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SRT seems to have failed so what next?

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User
Posted 08 Apr 2019 at 17:28

Had RP September 15. Gleason upgraded to 4+3. Had a positive margin. Post Op PSA was 0.06. The lowest it went was 0.03. It gradually went back up to 0.06. Had  SRT Feb to April 18. I had to really push for hormone therapy (very hard) and had 6 months Zoladex starting November 17. The SRT was to prostate bed only despite me asking re lymph nodes (probably not strongly enough).  First PSA test in July was less than 0.01. Most recent PSA test in March 19 was 0.02 which is gutting  as it means SRT has not worked. The oncologists plan is to monitor PSA until it gets to 0.5  and then try a scan. Am considering options. Advice would be welcome. Not sure if there are clinical trials at this stage. The cure stage appears to be gone but I feel that I should wait for the next couple of PSA tests now every 3 months and hit it hard but I don't think they would agree to early Chemo despite promising trials.

User
Posted 08 Apr 2019 at 18:13

Hi Christophe


I had RP followed by SRT but following SRT my PSA was 0.6 and continued up to 1.2 at which point I started HT with Prostap 3. First PSA after first Prostap jab was less than 0.1 and it has remained there since.


Hope this helps.


 

User
Posted 08 Apr 2019 at 23:51
The nadir is expected at about 18 month’s post-RT regardless of whether it was radical, adjuvant or salvage RT. It takes 18 months for the cooked cells to completely stop replicating, even in their damaged form. The only exception would be where the man is still on HT at the 18 month point, in which case the nadir might be a bit disguised.

There is nothing to suggest to you that there is a problem at 0.02 - it is like the dream result at this stage! The shift from 0.01 to 0.02 could be machine noise, standard variation, recalibration of the testing equipment, a different machine, etc, etc. We have had one sample tested twice on the same day at the same lab and got two different results. Many hospitals have stopped offering PSA tests to more than one decimal place because of the unreliability of the results and the undue distress that can be caused. Research at our nearby oncology centre of excellence recently found that the average woman has a higher PSA than you!

Try to enjoy a great result :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Apr 2019 at 08:05
Christophe, you need to clarify your ultrasensitive results with your lab. Are they to 3 decimal places or 2? I would expect s "bang on" 0.02 to be written as 0.020 if it's an USPA assay.
If the third place is rounded you need to know if they are rounding up or down. Your levels sound like classic small positive margins so I think you are being premature with your "no cure" statement.

If you want to be really proactive do you have access to a PSMA scan? Ulsterman has had positive lymph detections at 0.02 levels and was able to have these treated. BTW this is very unusual.

On the other hand Lyne's other half has bobbed along at 0.1 for years post SRT with no further treatment. I think this is more common and supports the stats where most guys with a full biochemical recurrence (>0.2) DO NOT develop life threatening metastasis.
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User
Posted 08 Apr 2019 at 18:13

Hi Christophe


I had RP followed by SRT but following SRT my PSA was 0.6 and continued up to 1.2 at which point I started HT with Prostap 3. First PSA after first Prostap jab was less than 0.1 and it has remained there since.


Hope this helps.


 

User
Posted 08 Apr 2019 at 18:26
As I am often reminded at those levels ie 0.01 and 0.02 there is every chance that things are still on track. Don’t lose hope yet

Bri
User
Posted 08 Apr 2019 at 18:27
My first PSA following srt was 0.07 and they did not seem bothered. I’ve been told it can take a while to stabilise / reduce. Have they specifically said it failed?

I may have been sold a dummy about my post SRT results and may well be royally rubber ducked if your situation is to be taken as read.
User
Posted 08 Apr 2019 at 19:31

Thanks all. They have not said for sure that it has failed but I got the impression that they were letting me down gently. I was told that ideally it should be less than 0.02 .  I think they are hoping as I am that it stays at around this level. I may well be getting ahead of myself but I am beginning to research options before my next test in June but I will still  hope for the best!

