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Perineural Invasion (PNI)?

User
Posted 06 Dec 2019 at 18:43

Hello all.  I was diagnosed with Low Risk, Gleason 6 (3+3) PC in Jan '18 and was put on Active Surveillance.  Had a couple of review appts then asked to be transferred to a hospital closer to my home.


Thanks to admin cock up there was a 10 month gap between my last appt at the old hosp and my first at the new, which I had in October.  My new consultant sent me for an MRI, the result of which set off alarm bells and I was whisked in for another TP biopsy.  That found a new tumour (max length 12mm) Gleason 8 (4+4), T3a, and I was upgraded to High Risk.


I'm now being referred to Guy's Hosp Oncology and Urology to discuss radical treatment.  In the meantime, on Wednesday, I went in for a full body nuclear bone scan to check for spread.  I'm currently waiting on the results of that.


Then today I received a copy of the letter to my GP about my case, and I noticed it said "perineural invasion seen".  I Googled this and what I read was rather worrying concerning the usual prognosis in case with PNI.  Obviously I will discuss this with the consultants when I get to see them, but I live alone so these things are hanging heavy on my mind at the moment and I was looking for some reassurance.  I wondered if anyone here could tell of successful treatment after being diagnosed with PNI?


thanks, Stephen


 

User
Posted 07 Dec 2019 at 00:34
It isn’t that straightforward Bean, different research projects have come to completely opposing conclusions on the relevance of PNI and also, it depends whether the PNI was identified at biopsy or in the post-op pathology after RP.

Generalisation of different reports - PNI spotted at biopsy has less impact on outcomes (probably because a patient with PNI is less likely to have RP or go on AS) while PNI at post-op pathology is associated with higher rates of recurrence because RP didn’t get it all.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Dec 2019 at 12:28

I had PNI found at biopsy on one side. This meant that if I went for RP, it would have been non-nerve sparing (at least on that side, but probably both sides), and probably not good margins, necessitating radiotherapy too, and I would end up suffering side effects from both procedures.


For that and other reasons, I went for radiotherapy only (plus HT of course). In my case, the RT was split 75% external beam RT, and 25% HDR brachytherapy (a combination called HDR boost, although the percentage ratios vary a little between treatment centres).


I'm 4 months post radical treatment, and so far, erections still work fine. There is a risk the RT could still damage the nerves up to 5 or more years after treatment, but this is slightly lower than the risk that natural erections never recover after a nerve-sparing RP. I have to qualify the "works fine" by saying the loss of libido resulting from the accompanying HT kills any desire for erections, but you must force yourself anyway, and I can still get them, same size and hardness, as before, and the loss of libido should reverse when i come off HT.


However, many people with loss of libido on HT can't get erections, or can't get them often enough or for long enough, but you must do so to maintain penile health during your period on HT. You may need an understanding partner, and/or use porn, or used a pump (VED - vacuum erection device to give its proper name). PDE5 inhibitors can also help overcome lack of libido/arousal, 5mg daily low dose Tadalafil is particularly good for this if you can get it prescribed (not all NHS heath authority areas will prescribe it). These measures should only be temporary until you come off HT, unless you are unlucky and suffer late onset radiation damage to nerves as I mentioned above.


EDIT:
Let me just clarify - PNI doesn't necessarily mean no nerve sparing, it just did in my case. PNI is associated with very slightly less successful RP outcomes, but not due to nerve sparing.

Edited by member 09 Dec 2019 at 09:42  | Reason: Not specified

User
Posted 07 Dec 2019 at 19:28
Keep posting Bean. You are not alone on here

Bri
User
Posted 09 Dec 2019 at 09:44

Stephen,


I just added an important clarification to my earlier post, because I saw in another thread it didn't come across how I meant it to.

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User
Posted 07 Dec 2019 at 00:34
It isn’t that straightforward Bean, different research projects have come to completely opposing conclusions on the relevance of PNI and also, it depends whether the PNI was identified at biopsy or in the post-op pathology after RP.

Generalisation of different reports - PNI spotted at biopsy has less impact on outcomes (probably because a patient with PNI is less likely to have RP or go on AS) while PNI at post-op pathology is associated with higher rates of recurrence because RP didn’t get it all.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Dec 2019 at 12:28

I had PNI found at biopsy on one side. This meant that if I went for RP, it would have been non-nerve sparing (at least on that side, but probably both sides), and probably not good margins, necessitating radiotherapy too, and I would end up suffering side effects from both procedures.


For that and other reasons, I went for radiotherapy only (plus HT of course). In my case, the RT was split 75% external beam RT, and 25% HDR brachytherapy (a combination called HDR boost, although the percentage ratios vary a little between treatment centres).


I'm 4 months post radical treatment, and so far, erections still work fine. There is a risk the RT could still damage the nerves up to 5 or more years after treatment, but this is slightly lower than the risk that natural erections never recover after a nerve-sparing RP. I have to qualify the "works fine" by saying the loss of libido resulting from the accompanying HT kills any desire for erections, but you must force yourself anyway, and I can still get them, same size and hardness, as before, and the loss of libido should reverse when i come off HT.


However, many people with loss of libido on HT can't get erections, or can't get them often enough or for long enough, but you must do so to maintain penile health during your period on HT. You may need an understanding partner, and/or use porn, or used a pump (VED - vacuum erection device to give its proper name). PDE5 inhibitors can also help overcome lack of libido/arousal, 5mg daily low dose Tadalafil is particularly good for this if you can get it prescribed (not all NHS heath authority areas will prescribe it). These measures should only be temporary until you come off HT, unless you are unlucky and suffer late onset radiation damage to nerves as I mentioned above.


EDIT:
Let me just clarify - PNI doesn't necessarily mean no nerve sparing, it just did in my case. PNI is associated with very slightly less successful RP outcomes, but not due to nerve sparing.

Edited by member 09 Dec 2019 at 09:42  | Reason: Not specified

User
Posted 07 Dec 2019 at 18:44

Thank you for that very helpful reply.  It's given me a lot to think about as I had been tending towards RP as my treatment choice.  To be honest, years on high dose antidepressants plus my alcohol addiction have rendered my libido pretty much non-existent already (I'm 64 by the way).  I haven't been in a relationship since my marriage ended nine years ago, and that's unlikely to change now.  Still, I'll have to take it into consideration.  Thanks again

Edited by member 07 Dec 2019 at 18:45  | Reason: correct spelling

User
Posted 07 Dec 2019 at 19:28
Keep posting Bean. You are not alone on here

Bri
User
Posted 09 Dec 2019 at 09:44

Stephen,


I just added an important clarification to my earlier post, because I saw in another thread it didn't come across how I meant it to.

 
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