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How long does SRT take to work? - salvage radiotherapy

User
Posted 10 Feb 2017 at 21:25
Hi folks





Post surgery where PSA dropped to <0.02, it went up to 0.1 so SRT was on.It was possibly higher than that by the time RT started, maybe even 0.2. I am now just under 9 weeks since the 20 sessions finished. PSA came back today at 0.1. I don't see the consultant till Monday week. Ive heard RT can take a while to give the full effect. Can the PSA still drop further, and over what sort of time scale,or am I stuck with some cells that were missed?





Thanks

Edited by member 13 Feb 2017 at 19:37  | Reason: Not specified

User
Posted 11 Feb 2017 at 11:36

Hi both read my profile.

Post RP PSA was 0.06 in March 2013 By July 13 this had risen to 0.087. So I had 20 sessions of RT Aug/Sept 13. My oncologist wouldn't test the PSA for 6 months. So in March 14 it was about 0.047 (can't remember exactly).
Anyway to cut a long story short at each 6 month test it dropped a bit further until in March 16 it had reached 0.01. In Nov 16 it was 0.02 but that is probably i blip (will know more in March)

So yes it can take a while to drop. In my case 2.5 years

Bri

User
Posted 11 Feb 2017 at 14:17

The expectation is that you will reach your nadir (lowest reading) around 18 months after RT, regardless of whether it was salvage, adjuvant or radical treatment. If you are on HT, it is a rather different matter.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Feb 2017 at 10:12

Hi David my PSA was very similar to your reading prior to ST 0.2  which I completed  in Aug 16 . I was advised to have my PSA just prior to my first Consultant review this week nearly 6 months to the date my PSA is now 0.1 so like you will have to wait a few more months to see how its going. Someone advised me that it can take up to 18 months for the levels to adjust to give an accurate reading.  Good Luck


 

User
Posted 11 Feb 2017 at 14:23
I had 20 sessions of salvage RT in January 2016 when my PSA was 0.13 - over the past 12 months it has fallen to 0.06, 0.03 and latest result two weeks ago was less than 0.02 so undetectable.

Hope this helps reassure you that it takes a bit of time.
User
Posted 11 Feb 2017 at 18:18

Gosh I can't believe how helpful that has been- thanks guys!

All the time waiting for the 'likely' result but no 'guarantee' that the RT would be successful (maybe not for ever but at least a while!), I have been going mad with worry that it wouldn't be lower than the 0.1 /0.2 at start of treatment. Then it came back as 0.1 I'm thinking is that from stuff in the prostate bed....or much worse is it because of something OUTSIDE the bed....and therefore hormones and all that hell beckoning rapidly.

OK, I know it could still be bad, but you have helped me a lot for now!

David

User
Posted 11 Feb 2017 at 18:35
Thanks for this thread David.
I was sure that I had read that it could take 18 months or so to reach a nadir and so I didn't bother phoning for my last PSA result. I finished 33 sessions of SRT in June 2016 and I have a meeting with the onco in March following another PSA test a few days before. PSA at start of SRT was 0.5 and the first PSA following was 0.6 but being told about the 18 months took away the apprehension. The responses to your thread have confirmed that it's not worth worrying at the moment.
Thanks everyone 👍

Kevan
User
Posted 12 Feb 2017 at 11:55
Originally Posted by: Online Community Member
Hi, does it take 18 months to reach your lowest PSA after radiotherapy, not just salvage radiotherapy. 4 months after my OH finished radiotherapy the PSA is 1.3 , he is also on prostrap.

Sheila


Hi Sheila, slightly different when the man is on hormones as the HT keeps the PSA low. But the RT will continue to work to damage the cancerous cells for up to 18 months.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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 17:03

Originally Posted by: Online Community Member


Thanks Chris. Let us know about tomorrow.


So Lyn...John's went up to 0.1 then dropped below again? That's hopeful, surely? I know mine wavered between 0.03 and 0.05 for a year so why indeed shouldnt it drop from 0.1, as indeed John's did.



