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Advice and Opinions needed please

User
Posted 16 December 2016 16:15:31(UTC)
Hello everyone

I need your opinions on recent PSA scores for my OH please.

In brief to save you looking up my history:

Diagnosed November 2011
PSA 3.6
Age 62
T3b N1 M0
Radiotherapy 37 sessions IMRT
Hormone Theapy Prostap 3.5 years ( finished summer 2015)
STAMPEDE TRIAL Abiraterone and Prednisolone for 2 years summer 2012-2014

PSA since February 2012 to July 2016 0.01

Checked 3 monthly always 0.01
September 2016 0.02
December 2016 0.04

I realize these are small numbers but you will all understand the constant stress we all live under awaiting these checks. We have the bloods done 3 monthly and see the Oncologist annually.

Any advice and opinions would be appreciated.

Thank you and best wishes to all

Alison
User
Posted 16 December 2016 19:56:47(UTC)
a a I I .

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


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User
Posted 17 December 2016 18:33:21(UTC)

Lyn,

Loved your first post, it confirms that we welcome all members, even Martians. Second post made more sense though.

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
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User
Posted 16 December 2016 19:56:17(UTC)

Alison

Now HT has ended testosterone is expected to increase which will produce PSA either from PCa or recovered healthy cells in prostate. My profile shows PSA increase after HT ended.

Ray

User
Posted 16 December 2016 19:56:47(UTC)
a a I I .

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


Thanked 1 time
User
Posted 16 December 2016 20:28:37(UTC)
Thanks Ray I have had a look at your profile. As you say the key question is PSA from healthy cells or PCa. I suppose only time will tell.

Lyn I'm sorry I do not understand?

User
Posted 16 December 2016 20:30:46(UTC)

That's weird - what I actually typed was this ....

Hi, on the basis that he still has a prostate these numbers are bloody fantastic - I would be getting the champagne out!

As Ray says, healthy prostate cells will be regenerating and these give off small amounts of PSA. Someone will correct me but I have in my head that for an irradiated prostate anything up to 2.0 is considered fine?

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


User
Posted 16 December 2016 20:35:57(UTC)
Thanks Lyn, I was hoping that you would say something like that!

I think that after having readings of 0.01 for over 4 years to then get 0.02 then 0.04 is a shock and has frightened us.

Like everyone on here we are under the shadow of this disease every day and especially around 3 monthly test time.

We find it difficult to enjoy the moment as we are dreading what might happen in the future yet pretending to young children that all is okay!

Wishing you and your John all the best

Alison x

Ps Yes Lyn you are right about the value of 2 as the trigger for treatment. In our minds though at diagnosis PSA was only 3.6 so we are afraid that by the time it reaches 2 it will already be quite significant.
User
Posted 16 December 2016 22:51:28(UTC)

Hmmmm - 'trigger for treatment' and 'normal' are different things. I am on a train journey from hell so cannot search properly but if the trigger for further treatment is 2 that is the point at which an onco is saying 'this treatment failed and there is no other curative option'? I thought that point was higher for a man with intact gland.

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


User
Posted 16 December 2016 22:57:43(UTC)

Yes but your 0.1s were all under the influence of HT and testosterone starvation ... so it was a false low. Now you are jigging towards whatever is his real PSA post treatment - it would have been unrealistic to expect it to stay down there.

It's like taking your temperature with an ice cube in your mouth because your mum says you can't go out to play with a fever. As soon as the ice cube melts, your temp rises.

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


User
Posted 16 December 2016 23:42:59(UTC)
Hi Lyn

I know you are having a very difficult time and I appreciate you responding to me. Thank you.

I think that the Onco would be concerned if PSA reached 2.0 and would then advise further treatment options.

In terms of ' cure ' I don't know. But I will ask at next appointment.

My OH is 18 months post HT finishing. Would it take this long for the testosterone to kick back in ( ref the ice cube analogy)? I suppose again different men respond in different ways. My OH has certainly not gotten back to former strength and picks up every bug going at the moment.

Take care

Alison


User
Posted 17 December 2016 09:22:05(UTC)

Alison

My PSA was low at 6 so my cut off point of 2 also seemed high. The comments given to me were at that level it's acknowledged you're out of remission so we talk about whether treatment starts then or wait.

As regards 'cure', to this day it's never been said to me. But I do get "you're doing exceptionally well". Better than nothing -:) I don't think they're being pessimistic just some onco's never use the word. At time of RT the onco's first words were " we're not talking cure here"

I was 0.3 after 18 months of HT ending so your level reads pretty good.

As regards energy and just feeling OK. It took about 9 months before I began feeling better then a long haul to get any kind of fitness. To this day no matter how healthy and fit I am I still get anything going. Just caught a cold for Xmas again !!! - marvellous.

Dealing with the uncertainty is difficult. Sorry no magic answers for that. I just muddle through life and deal with whatever comes when it does - that's how I was pre PCa so guess I'm back to normal in that respect

Ray

User
Posted 17 December 2016 09:33:56(UTC)

Forgot to mention testosterone recovery time
The answer I got was because you have been on HT for so long (46 months) we don't know and you may not fully return to your past level" One of those see how you go.

Ray

User
Posted 17 December 2016 18:33:21(UTC)

Lyn,

Loved your first post, it confirms that we welcome all members, even Martians. Second post made more sense though.

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
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