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How long does SRT take to work? - salvage radiotherapy

User
Posted 12 Feb 2017 at 12:34

Hi Lyn

About the less than sign. Good point and I have emailed the guy who may know, but he was out on Friday. 0.1 is as low as the normal test goes, so actually I think they should do a high sensitivity test too. Maybe they will.

What I do know is that in September they first of all did the basic test, which came back as 0.1 (no less than sign), followed by the sensitive test, which read 0.04. So the normal test SHOULD have had a less than sign. Maybe it was missing, or the 0.1 just means the lowest reading they can get on the basic test. In September, in reality the PSA was indeed less than 0.1, and it's possible it is now.

Either way, probably by the time I started the RT, (and possibly even during it too?) the PSA COULD have got to 0.2/0.3...and now it is 0.1.....or less, which I guess is hopeful....as it's only 9 weeks since RT ended.

 

Cheers

 

David

User
Posted 12 Feb 2017 at 12:55

Have you not read my latest post on my own thread? The ultra sensitive test is now apparently being discredited - our hospital trust (which is one of the centres of excellence for cancer) has stopped all ultrasensitive PSA testing for the region.

I think your post is a bit muddled about your scores. If you had gone from 0.04 to 0.2 or 0.3 that quickly you would be in deep doo-dah. I take it you are only guessing it might have done that and no-one has actually told you that was the case?

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

User
Posted 12 Feb 2017 at 13:03

Lyn

 

It was <0.02 in July, but was 0.04 in September, and 0.1 in October. It may in fact have been less that 0.1 as that was the basic test so there is uncertainty there! I indeed have NO evidence it went higher. Then RT a month later. Now it reads 0.1

That seemed fast but when diagnosed in Jan last year it was 13.55, and 3 months later was still only 13.8, so it was hardly doubling quickly!!

 

I'll check out your post.

 

David

User
Posted 12 Feb 2017 at 14:02

Lyn, Interesting about the sensitive tests. In that case, I have not yet had a recurrence, but have had RT. But I think it was clear something was going on, so best I got it done.

Sounds like 9 weeks post RT is too soon to get a drop showing, is that what I'm inferring? I must say, others on here have been told to wait 6 months before a first test post RT...one or two PC UK nurses also thought it was a bit early...

Thanks

david

User
Posted 12 Feb 2017 at 18:48

Also, if cells can take upto 18 months to die, can they still be active, producing psa, multiplying and spreading further afield during that time? Or maybe it doesn't matter because they will die anyway?
Thanks!

David

User
Posted 12 Feb 2017 at 19:20
Originally Posted by: Online Community Member

Lyn, Interesting about the sensitive tests. In that case, I have not yet had a recurrence, but have had RT. But I think it was clear something was going on, so best I got it done.

Sounds like 9 weeks post RT is too soon to get a drop showing, is that what I'm inferring? I must say, others on here have been told to wait 6 months before a first test post RT...one or two PC UK nurses also thought it was a bit early...

Thanks

david

I agree with you. My oncologist recommended follow up RT when my PSA reached 0.087. Obviously she had the histology following the RP. According to google and this site I had not had a recuurance but I certainly was not going to go against her advice

Bri

User
Posted 01 Jun 2017 at 15:57
Well 2 months after set it was 0.1 down from around 0.2 or 0.3. Ten days later it was 0.03. Great

Now three months later it's 0.05

Am I doomed or can itfl fluctuate a bit?

User
Posted 01 Jun 2017 at 15:59
I meant after srt, not set!
User
Posted 01 Jun 2017 at 16:54

It will fluctuate which is why many oncos discourage men from having any PSA tests until 3 or 6 months after RT - plus as you know from my comments above, more and more hospitals are now discarding the ultrasensitive test due to unreliability.

It does seem you are having an awful lot of tests which is only going to increase your anxiety perhaps?

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

User
Posted 02 Jun 2017 at 04:40
Thanks Lyn. Well this result was taken three months after the last one, which I think is a normal gap?

I'm just worried that the excellent drop to 0.03 has now been followed 3 months later by this 0.05. I can't help feeling that it should have gone down, if cells are still dying, rather than up. Why should it fluctuate up, if the RT is still working? I can't help feeling there's a bit it missed. But maybe I'm still in shock, and this test is too sensitive, as you have implied.

David

User
Posted 02 Jun 2017 at 16:26

Hi Lyn,
Any thoughts on my last post?
Thanks

User
Posted 02 Jun 2017 at 19:43

Yes I think you are going to continue torturing yourself whatever any of us say. You were advised to have nerve sparing on only one side but you went against that advice and chose a surgeon who saved both sides. In the event, it seems the previous specialists may have been correct and I imagine that your oncologist took that into consideration when designing your RT, to ensure that the nerve bundles at that side were well and truly zapped. That being the case, you are trying to read something into tiny fluctuations in a PSA level which is similar to an average woman that has just had an orgasm. There is a possibility that you have had unnecessary salvage treatment based on a flawed test but you will never know for sure.