 


John's was rising on the ultrasensitive test before the hospital stopped offering it. It then went to 0.1, <0.1 0.11 and then has been <0.1 for a couple so it could be sitting at 0.08 or 0.099999 - it doesn't really matter. It went over 0.1 which is too high to be explained by adrenal activity or cycling or sex in a man with no prostate. He won't want to go on HT unless he is forced so we will keep on having the tests and see how long it is before it starts to rise properly, knowing that it might be years before he has to do anything about it. 


The science says ultra-sensitive testing is unreliable at readings below 0.1 - a reading of 0.11 is therefore considered reliable because it is beyond the point of being detectable. 


Ulsterman, the 20 sessions at higher dose was a trial being run at specific hospitals so perhaps your onco wasn't involved. She should be aware of the trail though as the findings so far are that fit men can take a dose of up to 3.2Gy without major problems, it is more effective that 37 fractions at 2Gy and has less side effects. John's was targeted at the prostate bed and bladder but not the higher lymph nodes.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Feb 2018 at 18:58

David it is too soon after RT to panic - yes your cells are still dying and you may have to wait another few months before you hit your nadir. John is nearly 6 years past SRT so it is rather different.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Mar 2018 at 13:10

Don't be devastated - look at my profile for John's results. He has gone up to 0.11 and then back to 0.1 and the last 2 results were <0.1 and we are a bit nervous but not devastated - the onco thinks that he may just settle there and bob around without ever having any more treatment, or it may rise again and at some point there will be a need for long term HT but since it is still hovering at 5.5 years post SRT if there is some cancer still lurking it certainly doesn't seem to be very active.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Show Most Thanked Posts
User
Posted 11 Feb 2017 at 09:31

Thought I'd lost this thread but re-found it! Anyway, any knowledge most welcome, thanks!


David

User
Posted 11 Feb 2017 at 10:12

Hi David my PSA was very similar to your reading prior to ST 0.2  which I completed  in Aug 16 . I was advised to have my PSA just prior to my first Consultant review this week nearly 6 months to the date my PSA is now 0.1 so like you will have to wait a few more months to see how its going. Someone advised me that it can take up to 18 months for the levels to adjust to give an accurate reading.  Good Luck


 

User
Posted 11 Feb 2017 at 11:36

Hi both read my profile.

Post RP PSA was 0.06 in March 2013 By July 13 this had risen to 0.087. So I had 20 sessions of RT Aug/Sept 13. My oncologist wouldn't test the PSA for 6 months. So in March 14 it was about 0.047 (can't remember exactly).
Anyway to cut a long story short at each 6 month test it dropped a bit further until in March 16 it had reached 0.01. In Nov 16 it was 0.02 but that is probably i blip (will know more in March)

So yes it can take a while to drop. In my case 2.5 years

Bri

User
Posted 11 Feb 2017 at 14:17

The expectation is that you will reach your nadir (lowest reading) around 18 months after RT, regardless of whether it was salvage, adjuvant or radical treatment. If you are on HT, it is a rather different matter.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Feb 2017 at 14:23
I had 20 sessions of salvage RT in January 2016 when my PSA was 0.13 - over the past 12 months it has fallen to 0.06, 0.03 and latest result two weeks ago was less than 0.02 so undetectable.

Hope this helps reassure you that it takes a bit of time.
User
Posted 11 Feb 2017 at 18:18

Gosh I can't believe how helpful that has been- thanks guys!

All the time waiting for the 'likely' result but no 'guarantee' that the RT would be successful (maybe not for ever but at least a while!), I have been going mad with worry that it wouldn't be lower than the 0.1 /0.2 at start of treatment. Then it came back as 0.1 I'm thinking is that from stuff in the prostate bed....or much worse is it because of something OUTSIDE the bed....and therefore hormones and all that hell beckoning rapidly.

OK, I know it could still be bad, but you have helped me a lot for now!

David

User
Posted 11 Feb 2017 at 18:35
Thanks for this thread David.
I was sure that I had read that it could take 18 months or so to reach a nadir and so I didn't bother phoning for my last PSA result. I finished 33 sessions of SRT in June 2016 and I have a meeting with the onco in March following another PSA test a few days before. PSA at start of SRT was 0.5 and the first PSA following was 0.6 but being told about the 18 months took away the apprehension. The responses to your thread have confirmed that it's not worth worrying at the moment.
Thanks everyone 👍

Kevan
User
Posted 11 Feb 2017 at 21:17

Originally Posted by: Online Community Member


Gosh I can't believe how helpful that has been- thanks guys!


