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User
Posted 27 Mar 2018 at 10:07

I had RP (open ) 8th January2018. Received a letter from surgeon 7th Feb saying final pathological exam confirms the presence of prostate cancer Gleason 4+3=7 (high risk) which had invaded the adjacent seminal vesicle glands but has been completely excised. I took this to mean that cancer had been removed. I saw surgeon yesterday and at first he said latest PSA test was ok but when I asked what score he said 000.3 and that he was hoping for 000.0 and that cancer may return! In which case I would be on a course of RT. I now have to wait a further 3 months for new PSA to see what happens. I am worried that if cancer is to return, 3 months is a long time to wait. Can't PSA be done earlier. He also said that I was at stage T3 which sounded serious. My wife and I got the feeling surgeon didn't like answering our questions. Can anyone out there please help and explain if I am in danger. I am waiting for Clinical Nurse to call me back at the moment for an explanation.

Many thanks.

 

User
Posted 27 Mar 2018 at 11:31

Bollinge has misunderstood and not given you a correct response.

Your PSA of 0.3 indicates that the surgeon was not able to remove all the cancer - some stray cells are probably still hanging around where the seminal vesicles were. There is no need to do another PSA test earlier than the 3 months; the specialist is looking for whether it falls, rises or stays the same as this helps him to know where the cancer cells are.

You are not in danger though and there is no urgency - best to recover a bit more from the op and then have more treatment if it is needed. Stage 3 just means that rather than the cancer being fully contained, it had already spread a little bit outside the prostate (in your case to the seminal vesicles). You were also correct to write that your final pathology was high risk - that is determined by your G(4+3) plus seminal vesicle involvement.

I wouldn’t be too surprised that the surgeon seemed a bit reluctant to talk about it - I imagine most surgeons are very disappointed when it turns out that the op was not wholly successful, particularly as they have to publish their stats.

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

User
Posted 27 Mar 2018 at 11:38

Matron: Post deleted.
Regards, John

Barry wrote PSA 000.3 which confused me.

Did Barry mean 0.3 or what?

Edited by member 27 Mar 2018 at 13:59  | Reason: Not specified

User
Posted 27 Mar 2018 at 13:30

Hi Barry

It seems to me that you are writing your figures in a strange manner. Are you sure it’s not 0.003 which is classed as undetectable. You are T3 because of the invasion of the seminal vessels, but these have been removed during your open surgery. But as Lyn says there is no need for any further action for 3 months.

I was Gleason (4+3) 7 and T3b I had my open RP in May 2006. Read in to that what you want.

Cheers
Stu

Edited by member 27 Mar 2018 at 16:44  | Reason: Not specified

User
Posted 27 Mar 2018 at 17:20

Thanks for response All. PSA reading was .0032 according to Clinical Nurse. does this make a difference?

User
Posted 27 Mar 2018 at 17:39

ha ha ha - that's brilliant news! Yes, it makes a massive difference - go and have champagne, plan a holiday etc etc - you couldn't really dream of a better PSA score at this point!

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

User
Posted 29 Mar 2018 at 09:59

Anything less than 0.1 is classed as undetectable and these ultra sensitive tests to 2 or 3 decimal places have been discredited a little bit so nothing for you to worry about - get the champagne open and have a great holiday.

You will only need to worry if your future PSA goes over 0.2 or you have three successive rises over 0.1 .... 0.0anything is a good result!

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

User
Posted 29 Mar 2018 at 10:04

PS you can buy incontinence swim trunks online or waterproof inserts that go inside your own shorts - look at the Age UK website or this company

https://www.respond.co.uk/product-category/swimwear/continence-swimwear/

Edited by member 29 Mar 2018 at 10:05  | Reason: Not specified

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

User
Posted 29 Mar 2018 at 10:06

Hi Barry

0.032 is still very good. As Kevan points out anything below 0.1 is ok and considered undetectable. I thought it very strange to see the 0.0002. The machines can’t read to the Fourth decimal place. Even to the Third place is irrelevant.

You’ll most likely be dry by the time your holiday comes about, but if not Tena do an ultra thin pad called Extra Light, Boots stock them. I find them fine under swimming shorts.

