Utterly confused!! Limbo zone

User

Posted 24 Feb 2025 at 12:01

Hi all,

So I’m joining you on this journey!

I’m a 62 year old semi retired golf and travel fanatic who is currently reeling.

Went to see Doctor November 24 with minor LUTS symptoms associated with enlarged prostate. Second clear DRE of the year done at the time but Doctor said “while we are here let’s do a PSA”. Previous PSA score summer 22 was 2.99 and ultrasound showed no abnormality so very shocked when 4.5 was recorded. Had a massive anxiety attack!! Follow up PSA done 6 weeks later and slightly lower 4.4. Doctor assured me she doubted I had Pca but 2ww for a MRI to rule it out.

MRI duly completed end January. Pi Rads 5. Clinically Significant Tumour 24mm. Right Mid Gland PZ. Prostate size 57 and PSA density 0.8. Radiologist score T2 N0 Mx

TP Biopsy duly completed last Monday with 24 cores taken and 4 extra of target area. Not a pleasant experience but little pain and fall out afterwards. No antibiotics or coffee afterwards though and waved on my way less than 30 minutes after.

… but even with super support from Wife of 30+ years, family, anxiety coach, plus super support from talking to PC UK Specialist nurse, I’m (we are) struggling massively with the uncertainty.

I’m particularly concerned that with the tumour the size it is will turn out to be T3 as a minimum as appears to be the case many times on this forum and it will cause problems with subsequent potential treatment options. At the moment I’m favouring RP.

Apologies for going on so long. Currently quite overwhelmed and trying to find the positive is hard.

User

Posted 24 Feb 2025 at 14:06

I know this will not stop you worrying but until you get your biopsy results you do not know if you definitely have anything to worry about. Your PSA is low which is hopefully good news. Sometimes size reported by Radiologists reading MRI’s is the size of the area of interest not the tumour. Your tumour may not be 24mm long. PSAD is determined by PSA divided by prostate in cc. In your case rounded up that means .08 and not.8. Even a large tumour does not always equate to an aggressive tumour. There are so many variables. Low PSA does not rule out aggressive cancer always, small tumours can be aggressive so as you can see at this stage on the information you have you have no way of knowing what you are dealing with. Waiting is very hard but when you get your biopsy results you will be in a much better position to know if you are dealing with anything significant or not.

Edited by member 24 Feb 2025 at 14:07 | Reason: Not specified

User

Posted 24 Feb 2025 at 15:48

Thank you Adrian56,

wise words and we could all do with a bit of that kind of luck.

User

Posted 15 Mar 2025 at 14:59

Don't get ahead of your self Suzz. Not knowing what all the numbers mean in prostate cancer does not make you dumb.

Quite honestly a scale from 0 to 10 where anything below 6 isn't cancer and the word score and grade has completely different meanings, and the scores 7 and 9 have two meanings and 8 has three meanings, was invented by someone who was pretty dumb at inventing scales.

Yes cry and be upset that cancer has came in to your life that is quite understandable. Don't be upset with yourself, your hubby or the doctors no one invited the cancer in. Now if you want, read a bit and learn a bit but don't try and learn more than you need at the moment. Ask on here anything you want, someone on here will have already asked the same question and someone will remember the answer, you will be a little bit wiser. When the next result comes in or the next treatment option is presented you will find out you understand some, but there is more you don't know so do a bit of research ask questions on here and you will gain a bit more knowledge.

Edited by member 15 Mar 2025 at 15:00 | Reason: Not specified

Dave

User

Posted 15 Mar 2025 at 18:40

Evening folks.

Firstly, SUZZ, fully understand, we’ve cried buckets at this end both together and individually. It’s such a worrying time.
Also, I’ve worked 40 years in the finance industry and all the numbers and permutations have got me completely confused. My head is truly spinning. This forum has been so helpful to us and has helped reduce my anxiety levels.

So an update on a very confusing week.

The hospital has now said that I need a PSMA PET-CT scan before referral for a consultant surgeon and oncologist meeting.

This I understand is to confirm whether there has been spread of the Pca.

Just to remind, I was confirmed T2, N0, MX at MRI at follow up meeting to biopsy with a PSA of 4.5, PSAD of 0.08, biopsy cores 1 out of 12 left side and 14 out of 16 right side with one area PNI. Gleason 3/4. I’ve also had a CT scan including the pelvic area done in January for bowel issues which showed no abnormality.

The hospital aren’t being specific about reasons for test just saying it’s normal process and they do it all the time.

I guess the scan is due to the PNI and perhaps the bilateral Pca but as it’s only Friday before last I was curable and non aggressive I’m scratching my head somewhat.

Edited by member 15 Mar 2025 at 19:52 | Reason: Not specified

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User

Posted 24 Feb 2025 at 14:06

Edited by member 24 Feb 2025 at 14:07 | Reason: Not specified

User

Posted 24 Feb 2025 at 14:09

Sorry that you've had to join us, but welcome onboard.

It's always difficult until you know exactly what you're dealing with, and what your treatment plan is. But the good news is that treatments today are so much better than they were even 5 years ago: there's every reason to be optimistic that you can carry on doing the things you love for many years to come.

You'll soon have the results from the biopsy, and a plan will be put in place quickly after that. Wishing you all the best in the meantime.

User

Posted 24 Feb 2025 at 14:41

Thank you for your wise words. Much appreciated.

User

Posted 24 Feb 2025 at 14:42

Thank you for your support. It is greatly appreciated.

User

Posted 24 Feb 2025 at 14:55

Hi Golfnut.

I'm sorry that you've had to find us, but welcome to the forum mate.

As others have said, the biopsy will shed far more light on your exact condition. Your prostate is about twice as big as normal, this plus other non cancerous conditions could cause a rise in your PSA. You've just got to take one step at a time mate, and deal with each procedure and result as it comes.

I hope that you're as lucky as Brian Campbell was yesterday on the second play off hole of the Mexico Open. Bouncing back into play off a tree that that was 10 yards out of bounds.

Please keep us updated and good luck with your results.

User

Posted 24 Feb 2025 at 15:48

Thank you Adrian56,

wise words and we could all do with a bit of that kind of luck.

User

Posted 12 Mar 2025 at 08:18

So I’ve now had the results of my biopsy last Friday and I’m joining the “family”.

Gleason 3/4.

CPG 2

28 cores taken.

left side 12 taken and one with positive for Pca

right side all 16 positive for Pca

Confirmed by CNS that Pca is non aggressive and curable. Still T2, N0 and Mx (MRI and CT show no M).

Prostatectomy suggested as best route as I have had IBD in the past. This was my preferred option.

One thing has confused me though. The largest right side lesion apparently has PNI.

This wasn’t mentioned at the biopsy results meeting, and I only read this on the report afterwards. However, I understand this is, in itself, aggressive Pca with a poorer potential prognosis as there is a high possibility of Metastasis.

Information on PNI though is quite varied and very inconsistent. One report suggests that as much as 84% of all Pca has some PNI involvement. Whereas, another report suggests it’s quite rare.

I’ve not seen it mentioned much in posts so wonder what experience people have of it?

User

Posted 12 Mar 2025 at 09:45

Hello, mate

The histology of my removed prostate showed PNI. I did lots of research on it and came to the conclusion that it wasn't that relevant. I seem to recall a lot of scientific research had ended up contradicting it's self regarding PNI.

Here's the conclusion to some recent research.

This study is the largest multi-institutional study published to date that specifically analyzed patients with pT2 PC. We found that PNI on surgical pathology was not an independent indicator of the risk of biochemical recurrence in patients with pT2 disease. PNI may instead be an indicator of aggressive disease because of its association with a high Gleason score or more widespread disease. We recommend that PNI continue to be reported in prostatectomy specimen reports because longer follow-up is needed to more accurately confirm whether PNI is an indicator of biochemical recurrence in other pathologic T stages. Additionally, it may be beneficial to determine whether PNI on surgical pathology is associated more with locoregional versus distant recurrence because this may partially explain why the literature has documented conflicting results on the clinical significance of PNI.

https://www.advancesradonc.org/article/S2452-1094(18)30188-X/fulltext

Most of my histology looked problematic. Prostate breached, T3a, extraprostatic extension, Gleason 9(4+5) and PNI which are all factors that are likely to increase the risk of recurrence. Two years later my PSA is still undetectable.

During my journey I've spent far too many hours studying prostate cancer research. I've come to liken it to picking a place to dine out on trip advisor reviews. Some'll say it great, some'll say it's poor. In the end its up to you to pay your money, and take your chance.😁

Edited by member 12 Mar 2025 at 09:59 | Reason: Additional text

User

Posted 12 Mar 2025 at 10:45

Thank you Adrian56. Great response and I love the analogy. I’m trying desperately to stop going round and round in circles.

User

Posted 12 Mar 2025 at 11:18

I agree with Adrian. There is no consensus as to what PNI means ie Is it more significant when picked up on biopsy rather than pathology following prostate removal? Is extensive PNI more significant than focal PNI? Is radiotherapy more effective than surgery when PNI is detected on biopsy? What nerves are impacted? All this is discussed in research papers. In some countries it is not mandatory to report on the finding of PNI although I think it is changing. There is no single definition as to what PNI is. Is it tracking along the nerve, is it 50% around the nerve, has it encircled the nerve? These different definitions are used to identify PNI which makes researching impact of diagnosis difficult as may not be comparing like with like.
I think it is safe to say better to not have PNI but how much better I don’t think is known. Best thing is to ask your consultant what does the discovery of PNI mean in my individual circumstances.

Dont forget what you have been told and that is you are curable. That is what you need to hold onto.

PS My husband following surgery was found to have intra prostatic focal PNI. Some research papers, as Adrian said, state that following surgery 80% of men have PNI and that figure could be higher dependent on what criteria is used to define PNI

Edited by member 12 Mar 2025 at 11:26 | Reason: Not specified

User

Posted 12 Mar 2025 at 15:47

Thank you IDK2. Your comments make a lot of sense.

I’ll have a chat with the consultant.

User

Posted 15 Mar 2025 at 14:13

Hi everyone. Sorry to read a lot of profiles & hope everyone is feeling ok. Don’t know where to start 🙈

For those of you that have already welcomed me. Thanks so much. Now my hubby got bone scan on 19th. Then big day is 27th first biopsy. Lady phoned me yesterday to make the appt. Like the rest of you. I honestly don’t know if I’m coming or going. Today bad day can’t stop bldy cryin. Obvs not in front of hubby. But I just don’t know who to turn too. Iv been reading loads on this site. I am now worrying about results for couple of reasons. Obvs the C. Then I don’t have a clue about all the treatment & all the Gleason number thing. All the other numbers & treatment. I thought I will read up & atleast have an idea as what will happen IF (small word with big meaning)to be honest with you all it’s more mixed me up than anything. All these words numbers & things. I just don’t have a clue. Never realised how dumb I really am. So that’s just where I am at moment. Thanks everyone. So sorry if iv been going on & been boring today. Yous all take care n try keep chin up

Cheers

Suzz

User

Posted 15 Mar 2025 at 14:59

Don't get ahead of your self Suzz. Not knowing what all the numbers mean in prostate cancer does not make you dumb.

Edited by member 15 Mar 2025 at 15:00 | Reason: Not specified

Dave

User

Posted 15 Mar 2025 at 18:40

Evening folks.

So an update on a very confusing week.

The hospital has now said that I need a PSMA PET-CT scan before referral for a consultant surgeon and oncologist meeting.

This I understand is to confirm whether there has been spread of the Pca.

The hospital aren’t being specific about reasons for test just saying it’s normal process and they do it all the time.

I guess the scan is due to the PNI and perhaps the bilateral Pca but as it’s only Friday before last I was curable and non aggressive I’m scratching my head somewhat.

Edited by member 15 Mar 2025 at 19:52 | Reason: Not specified

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