All the time waiting for the 'likely' result but no 'guarantee' that the RT would be successful (maybe not for ever but at least a while!), I have been going mad with worry that it wouldn't be lower than the 0.1 /0.2 at start of treatment. Then it came back as 0.1 I'm thinking is that from stuff in the prostate bed....or much worse is it because of something OUTSIDE the bed....and therefore hormones and all that hell beckoning rapidly.


OK, I know it could still be bad, but you have helped me a lot for now!


David


-


 


Hi David,


If they are not already on the cards, I would push for diagnostics, PET/CT or PET/MR


Dave


 

Not "Why Me?" but "Why Not Me"?
User
Posted 11 Feb 2017 at 21:54

But Dave, such scans show nothing so low, I thought? Is the PET/MR you mention actually PET/MRI ?

User
Posted 11 Feb 2017 at 22:19

I suspect Crescent has misread where you are up to - no need for scans at this stage in your treatment unless you are on HT as well :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Feb 2017 at 23:14

Can't see any scans being offered on basis of current sort of level.

Barry
User
Posted 11 Feb 2017 at 23:14
Hi

What dictates whether you have 20 or thirty something sessions of SRT.

I also asked about a PSMA scan before SRT and was given the impression that RT would be given after a negative scan but withdrawn if the scan was positive.

Thanks Chris
User
Posted 11 Feb 2017 at 23:50

Whether or not your hospital is taking part in the research and/or whether your oncologist is aware of the trial outcomes, I guess, plus whether you are considered fit enough to take the higher dose?

They put John on the high dose regime because he was 52, still playing rugby, had been left with no continence issues post-op, etc. at that time, they were wanting to work out how high the dose can go before increased side effects start to outweigh the better outcomes in terms of remission. They seem to have settled at around 3Gy rather than the more traditional 2Gy although I seem to remember someone on here thinking they had been given 3.4Gy???

I suppose it would make sense not to offer salvage RT with a positive PSMA scan as remission is unlikely.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2017 at 00:01

Just an afterthought - when you got your latest result did you ask them to confirm that there wasn't a little 'less than' sign? I know we have mentioned this before in one of your threads but not all administrators and nurses understand the sign or its significance!!!!!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2017 at 09:25

Originally Posted by: Online Community Member


I suspect Crescent has misread where you are up to - no need for scans at this stage in your treatment unless you are on HT as well :-/



 


Yes, Lynn you are correct, I was really addressing the concern that David showed in a subsequent post regarding possible spread and taking another look at his numbers, a scan is probably a bit premature.


I hope David's PSA doesn't climb to that but it's worth keeping the scan option in mind if it does. No every onco seems to go for it, I had to press mine when my PSA was 0.6


 


 


 

Not "Why Me?" but "Why Not Me"?
User
Posted 12 Feb 2017 at 10:00
Hi, does it take 18 months to reach your lowest PSA after radiotherapy, not just salvage radiotherapy. 4 months after my OH finished radiotherapy the PSA is 1.3 , he is also on prostrap.

Sheila
User
Posted 12 Feb 2017 at 11:17

Hi Guys,


Perhaps I am thick, but one thing I have never properly understood is how much PSA a healthy man should have?


As I understood it PSA should be contained within the prostate, but as we get older and the prostate expands either through cancer or benign expansion the structure of the prostate gets a little distorted and PSA leaks out.  I have thought of it like a car engine, when it is new all the oil stays inside, as it gets older, with worn bearings and gaskets some oil starts to leak?


So a man in his sixties, with no symptoms of PCa and a PSA level of 3 or even 4 is considered healthy?  I wonder what PSA level is found in a healthy man in his 20's or 30's?


A decent size tumour will give quite a high PSA level, mine was 30 at diagnosis and the PCa was still contained within the gland, guys whose PCa has metastasised often have a PSA level in the hundreds.


So for men who have had RP, which has left some healthy prostate tissue at the margins are likely to have some PSA produced by those healthy cells.  In the same way they go to a lot of trouble with EBRT to focus the beams on the cancer, and ditto with Brachytherapy they use the template biopsy to determine where to place the rods, they don't simply irradiate the entire prostate gland.


