I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Possible biochemical recurrence?!

Email this conversation Print this conversation
User
Posted 12 Oct 2018 at 18:04

It's been a while since I last sought the help and support of the good folks here!


Here is my profile to give perspective to my question :


Gleason 4+3, Gland confined but 1mm apical margin, T2c.


Robotic RP Sept 2014 followed by HT (Bicalutamide for 2 yrs) and RT (66Gy) in 2015


Post HT/RT 4 monthly PSA since was 0.03 then 0.01 until end of 2017


Last 3 PSA this year with consecutive rises 0.02 > 0.04 > 0.09


Attended clinic (UCLH) this week and was told there is no need for any intervention unless it rises beyond 0.1 and nearer to 0.2


I know that technically my PSA is still undetectable and that biochemical recurrence is by consensus defined as >0.2


Should I be a little concerned and would a PSMA detect anything suspicious?


I feel as good as my pre diagnosis years I am glad to report, except my ED which is not an issue for me!


Your thoughts and comments are most welcomed.


Thank you and best regards,


Jacey

User
Posted 12 Oct 2018 at 22:18

Hi Jacey,  I read your profile and they started your RT preparation when it rose to 0.15.  Now your psa is doubling every 3 months reaching 0.09. 


You may already know what I'm writing as your profile uses knowledgeable terminology.  Many hospitals don't measure beneath 0.1 nowadays. Although there are others who had treatment below 0.1.  I have given it some thought in case I'm confronted with this situation. 


My own thinking is that if I had rising psa doubling every 3 months and at 0.09 I'd at least ask for another psa test in 1 month and if the trend continues (e.g. it has reached around 0.12) be asking what are they proposing as it might soon reach 0.2.  On the other hand there are people who have stable 0.09 psa.    I've read people saying PET scans are more detailed so perhaps that would be the case.  I'm not sure what treatment they'd offer depending on what was found.


Hopefully others will reply with further information.


Regards

User
Posted 12 Oct 2018 at 23:36

Ulsterman got a detection with psma at 0.023 and this was treated with RT that standard salvage would have missed. Also lots of chatter about oligometastatic PC on utube etc.


I think I would be pushing for a psma scan to see what is going on.

User
Posted 13 Oct 2018 at 07:43
Hi Jacey,

I was interested to read your post as it may augur my situation in future!

I am four or five months post-prostatectomy and my PSA is ‘undetectable’, i.e. <0.1, which is the lowest the billion-pound super hospital here tests to. Both my Harley Street surgeon and oncologist here are of the opinion that what they call ‘super sensitive assays’ to the nth decimal point do more harm than good. My oncologist rashly in my opinion, told me I am cured, but for now, with undetectable PSA, ignorance is bliss!

However, I have a consultation with a top prostate cancer oncologist at the Royal Marsden Hospital at the end of this month to see what he thinks of 0.000000000001 PSA tests and how ‘cured’ he thinks I am! I will also enquire about Choline and and Gallium scans should I have any recurrence in future, which I feel is inevitable at some point.

Come and have your PSA tests here in Coventry and you’ll have nothing to worry about 😉

Best of luck.

Cheers, John.
User
Posted 13 Oct 2018 at 08:19
I attended a talk by one of my local oncology team at my local PCa mens group this week.

Ultra-sensitive tests were raised as a topic and the feedback was that yes they can detect things going on but also increase the risk of over-treatment.

TBH, I suspect that as with the establishment reluctance to expand PSA tests and reduce the start age for tests, rationing plays as much a part in this as science.

User
Posted 13 Oct 2018 at 08:52

Originally Posted by: Online Community Member

Ultra-sensitive tests were raised as a topic and the feedback was that yes they can detect things going on but also increase the risk of over-treatment.

TBH, I suspect that as with the establishment reluctance to expand PSA tests and reduce the start age for tests, rationing plays as much a part in this as science.


Yes, since I have been a PCa evangelist, three friends requested PSA tests at my suggestion, and all three of their GPs said testing ‘was not necessary’. They insisted and one had a raised PSA and as a result underwent an MRI which was negative. He will now have regular PSA follow-ups.


The Harley Street guy would happily charge for PSA tests of whatever accuracy in his clinic at around £125 a pop, so no rationing there!


