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The presence of perineural infiltration

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User
Posted 01 Jan 2019 at 12:13

Hello  

My husband had a radical prostatectomy last October.  

My question relates to the existence of perineural infiltration in extraprostatic surroundings  He was a gleason (3+4), had PSA 4,9 and was upgraded to T3a after surgery, which was very unexpected. I am afraid of the consequences of the perineural infiltration both before and after surgery. Histology showed negative margin. But is this enough? Should he have additional treatment? PSA is undetectable, but I am still worried.  He is only 51.  

Thank you for any response. 

User
Posted 01 Jan 2019 at 16:53
Penelope, for goodness' sake stop worrying. What is there to treat with an undetectable PSA? Get on with life and rejoice at your and his good fortune!

AC

User
Posted 01 Jan 2019 at 17:28

Dear Penny 

my husbands pathology gleason etc is exactly the same. Michael was diagnosed in April and had surgery on 12 th of June . He was 54 at the time of surgery and no symptoms . Raised PsA of 8.4 was found on a routine health check.

he has had 3 tests now with psa of less thab .002. i still worry so i know how you feel. however, until there is an offical BCR which hopefully for both our men there will not be i have been very stern with myself and only allow myself to worry the day of the psa test until the results the next day . otheriwse this will take over your life. 

i know its difficult as i am an eternal worrier but i am training myself not to . it is possible :)

take care and happy new year . 

Edited by member 01 Jan 2019 at 17:29  | Reason: Not specified

User
Posted 01 Jan 2019 at 18:08
Unfortunately, this is your new normal; it may seem difficult to imagine right now but you will eventually learn to live with the 'what ifs' and PSA anxiety. You are correct that PNI is an indicator of higher risk of biochemical recurrence but a) it is only an increased risk and not a certainty; b) worrying won't change that; and c) if (if, not when) it happens you will deal with it as it emerges.

My husband was 50 with a T1a diagnosis but post op he was upgraded to T3 with PNI and spread to his bladder. It was 2 years before he needed salvage RT and he is now nearly 8 years on from that (and 10 years on from the RP) on no treatment and with a PSA of <0.1

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

User
Posted 01 Jan 2019 at 19:33
You are referring to adjuvant RT with or without HT. If he had had positive margins they might have recommended adjuvant treatment, or if he had been upgraded to a G9 / G10 or if his first post-op PSA had been over 0.2.

There is also a trial in some areas where every man is offered RT / HT post-op regardless of his results. But basically, most men would like to avoid additional treatment if possible so it is more common to wait and see if your OH actually needs it in the future rather than do it now just in case.

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

User
Posted 01 Jan 2019 at 19:40

Penelope

As Lynn says, it is complex. You cannot do a simple “X Y Z means treatment A B C.” The situation has so many parameters and every case is different.

Understand your husband’s situation, do the research, ask questions of them and in here and get to the point where you can trust that they are making the right calls based on the evidence and that you don’t feel the need to second guess them based on things you think they have missed. If you can get to that point, brilliant. If you can’t get to that point then that is where things like second opinions come in. The NHS is not perfect but being in a situation where you are all one the same page is the best state of affairs for all of you.

Just remember you are not alone and there are plenty of people here to support you,

 

edit The above only need apply if anything actually happens!!!!

PP

Edited by member 01 Jan 2019 at 20:21  | Reason: Not specified

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User
Posted 01 Jan 2019 at 16:53
Penelope, for goodness' sake stop worrying. What is there to treat with an undetectable PSA? Get on with life and rejoice at your and his good fortune!

AC

User
Posted 01 Jan 2019 at 17:28

Dear Penny 

my husbands pathology gleason etc is exactly the same. Michael was diagnosed in April and had surgery on 12 th of June . He was 54 at the time of surgery and no symptoms . Raised PsA of 8.4 was found on a routine health check.

he has had 3 tests now with psa of less thab .002. i still worry so i know how you feel. however, until there is an offical BCR which hopefully for both our men there will not be i have been very stern with myself and only allow myself to worry the day of the psa test until the results the next day . otheriwse this will take over your life. 

i know its difficult as i am an eternal worrier but i am training myself not to . it is possible :)

take care and happy new year . 

Edited by member 01 Jan 2019 at 17:29  | Reason: Not specified

User
Posted 01 Jan 2019 at 17:36
Thank you, both. I will certainly try not to worry, but I guess I'm reading too much on the Internet.

User
Posted 01 Jan 2019 at 18:08
Unfortunately, this is your new normal; it may seem difficult to imagine right now but you will eventually learn to live with the 'what ifs' and PSA anxiety. You are correct that PNI is an indicator of higher risk of biochemical recurrence but a) it is only an increased risk and not a certainty; b) worrying won't change that; and c) if (if, not when) it happens you will deal with it as it emerges.

My husband was 50 with a T1a diagnosis but post op he was upgraded to T3 with PNI and spread to his bladder. It was 2 years before he needed salvage RT and he is now nearly 8 years on from that (and 10 years on from the RP) on no treatment and with a PSA of <0.1

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

User
Posted 01 Jan 2019 at 18:15
I had PNI but not extra prostatic PNI.

I am not sure if that makes a difference but it is probably worth finding out.

I did have BCR but that was not guaranteed to be related to PNI.

PP

User
Posted 01 Jan 2019 at 19:02

Thank you all so much. My husband also upgraded from T1c to T3(a).
I have got an understanding that some gets additional treatment to surgery, some does not.
Is it only dependent on PSA-numbers then, and not other factors?
Of course I don't want my husband to get additional treatment if he doesn't need to.

User
Posted 01 Jan 2019 at 19:33
You are referring to adjuvant RT with or without HT. If he had had positive margins they might have recommended adjuvant treatment, or if he had been upgraded to a G9 / G10 or if his first post-op PSA had been over 0.2.

There is also a trial in some areas where every man is offered RT / HT post-op regardless of his results. But basically, most men would like to avoid additional treatment if possible so it is more common to wait and see if your OH actually needs it in the future rather than do it now just in case.

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

User
Posted 01 Jan 2019 at 19:40

Penelope

As Lynn says, it is complex. You cannot do a simple “X Y Z means treatment A B C.” The situation has so many parameters and every case is different.

Understand your husband’s situation, do the research, ask questions of them and in here and get to the point where you can trust that they are making the right calls based on the evidence and that you don’t feel the need to second guess them based on things you think they have missed. If you can get to that point, brilliant. If you can’t get to that point then that is where things like second opinions come in. The NHS is not perfect but being in a situation where you are all one the same page is the best state of affairs for all of you.

Just remember you are not alone and there are plenty of people here to support you,

 

edit The above only need apply if anything actually happens!!!!

PP

Edited by member 01 Jan 2019 at 20:21  | Reason: Not specified

 
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