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PSA during treatment

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User
Posted 21 Mar 2024 at 02:17

Hi everyone,

my first post. I was diagnosed with T3cN1M0 in October last year. Started hormone injections 4 months ago and just had my 4th doxatel cycle (of 6) start today.

PSA was 95 in August, dropped to 54 mid Jan just before chemo started, then 35 but the last two readings have been 65 and 85! Onc originally suggested 10 cycles but now it’s a CT scan and testosterone bloods (I’m not getting any testosterone related issues). Obviously worried.

Has anyone come across this? Or anyone’s thoughts? Greatly appreciated.

thanks 

Justin 

User
Posted 21 Mar 2024 at 12:58

They should definitely do a Testosterone test, to make sure the hormone therapy is working. Sometimes, one of the medications doesn't work for a particular person, and they need to change to another. There are 3 commonly used injections in the UK, Prostap, Zoladex, and Decapeptyl, with Firmagon used in some specific cases. There might also be a possibility of the last injection having been done incorrectly.

User
Posted 21 Mar 2024 at 02:17

Hi everyone,

my first post. I was diagnosed with T3cN1M0 in October last year. Started hormone injections 4 months ago and just had my 4th doxatel cycle (of 6) start today.

PSA was 95 in August, dropped to 54 mid Jan just before chemo started, then 35 but the last two readings have been 65 and 85! Onc originally suggested 10 cycles but now it’s a CT scan and testosterone bloods (I’m not getting any testosterone related issues). Obviously worried.

Has anyone come across this? Or anyone’s thoughts? Greatly appreciated.

thanks 

Justin 

User
Posted 21 Mar 2024 at 12:39

Cheers buddy, glad I found you all too :) best of luck to you too Adrian 🤞

User
Posted 21 Mar 2024 at 12:56

Hi Justin,

Sorry this has happened to you and can quite understand why you are worried. You say you have not had any Testosterone related issues…do you mean that you feel you’ve still got testosterone? Is your libido still normal?

I know sometimes PCa can become Castrate resistant but I’m not qualified to tell you if that’s what’s happened to you, there are others on here who have much better knowledge than me.

I think you’re going to have to wait for the results of the tests, but why not give your CNS a phone…mine is super helpful. Also if your struggling with this, if you have a local support group such as Maggies, go along and have a chat with them….it has helped enormously on this ordeal. Try and stay busy and be good yourself during this waiting to keep your mind off worrying.

Good luck!

Derek

User
Posted 21 Mar 2024 at 13:10

Thanks Andy, on Prostap 4 months, initial one month at hospital in stomach and 3 month at drs arm. I’m not sure why testosterone isn’t a marker like PSA if they’re assuming that will come down. Really appreciate your  help.

chased the ct scan today has been booked for the day after my next oncology appointment which means it’s likely we’d be discussing it at an oncology appointment 12 weeks after first (nearly double rise), so have chased. Took 8 months to diagnose me so delays cause me anxiety 😥 

User
Posted 21 Mar 2024 at 17:18

Just had an update from oncology PSA has dropped back down to 57 from 85. Also that testosterone is 2 much lower than 7.5 it should be so indicative that hormones are working (not sure what scale that is couldn’t find it online). Ct still booked but they say good news. For one glad it’s going in the right direction

User
Posted 21 Mar 2024 at 20:13

Originally Posted by: Online Community Member
Also that testosterone is 2 much lower than 7.5 it should be so indicative that hormones are working (not sure what scale that is couldn’t find it online).

If hormone treatment is working correctly, the testosterone should be below castrate level - so 0.69 or lower. It seems your HT isn't working to its full effectiveness which is probably why your PSA remains high. Sometimes in cases like this, the onco will change the hormone to a different one or they add bicalutimide tablets to help the injection. 

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

User
Posted 22 Mar 2024 at 14:33
Thanks for the clarification. Sometimes, you just have to trust that the experts know what they are doing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 21 Mar 2024 at 09:40

Hi Justin,

It's sad that you've had to find us, but I'm glad you have. Welcome to the forum. There are many knowledgeable folk on here who will be able to guide and support you.

Unfortunately my experience of hormone treatment is very limited and I am unable to assist with your enquiry. However, you can guarantee someone will be along soon to help you.

Best of luck mate.

