I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Updated psa

Email this conversation Print this conversation
User
Posted 13 Jan 2019 at 18:01

Hi everyone wondered   what   you  all thought of my latest psa result. up to 0.04. from 0.03 in July last year. am i right to be happy or is this continuing upward trend, however  low   , reason to worry. r.p. october 15 . negative margins , post op psa 0.01. thanks for any input.

User
Posted 15 Jan 2019 at 00:05
No that’s still the wrong way round francij. Negative margins are good news and positive margins are a bit more of a concern.

Negative - no cancerous material found

Positive - there are indicators of cancer at the margin

Andy had negative margins so his outlook is better than 80% ... it was the PNI that the onco was a bit twitchy about.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2019 at 09:50

Yes ckd=kidney disease. i am down at 12% now so have been advised will most likely require dialysis at some point beginning this year.

User
Posted 14 Jan 2019 at 17:22

Hi , yes they have just began liasing but outcome of that not know to me yet. i would guess that transplant would be ruled out because of the autoimmune  drugs needed after transplant. not had op yet for p.d. dialysis (nocturnal home) as they think egfr stable at 12. O afree that it is something of a ” double whammy ” though and difficult mentally if you are not strong. i do get down sometimes.   thanks for your interesting  imput and good luck for the future ......Andy.

User
Posted 14 Jan 2019 at 23:34
No falling out Andy, that was my genuine apology to francij 😢
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jan 2019 at 19:53

Originally Posted by: Online Community Member


Not ”they” . only franci! and why start the coversation with ”well” ? trying to be a smart guy maybe? like you perhaps. no need to be rude. ....Andy. 



 


Wow, i was just trying to point out why Blackball was being used. I certainly wasnt being a smart guy. 


i think theres only one person being rude

Show Most Thanked Posts
User
Posted 13 Jan 2019 at 23:08
It could just be your normal body levels settling - there are tiny amounts of PSA produced elsewhere in the body apart from the prostate. John’s PSA has crept up to 0.1 over a period of time and now bounces a bit - higher in August each year and then goes back down for the rest of the year. The onco says that he may just produce more ‘healthy’ PSA than other men and the August bounce does coincide with the annual trip to France cycling.

Are you on 6 monthly testing? The next couple of tests will give you more idea of what’s happening.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jan 2019 at 23:17
Hi Lyn, yes 6monthly tests now. Prefer this , allows me to put it all to back of my mind for a while . They did offer me radiotherapy last year but I declined. Because I had clear margins there was a good chance the cancer was not at prostate bed. Thank you for your reply......Andy
User
Posted 14 Jan 2019 at 00:27
0.04 and still rising is a concern but 3 years down the line from your op probably worth waiting for another test cycle?

I put your figures in the nomogram here:
https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

You came out at 80% chance of NO progression 6 years after salvage RT, if you had had a positive margin this rises to 85% so you have a very good chance of successful RT even with negative margins.

BTW I had to inflate your PSA to 0.2 as the nomogram won't take anything less than that because of course you can't have BCR officially until it gets to 0.2! Interestingly they now count 0.05 as the "undetectable level".

User
Posted 14 Jan 2019 at 00:57

Thank you for taking time to help. are you saying that i should not put off having r.t. much longer in that case?

Edited by member 14 Jan 2019 at 09:47  | Reason: Not specified

User
Posted 14 Jan 2019 at 03:53
Of the two hospitals I have attended, one a billion-pound super-hospital, it only tests down to <0.1 and anything under that is classed as undetectable, and the other, The Royal Marsden, which is the no.1 cancer hospital in Britain, only tests down to 0.04.

So if you had had your tests at either of those you wouldn’t have anything to worry about!

I have spoken to two oncologists and one surgeon about ‘super-sensitive assay’ i.e. multiple decimal points in PSA results, and two said it was a waste of time, and one said it could be useful in some cases. Probably not in yours.

What is of concern is consistent rises over a number of tests over months or years. Bear in mind biochemical recurrence is not officially classed as being present until the reading is over 0.2.

Best of luck.

Cheers, John
User
Posted 14 Jan 2019 at 08:51

Not sure what CKD is? Kidney disease?? That may make it a good idea to avoid RT and with levels that a lot of places class as undetectable opting for salvage at this level needs careful consideration.


If you are unsure I would pay for a second opinion if you can..