Cheers, John.

User
Posted 13 Oct 2018 at 11:26

My PSMA scan picked up remaining cancer cells at 0.023.  So, I'm a believer in super sensitive testing and PSMA scans.  I know others on here have not had the same 'success' with PSMA as I have, and I use the word success in a guarded and ironic way.


If my hospital had not been doing the super sensitive test, the cancer may well have been progressing and growing whilst I still measured less than 0.1.


My PSMA scan was done post prostatectomy but pre HT and pre SRT.


Ulsterman  

User
Posted 14 Oct 2018 at 02:24
PSMA seems an unnecessary step in your case. Your 4 year PSA climb is classic for biochemical recurrence in the prostate bed and I would expect you to be referred to oncology after your next PSA test in 3 months.

PSMA is more useful for men who have a too high PSA immediately after RP or who go undetectable and then have a sharp and sudden rise.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Oct 2018 at 06:19

I had 0.16/0.17/0.24 after BCR at 9 months and PSMA was never mentioned.


The onco at the talk I went to this week seemed to imply my six months HT / 33 fractions SRT was for a low risk situation. Other research I have done suggests poorer outcomes on average.


Nowhere have I found a clear cutoff for low and high risk for BCR which means that people will always worry and seek a more robust diagnosis.


I’ve only spent six weeks talking to people in the RT waiting room and all seemed to have had “normal” treatment. I wonder how many people do get the whiz bang stuff in reality in the current cash strapped environment even if they are higher risk.

Edited by member 14 Oct 2018 at 06:20  | Reason: Not specified

User
Posted 14 Oct 2018 at 09:09

Originally Posted by: Online Community Member
PSMA seems an unnecessary step in your case. Your 4 year PSA climb is classic for biochemical recurrence in the prostate bed and I would expect you to be referred to oncology after your next PSA test in 3 months.

PSMA is more useful for men who have a too high PSA immediately after RP or who go undetectable and then have a sharp and sudden rise.


But the prostate bed has already been irradiated inithis case lyn ?


So if it's a recurrence after RP and RT they need to know if it's still localised and where, if it's outside the previous treatment area it could still be treated with radio therapy.


Ulsterman met neither of your stated criteria and has hopefully benefitted from psma.

User
Posted 14 Oct 2018 at 09:15

Originally Posted by: Online Community Member


I had 0.16/0.17/0.24 after BCR at 9 months and PSMA was never mentioned.


The onco at the talk I went to this week seemed to imply my six months HT / 33 fractions SRT was for a low risk situation. Other research I have done suggests poorer outcomes on average.


Nowhere have I found a clear cutoff for low and high risk for BCR which means that people will always worry and seek a more robust diagnosis.


I’ve only spent six weeks talking to people in the RT waiting room and all seemed to have had “normal” treatment. I wonder how many people do get the whiz bang stuff in reality in the current cash strapped environment even if they are higher risk.



Simple fact of life in the NHS - you will get the standard of care that gives the best outcome for  most cases.  This is great if you have a classic case. If you are a bit different and and might benefit from something a little more "tailored" you will have to fight to get it OR bite the bullet and pay to get it.

User
Posted 14 Oct 2018 at 12:31

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


I had 0.16/0.17/0.24 after BCR at 9 months and PSMA was never mentioned.


The onco at the talk I went to this week seemed to imply my six months HT / 33 fractions SRT was for a low risk situation. Other research I have done suggests poorer outcomes on average.


Nowhere have I found a clear cutoff for low and high risk for BCR which means that people will always worry and seek a more robust diagnosis.


I’ve only spent six weeks talking to people in the RT waiting room and all seemed to have had “normal” treatment. I wonder how many people do get the whiz bang stuff in reality in the current cash strapped environment even if they are higher risk.



Simple fact of life in the NHS - you will get the standard of care that gives the best outcome for  most cases.  This is great if you have a classic case. If you are a bit different and and might benefit from something a little more "tailored" you will have to fight to get it OR bite the bullet and pay to get it.



Problem is when they refuse to even discuss anything beyond “you have BCR, we are going to zap you and suck it and see...”

Show Most Thanked Posts
User
Posted 12 Oct 2018 at 22:18

Hi Jacey,  I read your profile and they started your RT preparation when it rose to 0.15.  Now your psa is doubling every 3 months reaching 0.09. 


