Treatment for Gleason 9 Localised

Hi Dave 

the specialist nurse seemed to think Brachy would make his current urinary symptoms worse? 
one thing that nobody has spoke to him about is if the surgery would take the nerve bundles etc

i think we were so elated at the bone scan results we ran out of Christie’s and rang the nurse at our local hospital to book him in for RP maybe a bit to quickly but who knows !

as you say that’s exactly what we were told 70 to 80% successful. 
I don’t know if I’m misunderstanding some reading I’ve done but I just thought being G9 they would do some extra therapy? 
I hope we’ve picked the correct route but if it gets him cancer free I know I can live with any of the potential side effects and my OH said he thinks he could. 

Thank you for reply it is good to hear other people’s experiences, knowledge is power. There is certainly a lot to know about PC and its treatments and side effects. 
Long May your good health continue. 

Hi Dave.

Thanks for responding.

My scan in Aug 2022, 6 months pre op, indicated EPE, radilogically T3a. 20 out of 24 cores more than 40% cancerous, Gleason 9(4+5). The later histology indicated that 25% of the prostate was cancerous.

What always concerned me was that the surgeon who did the op classified the cancer, pre op, as T2c, yet the MRI clearly showed EPE, T3a

I'm just a bit perplexed as to when it's deemed too risky to proceed with surgery? Is the decision made on cancer staging, volume of disease, Gleason score, PSA level or a combination of all four. 

I guess it's probably the latter.

Your cancer, although the same Gleason as mine, seems to have had more volume and was more wide-spread, and that's why surgery was not deemed an appropriate treatment?

Hi 

So following on from the appt about Surgery v BT where it was thought RP was the best option! 
I rang the secretary today to ask where OH is upto as his 62 days from referral to treatment is up on Friday.

I was told that all listing for June had now been made and it would be July! 
I was upset at this as this would be wildy outside of the guidelines so the secretary said she would speak to consultant given his G9 BUT then said is OH over weight I said his BMI would be about 32 and he has sleep apnea but this was spoken about with Christie they said should not be a problem and the surgeon mentioned it in his letter to our GP just saying he is at slightly higher risk of anaesthetic? 
I’m now in a spin that they will say no surgery and if they do allow surgery but not until July will the cancer have spread from the current T1 stage? Should he be on HT ? 
Any thoughts or advice welcome please? 

M

Hi Adrian 

My worry is when they say it won’t matter how do they know! Surely a cancer has to be contained one day and another it is outside the prostate? 
I know that we cannot pinpoint the date a cancer moves forward but given the surgeons grim atttitude to his G9 as I’ve previously written about surely nearly 5 months from Initial high PSA is to long to wait for a “very high risk” cancer. 
I now worry they will start rediscussing his case at MDT when I feel if they thought RP would not be possible because of sleep apnea then we need not of had the extra step of being spoken To about the RPvBT? And then being referred back to surgeon. 
I just feel anxious that to us it’s so urgent but in the system it appears time is not an issue. 
thanks again 

M

That is dreadful Adrian. That is one heck of a delay! 
Always being told to get checked early but what is the sense in leaving you months or even years before they treat you! 
At the moment OH is told upto now curable and no sign of any disease outside prostate! How on earth I would feel if there is more delay and all that changes as he is G9. 
Just so sad and frustrated at it all 😞 

Hello mate

Covid restrictions had finished when they put me on Bical for a couple of months prior to my op. I only just avoided a Prostap injection because my cardiologist gave an earlier than expected thumbs up to surgery.

Edited by member 22 May 2024 at 15:40  | Reason: Typo

I was first diagnosed in Dec 2020, Gleason 6 (3+3), only two out of 15 cores, T2a, with reasonable safety margins. I was advised to have AS, and that made sense to me. However, due to a strong family history, the consultant, even during Covid restrictions, recommended a 6 month follow up. I was never informed of this follow up recommendation, otherwise I'd have pushed for it when it was due.

They just left me on 3 month PSA check ups which didn't significantly change, always between 5 and 7. They forgot about the 6 month follow up MRI. 

22 months later they realised the follow up had been missed and put me in for a follow up MRI which revealed significant disease progression, T3a. This lead to a follow up biopsy. Gleason 8 (4+4) capsule breached!

It was only then, that I sought my medical records,  which revealed a comedy of errors. Including that my disease, although low grade and low volume was always in both lobes, yet was never recorded as T2c, and that that follow MRI had been accidentally not been booked.

Knowing what I know now, I believe the first TRUS biopsy didn't reveal the true aggressive nature of my disease, and it was allowed to progress virtually unmonitored.

I was just lucky, that by badgering them, it made them realise I needed a follow up MRI. If I'd not had that, I suspect I may have now been incurable.

It's frightening, really frightening.

Weirdly, despite my AS being one big c*ck up, I still believe it is a very good option, so long as those chosing it, are probably monitored. I wasn't.

In relation to them prescribing HT, I believe that was to stem disease progression, whilst they deemed whether surgery was suitable for me. The only other reference to HT was that it may have been the reason why my Gleason was raised to 9 (4+5) post op. I've never understood the reasoning behind that one?

Edited by member 22 May 2024 at 17:46  | Reason: Additional text