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

Notification

Error

1st PSA after surgery & Others

Email this conversation Print this conversation
User
Posted 23 Jul 2018 at 09:27

My PSA came at the level of 0,04 3 months after surgery. I had hoped for a lower mark.

I had the appointment with my doctor last Monday which is the 3 months' check after surgery.

He explained me then that as hospital protocol they start only doing anything if PSA rises to 0,1. And this is already lower than the 0,2 mark which is consider recurrence by international standards. Till 0,1 it is considered to be indectatable in the hosptal where I had surgery.

Also I had 1 mm positive margin in the right apex. My doctor continues to diminish this fact, because based on a swedish study they consider only statistical relevant if the positive margin is above 3 mm.

All my other status of the pathological report were clean, including 18 lymph nodes also removed during surgery.

Last, considering my situation included in a statistic they follow at teh hospital for Gleason 7 (4+3) and higher, a PT2 (my case) has 1/3 chances of nothing happening after surgery, so this is a high chance enough for them not to start adjuvant treatment unless there is the recurrence.

He sort of reasured me I am fine and I shouldn't worry. In October I am doing my second PSA test. I must say this does not comfort me fully, but I need to get on living without fear and need to put this over my shoulders for a few months.

Any comments?

About recovery from surgery, I only mention one point and that is that I am continent at month 3 after surgery which makes me very happy. I am not wearing pads anymore. I only use sometimes when I go out in the evenings for precautins and most of the times I through the pad away dry.

User
Posted 23 Jul 2018 at 10:06
Hi Paulo

I think your doctor is giving you sound advice for your circumstance and he sounds "switched on to recent developments" which is good.

Re the margin I believe the significance of it being small is that any cells left behind will have been killed by the trauma of the operation. The good news Re margins is that should any follow up radio therapy be required in the future positive margin increase the liklihood that this will be successful.

Really important you try not to worry, BUT keep vigilant, and make sure you follow up any future increase in PSA if it happens.

So try and have some fun now and forget about stuff until your next appointment.

User
Posted 23 Jul 2018 at 10:39

The 1mm isn’t what was left in your body, it is how near it was to the wax coating they put your excised prostate into to slice it up and inspect it.

See here for reassurance
https://www.hopkinsmedicine.org/brady-urology-institute/specialties/conditions-and-treatments/prostate-cancer/prostate-cancer-questions/understanding-surgical-margins-after-radical-prostatectomy

 

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

User
Posted 23 Jul 2018 at 18:06

Really pleased for you Paulo, it’s sounds a really positive future. Hoping I do as well after surgery, will hopefully have date tomorow after pre op assessment.

Rob

User
Posted 23 Jul 2018 at 21:24

Paulo. Those arn't bad numbers (I think I finally have to accept Lyn's advice) mine was 0.03. I was surprised to read such extensive removal of lymph nodes. My Surgeon said they do not do that routinely without cause and even a G 4+3 wouldn't convince my surgeon. I am 7 weeks post surgery. 3 Pads and ED (40% chance of recovery of E).

Take a closer look at your post surgery histology report. Look to see if they have drawn the margin limits to examine both Pre-Prostetic Fat infiltation and peri-prostatic fat infiltation. If not aske them if they can re examine the slides/specimen.

I understand the stress. From my first PSA reading until surgery I lost 8kg in weight and suffered serious sleep issues. I wanted to monitor my PSA weekly after surgery at which point my surgeon suggested he would refer me to councelling (he laughed) - apparently we all develope a necessary but sometimes over obsessive interest in PSA.

Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 24 Jul 2018 at 14:35
You must remember that the nomograms use data that is up to 10/15 years old and from many different countries. It may be that internationally, lots of people assume they are 'cured' once the op is over and done with and therefore do not have (or didn't have in the past) close monitoring and therefore miss the opportunity of SRT.

My dad had his op when he was 61 and an official letter from the NHS when he was 70 telling him that he was formally 'in remission'. The cancer came back when he was 74 but perhaps if he wasn't still having PSA tests he would never know until it spread?

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

User
Posted 24 Jul 2018 at 23:15

Originally Posted by: Online Community Member
You must remember that the nomograms use data that is up to 10/15 years old and from many different countries. It may be that internationally, lots of people assume they are 'cured' once the op is over and done with and therefore do not have (or didn't have in the past) close monitoring and therefore miss the opportunity of SRT.

My dad had his op when he was 61 and an official letter from the NHS when he was 70 telling him that he was formally 'in remission'. The cancer came back when he was 74 but perhaps if he wasn't still having PSA tests he would never know until it spread?

That particular nomogram is current and was designed to use the extra data from USPSA testing and to asess the benefits of early SRT. While no nomogram can predict individual outcomes they are invaluable when assessing relative risk associated with different choices.  I included this here because the nomogram supports the docs strategy not to take action until PSA is 0.1.

User
Posted 24 Jul 2018 at 23:26

Originally Posted by: Online Community Member
The country is Portugal.