 


 

Edited by member 14 Jan 2019 at 08:52  | Reason: Not specified

User
Posted 14 Jan 2019 at 09:50

Yes ckd=kidney disease. i am down at 12% now so have been advised will most likely require dialysis at some point beginning this year.

User
Posted 14 Jan 2019 at 09:55
Not your most responsible post ever, francij .... basically you have put the fear of God into Andy but you had to pretend the PSA was 5 times higher than it actually is so that you could put it into a nomogram which will, as a result, have computed a much faster progression time than it really is?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2019 at 13:05
Hi
Just read your post and see you have CKD5, tony has this his egfr is at 10% , he is a lot further along than you are on his journey. last year his oncologist was thinking about rt if his psa remained steady unfortunately it continued rising so decided not to, he is now on chemo and is doing quite well on it. Tony is not yet on dialysis but has had a fistula done in readiness, it is so hard when you have both these diseases together and having to weigh up the treatments one against the other. Have they said that you cannot have a transplant ?, tony has been told he can't because of active cancer. Do your renal specialist and oncologist lease with each other ? it is good if they do, his renal specialist has said he would rather Tony carries on with the chemo even if it makes the ckd worse as he thinks the cancer treatment is more important than staying off dialysis for longer.

good luck with what you decide about RT

regards barbara
User
Posted 14 Jan 2019 at 17:22

Hi , yes they have just began liasing but outcome of that not know to me yet. i would guess that transplant would be ruled out because of the autoimmune  drugs needed after transplant. not had op yet for p.d. dialysis (nocturnal home) as they think egfr stable at 12. O afree that it is something of a ” double whammy ” though and difficult mentally if you are not strong. i do get down sometimes.   thanks for your interesting  imput and good luck for the future ......Andy.

User
Posted 14 Jan 2019 at 21:10

Originally Posted by: Online Community Member
Not your most responsible post ever, francij .... basically you have put the fear of God into Andy but you had to pretend the PSA was 5 times higher than it actually is so that you could put it into a nomogram which will, as a result, have computed a much faster progression time than it really is?


Lyn I was trying to reassure him that even with a much worse PSA salvage RT was worthwhile as that is what his onco has recommended, the nomogram shows this clearly. He seemed to be under the impression that it was a waste of time if you have negative margins, clearly it isn't.


I also pointed out that even the nomogram said he was undetectable.


However unlike you I believe there is value in the supersentive assay for post RP surviellance even when it doesn't say "less than".


I suggested a second opinion because he is worrying about going against his oncos advice, a second opinion may or may not reassure him and help him come to terms with his decision. I did this because it has helped me many times on my journey and I wish I had done for my late father.


Sometimes you can be rather cutting and self righteous Lyn and there should be space for more than one opinion on this forum - that is after all the point of it.

User
Posted 14 Jan 2019 at 21:54

I am sorry, I don’t mean to be cutting but like everyone else on here, have to remember that the way something is written is not the way it might be read by others and that, of course, is sometimes harder for me than for most. It applies to you as well though - I don’t believe others will understand it in the way you intended, partly because you have muddled up the positive and negative margins thing.


I have copied here the reply you gave Andy last year - you seem to have had a complete turnaround?


Posted 03 Jul 2018 at 17:51
Hi it would help if you could update your profile with dates and PSA readings and your final pathology report. It is also essential you confirm there was no lymph node or seminal vesicle involvement as this ups the anti in favour of early radiation.


Assuming your cancer was the "common one" and your PSA is only 0.03 2 and a half years later whatever you have is incredibly slow growing so even if you never saw another doctor again there is a good chance you would die from something else.


This nomogram may help you consider the risk associated with waiting until 0.1


http://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/


I ran your stats as I know them and waiting until 0.1 rather than 0.03 made 1% difference on the outcomes at 5 and 10 years.


The bad news is while prostatectomy has a 20 to 30 percent failure rate salvage radiation is 50/50 so you probably want to avoid it if you can..


Fingers crossed your PSA will gave gone down like mine did after it hit 0.03 !!!

Edited by member 14 Jan 2019 at 21:56  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2019 at 23:24

Thanks everyone , please dont fall out. opinions are differing and thats fine. my own view is that as i had clear margins , no seminal vessel involvement and no node (13taken out) involvement it would be like playing ”spot the ball” radiation! hoping to get lucky when it realistically could be growing in an entirely different area. im more than happy to wait until my next appointment (July) before i commit to anything. wishing you all well.....Andy.