So whatever treatment we have had we should all be left with a few healthy bits and pieces of prostate that might be expected to produce some PSA.


So why do the doctors get concerned about such low levels of PSA?


:)


Dave 

User
Posted 12 Feb 2017 at 11:52

Dave, there should be no prostate tissue left after RP, healthy or otherwise, and the tiny amount of PSA still around is generated by the adrenal gland. Doctors will allow a higher 'healthy' PSA for a man that has had RT because he will have some remaining healthy prostate tissue which eventually will recover and regenerate. If RP leaves behind some prostste tissue the surgeon has failed.

A healthy young man in his 20s or 30s should have a PSA of less than 1 I think but you can google a table of 'normal'ranges at each decade.

Your statement about PSA in the tens or hundreds is a generalisation - we have men with PSA over 100 with no apparent cancer and then men like Si (PSA around 3 and multiple bone mets) and my father in law (died with a PSA of 1.2 - mets not spotted)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2017 at 11:55
Originally Posted by: Online Community Member
Hi, does it take 18 months to reach your lowest PSA after radiotherapy, not just salvage radiotherapy. 4 months after my OH finished radiotherapy the PSA is 1.3 , he is also on prostrap.

Sheila


Hi Sheila, slightly different when the man is on hormones as the HT keeps the PSA low. But the RT will continue to work to damage the cancerous cells for up to 18 months.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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 16:57
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 16:59
I meant after srt, not set!
User
Posted 01 Jun 2017 at 17:54

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 05:40
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 17:26

Hi Lyn,
Any thoughts on my last post?
Thanks

User
Posted 02 Jun 2017 at 20:43

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 21:33
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 07:24

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
User
Posted 27 Feb 2018 at 12:56

So Lyn, no hope, you think, that the rise is peaking due to cancer cells dying....and still a few months to go for the full 18 months?

David

User
Posted 27 Feb 2018 at 14:44
David

I started my SRT 3 years post RARP at a PSA of 0.27, 3 months post SRT it was 0.08, at 6 months it was 0.04.
Next test tomorrow. I did not have HT.

Thanks Chris
User
Posted 27 Feb 2018 at 15:12

Thanks Chris. Let us know about tomorrow.

So Lyn...John's went up to 0.1 then dropped below again? That's hopeful, surely? I know mine wavered between 0.03 and 0.05 for a year so why indeed shouldnt it drop from 0.1, as indeed John's did.

Edited by member 27 Feb 2018 at 15:34  | Reason: Not specified

User
Posted 27 Feb 2018 at 15:57
I am about to start 37 sessions of salvage radiotherapy. I asked for 20 sessions to get it over and done with quicker. My oncologist said no for two reasons. Firstly, she feels the intensity is such it increases the risk of permanent vascular damage. Secondly, it is a prostate bed only treatment and I need some lymph nodes to be zapped. Her standard treatment is 32 sessions to the prostate bed but I'll do 37 sessions to move further up the prostate bed to the nodes.

With regards to the sensitive testing, what I have to say may risk some criticism. My oncologist is convinced of the benefits of the sensitive test. I went from 0.014 to 0.023 over the space of the year post prostatectomy. In another hospital, I may have been told that my PSA was less than 0.1 and therefore undetectable. My onco said my PSA was persistent and indicated salvage radiotherapy was needed. But she also recommended a PSMA scan and cells showed up in two lymph nodes. I don't know enough about the data regarding the sensitive PSA tests, but based on my experience, I'm happy with them.

Finally, I asked her what PSA level she would look for post salvage radiotherapy- she said 0.003. That's low.

Ulsterman
User
Posted 27 Feb 2018 at 17:03

Originally Posted by: Online Community Member


Thanks Chris. Let us know about tomorrow.


So Lyn...John's went up to 0.1 then dropped below again? That's hopeful, surely? I know mine wavered between 0.03 and 0.05 for a year so why indeed shouldnt it drop from 0.1, as indeed John's did.