User
Posted 08 Apr 2019 at 20:21
You may be reading too much in to it.

I did a short refresher on the facts (not too much in case Lynn tells me off!)

- <0.1 is considered undetectable
- Initial undetectable readings are considered a positive indication
- The margin for error below 0.1 is quite large so 0.1 and 0.2 is negligible
- It can take between 2 months to 2 years to reach a stable nadir
- Readings over the intermediate period can fluctuate as cells continue to die
- Looking at places like here and Yananow, there are quite a few people who had high levels but still < 0.1 who did well

If I am wrong on any of the above, can someone shout?

You may want to consider the above when thinking about where you are.

Bearing in mind the fight you had to get HT and could not get the coverage to extend to your lymph nodes, your medical team comes across as either very negative or unadventurous. A shame...

PP
User
Posted 08 Apr 2019 at 21:54

Thanks PP. V helpful. Good luck too

User
Posted 08 Apr 2019 at 21:55
Cheers

It is all a guessing game, isn’t it?!
User
Posted 08 Apr 2019 at 21:57

 Yes a bit of a lottery where we all wish we did not have tickets!

User
Posted 08 Apr 2019 at 22:08

Putting my logical head on I would take 0.01 and 0.02 as pretty much the same reading I.e. undetectable.


If the PSA starts to steadily rise in the coming months then that would indicate SRT has failed.


It is a horrible feeling when you know that if it has failed then incurable comes to mind.


I am waiting to see what happens with my PSA now I am off HT after SRT in March/April 2017. 


I wish I didn’t have a ticket for this experience too.


Ian

Ido4

User
Posted 08 Apr 2019 at 22:10
I’ve been told that the nadir for RT generally occurs around 18 months after the end of treatment.

Cheers,

Chris

User
Posted 08 Apr 2019 at 22:16

Good luck to you Ian. My first reading was actually less than 0.01 and the latest one was smack on 0.02 so I am having to keep my fingers crossed but at the same time I am thinking about options but I will wait for next couple of results.

User
Posted 08 Apr 2019 at 22:18

Chris I had heard this too when RT is the primary treatment but I am not sure this is the case for SRT but perhaps others know. The worrying thing is the direction of travel but maybe that was because of the HT impact but we will see!

User
Posted 08 Apr 2019 at 23:51
The nadir is expected at about 18 month’s post-RT regardless of whether it was radical, adjuvant or salvage RT. It takes 18 months for the cooked cells to completely stop replicating, even in their damaged form. The only exception would be where the man is still on HT at the 18 month point, in which case the nadir might be a bit disguised.

There is nothing to suggest to you that there is a problem at 0.02 - it is like the dream result at this stage! The shift from 0.01 to 0.02 could be machine noise, standard variation, recalibration of the testing equipment, a different machine, etc, etc. We have had one sample tested twice on the same day at the same lab and got two different results. Many hospitals have stopped offering PSA tests to more than one decimal place because of the unreliability of the results and the undue distress that can be caused. Research at our nearby oncology centre of excellence recently found that the average woman has a higher PSA than you!

Try to enjoy a great result :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Apr 2019 at 08:05
Christophe, you need to clarify your ultrasensitive results with your lab. Are they to 3 decimal places or 2? I would expect s "bang on" 0.02 to be written as 0.020 if it's an USPA assay.
If the third place is rounded you need to know if they are rounding up or down. Your levels sound like classic small positive margins so I think you are being premature with your "no cure" statement.

If you want to be really proactive do you have access to a PSMA scan? Ulsterman has had positive lymph detections at 0.02 levels and was able to have these treated. BTW this is very unusual.

