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User
Posted 05 Mar 2024 at 15:10

So it was time for my 3 month PSA today after my RP in May 23 and although my post RP was <0.00, it had risen to 0.12 in December.
I had the blood test today at 10:00am and just got the results emailed to me. Now, the last meeting with the urologist said that I would go for salvage radiotherapy if my PSA exceeded 0.20 which is fair enough HOWEVER, 2 guesses as to what it is today........ yep, 0.19!!!!

Bugger!

Anyway, consult on Friday morning and hopefully I can persuade her to get me started as obviously in 3 months time it will be over 0.20. 

User
Posted 08 Mar 2024 at 12:15

So just got back from the meeting with my urologist and her first comment was that although the threshold was 0.20, my last PSA was 0.19 and that was close enough to start the RT process.
So she has a meeting with the onco team next Wednesday and will refer me to the senior oncologist and they will then contact me to arrange for a first meeting. This will be to explain the procedures etc - she didn't have any information about what the treatment would be/how many etc as that's down to the oncologist.


She did ask me how my Caverject was going and then handed me a new prescription for another 12 months supply LOL


Here in France they also offer free transport too and from the hospital using private ambulance cars, for the RT appointments, but she said that I was OK to drive after the procedure - so they pay me mileage instead - couldn't quite believe that.

Edited by member 08 Mar 2024 at 12:32  | Reason: speling

User
Posted 05 Mar 2024 at 23:32
Your testosterone level is irrelevant so no, you don't need another blood test.

I think I would be scandalised if she doesn't just refer you straight to oncology on Friday - there is no justification for waiting another 3 months. By the time the oncology dept receive your referral and set up an appointment, you will be at or above 0.2 anyway.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Mar 2024 at 07:37

Steve, my post op histology  in 2024 was not great, my PSA took nearly three years to reach around 0.2. I didn't have HT with the salvage RT in 2017 and I had " the educated guess" SRT without a PSMA scan. My PSMA scans in the last two years did not show anything in the prostate bed but two separate scans found cancer in two lymph nodes. Seeing nothing don't mean nothing is there.


Would I have been better off having HT with the SRT would it have stopped or slowed the spread to the lymph nodes ?


My first SABR treatment in 2022 was without HT, my second SABR treatment in 2023 was with six months of bicalutamide.


Presumably you can stop the HT if it gets too much for you.


Are they intending to let the PSA rise and then give you a PSMA scan ? At the time of my salvage RT the consultant said he would be criticised for letting the PSA rise above 0.3 , things seem to have changed since then. 


Thanks Chris 

User
Posted 08 Mar 2024 at 21:24
It all seems a bit arbitrary to me with how treatment is decided. My PSA was suddenly 1.2 after an RP in 2020. The Gp did not think there was any problem !! I pushed for a referral to oncology and was seen very quickly, PET scan and now SABR therapy planned as the scan found cells in the pelvic area. My oncoligist told me that the PET scan often doesn't pick up anything if your PSA is still quite low. Who knows what to believe.!! We just have to trust and keep vigilant and push the medics for action. I have had a lot of experience in dealing with health issues and my advice to you all is just to fight your own corner and persist and persist.

It has worked for both myself and my wife.

Good luck to you all.
User
Posted 05 Mar 2024 at 15:10

So it was time for my 3 month PSA today after my RP in May 23 and although my post RP was <0.00, it had risen to 0.12 in December.
I had the blood test today at 10:00am and just got the results emailed to me. Now, the last meeting with the urologist said that I would go for salvage radiotherapy if my PSA exceeded 0.20 which is fair enough HOWEVER, 2 guesses as to what it is today........ yep, 0.19!!!!

Bugger!

Anyway, consult on Friday morning and hopefully I can persuade her to get me started as obviously in 3 months time it will be over 0.20. 

User
Posted 05 Mar 2024 at 18:46

Thanks all - I have certainly already asked that only HT if absolutely necessary but we will see what she says on Friday.
Quick question is did they test for Testosterone levels before prescribing HT? Is that another blood test if so?


I should have also made it clearer that "bugger" was because it wasn't 0.20, not because it had risen to 0.19 hahaha

Edited by member 05 Mar 2024 at 18:48  | Reason: Not specified

User
Posted 06 Mar 2024 at 07:25

Thanks and you are both right I hope - no reason to delay. As soon as I got the 0.12 back in December it was obvious that there was something still there (and the histology report basically said there was) and so I just want(ed) the next procedure(s) to start as soon as possible - now we have 2 points on the curve it should start.