Thanks for the nomogram.
It seems if I can get SRT after reaching 0.1 I can have 10% odds of having mets in 10 years. Strange is that if I simulate with "no margins" the odds of having mets increase till 14% Isn't this strange?

Make sure you understand the significance of margin status they are often quoted as clear, negative and positive.  If margins are negative ie clear of cancer the likely hood of SRT being successful is reduced. This is because if the margins are negative AND there is a biochemical recurrence the fact that the margins were clear means the PSA must be coming from prostate tissue that was outside the excised prostate. This means it is further away from the prostate bed and may not be I radiated by SRT.

So negative margins are good but are not so good if you have a biochemical recurrence and elect to have SRT.

Also don't forget you haven't had a biochemical recurrence (by any standard!) so all of this discussion is hypothetical. Hopefully it is reassuring and supports your docs approach.

 

Edited by member 24 Jul 2018 at 23:30  | Reason: Not specified

User
Posted 25 Jul 2018 at 15:37
Yes, that’s correct and includes the adrenal gland and some men have small amounts in the liver. My husband’s ‘normal’ PSA level has settled at between 0.09 and 0.11 for the last couple of years and that is with no prostate but he is a gym bunny and very sporty and also gets very stressed about some things so we assume his adrenaline keeps his PSA high 🤷🏼‍♀️

Interestingly, breast milk has a PSA of about 0.005 and a woman that has just had an orgasm has a similar level.

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

Show Most Thanked Posts
User
Posted 23 Jul 2018 at 10:06
Hi Paulo

I think your doctor is giving you sound advice for your circumstance and he sounds "switched on to recent developments" which is good.

Re the margin I believe the significance of it being small is that any cells left behind will have been killed by the trauma of the operation. The good news Re margins is that should any follow up radio therapy be required in the future positive margin increase the liklihood that this will be successful.

Really important you try not to worry, BUT keep vigilant, and make sure you follow up any future increase in PSA if it happens.

So try and have some fun now and forget about stuff until your next appointment.

User
Posted 23 Jul 2018 at 10:39

The 1mm isn’t what was left in your body, it is how near it was to the wax coating they put your excised prostate into to slice it up and inspect it.

See here for reassurance
https://www.hopkinsmedicine.org/brady-urology-institute/specialties/conditions-and-treatments/prostate-cancer/prostate-cancer-questions/understanding-surgical-margins-after-radical-prostatectomy

 

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

User
Posted 23 Jul 2018 at 18:06

Really pleased for you Paulo, it’s sounds a really positive future. Hoping I do as well after surgery, will hopefully have date tomorow after pre op assessment.

Rob

User
Posted 23 Jul 2018 at 21:24

Paulo. Those arn't bad numbers (I think I finally have to accept Lyn's advice) mine was 0.03. I was surprised to read such extensive removal of lymph nodes. My Surgeon said they do not do that routinely without cause and even a G 4+3 wouldn't convince my surgeon. I am 7 weeks post surgery. 3 Pads and ED (40% chance of recovery of E).

Take a closer look at your post surgery histology report. Look to see if they have drawn the margin limits to examine both Pre-Prostetic Fat infiltation and peri-prostatic fat infiltation. If not aske them if they can re examine the slides/specimen.

I understand the stress. From my first PSA reading until surgery I lost 8kg in weight and suffered serious sleep issues. I wanted to monitor my PSA weekly after surgery at which point my surgeon suggested he would refer me to councelling (he laughed) - apparently we all develope a necessary but sometimes over obsessive interest in PSA.

Fresh

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 23 Jul 2018 at 21:34

Originally Posted by: Online Community Member

Paulo. Those arn't bad numbers (I think I finally have to accept Lyn's advice) mine was 0.03. I was surprised to read such extensive removal of lymph nodes. My Surgeon said they do not do that routinely without cause and even a G 4+3 wouldn't convince my surgeon. 

Fresh

 

different hospitals / surgeons have different approaches. John’s uro only removes lymph nodes if there are suspicions. Our nearest cancer centre of excellence doesn’t routinely remove lymp nodes in Da Vinci RP, only in open RP. There are lots of members here who have had loads of lymph nodes harvested without any apparent explanation or indicators. It is another postcode lottery.   

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

User
Posted 24 Jul 2018 at 08:47

Rob, all the best for your pre-op assessment.

User
Posted 24 Jul 2018 at 09:15

Fresh, Lynn,

Thanks for your messages.

Prior surgery I was told I would have lymph nodes removal because they suspected I had extracapsular invasion, which at the end I didn't. Pathology report stated I had a PT2 and no capsular invasion and negative margins everywhere except one in the right apex. My doctor said that lymph nodes removal in cases like mine was normal procedure. He said that the first place where the cancer starts spreading is via lymph nodes.