On the other hand Lyne's other half has bobbed along at 0.1 for years post SRT with no further treatment. I think this is more common and supports the stats where most guys with a full biochemical recurrence (>0.2) DO NOT develop life threatening metastasis.
User
Posted 09 Apr 2019 at 08:16
Francij - could you elaborate your last point about BCR mets?
User
Posted 09 Apr 2019 at 10:32
Ditto...be interested to know where that information comes from

Bri
User
Posted 09 Apr 2019 at 11:03

Thanks Lyn. Very encouraging. 

User
Posted 09 Apr 2019 at 11:05

Thanks. I have no idea. I think I will wait until my next test in June and be sure to ask. I will keep my fingers crossed in the meantime.

User
Posted 09 Apr 2019 at 11:17

Francij1 - I had my psma scan before salvage radiotherapy.  Before SRT PSA was 0.023.  It is now <0.006, but I’m also still on HT.  until I stop HT, we won’t know what my true PSA is.  I did have SRT to the prostate bed and lymph nodes.


Ulsterman

User
Posted 09 Apr 2019 at 11:18

https://onlinelibrary.wiley.com/doi/full/10.1111/bju.13926


The paper above sums it up.

Edited by moderator 06 Jul 2023 at 13:22  | Reason: Not specified

User
Posted 09 Apr 2019 at 11:47
I’m not sure that tells us anything we didn’t know. Earlier bcr and aggressive pathology is still a marker for high risk and vice versa. As there are multiple parameters I think it is a bit too loose to say most BCRs don’t kill you. Some of us are at the high risk end and I guess we are more sensitive to individual cases. Happy to be proved wrong!!
User
Posted 09 Apr 2019 at 12:01

Originally Posted by: Online Community Member
Christophe, you need to clarify your ultrasensitive results with your lab. Are they to 3 decimal places or 2? I would expect s "bang on" 0.02 to be written as 0.020 if it's an USPA assay.


If the third place is rounded you need to know if they are rounding up or down.  


 


Some hospitals offer PSA to 1 decimal place, others offer ultrasensitive testing to 2 decimal places. A very small number offer usPSA to 3 decimal places. Mathematical rounding is always done upwards for 4 or below and upwards for 5 or above. 


Since the previous results were <0.01 and this one was 0.02, it seems safe to assume that Christophe's hospital offers usPSA to 2 decimal places. A result of 0.02 could have been a true reading of 0.015 but at these levels it could simply have been that he had a big poo that morning, or that the test was taken at a different time of day to the previous ones - it certainly isn't 'classic small positive margins' ... if the result had been 0.1 rising to 0.2 prior to salvage treatment then yes, but small positive margins is a misnomer post-RT! 


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Apr 2019 at 12:58

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
Christophe, you need to clarify your ultrasensitive results with your lab. Are they to 3 decimal places or 2? I would expect s "bang on" 0.02 to be written as 0.020 if it's an USPA assay.


If the third place is rounded you need to know if they are rounding up or down.  


 


Some hospitals offer PSA to 1 decimal place, others offer ultrasensitive testing to 2 decimal places. A very small number offer usPSA to 3 decimal places. Mathematical rounding is always done upwards for 4 or below and upwards for 5 or above. 


Since the previous results were <0.01 and this one was 0.02, it seems safe to assume that Christophe's hospital offers usPSA to 2 decimal places. A result of 0.02 could have been a true reading of 0.015 but at these levels it could simply have been that he had a big poo that morning, or that the test was taken at a different time of day to the previous ones - it certainly isn't 'classic small positive margins' ... if the result had been 0.1 rising to 0.2 prior to salvage treatment then yes, but small positive margins is a misnomer post-RT! 


 



I was talking about post RP, so we know some cancer was left and that is why he had the ART. 

User
Posted 09 Apr 2019 at 14:34
Ah I see, although at 0.06 - 0.03 - 0.06 it wasn't showing classic signs of any cancer having been left behind anyway - I suspect the A/SRT was more due to the positive margin than anything else.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Apr 2019 at 22:18

Thanks to all for your comments. A wealth of knowledge on here which is appreciated

 
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