30 day period whilst not on treatment. The implication is that small sample sizes over a short period of time have a lot of noise and one needs a longer period with more samples to get a reliable PSAdt.

 
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