Have a great holiday and try to relax, this can be a very slow journey that you have unfortunately embarked upon.

Cheers
Stu

User
Posted 29 Mar 2018 at 13:57

Arthur...

I think Lyn is referring to those who have had their prostate completely removed...

As far as I can see you had RT? ....so still have remains of a prostate ....albeit a little shrivelled lol! 

Your prostate will generate more PSA as it recovers from RT ....so different than those who have had a RP where no or very little PSA should be recorded after surgery as there is no prostate there to generate any....unless prostate cancer cells are still active somewhere ...

Lyn will no doubt be along in due coarse to put you straight ..

Best Wishes 

Luther

User
Posted 29 Mar 2018 at 14:33

Luther is quite correct - you still have a prostate Arthur, and the healthy cells will be regenerating which in turn produces some PSA. For an irradiated prostate, biochemical recurrence is defined as 2.0 or above but even then the point of deciding the cancer is back is not the same point at which further treatment would necessarily be started - some oncos would wait until 5, 10 or even 20 before re-starting HT.

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

Show Most Thanked Posts
User
Posted 27 Mar 2018 at 11:31

Bollinge has misunderstood and not given you a correct response.

Your PSA of 0.3 indicates that the surgeon was not able to remove all the cancer - some stray cells are probably still hanging around where the seminal vesicles were. There is no need to do another PSA test earlier than the 3 months; the specialist is looking for whether it falls, rises or stays the same as this helps him to know where the cancer cells are.

You are not in danger though and there is no urgency - best to recover a bit more from the op and then have more treatment if it is needed. Stage 3 just means that rather than the cancer being fully contained, it had already spread a little bit outside the prostate (in your case to the seminal vesicles). You were also correct to write that your final pathology was high risk - that is determined by your G(4+3) plus seminal vesicle involvement.

I wouldn’t be too surprised that the surgeon seemed a bit reluctant to talk about it - I imagine most surgeons are very disappointed when it turns out that the op was not wholly successful, particularly as they have to publish their stats.

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

User
Posted 27 Mar 2018 at 11:38

Matron: Post deleted.
Regards, John

Barry wrote PSA 000.3 which confused me.

Did Barry mean 0.3 or what?

Edited by member 27 Mar 2018 at 13:59  | Reason: Not specified

User
Posted 27 Mar 2018 at 13:30

Hi Barry

It seems to me that you are writing your figures in a strange manner. Are you sure it’s not 0.003 which is classed as undetectable. You are T3 because of the invasion of the seminal vessels, but these have been removed during your open surgery. But as Lyn says there is no need for any further action for 3 months.

I was Gleason (4+3) 7 and T3b I had my open RP in May 2006. Read in to that what you want.

Cheers
Stu

Edited by member 27 Mar 2018 at 16:44  | Reason: Not specified

User
Posted 27 Mar 2018 at 15:10

SVI is highly indicative of recurrence :-(

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

User
Posted 27 Mar 2018 at 16:48

Don’t I know it.

User
Posted 27 Mar 2018 at 17:20

Thanks for response All. PSA reading was .0032 according to Clinical Nurse. does this make a difference?

User
Posted 27 Mar 2018 at 17:39

ha ha ha - that's brilliant news! Yes, it makes a massive difference - go and have champagne, plan a holiday etc etc - you couldn't really dream of a better PSA score at this point!

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

User
Posted 27 Mar 2018 at 17:45
Hi Barry

The decimal points are important and as Stu said previously if it is 0.003 then it is classed as undetectable. I think I am right in saying that anything less than 0.1 is classed as undetectable, so if your PSA is confirmed as 0.003 then Happy Days. This is a great result so enjoy.

All the best

Kevan

User
Posted 27 Mar 2018 at 17:59

Hi Barry

Phew! ...you really must pay attention to your decimal points lol! 

0.0032 Sounds pretty good to me too! 

Best wishes 
Luther 

User
Posted 28 Mar 2018 at 00:55
My oncologist told me that 0.003 is the lowest reading the machine in Slough can register. It's a great result.

Ulsterman

User
Posted 29 Mar 2018 at 09:34

I feel such an idiot!! Thank you so much for all responses. I didn't realise the dot made such a difference!! The champagne is on hold I fear. The correct PSA reading is now confirmed as 0.032. Please People what does this mean?

Either way I have decided to book a holiday as my wife (Carer x) needs it. Has anyone suggestions about wearing pads with swim shorts, or do I have to keep jumping in the pool every time I leak.

Many thanks for your time sorry for confusion.

User
Posted 29 Mar 2018 at 09:59

Anything less than 0.1 is classed as undetectable and these ultra sensitive tests to 2 or 3 decimal places have been discredited a little bit so nothing for you to worry about - get the champagne open and have a great holiday.

You will only need to worry if your future PSA goes over 0.2 or you have three successive rises over 0.1 .... 0.0anything is a good result!

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

User
Posted 29 Mar 2018 at 10:04

PS you can buy incontinence swim trunks online or waterproof inserts that go inside your own shorts - look at the Age UK website or this company

https://www.respond.co.uk/product-category/swimwear/continence-swimwear/

Edited by member 29 Mar 2018 at 10:05  | Reason: Not specified

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

User
Posted 29 Mar 2018 at 10:06

Hi Barry

0.032 is still very good. As Kevan points out anything below 0.1 is ok and considered undetectable. I thought it very strange to see the 0.0002. The machines can’t read to the Fourth decimal place. Even to the Third place is irrelevant.

You’ll most likely be dry by the time your holiday comes about, but if not Tena do an ultra thin pad called Extra Light, Boots stock them. I find them fine under swimming shorts.

Have a great holiday and try to relax, this can be a very slow journey that you have unfortunately embarked upon.

Cheers
Stu

User
Posted 29 Mar 2018 at 10:08

I see Lyn has also replied whilst I was writing my post.

User
Posted 29 Mar 2018 at 13:21
Originally Posted by: Online Community Member

Anything less than 0.1 is classed as undetectable and these ultra sensitive tests to 2 or 3 decimal places have been discredited a little bit so nothing for you to worry about - get the champagne open and have a great holiday.

You will only need to worry if your future PSA goes over 0.2 or you have three successive rises over 0.1 .... 0.0anything is a good result!

Lyn,

I’m particularly interested in the above part of your earlier post, my PSA results have been as follows:

04/08/16. PSA 0.01.

01/12/16. PSA 0.002.

30/03/17. PSA 0.04 now to go to appointment in 6 months

28/09/17. PSA now 0.08.

22/03/17. PSA now 0.16 next appointment in 4 months not 6

My oncologist said she wasn’t concerned but expected the results to plateau out and would only take action if my PSA readings went over 2.0, so should I be concerned if it goes over 0.2 and have had 3 successive rises as you say?

Thanks,

Arthur

User
Posted 29 Mar 2018 at 13:57

Arthur...

I think Lyn is referring to those who have had their prostate completely removed...

As far as I can see you had RT? ....so still have remains of a prostate ....albeit a little shrivelled lol! 

Your prostate will generate more PSA as it recovers from RT ....so different than those who have had a RP where no or very little PSA should be recorded after surgery as there is no prostate there to generate any....unless prostate cancer cells are still active somewhere ...

Lyn will no doubt be along in due coarse to put you straight ..

Best Wishes 

Luther

User
Posted 29 Mar 2018 at 14:33

Luther is quite correct - you still have a prostate Arthur, and the healthy cells will be regenerating which in turn produces some PSA. For an irradiated prostate, biochemical recurrence is defined as 2.0 or above but even then the point of deciding the cancer is back is not the same point at which further treatment would necessarily be started - some oncos would wait until 5, 10 or even 20 before re-starting HT.

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

User
Posted 07 Mar 2019 at 18:37

Hi All been a while, latest PSA reading 0.188. Should I be worried further. Test done February19  last Consultant appt November 18 next appt May 19 is this too long? PSA rising on every test. Consultant says all cancer cells may not have been removed.

Help would be appreciated.

Many thanks

Barry

 
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