You may already know what I'm writing as your profile uses knowledgeable terminology.  Many hospitals don't measure beneath 0.1 nowadays. Although there are others who had treatment below 0.1.  I have given it some thought in case I'm confronted with this situation. 


My own thinking is that if I had rising psa doubling every 3 months and at 0.09 I'd at least ask for another psa test in 1 month and if the trend continues (e.g. it has reached around 0.12) be asking what are they proposing as it might soon reach 0.2.  On the other hand there are people who have stable 0.09 psa.    I've read people saying PET scans are more detailed so perhaps that would be the case.  I'm not sure what treatment they'd offer depending on what was found.


Hopefully others will reply with further information.


Regards

User
Posted 12 Oct 2018 at 23:36

Ulsterman got a detection with psma at 0.023 and this was treated with RT that standard salvage would have missed. Also lots of chatter about oligometastatic PC on utube etc.


I think I would be pushing for a psma scan to see what is going on.

User
Posted 13 Oct 2018 at 07:43
Hi Jacey,

I was interested to read your post as it may augur my situation in future!

I am four or five months post-prostatectomy and my PSA is ‘undetectable’, i.e. <0.1, which is the lowest the billion-pound super hospital here tests to. Both my Harley Street surgeon and oncologist here are of the opinion that what they call ‘super sensitive assays’ to the nth decimal point do more harm than good. My oncologist rashly in my opinion, told me I am cured, but for now, with undetectable PSA, ignorance is bliss!

However, I have a consultation with a top prostate cancer oncologist at the Royal Marsden Hospital at the end of this month to see what he thinks of 0.000000000001 PSA tests and how ‘cured’ he thinks I am! I will also enquire about Choline and and Gallium scans should I have any recurrence in future, which I feel is inevitable at some point.

Come and have your PSA tests here in Coventry and you’ll have nothing to worry about 😉

Best of luck.

Cheers, John.
User
Posted 13 Oct 2018 at 08:19
I attended a talk by one of my local oncology team at my local PCa mens group this week.

Ultra-sensitive tests were raised as a topic and the feedback was that yes they can detect things going on but also increase the risk of over-treatment.

TBH, I suspect that as with the establishment reluctance to expand PSA tests and reduce the start age for tests, rationing plays as much a part in this as science.

User
Posted 13 Oct 2018 at 08:52

Originally Posted by: Online Community Member

Ultra-sensitive tests were raised as a topic and the feedback was that yes they can detect things going on but also increase the risk of over-treatment.

TBH, I suspect that as with the establishment reluctance to expand PSA tests and reduce the start age for tests, rationing plays as much a part in this as science.


Yes, since I have been a PCa evangelist, three friends requested PSA tests at my suggestion, and all three of their GPs said testing ‘was not necessary’. They insisted and one had a raised PSA and as a result underwent an MRI which was negative. He will now have regular PSA follow-ups.


The Harley Street guy would happily charge for PSA tests of whatever accuracy in his clinic at around £125 a pop, so no rationing there!


Cheers, John.

User
Posted 13 Oct 2018 at 11:26

My PSMA scan picked up remaining cancer cells at 0.023.  So, I'm a believer in super sensitive testing and PSMA scans.  I know others on here have not had the same 'success' with PSMA as I have, and I use the word success in a guarded and ironic way.


If my hospital had not been doing the super sensitive test, the cancer may well have been progressing and growing whilst I still measured less than 0.1.


My PSMA scan was done post prostatectomy but pre HT and pre SRT.


Ulsterman  

User
Posted 13 Oct 2018 at 13:51
Thank you, gentlemen, for your considered responses which I appreciate and take on board.

We all know that PSA generates an awful lot of anxiety sometimes unnecessarily. There is a term for it, too, known as PSAitis!

Maybe I should take some (misguided?) comfort in that it has stayed undetectable at < 0.1 (am following Johns Hopkins guideline) in the context of having salvage HT and RT following my RRP 4 yrs ago.

My next review will be in February and I shall most certainly push hard for a PSMA if it goes above 0.1 and take it from there. The challenge would then be to identify accurately the cancerous sites. I would be unhappy to be treated 'blindly'.