 


John's was rising on the ultrasensitive test before the hospital stopped offering it. It then went to 0.1, <0.1 0.11 and then has been <0.1 for a couple so it could be sitting at 0.08 or 0.099999 - it doesn't really matter. It went over 0.1 which is too high to be explained by adrenal activity or cycling or sex in a man with no prostate. He won't want to go on HT unless he is forced so we will keep on having the tests and see how long it is before it starts to rise properly, knowing that it might be years before he has to do anything about it. 


The science says ultra-sensitive testing is unreliable at readings below 0.1 - a reading of 0.11 is therefore considered reliable because it is beyond the point of being detectable. 


Ulsterman, the 20 sessions at higher dose was a trial being run at specific hospitals so perhaps your onco wasn't involved. She should be aware of the trail though as the findings so far are that fit men can take a dose of up to 3.2Gy without major problems, it is more effective that 37 fractions at 2Gy and has less side effects. John's was targeted at the prostate bed and bladder but not the higher lymph nodes.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Feb 2018 at 17:41

Thanks Lyn.

It's useful knowing John had similar stats here. Is it also not relevant now that, 14 months after SRT some cancer cells are still dying and producing more PSA, something you said a previous time? Also, something I will ask my onco, I had 22 nodes removed, all ok, and the bed got RT....so where could any cancer cells now still be growing ...absolutely anywherein the body? ie. they escaped pre SRT....or just survived the SRT? And does this mean, officially, I have metastasis?

Thanks very much

David

User
Posted 27 Feb 2018 at 18:58

David it is too soon after RT to panic - yes your cells are still dying and you may have to wait another few months before you hit your nadir. John is nearly 6 years past SRT so it is rather different.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Feb 2018 at 20:03

Lyn after today's bad result (a jump up from 0.05 to full fat 0.11) after a steady year where I was beginning to have some confidence, I REALLY needed someone to give me some hope. I know I'm not on the edge of death, but I DO know that if it hasn't all been got, it will rise and rise. And I know HT does not work for ever. I'm 57 so.....


YOU, with that sentence above, have given me some hope! With my cancer diagnosed unexpectedly, supposedly sorted by RP, failed so SRT, looking dubious, I'm pretty down.


It may be dashed in 3 months' time when I will be at 18 months post SRT ending. I realise that. I do still wonder though why it's gone up now at 14 months when it was pretty steady, but there we are....


THANK YOU!


 


 


But I just recalled earlier you said: 


it seems that you are now detectable and will need to decide with your onco at what point you start hormones again.


That's a bit different to not panicking!!

Edited by member 27 Feb 2018 at 20:12  | Reason: Not specified

User
Posted 09 Mar 2018 at 11:42

Well, just back from my 3 monthly meeting with the relatively new somewhat lacking charisma consultant, following my latest PSA of 0.1, up after the steady 0.03.0.05 wavy line for 12 months.
I'm getting mixed messages from folks on here, and onE of 2 PCUK nurses I spoke to, that it could still be peaking post SRT, as it's not 18 months yet. And the consultant who doesn't suspect it's going to go down again. The best he had to offer is that it could stabilise, but essentially 'something' escaped before or soon after surgery/SRT.
Hmm...it would do, wouldn't it?!
Needless to say, I am devastated, as this feels like the 3rd diagnosis within 2 years. All with no symptoms, and checked only because of my brother's diagnosis.
My doubling rate worked out at 5-6 years before surgery. My hope, my prayer, is that it stays at that rate. Yes - I know it can change but I have to hope for something here, as my hopes have been dashed several times already.


If the growth stays as slow as it did, I may be alright. That's the only hope I have really, in terms of avoiding HT, which 2 years ago seemed so unlikley.


Thanks for listening.


David


Age now 57, G3+4

Edited by member 09 Mar 2018 at 13:06  | Reason: Not specified

User
Posted 09 Mar 2018 at 13:10

Don't be devastated - look at my profile for John's results. He has gone up to 0.11 and then back to 0.1 and the last 2 results were <0.1 and we are a bit nervous but not devastated - the onco thinks that he may just settle there and bob around without ever having any more treatment, or it may rise again and at some point there will be a need for long term HT but since it is still hovering at 5.5 years post SRT if there is some cancer still lurking it certainly doesn't seem to be very active.

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