 

User
Posted 21 Mar 2024 at 12:39

Cheers buddy, glad I found you all too :) best of luck to you too Adrian 🤞

User
Posted 21 Mar 2024 at 12:56

Hi Justin,

Sorry this has happened to you and can quite understand why you are worried. You say you have not had any Testosterone related issues…do you mean that you feel you’ve still got testosterone? Is your libido still normal?

I know sometimes PCa can become Castrate resistant but I’m not qualified to tell you if that’s what’s happened to you, there are others on here who have much better knowledge than me.

I think you’re going to have to wait for the results of the tests, but why not give your CNS a phone…mine is super helpful. Also if your struggling with this, if you have a local support group such as Maggies, go along and have a chat with them….it has helped enormously on this ordeal. Try and stay busy and be good yourself during this waiting to keep your mind off worrying.

Good luck!

Derek

User
Posted 21 Mar 2024 at 12:58

They should definitely do a Testosterone test, to make sure the hormone therapy is working. Sometimes, one of the medications doesn't work for a particular person, and they need to change to another. There are 3 commonly used injections in the UK, Prostap, Zoladex, and Decapeptyl, with Firmagon used in some specific cases. There might also be a possibility of the last injection having been done incorrectly.

User
Posted 21 Mar 2024 at 13:10

Thanks Andy, on Prostap 4 months, initial one month at hospital in stomach and 3 month at drs arm. I’m not sure why testosterone isn’t a marker like PSA if they’re assuming that will come down. Really appreciate your  help.

chased the ct scan today has been booked for the day after my next oncology appointment which means it’s likely we’d be discussing it at an oncology appointment 12 weeks after first (nearly double rise), so have chased. Took 8 months to diagnose me so delays cause me anxiety 😥 

User
Posted 21 Mar 2024 at 17:18

Just had an update from oncology PSA has dropped back down to 57 from 85. Also that testosterone is 2 much lower than 7.5 it should be so indicative that hormones are working (not sure what scale that is couldn’t find it online). Ct still booked but they say good news. For one glad it’s going in the right direction

User
Posted 21 Mar 2024 at 17:20

Thanks Derek, appreciate the reply and advice. Yes I’ve been feeling the same as I did prior to hormones ( can’t say the same about the chemo tho!)

User
Posted 21 Mar 2024 at 20:13

Originally Posted by: Online Community Member
Also that testosterone is 2 much lower than 7.5 it should be so indicative that hormones are working (not sure what scale that is couldn’t find it online).

If hormone treatment is working correctly, the testosterone should be below castrate level - so 0.69 or lower. It seems your HT isn't working to its full effectiveness which is probably why your PSA remains high. Sometimes in cases like this, the onco will change the hormone to a different one or they add bicalutimide tablets to help the injection. 

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

User
Posted 21 Mar 2024 at 20:16

Thanks Lyn,

does it take some time to get to that number? I’ve only been in HT 4 months? Thanks 

User
Posted 21 Mar 2024 at 21:22

I’m in a slightly different position from you with diagnosis, but my PSA dropped very quickly in the first 3 months from 36 to 3, then it slowed down and after 9 months when RT started it was 0.9.

I might be wrong but I think I remember reading somewhere that a drop of 90% after 3 months was a good result, so for me it was more than good.I did get concerned after that when it slowed down considerably, but everyone is different I suppose and my CNS seemed more than happy with my readings. 

I think I’m lucky in Fife(and maybe ALL NHS Scotland) that my CNS gives me the jab and has a chance to listen to my moans (🤣🤣🤣) every 3 months. I get my blood test from my local surgery and time it to 2 days before my CNS appointment…this means the CNS has my results in time and reduces my PSA anxiety.

I do wonder if the injection your GP did has worked. It’s very strange that you feel you’ve still got the old testo going? I get my injections in my belly(alternate sides) ,and when I enquired if it could be done elsewhere I was told the belly was the most effective.

I guess when you get your test results back you will then know what’s going on and hopefully get it sorted.

Derek

User
Posted 21 Mar 2024 at 22:39

As Lyn said, your Testosterone isn't low enough. There isn't a single definition of castrate level, it varies from 0.7 to 1.7 in different studies, but these medications assume 1.2, and should be able to keep your Testosterone below that, and usually below 1.0. This means your hormone therapy isn't working correctly. All sorts of possible reasons for this, such as that drug not working for you (which happens occasionally), injected wrongly, wrong dose used, or left too long between injections.

