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User
Posted 05 Sep 2023 at 10:00

Hello all,

Just popping on to share our latest news. The story to far

Sep 2022 PSA 11.1

Oct 2022 MRI shows suspicious lesions

Jan 2023 Biopsy  Gleason 3 + 4 everything contained

April 2023 Consultant appointment to discuss options - opted for RP

June 2023 RP

Yesterday we had a telephone appointment for histology and PSA results following the RP. Instead we got a phone call asking us to come in straightaway instead - you can imagine the panic !

Meeting with consultant then revealed that PSA <0.01 - phew, but histology from the RP showed OH was actually T3b with Gleason 4 + 3

I think we were both relieved that things weren't worse but also think we should have asked lots of things we didn't. Still processing it all and reading other peoples stories

For now he is on 3 monthly PSA checks... 

I just wanted to say a massive thank you to everyone who shares their stories here - we were well prepared for the histology being worse thanks to you all.

OH still struggling to recover from the RP with fatigue, but relieved that the PSA is undetectable - onwards we go :) 

User
Posted 05 Sep 2023 at 12:03

Hi Vicky,

The good news is the psa being <0.01.  That it's <0.01 is a better signal than <0.05 which is what many people are tested to. Particularly for someone who might be worried about their pathology,

No doubt the T3b is a nag but it's starting from the best place psa wise.

The Gleason change is also a nag but 4+3 is still in the lower band of risk factors.

It's a surprise they give you a telehone appointment for the first consultation after the op.  I had face to face for 2 years, although it was 7 years ago.   Also psa tests every 3 months is normal for at least a year for everyone, as you probably know.

I still clearly recall the first words of my first appointment, which were 'There's good news and bad news, your psa is undetectable, your margins are clear, but your Gleason is upgraded to 4+4'.  I regard it as a benefit to be aware after a proper on the bench test.

I think I'd want to know why it's T3b and ask for a copy of the pathology report.  Most people on this forum do, although I admit that I didn't and keep meaning to, but so far haven't got round to it.  Largely as I feel it might give me more to worry about.

Best Regards Peter

 

 

Edited by member 05 Sep 2023 at 12:03  | Reason: Not specified

User
Posted 05 Sep 2023 at 13:12

Vicky, he is in exactly the same position as me - G3+4 at biopsy but upgraded (downgraded??) to G4+5 T3bN0M0 on the lab table (June 23). Likewise PSA <0.01 after the surgery. Also on 3 monthly PSA tests.
In my case they took the entire nerve bundle which was good as they found that the cancer had started to migrate there. Although the surgeon was apologetic that the end result was not what the biopsy had indicated, they said that surgery was the right decision and if anything had been left behind then the other treatments were available.

So for now just getting on with life and will keep monitoring going forward. At least the mothership is out and they may have still removed it all as they didn't think it had got into the bed.

Here in France we get the full pathology report - it's complex to understand and initially, as Peter said, sounds worse than it is - but reading that there is zero evidence in the lymph nodes is comforting.

Edited by member 05 Sep 2023 at 13:12  | Reason: Not specified

User
Posted 06 Sep 2023 at 06:30

I was upgraded to pT3b and Gleason 4+5.  Positive margins.  PSA was 0.014.  I had 18 months bicalutimide and salvage radiotherapy.   

My PSA has been <0.006 since the salvage treatment.  And it's stayed at that level for 5 years now.

There is hope.

Show Most Thanked Posts
User
Posted 05 Sep 2023 at 12:03

Hi Vicky,

The good news is the psa being <0.01.  That it's <0.01 is a better signal than <0.05 which is what many people are tested to. Particularly for someone who might be worried about their pathology,

No doubt the T3b is a nag but it's starting from the best place psa wise.

The Gleason change is also a nag but 4+3 is still in the lower band of risk factors.

It's a surprise they give you a telehone appointment for the first consultation after the op.  I had face to face for 2 years, although it was 7 years ago.   Also psa tests every 3 months is normal for at least a year for everyone, as you probably know.

I still clearly recall the first words of my first appointment, which were 'There's good news and bad news, your psa is undetectable, your margins are clear, but your Gleason is upgraded to 4+4'.  I regard it as a benefit to be aware after a proper on the bench test.

I think I'd want to know why it's T3b and ask for a copy of the pathology report.  Most people on this forum do, although I admit that I didn't and keep meaning to, but so far haven't got round to it.  Largely as I feel it might give me more to worry about.

Best Regards Peter

 

 

Edited by member 05 Sep 2023 at 12:03  | Reason: Not specified

User
Posted 05 Sep 2023 at 13:12

Vicky, he is in exactly the same position as me - G3+4 at biopsy but upgraded (downgraded??) to G4+5 T3bN0M0 on the lab table (June 23). Likewise PSA <0.01 after the surgery. Also on 3 monthly PSA tests.
In my case they took the entire nerve bundle which was good as they found that the cancer had started to migrate there. Although the surgeon was apologetic that the end result was not what the biopsy had indicated, they said that surgery was the right decision and if anything had been left behind then the other treatments were available.

So for now just getting on with life and will keep monitoring going forward. At least the mothership is out and they may have still removed it all as they didn't think it had got into the bed.

Here in France we get the full pathology report - it's complex to understand and initially, as Peter said, sounds worse than it is - but reading that there is zero evidence in the lymph nodes is comforting.

Edited by member 05 Sep 2023 at 13:12  | Reason: Not specified

User
Posted 05 Sep 2023 at 21:56

Thanks to both of you. I really appreciate the responses. 

Hope all goes well for you both 

Vicky 

User
Posted 06 Sep 2023 at 06:30

I was upgraded to pT3b and Gleason 4+5.  Positive margins.  PSA was 0.014.  I had 18 months bicalutimide and salvage radiotherapy.   

My PSA has been <0.006 since the salvage treatment.  And it's stayed at that level for 5 years now.

There is hope.

 
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