If HT is needed, maybe it will be short term - I had a menopausal wife for 5 years and I never did fully understand the 'hot flush' and I am kinda wishing that maybe I should have been a bit more sympathetic LOL

Edited by member 06 Mar 2024 at 07:25  | Reason: Not specified

User
Posted 06 Mar 2024 at 08:45
Thanks Chris

I'm under the French health care system so things may be different here - but from my conversations, 0.2 was the trigger for SRT but I don't know yet whether the rate of increase will trigger HT - I'll be discussing that on Friday and trying to get an angle on how beneficial she sees that being, if needed.
I don't anticipate a PSMA scan as the threshold for that here is 0.5 so very unlikely. My final histology report was G4+5=9 T3aN0M0 so I remain hopeful that it's contained within the prostate bed - but time will tell. I'm not freaking out about it. :)
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User
Posted 05 Mar 2024 at 16:47

Ey up Steve,


I'm sorry to hear about the slight rise, but hang tight buddy.

User
Posted 05 Mar 2024 at 17:19

Sorry to hear that Steve. 


I found SRT pretty Straightforward, but then I didn't have HT. Guessing you'll know more on your consultation. 


Good luck. 


Kev.

User
Posted 05 Mar 2024 at 18:02

Hi Steve,


Sorry to hear your news but at least you’ve got a plan B which will hopefully kill off any of the buggers that are left. Maybe you can avoid having HT, I will keep my fingers crossed for you🤞


Derek

User
Posted 05 Mar 2024 at 18:46

Thanks all - I have certainly already asked that only HT if absolutely necessary but we will see what she says on Friday.
Quick question is did they test for Testosterone levels before prescribing HT? Is that another blood test if so?


I should have also made it clearer that "bugger" was because it wasn't 0.20, not because it had risen to 0.19 hahaha

Edited by member 05 Mar 2024 at 18:48  | Reason: Not specified

User
Posted 05 Mar 2024 at 20:33
Not what you would have wanted Steve, but it seems things were heading that way. Several of us here have had salvage RT and managed it OK. You will have to see what they say about HT; I suspect that with PSA rising in less than a year they will recommend it quite strongly.

Good luck!
User
Posted 05 Mar 2024 at 23:32
Your testosterone level is irrelevant so no, you don't need another blood test.

I think I would be scandalised if she doesn't just refer you straight to oncology on Friday - there is no justification for waiting another 3 months. By the time the oncology dept receive your referral and set up an appointment, you will be at or above 0.2 anyway.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Mar 2024 at 07:25

Thanks and you are both right I hope - no reason to delay. As soon as I got the 0.12 back in December it was obvious that there was something still there (and the histology report basically said there was) and so I just want(ed) the next procedure(s) to start as soon as possible - now we have 2 points on the curve it should start.


If HT is needed, maybe it will be short term - I had a menopausal wife for 5 years and I never did fully understand the 'hot flush' and I am kinda wishing that maybe I should have been a bit more sympathetic LOL

Edited by member 06 Mar 2024 at 07:25  | Reason: Not specified

User
Posted 06 Mar 2024 at 07:37

Steve, my post op histology  in 2024 was not great, my PSA took nearly three years to reach around 0.2. I didn't have HT with the salvage RT in 2017 and I had " the educated guess" SRT without a PSMA scan. My PSMA scans in the last two years did not show anything in the prostate bed but two separate scans found cancer in two lymph nodes. Seeing nothing don't mean nothing is there.


Would I have been better off having HT with the SRT would it have stopped or slowed the spread to the lymph nodes ?


My first SABR treatment in 2022 was without HT, my second SABR treatment in 2023 was with six months of bicalutamide.


Presumably you can stop the HT if it gets too much for you.


Are they intending to let the PSA rise and then give you a PSMA scan ? At the time of my salvage RT the consultant said he would be criticised for letting the PSA rise above 0.3 , things seem to have changed since then. 


Thanks Chris 

User
Posted 06 Mar 2024 at 08:45
Thanks Chris

I'm under the French health care system so things may be different here - but from my conversations, 0.2 was the trigger for SRT but I don't know yet whether the rate of increase will trigger HT - I'll be discussing that on Friday and trying to get an angle on how beneficial she sees that being, if needed.
I don't anticipate a PSMA scan as the threshold for that here is 0.5 so very unlikely. My final histology report was G4+5=9 T3aN0M0 so I remain hopeful that it's contained within the prostate bed - but time will tell. I'm not freaking out about it. :)
User
Posted 07 Mar 2024 at 20:45

Sorry to hear that, Steve86.  I hope you get a clear plan of treatment soon.


Best wishes,


JedSee.

