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Raised psa concerns

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User
Posted 29 Oct 2020 at 15:27

Hi all, been a while since my last post. Just been trying to get some normality back in my life. I’ve been back in work for 2 weeks now and enjoying being out and about. I had another psa test done on Friday and the result came back today as 0.2. My first psa test post surgery was 0.2 which prompted my surgeon to book me for a PET scan. A few days later he called to say that the Welsh NHS had moved their scan criteria from 0.2 to 0.5 so therefore I didn’t meet their requirement for the scan. I booked another psa test on advice from my surgeon and that came back more favourable at 0.1. As I was booked to see my surgeon on November 4th my surgeon asked me to get another psa test done this is the one I’ve had results for today of 0.2. As you can imagine the wind has been firmly knocked from my sails and I feel very disappointed and in limbo, because I’m not going to be able to get the scan I need to determine the treatment options unless I can pay privately to get it done. My anxiety levels are beyond at the moment .

Carl

User
Posted 29 Oct 2020 at 15:38
Even if you could get the scan, at such a low PSA reading the chance of them being able to see where the stray cells are is very low. Your surgeon will probably use all the information from your pathology to determine where the cells might be - r will refer you to oncology who will do the same. As the pathology indicated that the cancer had been near your bladder, they will probably recommend that you have adjuvant RT to the pelvic area.

John had his RP 10 years ago and they had to remove a bit of his bladder and remodel - he had RT & HT 8 years ago and is fine.

There is no reason to panic and think everything has to be done urgently - apart from anything else, your PSA doesn't seem to be rising at any speed so it isn't like the cancer is marching around your body.

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

User
Posted 29 Oct 2020 at 16:11

Hi Carl,  Sorry to read about your problems.   Your psa was 0.2 in August and 0.2 at 8 weeks later which must be worrying but it hasn't moved which is a good thing.   Why it was 0.1 in between we don't know.  I'd be wondering about having another test or asking if there is second decimal in the result.  If the 0.1 was 0.18 or if the 0.2 is 0.16 it might not sound as odd.

There have been a few discussions about what can be seen by scans at lower psa levels.  Although 'Ulsterman' had scans and RT at 0.023 which is regarded as an exception.  Perhaps worth looking up his posts.

His early conversation about scans is here:

https://community.prostatecanceruk.org/posts/t14513-PSMA-scan-for-PSA-of-0-023#post247369

All the best,
Peter

 

 

User
Posted 29 Oct 2020 at 20:00
Many labs report to only 1 decimal place once the PSA is detectable - so the 0.1 could have been 0.14 and the 0.2 could have been 0.15

It would also be useful to confirm that the test (which came back as 0.1) was processed at the same lab as the other two

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

User
Posted 29 Oct 2020 at 22:55

Hi Carlos,

I noticed you had not posted for a while and was hoping all was going well for you. It’s good to hear you’re back at work and have some ‘normality’ in your life. So sorry to hear you are having to deal with this anxiety.  Hopefully Lyn and Peter’s replies will somehow help to ease your worries a little.

All the best going forward.

Ange x

User
Posted 29 Oct 2020 at 23:34

Hi Carl.

It's good to hear from you. Sorry to hear about your worrisome PSA levels. 😟

I think trying to enjoy a bit of 'normality', as far as the current situation allows, is a very good approach.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 30 Oct 2020 at 09:55

Hi Carl, good to hear from you but sorry to read about your PSA. It is extremely stressful when you get these results. As others have said the fact it isn’t rising fast is a good thing but an appointment with an oncologist seems sensible.

Ido4

User
Posted 30 Oct 2020 at 13:18

In my example I was trying to point out that we don't know what 0,2 means.  It could mean between 0.11 and 2 or 0.15 to 0.24.   The latter sounds more likely so asking would be useful.  It doesn't seem fair if the difference between 0.1 and 0.2 can be 0.01 and you have moved between the two twice causing you extra concern.  That it moved could mean you are near the transition but we don't know.

Edited by member 30 Oct 2020 at 13:21  | Reason: Not specified

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User
Posted 29 Oct 2020 at 15:38
Even if you could get the scan, at such a low PSA reading the chance of them being able to see where the stray cells are is very low. Your surgeon will probably use all the information from your pathology to determine where the cells might be - r will refer you to oncology who will do the same. As the pathology indicated that the cancer had been near your bladder, they will probably recommend that you have adjuvant RT to the pelvic area.

John had his RP 10 years ago and they had to remove a bit of his bladder and remodel - he had RT & HT 8 years ago and is fine.

There is no reason to panic and think everything has to be done urgently - apart from anything else, your PSA doesn't seem to be rising at any speed so it isn't like the cancer is marching around your body.

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

User
Posted 29 Oct 2020 at 16:11

Hi Carl,  Sorry to read about your problems.   Your psa was 0.2 in August and 0.2 at 8 weeks later which must be worrying but it hasn't moved which is a good thing.   Why it was 0.1 in between we don't know.  I'd be wondering about having another test or asking if there is second decimal in the result.  If the 0.1 was 0.18 or if the 0.2 is 0.16 it might not sound as odd.

There have been a few discussions about what can be seen by scans at lower psa levels.  Although 'Ulsterman' had scans and RT at 0.023 which is regarded as an exception.  Perhaps worth looking up his posts.

His early conversation about scans is here:

https://community.prostatecanceruk.org/posts/t14513-PSMA-scan-for-PSA-of-0-023#post247369

All the best,
Peter

 

 

User
Posted 29 Oct 2020 at 20:00
Many labs report to only 1 decimal place once the PSA is detectable - so the 0.1 could have been 0.14 and the 0.2 could have been 0.15

It would also be useful to confirm that the test (which came back as 0.1) was processed at the same lab as the other two

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

User
Posted 29 Oct 2020 at 22:55

Hi Carlos,

I noticed you had not posted for a while and was hoping all was going well for you. It’s good to hear you’re back at work and have some ‘normality’ in your life. So sorry to hear you are having to deal with this anxiety.  Hopefully Lyn and Peter’s replies will somehow help to ease your worries a little.

All the best going forward.

Ange x

User
Posted 29 Oct 2020 at 23:34

Hi Carl.

It's good to hear from you. Sorry to hear about your worrisome PSA levels. 😟

I think trying to enjoy a bit of 'normality', as far as the current situation allows, is a very good approach.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 30 Oct 2020 at 09:55

Hi Carl, good to hear from you but sorry to read about your PSA. It is extremely stressful when you get these results. As others have said the fact it isn’t rising fast is a good thing but an appointment with an oncologist seems sensible.

Ido4

User
Posted 30 Oct 2020 at 13:18

In my example I was trying to point out that we don't know what 0,2 means.  It could mean between 0.11 and 2 or 0.15 to 0.24.   The latter sounds more likely so asking would be useful.  It doesn't seem fair if the difference between 0.1 and 0.2 can be 0.01 and you have moved between the two twice causing you extra concern.  That it moved could mean you are near the transition but we don't know.

Edited by member 30 Oct 2020 at 13:21  | Reason: Not specified

User
Posted 30 Oct 2020 at 19:26

Hopefully I will find out on weds at my appointment with my surgeon. I’ve got a lot of questions to ask. I’m hoping that I can just be monitored for the next few months so that I can get a resemblance of a normal life back.

Carl.

 
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