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Surgery for G9

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User
Posted 24 Sep 2023 at 06:56

Hi all,

Just looking for reassurance and or advice. 

My husband was diagnosed as T2 with a Gleason score of 9. 

His consultant said they caught it just in time as both sides of his prostate were involved but was confident it could be removed although he wanted to do none nerve sparing to be sure. 

Following the operation a few weeks ago the consultant seemed positive as does my husband. I've not spoken to him about my worries as I want him to maintain his positivity. (No pathology report yet).

I know Gleason 9 is high risk and that's where my worries lie, but am I overthinking? Should I take peace of mind in the consultant's view on this? 

Advice greatly appreciated.

User
Posted 25 Sep 2023 at 23:54

Hi there,

My husband was G9 and diagnosed 2014. He had surgery as everything suggested it was all contained. Sadly, when they did the surgery , they found it was not in fact contained. It has spread to bladder neck, seminal vesicles and one local lymph node. Very strange how it wasn't picked up on pre op scans. 

However, despite the G9 and the spread, he's still here and doing fine sept 2023. He is now having slow rise in PSA. Next PSA coming up and probably will need a scan and more treatment I suspect.. he's been off any treatment since 2019.

So G9 , although it needs to be treated more aggressively and carefully l, can still be v manageable.

Hope this helps,all the best to your husband. 

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 26 Sep 2023 at 07:58

I was Gleason 9 with a psa off 24.9 nearly 4 year's after radiotherapy and hormone therapy my psa has been a constant 0.01 decided against prosectomy as I wanted to avoid the continence issues and the catheter the radiotherapy was a breeze the hormone therapy was tolerable did I make the right decision who knows but so far so good even started playing football again at 61 so far so good good luck to all whatever treatment path you go down gaz 👍

User
Posted 25 Sep 2023 at 17:43

Great attitude Steve, strange though in England and with G9 T3bN0M0 and you got the options of surgery whilst in Scotland I am G7 T3bN0M0 and surgery was a big No! No!

If I had been offered it I would have taken the chance like yourself. The cynic in me wonders if it’s a cost thing🤔🤔🤔. I do wonder if I had gone private if they would have offered me it?

Still it’s done now and I can’t change it so like you I just try and get on with enjoying every day as best I can with the aching joints😟

Derek

User
Posted 26 Sep 2023 at 08:31

Good to hear success stories about those on HT/RT Gaz, especially for those who chose that route over surgery. I hope in 4 years I might be in a similar position🤞

Derek

User
Posted 27 Sep 2023 at 10:02

Originally Posted by: Online Community Member

Hi there,

My husband was G9 and diagnosed 2014. He had surgery as everything suggested it was all contained. Sadly, when they did the surgery , they found it was not in fact contained. It has spread to bladder neck, seminal vesicles and one local lymph node. Very strange how it wasn't picked up on pre op scans. 

However, despite the G9 and the spread, he's still here and doing fine sept 2023. He is now having slow rise in PSA. Next PSA coming up and probably will need a scan and more treatment I suspect.. he's been off any treatment since 2019.

So G9 , although it needs to be treated more aggressively and carefully l, can still be v manageable.

Hope this helps,all the best to your husband. 

Sorry to hear that but glad he is doing well. His surgeon is adamant his is contained as far as lymph nodes, seminal vesicles and bladder neck and didn't see anything unexpected during the surgery. It was just the vascular bundles (incase there was microscopic spread) and as a result he opted to be more aggressive in removal rather than going for damage limitation. 

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User
Posted 24 Sep 2023 at 10:09

Hi TW,

I think on this so called ‘journey’ you just have to go with consultants view, otherwise you just worry yourself into a state of anxiety which helps nobody. I know it’s difficult not to worry no matter which treatment path you choose but I try to deal with it by keeping as active and busy as possible. Oh, and being kind to myself with lots of treats😊

I am no expert but I would have thought with T2 G9 (no spread) then surgery would have been the best option, and if you are unlucky you have the fallback of SRT.

Maybe you need some support from the likes of Maggies(here I go again, I’m not on Commission honestly🤣)
or why not give the Specialist Nurses at PCUK and tell them your worries…they are absolutely wonderful.

I hope when you get the pathology results it’s good and if not there’s lots of people on here to offer support and advice.

Derek

User
Posted 24 Sep 2023 at 12:57

The main difference between a G6 diagnosis and a G9 is how fast that cancer is likely to spread. If all the cancer was removed, and with a T2 that is highly likely, then the Gleason score is no longer important. 

Dave

User
Posted 24 Sep 2023 at 13:22

I agree with the very experienced members Decho and Dave. My diagnosis was similar and was given a very positive opinion about my chances of a cure by my consultant but that did not make waiting any easier, particularly for me because I am a pessimist with a good dose of anxiety.  That was 12 years ago and I am still here! As Decho says this is a journey with bumps and turns on the way. I wish you luck.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 24 Sep 2023 at 13:49
Very important to analyse your post OP pathology AND if possible make sure you get an ultra sensitive PSA test.

With a G9 it is important not to let any residual cancer get away from treatment after prostatectomy.

Hopefully your post OP pathology will be unchanged (or better) AND PSA will be LESS THAN 0.03.

If you are upgraded to T3 or PSA does not go "LESS THAN" ask for an immediate referral to oncology for their opinion.

User
Posted 24 Sep 2023 at 14:25

francij1 - could you let me know why  you say PSA should be less than 0.03 after RP? My OH was upgraded to Gleason 9, and he’s now T3b with one positive lymph node and his post op PSA was 0.04. Replies to my original post about the results  indicated that was a good result so just wondering why the 0.03 reference. Thanks Kate 

User
Posted 24 Sep 2023 at 14:54
If it was a Less Than 0.04 then that is good. If it wasn't then fingers crossed the next one is.