User
Posted 07 Mar 2024 at 21:23
Good luck for tomorrow Steve; think we’ll be closely following in your tracks. PSA due next week - any rise we’ve been told and off to oncology for RT.
User
Posted 08 Mar 2024 at 12:15

So just got back from the meeting with my urologist and her first comment was that although the threshold was 0.20, my last PSA was 0.19 and that was close enough to start the RT process.
So she has a meeting with the onco team next Wednesday and will refer me to the senior oncologist and they will then contact me to arrange for a first meeting. This will be to explain the procedures etc - she didn't have any information about what the treatment would be/how many etc as that's down to the oncologist.


She did ask me how my Caverject was going and then handed me a new prescription for another 12 months supply LOL


Here in France they also offer free transport too and from the hospital using private ambulance cars, for the RT appointments, but she said that I was OK to drive after the procedure - so they pay me mileage instead - couldn't quite believe that.

Edited by member 08 Mar 2024 at 12:32  | Reason: speling

User
Posted 08 Mar 2024 at 12:29

Good news on both counts Steve, hopefully you can get started on your treatment soon🤞


Derek

User
Posted 08 Mar 2024 at 17:34

Sounds like a good plan Steve. Fingers crossed for nil side effects and getting rid of the bugger once and for all. 

User
Posted 08 Mar 2024 at 18:43

That’s good you have been seen and have a plan. Dh’s psa was obviously rising. It was 0.01 for 5 years following brachytherapy. Then started to slowly creep up. We spoke to the consultant when it was 1.3 he said they’d see him once it got to 2.1 Then 6 months later it was 2.0. Phoned again and they said no, it has to be 2.1 or above, he said change to 3 monthly tests. 3 months later it was 2.7 so he finally had scans etc. I don’t know why they wouldn’t see him at 2.0 silly really. It was obvious it was going up. Another 3 months and it was 4.9 

User
Posted 08 Mar 2024 at 21:24
It all seems a bit arbitrary to me with how treatment is decided. My PSA was suddenly 1.2 after an RP in 2020. The Gp did not think there was any problem !! I pushed for a referral to oncology and was seen very quickly, PET scan and now SABR therapy planned as the scan found cells in the pelvic area. My oncoligist told me that the PET scan often doesn't pick up anything if your PSA is still quite low. Who knows what to believe.!! We just have to trust and keep vigilant and push the medics for action. I have had a lot of experience in dealing with health issues and my advice to you all is just to fight your own corner and persist and persist.

It has worked for both myself and my wife.

Good luck to you all.
User
Posted 08 Mar 2024 at 23:22

Jackson, if I understand it correctly you and wiosal had different primary treatments. After surgery 0.2 usually the trigger for action, after RT type treatment roughly 2.0 + Nadir is the trigger for action. As you have said in your bio your GP seemed to be ignorant to your situation.


We see far too many times that GP surgeries do not understand the significance of PSA results after treatment.


I have had two separate lots of SABR treatment to two separate lymph nodes.


Hope your treatment goes well.


Thanks Chris 

User
Posted 09 Mar 2024 at 06:29

Chris….yes  know they both had different treatment and RP has a much lower psa referral. But I just meant dh was point one below the psa needed for referral (the same as Jackson) but they still insisted he wait until over 2.1 even though he’d had at least 6 consecutive rises. I don’t supppse it would have made a lot if difference. But he could have started HT sooner as it was 4.9 by the time he started. 

User
Posted 09 Mar 2024 at 08:26
When I read some of these stories and from what I understand of the GP system in the UK (I have been out of it for a few years) I have to say that I am grateful that I am seen by consultants who are specialists in their fields. My local GP who is a very nice chap is in reality just a pill dispenser - if it is anything more complex then he makes an immediate referral to the specialist and we go online to make the appointment which of course might be 2-3 months unless it's cancer related.
GPs just cannot be expected to keep all of the required knowledge in their heads or have the time to fully assess the next step in treatment and should not be making decisions not to refer upwards.

Even my urologist referred me upwards to oncology once the PSA threshold was met and would not discuss treatments or timeframes with me as that wasn't her speciality.

So as Jackson said, sometimes you have to stand your ground.
User
Posted 09 Mar 2024 at 09:57

Steve, I have flagged up the lack of knowledge on post treatment PSA results on numerous occasions at our surgery, but it makes no difference. They close the surgery most Thursday afternoons for staff training. How long does it take to train someone to read a lab report correctly. 


One GP asked why I was having a PSA test if I didn't have a prostate. The senior partner said that was just a weakness of that GP.


I often post that we should all know our trigger level and be proactive with getting tests done and never accept "it's normal".


I think Jackson's situation was complicated by him moving. No doubt the effects of COVID on the NHS didn't help.


At one point in my treatment my trigger level was 1.0, a PSA test came back at 0.99 and the GP said no further action required.


Thanks Chris 


 

 
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