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User
Posted 19 May 2021 at 11:43

Just had my annual PSA, result quoted as "It's 0.1 so as this is less than 3 that is normal!" 

Frantically trying to find out if the actual result has a less than!!

User
Posted 20 May 2021 at 12:02
I think that's an excellent letter and it is certainly something I would write myself.

Will be interesting to see the reply.

Could you not contact the oncologists secretary and have a chat? Maybe that would instigate a referral?

User
Posted 20 May 2021 at 12:22

Francij1 

Am I being reasonable? Or has the PSA monster taken over? 

I think you are right to be proactive. My PSA rise was very steady for the first two and a half years. My PSA then went from 0.13 to 0.27 in the space of six months.

Like you, my consultant said a breach of 0.1 would trigger a referral back to him. As it happened I have never been discharged back to my GP.

Thanks Chris

 

User
Posted 20 May 2021 at 15:37
I wonder why some GPs (who in my experience know very little about PCa) are so stingy about a PSA blood test form? Mine is not, and in any event I have a photocopier, so I take a test whenever I want.

I am up to six monthly intervals now, and all have been <0.1 since my surgery three years ago.

In your situation, I certainly wouldn’t want to wait another year for a subsequent test, and it sounds like you have a dope for GP!

Let’s hope your missive to your practice manager (mine is useless, but the GPs are great) has some effect.

Why would a doctor put you through all this anguish and anxiety, to the extent that you have to contact a cancer website to discuss it with the likes of us, when as I understand it a PSA form is a keystroke away on his computer, and I think they cost the NHS eight quid?

I guess you won’t be flavour of the month in the receptionists’ office from now on, the same as me, but I’m always warmly welcomed in the various Doctors’ rooms as invariably we have a laugh.

I would put money that this is down to an absent < !

Best of luck.

Cheers, John.

User
Posted 20 May 2021 at 16:22
franci,

good letter, crap service. I might be tempted to amend the final paragraph a little ....

"Please can you clarify in writing why a reading of 0.1 is considered normal for a man with no prostate. To be normal in my case the reading should be <0.1 as it was last year. I am requesting that you refer me back to the oncologist as stated in his letter dated @@/@@/@@ - if you are declining that request, please set out your reason in writing."

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

User
Posted 21 May 2021 at 21:54

I suffered some adverse effects from salvage radiation therapy and it still didn't eradicate the cancer. A scan may have meant a different treatment plan for me without having the damage SRT caused.

I would definitely push for a scan, but it maybe too early at the moment.

Thanks Chris

 

 

 

User
Posted 24 May 2021 at 16:31
So as you were, men; stand at ease.

As often stated, it may never happen. But if your PSA did rise to 0.1 and your onco was considering salvage RT, his proposal seems sensible ... your PSA behaviour would be classic for stray cells in the prostate bed.

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

User
Posted 25 May 2021 at 10:08

Might still possibly be raised by the COVID vaccination.

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User
Posted 19 May 2021 at 13:00
My last result from GP via text from reception said normal less than .02. All my previous had been <.01 for three years then a couple of .02. I phoned and checked, she checked with GP, definitely less than .02. so now I'm thinking OK the lab changed the way they report, no problem.

I went to the GP for something else three months later and commented that they must have must have changed the assay for PSA because now only reporting down to .02. He looked at his screen "No my mistake no less than sign it's .02"

They just don't realise how important it is to us! I challenge everything they say.

Cheers

Bill

User
Posted 19 May 2021 at 14:48
Just had confirmation 0.1 so looks like I'm back in the game ☹️
User
Posted 19 May 2021 at 14:59
In my experience doctors’ receptionists (if you can ever get them to answer the phone because they’re ‘so busy’, having shut down the surgery for ten months...never had a maths lesson involving the < less than symbol, so it’s all Greek to them.

Moreover, the EMIS Patient Access app seems to be incapable of displaying that symbol on your medical record as well.

So I think your best bet is to wait for your next test and see if there is any change. After all, what can you do about it, other than worry needlessly?

Cheers, John.

User
Posted 19 May 2021 at 16:12
But I'm very good at it! Thanks Bollinge sensible suggestion...
User
Posted 20 May 2021 at 03:28
Just had my template Biopsy scheduled for Tuesday of this week cancelled because receptionist at my local GP Surgery decided my urine sample should be dip tested whereas it should have been sent to lab for a culture test as required by UCLH. This has caused many arrangements to be changed. I have written a letter of complaint to the Practice Manager.
Barry
User
Posted 20 May 2021 at 09:34
So the GP is still insisting 0.1 is a normal reading for a man with no prostate, won't retest, won't discus the lab test parameters and won't even talk to me, hasn't even recommend a change in test frequency which is presently annual.

I have penned the following letter to the practice manager:

"I have just had my annual PSA test (Prostatectomy 2015) and the result is 0.1.

This has been checked by the doctor and I have been told it is normal. Unfortunately I have a letter from my oncologist that says if it reaches 0.1 I need to be referred back for further tests.

Please can you clarify in writing why I am not being referred and why a reading of 0.1 is considered normal for a man with no prostate. To be normal in my case the reading should be <0.1 as it was last year."

Am I being reasonable? Or has the PSA monster taken over? So wishing I had stayed under the consultant for another year!

User
Posted 20 May 2021 at 12:02
I think that's an excellent letter and it is certainly something I would write myself.