I asked for a Decipher test - genoma - which is common in the USA but it is not the protocol here yet. Do you have this in the uK? So I wonder if they do also what Fresh is mentioning. I will ask though but as I am asking my doctor so many questions about what I read and hear in foruns that I wonder if he is not tyred of me. He came to me with good news :-) and I question back with suspicions which are obvious for me as one lives this once and not from the others fears, I guess. The report says though that there is also no vascular invasion as well as in seminal vesicles.

I did a 68GA-PSMA PET scan prior surgery that reported a 1/3 tumor presence in left side of the prostate extended to the right apex. The right side of the nerves were spared.

Paulo

 

 

Edited by member 24 Jul 2018 at 09:21  | Reason: Not specified

User
Posted 24 Jul 2018 at 11:54

Good news your cancer was detectable using the PSMA scan as this should mean any significant escape should have been detected already AND if it does com back the PSMA scan should provide a clear target for any radiotherapy.

What country are you in? Sounds like all PC sufferers should move there!

 

If you are still worrying about the 0.04 PSA the nomogram below may help accept any perceived risk from waiting until 0.1 for further treatment.

 

http://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/

 

Edited by member 24 Jul 2018 at 11:57  | Reason: Not specified

User
Posted 24 Jul 2018 at 13:30
The country is Portugal.

Thanks for the nomogram.

It seems if I can get SRT after reaching 0.1 I can have 10% odds of having mets in 10 years. Strange is that if I simulate with "no margins" the odds of having mets increase till 14% Isn't this strange?

User
Posted 24 Jul 2018 at 14:35
You must remember that the nomograms use data that is up to 10/15 years old and from many different countries. It may be that internationally, lots of people assume they are 'cured' once the op is over and done with and therefore do not have (or didn't have in the past) close monitoring and therefore miss the opportunity of SRT.

My dad had his op when he was 61 and an official letter from the NHS when he was 70 telling him that he was formally 'in remission'. The cancer came back when he was 74 but perhaps if he wasn't still having PSA tests he would never know until it spread?

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

User
Posted 24 Jul 2018 at 23:15

Originally Posted by: Online Community Member
You must remember that the nomograms use data that is up to 10/15 years old and from many different countries. It may be that internationally, lots of people assume they are 'cured' once the op is over and done with and therefore do not have (or didn't have in the past) close monitoring and therefore miss the opportunity of SRT.

My dad had his op when he was 61 and an official letter from the NHS when he was 70 telling him that he was formally 'in remission'. The cancer came back when he was 74 but perhaps if he wasn't still having PSA tests he would never know until it spread?

That particular nomogram is current and was designed to use the extra data from USPSA testing and to asess the benefits of early SRT. While no nomogram can predict individual outcomes they are invaluable when assessing relative risk associated with different choices.  I included this here because the nomogram supports the docs strategy not to take action until PSA is 0.1.

User
Posted 24 Jul 2018 at 23:26

Originally Posted by: Online Community Member
The country is Portugal.

Thanks for the nomogram.
It seems if I can get SRT after reaching 0.1 I can have 10% odds of having mets in 10 years. Strange is that if I simulate with "no margins" the odds of having mets increase till 14% Isn't this strange?

Make sure you understand the significance of margin status they are often quoted as clear, negative and positive.  If margins are negative ie clear of cancer the likely hood of SRT being successful is reduced. This is because if the margins are negative AND there is a biochemical recurrence the fact that the margins were clear means the PSA must be coming from prostate tissue that was outside the excised prostate. This means it is further away from the prostate bed and may not be I radiated by SRT.

So negative margins are good but are not so good if you have a biochemical recurrence and elect to have SRT.

Also don't forget you haven't had a biochemical recurrence (by any standard!) so all of this discussion is hypothetical. Hopefully it is reassuring and supports your docs approach.

 

Edited by member 24 Jul 2018 at 23:30  | Reason: Not specified

User
Posted 25 Jul 2018 at 10:52

Thanks Francij1

I got you. I also spoke with the doctor in the company I work for and she told me that PSA levels are produced by other cells / organs in the body apart from the prostate and they cannot tell what parts are pertaining prostate or residual or the other cells. So PSA being very low means at first the surgery was successful and the rest depends on how these cells produce PSA that can be higher in some peoplçe more than others. So important is how the next levels will be, as we know that.

Thank you for the time you dedicated and all the best to you.

Edited by member 25 Jul 2018 at 11:18  | Reason: Not specified

User
Posted 25 Jul 2018 at 15:37
Yes, that’s correct and includes the adrenal gland and some men have small amounts in the liver. My husband’s ‘normal’ PSA level has settled at between 0.09 and 0.11 for the last couple of years and that is with no prostate but he is a gym bunny and very sporty and also gets very stressed about some things so we assume his adrenaline keeps his PSA high 🤷🏼‍♀️

Interestingly, breast milk has a PSA of about 0.005 and a woman that has just had an orgasm has a similar level.

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

User
Posted 25 Jul 2018 at 15:56
Uff :-)

I will try to relax now. Thanks

 
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