User
Posted 14 Jan 2019 at 23:34
No falling out Andy, that was my genuine apology to francij 😢
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Jan 2019 at 23:35

Lyn my view hasn't changed? No need to apologise to me you are a legend!!


Blackball your theory regarding negative margins is not supported by the statistics. Negative margins do reduce the success rate for SRT but with your stats and assuming you waited until 0.2 to pull the trigger the likely hood of being in remission at 6 years reduces to by a few percent to 80%

Edited by member 14 Jan 2019 at 23:41  | Reason: Not specified

User
Posted 15 Jan 2019 at 00:05
No that’s still the wrong way round francij. Negative margins are good news and positive margins are a bit more of a concern.

Negative - no cancerous material found

Positive - there are indicators of cancer at the margin

Andy had negative margins so his outlook is better than 80% ... it was the PNI that the onco was a bit twitchy about.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jan 2019 at 07:42
Yes Lyn negative margins are a desirable outcome of RP.

BUT

They increase the risk associated with salvage therapy because it means that with an increasing PSA post op whatever is producing the increase is at least a surgeons margin further away from the prostate. This is why the stats on salvage therapy with negative margins are slightly worse than those associated with positive margins.

Hence Blackballs nomogram figure is 80% with and 85% without ie 4 out of 5 guys with his stats and negative margins will still have remission at 6 years with negative margins.
User
Posted 15 Jan 2019 at 09:02

I see where you are coming from but I think PNI negates that - is there a nomogram for negative margin / positive PNI? John had positive margin / positive PNI and his chance of remission was given as 45%

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jan 2019 at 11:39

I was positive  pni ........  ANDY 

User
Posted 15 Jan 2019 at 23:37
Well PNI is still being debated and my understanding of its significance is as a predictor of more advanced disease and adverse features (EPE, SVI, high Gleason etc) at biopsy.
As Blackball has had an RRP and has clear margins he knows he no longer has PNI as it's in the bin. This paper Sums up some of the thinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3353268/

User
Posted 15 Jan 2019 at 23:54

WELL , who are you addressing here? if its me , although it does not read like you are , my   name is obviously NOT ”blackball”!!!

User
Posted 16 Jan 2019 at 06:47

Originally Posted by: Online Community Member


WELL , who are you addressing here? if its me , although it does not read like you are , my   name is obviously NOT ”blackball”!!!



 


Maybe you should change your profile name as clearly thats what they are referencing


 


Bri 

User
Posted 16 Jan 2019 at 09:23

Not ”they” . only franci! and why start the coversation with ”well” ? trying to be a smart guy maybe? like you perhaps. no need to be rude. ....Andy. 

User
Posted 16 Jan 2019 at 13:36
The 'well' was to me I think, Andy, to indicate a continuing discussion about positive and negative margins. No-one set out to offend you; we are just the two members that responded in a hope that we could reassure you.

Cancer diagnosis and the never ending need to monitor PSA alongside the constant worry about whether there will be a recurrence can make anyone a bit twitchy. I am certain no-one here meant to be rude to you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jan 2019 at 14:45

He was talking about me in a third party . it is my post after all. i could sense an undertone of something i didnt quite like. thank you for continually addressing me by my name and for your kind , helpful words , as always. maybe franci could p.m. you  to continue your conversation? 🙂......Andy

User
Posted 16 Jan 2019 at 15:52
I have made an exception for you. I usually stick to a rule of using the avatar name that someone has chosen - the forum is now easily searchable by non-members via Google and most of us don't want our real name to be used in posts for fear of accidentally being identified by family members/ colleagues / curious or vexatious observers.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jan 2019 at 15:54

PS I think that you are doing francij a disservice - all I see is a member that was trying to help you.


I don't engage with private messages; I don't like that PCUK added this facility so francij knows that there is no point sending me one :-/ 


Hopefully, other members will be along to give you their perspective on your situation. 

Edited by member 16 Jan 2019 at 15:57  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jan 2019 at 19:32
Was just trying to provide answers to your questions. Sorry I got into a debate with Lyneyre.

Cheers

User
Posted 16 Jan 2019 at 19:53

Originally Posted by: Online Community Member


Not ”they” . only franci! and why start the coversation with ”well” ? trying to be a smart guy maybe? like you perhaps. no need to be rude. ....Andy. 



 


Wow, i was just trying to point out why Blackball was being used. I certainly wasnt being a smart guy. 


i think theres only one person being rude

User
Posted 22 Feb 2019 at 01:05

Penis pumps? 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK