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Suspicion of Perineural Invasion

User
Posted 05 May 2025 at 15:22

Just been diagnosed last week and everything is a bit of a blur and still in a bit of shock. I've had MRI and Biopsy. Was looking for any advice  from the community on experience with "Suspicion of Perineural Invasion" Thanks 

TEST RESULTS

PSA LEVEL AT DIAGNOSIS:  7.2

GLEASON SCORE &GRADE GROUP: GRADE 1   GLEASON 3+3=6

CAMBRIDGE PROGNOSTIC GROUP (CPG): CPG1

T STAGE AT DIAGNOSIS (if known):  T2c

N STAGE AT DIAGNOSIS (if known): Nx

M STAGE AT DIAGNOSIS (if known): Mx

MY CANCER IS : LOCALISED (CONTAINED INSIDE PROSTATE)

TREATMENT PLAN: ACTIVE SURVEILLANCE (BUT YOU HAVE SUSPICION OF "PNI") (vs) SURGERY (vs) RADIOTHERAPY.

I have further appointments with Urologist and Specialist Nurse in next few weeks.

 

 

User
Posted 05 May 2025 at 16:01

Hi  Brian.

I'm sorry that you you've had to find us, but welcome to the forum, mate. You'll find a lot of support here.

Most if us have felt gutted when diagnosed, but dealing with PCa is like dealing with any setback in life. You've got to get on with it. 🙂

Your Gleason score is low and it appears the disease is prostate confined. Your PSA is elevated but not drastically so.

Two years ago,  I  was in a very similar position to you. Please read my profile history.

I elected active surveillance, which unfortunately failed for me. However, I still don't really regret my decision. My only concern would be your T2c staging, the PNI wouldn't really bother me that much.

Probably knowing what I know now, I'd still have taken active surveillance, but I'd make sure the surveillance was active. 

I started a conversation on T2c disease and active surveillance, it maybe  of interest to you.

https://community.prostatecanceruk.org/posts/t29997-T2c-disease-and-active-surveillance.

Whatever you decide please keep us updated and I wish you the best of luck. 👍

 

 

 

User
Posted 05 May 2025 at 17:00

Perineural Invasion means the cancer was found to be tracking along inside nerve sheaths inside the prostate. That slightly increases the chance that it could have tracked outside the prostate via nerves from the prostate bed, but this is only a very slight increase in risk, and some oncologists suggest none at all. If you are weighing up treatments, it's a very minor factor in favour of external beam radiotherapy, as that will spill into the prostate bed too hopefully mopping up any spread into it, but again not a big factor because the extra risk is small. It's also a small factor against Active Surveillance, because it's a slightly higher risk than if it wasn't there, hence why they have caveted the Active Surveillance with this warning.

These are not the erection nerves, and it doesn't say anything about the prospects of nerve sparing or not.

User
Posted 05 May 2025 at 18:28

My diagnosis included PNI, but I was T3 G9 so treatment was needed and RT made sense in my case. Everything about your diagnosis is low risk, but I guess T2c is not that far from becoming T3a. 

The latest treatment for disease at your stage is SABR, five high doses of RT over a total period of about two weeks. It is not yet offered in all NHS trusts. It is as effective as any other treatment, and has minimal side effects, compared to the old regime of 20 RT sessions over a month and two years of HT. It is not appropriate for high risk disease (which yours is not).

If SABR is offered I would jump at it. If not I would consider 6 months of active surveillance mainly with the objective of delaying your treatment until your NHS trust can offer SABR. If the active surveillance is still OK after six months consider staying on AS but be ready to get treatment pretty soon, because once it is T3 the treatment becomes a bit tougher.

Dave

User
Posted 05 May 2025 at 19:25

My understanding is T2C does not mean it is close to being T3A. What it does mean is that there is malignancy in both sides of prostate. This could mean it is more extensive than T2A but that is not a given because you could have one large lesion on one side of the prostate ie T2A that when you have surgery is found to have broken through or is bulging the prostate wall making you T3A. Conversely you could be T2C and the cancer is very well confined.  Not too long ago T2C was thought to be “high” risk in terms of AS but more recent research has suggested this is not the case. Indeed pathologists are no longer under any requirement to specify T2A, T2B or T2C and only have to specify T2. Your Gleason score is 3:3 which is very good news. Speak to the professionals involved in your care because I am sure you have been told in your circs there is no need to rush into anything.

User
Posted 31 May 2025 at 15:21

Thanks for all the replies. I'm still getting used to my new world and honestly been a bit down. I'm 58yo

PSA latest

May 2025 was 5.6    

January 2025 at Diagnosis was 7.2 ( though had been exercising 48 before)

December 2024  5.4 and 6.1 ( when urinary symptoms started)

I'm truly thankful that I went to my GP in December 2024. (as honestly I wasn't going to go as I thought it might be a urine infection that would go away).  

DIAGNOSIS

GLEASON 3+3=6

GRADE 1

CPG1

T2c NXMX

Size of Prostate 27cc

My latest letter from NHS Urology  "next steps"

To consider all treatment options

Consider active surveillance (take into account perineural invasion)

I'm meeting with my Local NHS Hospital Urology Dept (surgeon will be present) on Thursday regarding way forward. 

I was looking for advice on what I really need to ask and know before making any decisions  on continuing AS or look at surgery or what treatments.

Main things that i'm concerned about are is it inevitable, or whats the percentage-wise that T2C will become  T3A. ( Thanks to Adrian56 for link on this).

Also do I need to find out more about Biopsy results as any info that I have back from doesn't mention anything like how many samples or cores etc. 

Many thanks to everyone on the Forum and all the NHS staff I've met over the last few months that have  been so supportive.

Any advice or feedback would be appreciated

 

 

 

 

 

User
Posted 31 May 2025 at 15:55

Originally Posted by: Online Community Member
Main things that i'm concerned about are is it inevitable, or whats the percentage-wise that T2C will become  T3A. ( Thanks to Adrian56 for link on this).

Hello again mate.

I don't think anywhere on my link it was suggested that T2c will become T3a. However I did say, that T2c (cancer in both prostate lobes) was more likely to result in AS failure. At one time NICE clearly recommended that T2c disease was not suitable for AS. It was classed "more serious' than T2a and T2b disease. Then, overnight, all T2a, T2b and even T2c disease were classed simply as T2. NICE then recommended T2 disease was suitable for AS. It seemed ridiculous to me but it's true.

NICE NG131 risk stratification with localised prostate cancer once stated that those at high risk are people with a PSA level greater than 20mg/ml or Gleason 8-10 or a clinical stage equal or greater than T2c and go onto say because those with T2c are high risk, active surveillance should not be offered.

Which meant they classed T2c in the same high risk class as someone with Gleason 8 to 10. Or someone with PSA as high as 20! It would be very rare for someone with such a high PSA or Gleason score to have AS and they said that T2c was as risky. I found it incredulous that when T2c was clumped together with T2a and T2b disease and became one group T2 disease. That it was suddenly deemed suitable for AS.

I don't know if any research has ever suggested that there is more chance of T2c progressing to T3a disease. However, because it's more widespread in the prostate (in both lobes) common sense tells me that must increase the chance of it breaching the prostate capsule than if it was confined to just one half of the prostate (T2b) or just one quadrant (T2a)?

Edited by member 31 May 2025 at 16:52  | Reason: Typo

User
Posted 31 May 2025 at 19:33

You did not Adrian but Dave did state T2C is not far from T3A which is not correct. You could have a large tumour on only one side of the prostate that is at risk of breaking through the capsule. I did not want original poster to think because he had cancer both sides of his prostate he would be likely to experience a breach of the capsule. However the prostate is small which potentially could make a breach of the capsule more likely but expert advice would need to be sought to see if this increased risk. There is also new research that says 2C is not significantly clinically different to T2A or T2B and indeed pathologists in UK are no longer required to state A, B or C anymore and can just record T2 ie confined to prostate. I agree however this is very out of keeping with the old guidelines which have now been disregarded.

User
Posted 31 May 2025 at 20:37

Originally Posted by: Online Community Member
 There is also new research that says 2C is not significantly clinically different to T2A or T2B and indeed pathologists in UK are no longer required to state A, B or C anymore and can just record T2 ie confined to prostate. I agree however this is very out of keeping with the old guidelines which have now been disregarded.

Hi IDK2 

I have not seen any recent search showing that the old T2c bilateral disease is still not a clinically significant factor in increasing the chance of AS failure. I put links to research papers and old NICE guidelines (which were valid only 4 years ago) which state it was more likely to lead to AS failure and was not suitable for AS.

I would be grateful if you could post a link showing that this is no longer the case.

It seems to me the main reason the T2a, T2b or T2c were all classed as T2 disease was simply because we changed to CPG risk categories instead of the D'Amico it replaced.

Neither of us are medically trained but  knowing what we do about this disease, I'm sure we'd both be a lot happier with one lesion in one quarter of the prostate than we would with both lobes containing lesions. Would you rather be told you've got a single lesion in your prostate that's safely contained, than being told your prostate is riddled with cancer but it's safely contained.

In 2020, I was diagnosed with T2c disease and put on AS when NICE guidelines clearly stated at the time T2c disease was high risk and AS was not a suitable treatment option. Yet a year later the goalposts had been moved and it was. I can't see medical research changing and degrading the additional risk of T2c disease in a year, but I can see changing to a different risk stratification doing just that.

Very late edit 🙂

I've now found a link

https://pmc.ncbi.nlm.nih.gov/articles/PMC6375094/#:~:text=Conclusions,confidence%20for%20patients%20and%20physicians.

which shows there is no mortality rate differences between the old T2 sub groups. However, I don't think that negates research showing that that the old T2c disease is more likely to result to AS failure than the old T2a and T2b disease.

The link also explains why the old T2 sub groups were now grouped together as the new T2 group. It also mentions that T2c disease was once deemed high risk purely on its cancer staging alone. Now PSA levels and Gleason score are also combining factors. That's why it risk factor in most cases has been downgraded.

It explains why in 2020, with PSA 5.6, Gleason 6(3+3) and NICE NG 131 stated  those with a PSA level greater than 20mg/ml or Gleason 8-10 or a clinical stage equal or greater than T2c, I was deemed high risk and not suitable for AS.

Yet a year later, I was CPG 1 because I had a Gleason score of 6 and a PSA level under 10 ng/ml, and a T stage of 1 or 2.  According to them I was now the lowest risk and a prime candidate for AS.

You work that one out.🙂 It's amazing how replacing or with and made such a difference.

In my mind the 'powers that be' are definitely edging towards more AS and less radical treatment. They say they want to avoid men being over treated but I can't help thinking part of it, is to save money. Radical treatment is more costly than AS.

Edited by member 01 Jun 2025 at 10:12  | Reason: Typo

 
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