I can say the same things that I have said before but I don't think it will help you if you have decided to see the worst possible interpretation:
- scientists have shown that if you put the same blood sample in the same machine twice, the result can vary by as much as 0.04
- the testing equipment is calibrated at least every 6 months which can affect results and therefore how you interpret PSA trends
- a variation of 2 hundredths is tiny and could simply be down to a bit more adrenaline (perhaps due to anxiety?) at the most recent test
- sometimes dying cancer cells produce extra PSA which is why the PSA test at 18 months post RT is considered to be the important one

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

User
Posted 02 Jun 2017 at 20:33
Thank you Lyn. That's very clear and detailed. Why don't the specialist nurses have this knowledge?! Though they are very good.

Yes. I may well continue to torture myself as I've had both curative treatments quite quickly.

Actually my surgeon was able to check both nerve bundles had clear margins before the decision was made. Sometimes his patients lose one or both, depending on what he finds during live histology.

But thank you Lyn very much. I hope I have not had micro spread. And your words will help me get through the next three months....a bit!

Thank you

User
Posted 05 Jun 2017 at 06:24

On holiday in Malta for a few days, nice but of course but guess what is in my head all the time!
Maybe hypnosis would help....

I know the official line of undetectable is 0.1 but of course the point of the sensitive test is to detect anything actually present below that. Actually my RT consultant said that, unlike surgery, RT usually does not take psa down to their lowest possible reading - <0.02. And he said they don't know why that is the case, but it may just settle somewhere a bit higher than that....0.0 something.....?

User
Posted 27 Feb 2018 at 10:00

Well, Ive been away from here for a while to try to lead a normal life!

Since my SRT ended in Dec 2016 my PSA, at 3 monthly intervals has been: 0.3, 0.5, 0.3, 0.5 (Dec 2017), and today it's 0.11 using the basic test. A year ago the basic test read 0.1, then the sensitive test actually read 0.03! I am hoping, therefore, that it may not be really on the rise. Too much to hope? RT ended 14 months ago. I know 18 months is the sort of deadline; maybe the cells are still dying and giving out more PSA as Lyn said can happen. Maybe I'm on my way to HT in the future. Just can't tell, I guess.

Been feeling pretty good about it all....until today.

Cheers

David

User
Posted 27 Feb 2018 at 10:24

Unless you have made a mistake typing in the results, it seems that you are now detectable and will need to decide with your onco at what point you start hormones again. Some onco say to wait until it gets to 5 or 10 - Bri’s onco likes to wait until it gets to 20 and my dad has decided to wait until at least 10 and then think again at that point.

Not what you were hoping for but the fact that it goes up and down suggests it isn’t particularly aggressive.

Just check that you haven’t missed a 0 out of each result though.

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

User
Posted 27 Feb 2018 at 10:34

Blimey Lyn what a twit I am!

Correct: I should have written 0.03, 0.05, 0.03, 0.05 and today 0.11 over the last 14 months since RT ended

I've not been on HT at all. It was RP May 2016, then SRT Dec 2016

Thanks, David

User
Posted 27 Feb 2018 at 11:04

Hi following salvage therapy in AUG 16  my first two PSA test.  in JAN  17 and JULY 17 where undetectable <0.1. Then a rise in DEC  17 too  0.1 and feb 18 again 0.1 very disappointed I saw the urologist who said it looks like salvage therapy may not have  been successful. I have been advised that it may take many years before further treatment is required saying that a PSA of 20 would be the indicator for HT etc. Now advised to continue PSA tests every 3 months with the doubling time being an important factor to watch for. I have tried to defeat this beast and I am trying to stay positive for the future. When I see other men on this site bravely facing much worse diagnosis I still consider myself fortunate. I hope this post helps  Andrew

User
Posted 27 Feb 2018 at 11:18

Thank you Andrew for that helpful response.

Looks like your 'undetectable' was done using the basic test ie <0.1 rather than the Sensitive test that can show <0.02 ? Yes, it's all a waiting game. Obviously 0.11 is relatively a very low reading as such, and not a danger; it all depends on the speed it grows from now on...or just maybe drop again or stabilise.
When I was diagnosed 2 years ago psa was 13.55 3 months later it was only 13.8 which works out as a doubling time of about 6 years!! That would be fine. Clearly, that rate can change; the cells that survive RT must be the tough guys that can beat everything.....

 

The main concern is my age at 58. If I was 70+, I wouldn't be worrying so much; it has so long to get bad!!

But yes - there are many much worse off....

David

Edited by member 27 Feb 2018 at 11:22  | Reason: Not specified

User
Posted 27 Feb 2018 at 11:51

That makes more sense.

A PSA of 0.11 is detectable though so there is no point continuing with the ultra sensitive tests. John was 0.11 at one point last year and although it has dropped back to <0.1 we have accepted that SRT didn’t eradicate it completely and HT will be needed at some point in the future.

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

 
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