No one on this site should be saying a detectable PSA with T3B N1 G9 is a "good result" after prostatectomy, it will almost certainly require additional radiotherapy.

Do not be complacent unless it goes to "LESS THAN".

If you are still concerned insist on a referral to an Oncologist.

User
Posted 24 Sep 2023 at 15:37

Thanks so much francij1.it definitely wasn’t less than and I think the surgeon was surprised it was as low as it was given his other results; yep that’s what I thought that sooner or later he will need RT. I’m really glad you’ve explained that as I wanted to see a less than 0.01 so was disappointed with 0.04 (though not said that to OH) but then with others saying it was a good result I thought 🤷‍♀️ I was being over dramatic! Appreciate your thoughts and  I’ll be watching his PSA results like a hawk

User
Posted 24 Sep 2023 at 15:48

Ive read too many horror stories about G9 I know I shouldn't doctor Google. I imagine there's also loads of positive stores you never hear about. So taking it all means the Gleason score is no longer of importance correct? The consultant is one of the best in the country and he was absolutely positive there was no spread to the lymph nodes. He didn't want to spare the nerves though to ensure he got it all out, but that's not even of concern Vs the alternative. Thank you so much everyone. This has helped. 

Edited by member 24 Sep 2023 at 15:57  | Reason: Not specified

User
Posted 24 Sep 2023 at 21:22
The Gleason score is always important as it remains the best indicator of how serious you should treat the cancer you have. The problem with Gleason is it's a subjective appraisal so things can be missed or simply wrongly graded.

So if you have a G6 cancer you may have the luxury of time and treatment choices. If you have a G9/10 you probably need to treat aggressively and quickly.

But G6 kills people and G9, even advanced and metastasised may respond completely to treatment, so it's never cut and dry either way.

User
Posted 25 Sep 2023 at 16:28
I'm in the "G9" club - T3bNoMo :)

My RP was also none nerve sparing and thank goodness it was as the lab report identified that it had entered the bundle but my post RP PSA was <0.001 so we are hopeful that they got it but I am ready for the salvage RT if/when it is needed. I know that there are high probabilities that it will be needed but there are plenty of people in this group have had SRT and are still here to tell us all about it.

Just have to get on an enjoy life and not let it get us down and ruin our relationships and the time we have :)

User
Posted 25 Sep 2023 at 17:43

Great attitude Steve, strange though in England and with G9 T3bN0M0 and you got the options of surgery whilst in Scotland I am G7 T3bN0M0 and surgery was a big No! No!

If I had been offered it I would have taken the chance like yourself. The cynic in me wonders if it’s a cost thing🤔🤔🤔. I do wonder if I had gone private if they would have offered me it?

Still it’s done now and I can’t change it so like you I just try and get on with enjoying every day as best I can with the aching joints😟

Derek

User
Posted 25 Sep 2023 at 23:54

Hi there,

My husband was G9 and diagnosed 2014. He had surgery as everything suggested it was all contained. Sadly, when they did the surgery , they found it was not in fact contained. It has spread to bladder neck, seminal vesicles and one local lymph node. Very strange how it wasn't picked up on pre op scans. 

However, despite the G9 and the spread, he's still here and doing fine sept 2023. He is now having slow rise in PSA. Next PSA coming up and probably will need a scan and more treatment I suspect.. he's been off any treatment since 2019.

So G9 , although it needs to be treated more aggressively and carefully l, can still be v manageable.

Hope this helps,all the best to your husband. 

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 26 Sep 2023 at 07:58

I was Gleason 9 with a psa off 24.9 nearly 4 year's after radiotherapy and hormone therapy my psa has been a constant 0.01 decided against prosectomy as I wanted to avoid the continence issues and the catheter the radiotherapy was a breeze the hormone therapy was tolerable did I make the right decision who knows but so far so good even started playing football again at 61 so far so good good luck to all whatever treatment path you go down gaz 👍

User
Posted 26 Sep 2023 at 08:31

Good to hear success stories about those on HT/RT Gaz, especially for those who chose that route over surgery. I hope in 4 years I might be in a similar position🤞

Derek

User
Posted 26 Sep 2023 at 10:17

Hopefully you are ok going forward decho just want to give a different prospective to prosectomy I went a different route.the new radiotherapy machine's are fantastic I could have gone the prosectomy route but like I said earlier didn't want the side effects several in my group are still suffering . It could easily go the other way who knows but I have no fear off dying it is what it is everybody has their choice some don't unfortunately but we all have to be confident with our treatment path gaz 👍

User
Posted 27 Sep 2023 at 10:02

Originally Posted by: Online Community Member

Hi there,

My husband was G9 and diagnosed 2014. He had surgery as everything suggested it was all contained. Sadly, when they did the surgery , they found it was not in fact contained. It has spread to bladder neck, seminal vesicles and one local lymph node. Very strange how it wasn't picked up on pre op scans. 

However, despite the G9 and the spread, he's still here and doing fine sept 2023. He is now having slow rise in PSA. Next PSA coming up and probably will need a scan and more treatment I suspect.. he's been off any treatment since 2019.

So G9 , although it needs to be treated more aggressively and carefully l, can still be v manageable.

Hope this helps,all the best to your husband. 

Sorry to hear that but glad he is doing well. His surgeon is adamant his is contained as far as lymph nodes, seminal vesicles and bladder neck and didn't see anything unexpected during the surgery. It was just the vascular bundles (incase there was microscopic spread) and as a result he opted to be more aggressive in removal rather than going for damage limitation. 

 
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