Will be interesting to see the reply.

Could you not contact the oncologists secretary and have a chat? Maybe that would instigate a referral?

User
Posted 20 May 2021 at 12:22

Francij1 

Am I being reasonable? Or has the PSA monster taken over? 

I think you are right to be proactive. My PSA rise was very steady for the first two and a half years. My PSA then went from 0.13 to 0.27 in the space of six months.

Like you, my consultant said a breach of 0.1 would trigger a referral back to him. As it happened I have never been discharged back to my GP.

Thanks Chris

 

User
Posted 20 May 2021 at 15:37
I wonder why some GPs (who in my experience know very little about PCa) are so stingy about a PSA blood test form? Mine is not, and in any event I have a photocopier, so I take a test whenever I want.

I am up to six monthly intervals now, and all have been <0.1 since my surgery three years ago.

In your situation, I certainly wouldn’t want to wait another year for a subsequent test, and it sounds like you have a dope for GP!

Let’s hope your missive to your practice manager (mine is useless, but the GPs are great) has some effect.

Why would a doctor put you through all this anguish and anxiety, to the extent that you have to contact a cancer website to discuss it with the likes of us, when as I understand it a PSA form is a keystroke away on his computer, and I think they cost the NHS eight quid?

I guess you won’t be flavour of the month in the receptionists’ office from now on, the same as me, but I’m always warmly welcomed in the various Doctors’ rooms as invariably we have a laugh.

I would put money that this is down to an absent < !

Best of luck.

Cheers, John.

User
Posted 20 May 2021 at 16:22
franci,

good letter, crap service. I might be tempted to amend the final paragraph a little ....

"Please can you clarify in writing why a reading of 0.1 is considered normal for a man with no prostate. To be normal in my case the reading should be <0.1 as it was last year. I am requesting that you refer me back to the oncologist as stated in his letter dated @@/@@/@@ - if you are declining that request, please set out your reason in writing."

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

User
Posted 21 May 2021 at 14:33

I had similar with 2 ad hoc tests at the GP.  In both cases I had to go elsewhere to determine what the level the hospital was reading to.   In one case it was the lowest the hospital did so I assumed the < was missing but in the other it was higher than their normal cut off so I was told to get another test at the hospital I normally go to and it was alright.

Prostate Cancer UK should start a campaign for the missing < and amendment of the standard GP's note for those with no prostate.   We could all write to our MPs.   All the best, Peter

 

User
Posted 21 May 2021 at 18:32
Ok so the letter worked, I got a call today from an actual GP who explained the error was because of Covid, so many PSA Tests bla bla bla.

Unfortunately she confirmed it's 0.1 ☹️, went on to confirm I could have another test and a referral if I wanted. Anyway had the test this morning and seeing the ONCO on Monday, will be interesting to see what they say.

I suspect it will be wait 3 months and have another!

Question is do I nag for a PSMA scan while I still have private medical cover? Or am I in danger of overreacting? After all it was only a G6? Your considered thoughts would be appreciated.

User
Posted 21 May 2021 at 21:54

I suffered some adverse effects from salvage radiation therapy and it still didn't eradicate the cancer. A scan may have meant a different treatment plan for me without having the damage SRT caused.

I would definitely push for a scan, but it maybe too early at the moment.

Thanks Chris

 

 

 

User
Posted 22 May 2021 at 00:57
I think yes, ask about a PET scan but why push specifically for PSMA? What if your oncogist feels that choline would be better than Gallium? What if Axumin / FACBC is being piloted in your area? Or the onco advises that choline could be arranged sooner and locally but he would be willing to refer you elsewhere if the choline scan came back clear?

Being open minded about the type of tracer may give you more options or more speedy outcome.

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

User
Posted 22 May 2021 at 05:41

PSMA is the most sensitive that's readily available, and you are below the minimum PSA level where that's normally performed (0.2). The others are even less likely to show anything at that level.

It may be that they will wait for it to get to 0.2 or 0.5 (depending how old the PSMA scanner is). It also depends if your hospital has the facility - those that do are much more inclined to request scans, and at lower PSA levels,  than those which have to send the patient off to another hospital.

Edited by member 22 May 2021 at 05:43  | Reason: Not specified

User
Posted 24 May 2021 at 15:51
Retest came back <0.1!

Onco wants a retest in 3 months using uPSA.

Interestingly he said he would want to treat as soon as it's a confirmed 0.1 on uPSA (0.100?).

He also said he would treat prostate bed AND lymph nodes ideally using MRI guided SABR.

He said he did not advise waiting to 0.2 or scanning (unless it jumped to 0.4).

Thoughts? he is an NHS onco although I am seeing him privately as I have cover through work.

User
Posted 24 May 2021 at 16:31
So as you were, men; stand at ease.

As often stated, it may never happen. But if your PSA did rise to 0.1 and your onco was considering salvage RT, his proposal seems sensible ... your PSA behaviour would be classic for stray cells in the prostate bed.

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

User
Posted 24 May 2021 at 18:14

Out of interest, was the 0.1 reading taken within a month of a COVID vaccination?

User
Posted 24 May 2021 at 23:27

Originally Posted by: Online Community Member

Out of interest, was the 0.1 reading taken within a month of a COVID vaccination?

Nope 6 weeks

User
Posted 25 May 2021 at 10:08

Might still possibly be raised by the COVID vaccination.

 
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