Am also conscious of the fact that each of our treatment strategies is unique to ourselves even if our profiles are similar.


Best Regards,

Jacey

P.S: francij1- Oligometostatic Pca is certainly of great interest to me. Thanks
User
Posted 14 Oct 2018 at 02:24
PSMA seems an unnecessary step in your case. Your 4 year PSA climb is classic for biochemical recurrence in the prostate bed and I would expect you to be referred to oncology after your next PSA test in 3 months.

PSMA is more useful for men who have a too high PSA immediately after RP or who go undetectable and then have a sharp and sudden rise.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Oct 2018 at 06:19

I had 0.16/0.17/0.24 after BCR at 9 months and PSMA was never mentioned.


The onco at the talk I went to this week seemed to imply my six months HT / 33 fractions SRT was for a low risk situation. Other research I have done suggests poorer outcomes on average.


Nowhere have I found a clear cutoff for low and high risk for BCR which means that people will always worry and seek a more robust diagnosis.


I’ve only spent six weeks talking to people in the RT waiting room and all seemed to have had “normal” treatment. I wonder how many people do get the whiz bang stuff in reality in the current cash strapped environment even if they are higher risk.

Edited by member 14 Oct 2018 at 06:20  | Reason: Not specified

User
Posted 14 Oct 2018 at 09:09

Originally Posted by: Online Community Member
PSMA seems an unnecessary step in your case. Your 4 year PSA climb is classic for biochemical recurrence in the prostate bed and I would expect you to be referred to oncology after your next PSA test in 3 months.

PSMA is more useful for men who have a too high PSA immediately after RP or who go undetectable and then have a sharp and sudden rise.


But the prostate bed has already been irradiated inithis case lyn ?


So if it's a recurrence after RP and RT they need to know if it's still localised and where, if it's outside the previous treatment area it could still be treated with radio therapy.


Ulsterman met neither of your stated criteria and has hopefully benefitted from psma.

User
Posted 14 Oct 2018 at 09:15

Originally Posted by: Online Community Member


I had 0.16/0.17/0.24 after BCR at 9 months and PSMA was never mentioned.


The onco at the talk I went to this week seemed to imply my six months HT / 33 fractions SRT was for a low risk situation. Other research I have done suggests poorer outcomes on average.


Nowhere have I found a clear cutoff for low and high risk for BCR which means that people will always worry and seek a more robust diagnosis.


I’ve only spent six weeks talking to people in the RT waiting room and all seemed to have had “normal” treatment. I wonder how many people do get the whiz bang stuff in reality in the current cash strapped environment even if they are higher risk.



Simple fact of life in the NHS - you will get the standard of care that gives the best outcome for  most cases.  This is great if you have a classic case. If you are a bit different and and might benefit from something a little more "tailored" you will have to fight to get it OR bite the bullet and pay to get it.

User
Posted 14 Oct 2018 at 12:01
I would, if needs be (reluctantly) pay for a radiotracing scan that would positively identify tumour sites if my psa increases for the 4th time. But then what: another regime of HT? Cyberknife??

Depending on the findings I guess one would have to weigh up benefits against adverse effects of treatment/ overtreatment.

Meanwhile, as always, I lock up the little bugger out of my sight and carry on as usual. 😊
User
Posted 14 Oct 2018 at 12:31

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


I had 0.16/0.17/0.24 after BCR at 9 months and PSMA was never mentioned.


The onco at the talk I went to this week seemed to imply my six months HT / 33 fractions SRT was for a low risk situation. Other research I have done suggests poorer outcomes on average.


Nowhere have I found a clear cutoff for low and high risk for BCR which means that people will always worry and seek a more robust diagnosis.


I’ve only spent six weeks talking to people in the RT waiting room and all seemed to have had “normal” treatment. I wonder how many people do get the whiz bang stuff in reality in the current cash strapped environment even if they are higher risk.



Simple fact of life in the NHS - you will get the standard of care that gives the best outcome for  most cases.  This is great if you have a classic case. If you are a bit different and and might benefit from something a little more "tailored" you will have to fight to get it OR bite the bullet and pay to get it.



Problem is when they refuse to even discuss anything beyond “you have BCR, we are going to zap you and suck it and see...”

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK