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psa rising after rp

User
Posted 22 Jul 2023 at 16:50

Hello, I am from vienna and new to the forum, I joined because I read conversations here which were very helpful to me, and I live in austria, and we do not have a community like this.

I am concerned about my rising psa, which startet to rise about 1 year after the Rp. I was diagnosed with prostate cancer at age 46 two years ago.

my pre prostatectomy psa was 2.8 ng/ml and I had nervesparing prostatectomy da vinci in august 2021,my surgery pathology: gleason 7  3+4 (30%was 4), pT2c, L0, V0, Pn1, R0 so I had negative margins

and the psa since surgery was

oct 2021 0.01

dec 2021 0.01

march 2022 0.01

june 2022   0.02

sept 2022   0.03

I had a psma pet mri in november 22 which showed no lesions  (I will not do this again because I have a panic disorder and it was really unbearable for me to be in the mri device for one hour) so maybe a psma pet CT next time but in vienna you have to wait for this quite long,

psa

dec 2022         0.03

march2023       0.05

end of may 2023  0.05

june 15th 2023     0.07 ( the psa went from 0.05 to 0.07 in 2 weeks)

 I have the next appointment with my oncologist at the akh(main hospital in vienna for Pca) in september 5th 2023, then the next psa will be taken. currently my oncologist ist on holiday so I cant speak to him. In our last appointment in may the oncologist said that a radiation is likely if the psa rises again and the psa then at the end of may was 0.05, in june I decided to take another psa by myself and that came at 0.07 (the lab of the urologist) , and next meeting with the oncologist is in sept2023. (I hope this was not too confusing)

Because I found some conversations about rising psa here I wanted to ask you what you think about my situation ~?

and I would be thankful for your views...

Is there still a possibility that the psa settles down at some point?does this look like a local recurrence, mets..?

I hope that its ok that i am not from the uk, and I wanna say big thank you to all of you sharing helpful thoughts and views,

have a good day

raoul

 

 

 

Edited by member 23 Jul 2023 at 12:38  | Reason: Not specified

User
Posted 23 Jul 2023 at 20:58

Hi Raoul,

I'm sorry that I can't help with advice regarding your PSA results, but I would like to reassure you that your English is excellent.

Best wishes,

JedSee.

User
Posted 25 Jul 2023 at 12:03

hello JedSee,

i can read your private message and tried to message you directly to the private message but i cant do it yet, because ive not participated  enough in conversations, i dont know how long this takes...

have agood day

 

User
Posted 26 Jul 2023 at 18:06

Hi Raoul13,

It looks like Dave's suggestion might have worked.  I have received your private message and have replied privately,

Best wishes,

JedSee.

User
Posted 30 Jul 2023 at 18:04

You may be right in your assumption but I thought I would mention my experience of pin-prick extraction just in case he had not. With the pin-prick extraction you have to fill up a small phial with your blood, ensuring in the process that you do not not rub the extraction site against the side of the bottle. Not an easy process I can tell you and is probably why when you  buy the kit you are given 3 pin-prick needles.

 

Ivan

Edited by member 30 Jul 2023 at 18:06  | Reason: Not specified

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User
Posted 23 Jul 2023 at 14:13
Although it is perfectly understandable that you are worried about the increase in PSA - however I believe that the oncologists won't become concerned until the level increases above 0.2 - 3 times more than you currently have. At that point they will discuss the treatment options available to you
User
Posted 23 Jul 2023 at 16:32

thanks for your reply, i guess the oncologist is little bit concerned because of my age and the pT2c and yes those psa tests everytime make me feel very anxious, then short relief or not... still alow myself to hope that the psa can settle down somewhere and have a long siesta..

i hope my english is not too bad, i watch a lot of sports with my son like tennis and boxing in english but i am not so sure it helps ~~

 

 

 

 

User
Posted 23 Jul 2023 at 20:58

Hi Raoul,

I'm sorry that I can't help with advice regarding your PSA results, but I would like to reassure you that your English is excellent.

Best wishes,

JedSee.

User
Posted 23 Jul 2023 at 21:45

thank you JedSee,

all the best to you too

Edited by member 23 Jul 2023 at 21:55  | Reason: Not specified

User
Posted 23 Jul 2023 at 22:06

Hi Raoul13. I've recently returned from a mountain walking holiday in the Austrian Tirol. A beautiful and spectacular area but it was rather exhausting in the current heatwave. In the UK they don't normally attempt a PSMA scan with such a low PSA. I had a PSMA PET scan a few months after surgery when my PSA was around 0.4. It didn't show any indications as to where the residual cancer was hiding. However to cut a long story short, I eventually had salvage radiotherapy to the prostate bed along with six months hormone therapy. That was 9 months ago and currently my PSA remains undetectable (fingers crossed).

Your PSA readings are still very low and only rising slowly. Your post RP histology is also good, as it is indicating the cancer was entirely contained within the prostate. Hence it is unlikely to have spread further afield. It's probably just a few cells left over in the prostate bed which have started a recurrence. 

User
Posted 24 Jul 2023 at 01:27

Hi Raoul.

I don't know if you have seen this thread.

https://community.prostatecanceruk.org/posts/t29546-Am-I-correct#post283639

The figures are all a little higher than yours, but it is a similar pattern. Lyn's comments are always worth reading.

Dave

User
Posted 24 Jul 2023 at 11:39

to JedSee,

i read your profile, and i have/had the same pelvicfloor issues after surgery (regarding the functional things...)i took me more than a year to recover, but i did more or less if you want to exchange or write me, how does this work? because i cant yet send you a message cos i m new here ...

Edited by member 24 Jul 2023 at 11:42  | Reason: Not specified

User
Posted 24 Jul 2023 at 11:54

Hello ChrisBroms,   i like tirol also, my favorite place i ve been there was the black lake(schwarzsee) ,its a lake wood enclosed and partially moor and think the water was not too warm,but the water is nearly deep dark or even black sometimes 

my worry cocerning the psa is, because i had negative margins that some cells left the prostate pre surgery and in the histo it didnt show... thank you for your view 

wish you all the best too

Edited by member 24 Jul 2023 at 11:59  | Reason: Not specified

User
Posted 24 Jul 2023 at 11:57

thanks Dave i will read it soon

User
Posted 24 Jul 2023 at 12:12

Raoul13. We walked part of the Adlerweg between Sank Johann and Innsbruck.

It is quite possible the PSA reading is a result of some PCa cells remaining in the prostate bed. If that is the case then it is very treatable with radiotherapy. Good luck. 

User
Posted 24 Jul 2023 at 19:51

Thanks Raoul13,

I have sent you a private message, as you have requested.

Best wishes,

JedSee.

User
Posted 25 Jul 2023 at 12:03

hello JedSee,

i can read your private message and tried to message you directly to the private message but i cant do it yet, because ive not participated  enough in conversations, i dont know how long this takes...

have agood day

 

User
Posted 25 Jul 2023 at 19:37

Thanks Raoul13,

I had hoped that by sending you a private message you might have been able to reply, but it seems that the administrators of this website know best 😀.

Take care of yourself.

JedSee.

User
Posted 25 Jul 2023 at 21:28

Hi Raoul it is about 10 or 12 posts before you can send private messages. You are up to 8 posts so far. Try replying to this one four times, that might work.

Dave

User
Posted 26 Jul 2023 at 10:53

Ok, thank you  Dave

User
Posted 26 Jul 2023 at 18:06

Hi Raoul13,

It looks like Dave's suggestion might have worked.  I have received your private message and have replied privately,

Best wishes,

JedSee.

User
Posted 27 Jul 2023 at 16:54

Hi Raoul13,

It's impressive that you did your own digital rectal examination and your urologist said it made a difference.

At very low levels a small change in psa can show as a big effect.   For example 0.025 might be recorded as 0.02.  0.026 might be recorded as 0.03.  The increase from 0.05 to 0.07 might not be as small an increase but it might not be as large as well.   I kept telling myself these things when my psa rose.

The other factor is that you said you did your last psa test yourself.  Do you mean you went to a different hospital.  It's recommended that psa tests are done by the same laboratory as the calibration might be different and the results can be a bit different, so if that's the case the 0.07 would not be directly comparable although it could be indicative.

It tends to be said that a psma scan has a low chance of finding anything at 0.2 and my hospital is adamant that 0.5 is the point they'll do it.  So having a scan at 0.03 is optimistic although not unknown. 