For Prostap, Zoladex, and Decapeptyl, this low level is reached at about 3 weeks after the first injection, and then stays that way. For Firmagon, the low level is reached in 2 days after the pair of loading dose injections.

User
Posted 22 Mar 2024 at 00:16

Thanks again, I’ve got my next injection on Tuesday, am going to insist on the stomach and see what subsequent results say and push for alternatives/ additions to bring it down further as required.

anyone have a view as to why oncologists aren’t more on the front foot on this sort of stuff? Just curious 🧐 

User
Posted 22 Mar 2024 at 09:21

Cheers Derek, as testosterone has come back as 2, low but not low enough I’m going to request that my next prostap (getting it next Tuesday) is injected into stomach not arm as was last time to see if that makes a difference. Thanks for your advice and best of luck 

User
Posted 22 Mar 2024 at 12:48

Originally Posted by: Online Community Member
anyone have a view as to why oncologists aren’t more on the front foot on this sort of stuff? Just curious

I think most oncos would be - it may just be your onco or nurse specialist :-/

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

User
Posted 22 Mar 2024 at 12:52

Originally Posted by: Online Community Member
Thanks again, I’ve got my next injection on Tuesday, am going to insist on the stomach and see what subsequent results say and push for alternatives/ additions to bring it down further as required.

Personally, I would be phoning the oncology nurse or the oncologist's secretary to ask whether the treatment needs to be changed now - once you have that injection on Tuesday, you have another 3 months of uncontrolled cancer to deal with and they can't change the injection mid-way through the 3 months. Also, check with the GP practice (or wherever you get the injection) that they definitely gave you the 3 month dose last time and not the 1 month dose by mistake. 

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

User
Posted 22 Mar 2024 at 13:47

Thanks Lyn, 

the gp administered the 3 month injection. 
My oncologist told me to go ahead with the same injection next week and another oncologist he works with told me that the results were satisfactory to continue as is.

however, as you say and having looked into it now my testosterone is too high at this stage of treatment  I’ve called my oncology nurse and left a message to discuss. 

I had read that chemo can spike PSA in the early weeks but there was no mention of HT in the paper and besides it’s clear elsewhere that the target for testosterone isn’t being achieved for me.

User
Posted 22 Mar 2024 at 14:33
Thanks for the clarification. Sometimes, you just have to trust that the experts know what they are doing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Apr 2024 at 13:13

Just had my oncology 3 week appointment, onco said things are going in the right direction. When I challenged and said testosterone was still too high and for too long after I’d been on the injections he said it was probably as I was coming to the end of the previous 3 month injection. When pushed further he said I wasn’t text book but continuing as is with chemo and current injections the best course. Suppliment injections with tablets? - no. Change hormone brand? - no point they are all same. Ct scan tomorrow no results until next appointment in 3 weeks. Adverse results likely to result in second line chemo. Radiotherapy, a certainty on the path to recovery talked about now as an option. Pretty depressing stuff! 

User
Posted 06 Apr 2024 at 15:08
Hello everyone. I've been reading this thread with interest.

Initially, I had six cycles of chemo followed by 37 fractions of RT for my locally advanced PC. I was put on 12-weekly Zoladex injections from the start following my diagnosis 28 months ago. I have been on Zoladex ever since.

My initial PSA was 18 but soon after treatment started it dropped to a level my oncologist described as 'barely detectable'. More recently my PSA has been doubling every couple of months while my testosterone has remained very low at <0.5. Currently, my PSA is 3.7. I had a recent PET scan that confirmed that the treatment had shrunk, but not eliminated, my PC. This was followed by an MRI scan which was inconclusive.

I am awaiting yet another PET scan but in the meantime, it's difficult not to worry about the unexplained rising PSA levels especially as my testosterone is so low. Understandably, my oncologist will not commit herself until she has studied the results of the upcoming scan. I would be grateful for any insight anyone has on this.

Thanks.

User
Posted 06 Apr 2024 at 15:49

My experience is very firmly that all hormone treatments are NOT the same. Prostap failed for me after a few months ( the tell -tales being increases in both PSA and testosterone). A switch to Zoladex, and a Bicalutamide boost, put me back on track.  As Lyn warned, I fell foul of having to wait out a 3 month Prostap jab knowing it was not helping.   

Edited by member 06 Apr 2024 at 15:50  | Reason: typo

User
Posted 06 Apr 2024 at 19:18

Thanks olefogey that’s really helpful info 

 
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