When you say you had a panic attack during the scan I don't know if there's anything to help that such as a tranquiliser or even a mild anaesthetic. It's all part of the balance in decision making.  However it looks like you're going to be given treatment without detecting it.  These decisions are often personal or oncologist guided and it's never easy.  

All the best, Peter

User
Posted 29 Jul 2023 at 12:13

hello Peter,

thanks for your thoughts. yes the rectal examination i did by myself was maybe just a feeling i had, but i could feel that the gland on the left backside was a little bit harder and i told my uro. it was like grabbing on a very small bone hump...he did a ultrasound and he saw something but nothing too specific. (but i heard that inflammation could also be quite hard)

the psa test at end of  may 0.05 was in the hospital, and because my oncologist did 2 tests in 1 week(both were 0,05) i guessed that maybe he possibly expected a small jump. then i did 2 tests by myself in 2 different labs and one came back 0.068 and the other 0.07 both around 2 weeks after the 0.05 on the 30th of may.  so maybe the next 2 or 3 tests will show more of the trend. i definitly will do them in the hospital again.

regarding the psma pet ct/mri the onc said at my 0.05 the chances are reallye low to find something..

for psma pet mri i already had alprazolam and diazepam to stay calm but nevertheless was unbearble, the psma pet ct i would do, but as i said the waiting for that is long.

all the best and thankyou, raoul~

 

User
Posted 30 Jul 2023 at 12:37

From my experience of pin-prick PSA tests that you send off to be analysed, they are always different, by quite a large margin, from those extracted by syringe from your arm. For example, on 25/03/18 my pin-prick PSA was shown to be 6.26, but one in May 18 taken by a doctor via  a syringe was found to be 3.58. Similarly, a pin-prick PSA reading on 06/01/21 was recorded as 7.54, but the doctors extraction on 10/03/21 came out at 5.32.

 

Ivan

Edited by member 30 Jul 2023 at 17:58  | Reason: Not specified

User
Posted 30 Jul 2023 at 17:35

That's interesting OhDear, I hadn't interpreted doing it myself as doing it via a pin prick.   I've never heard of that before and had assumed Raoul had gone to a separate blood clinic.   A hospital takes a syringe full of blood and I'd assumed that amount is needed to detect the microscopic amounts of psa in a low reading.  To have only a pin prick of blood sounds inadequate although equipment gets better and we often don't hear about it.

User
Posted 30 Jul 2023 at 18:03

I think the premise is that orchiectomy will last for as long as first-line HT would have done but with slightly fewer side effects. When it fails, second line drugs such as Abi, Enza or Apalutimide would still be available

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

User
Posted 30 Jul 2023 at 18:04

You may be right in your assumption but I thought I would mention my experience of pin-prick extraction just in case he had not. With the pin-prick extraction you have to fill up a small phial with your blood, ensuring in the process that you do not not rub the extraction site against the side of the bottle. Not an easy process I can tell you and is probably why when you  buy the kit you are given 3 pin-prick needles.

 

Ivan

Edited by member 30 Jul 2023 at 18:06  | Reason: Not specified

User
Posted 30 Jul 2023 at 18:44

Hi Lyn, thanks for your comment although I think it's a reply to what I wrote on another thread around the same time as writing on this.  Peter

User
Posted 30 Jul 2023 at 21:29

hello OhDear, if i understand correctly pinprick means to take the blood from the finger? that was not the case with me. I just did them in two differnet bloodlabs (with syringe)and not in hospital, and i said "by myself" because i paid for it...

thanks raoul

Edited by member 30 Jul 2023 at 21:31  | Reason: Not specified

User
Posted 30 Jul 2023 at 22:50

Originally Posted by: Online Community Member

Hi Lyn, thanks for your comment although I think it's a reply to what I wrote on another thread around the same time as writing on this.  Peter

Something weird going on - not sure either it is the forum or my phone??? (Or too many orifices?) 

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

User
Posted 31 Jul 2023 at 06:37

Yes, Raoul, pin-prick means taking blood from the finger.

 

But as previously mentioned, using different blood labs for testing can often result in small differences in the result.

 

Ivan

 
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