Still feeling a little concerned

Hello Fzh2p0 

I was a Gleason 7 - I had a TURP operation and the "chips" from my Prostate went off for examination.

I was then "upgraded" to a Gleason 9 - Thank you very much!! !!

You are doing well - dry and as my friend Alpine Wanderer always says "histology is king" and your surgeon said

Fzh2p0 said:

margins negative

Those two words are magic - he's got everything!! 

Carry on - you are doing so well - you may well have been upgraded BUT the basta*d is sat on the surgery side in a silver dish - not going "walkabout" - happy days.

You should be fine.

Best wishes - Brian.

Hello Fzh2p0 . You seem to be doing well at the moment but I can understand your concern.

I looked for the figures of upgrade and downgrade in the UK but the latest figures I can find relate to surgery done up to 2016 and the initial biopsy was by the TRUS method. Since then biopsies have improved along with the use of MRI and bone scans at the initial diagnosis stage so I would expect the incidence of change to reduce. 

https://pmc.ncbi.nlm.nih.gov/articles/PMC6798468/

Hopefully all your cancer ended up being removed but nowadays there are well practiced protocols in place to deal with a recurrence if it does occur with the aim of keeping you on the curative pathway. Just keep an eye on your PSA and if it does start to rise make sure that it stays below 0.2 but act if it goes above.

Hi my OH had his diagnosis changed after the op full details of his journey so far are in the biography. 

Hi Whittaker 

what great news about being “leak free” and back to normal after 9 weeks -also the “mothership” if cancer cells gone. It’s great news for your husband and you. 
I totally understand your concerns that you are not done yet with this cancers behaviour and this is normal to feel like this. I’m not medical and so come from an angle of wifey panic, but I would want to have a “mop up” around the margin and anywhere else they thought it could of spread to (lymph node?) next if it was offered. The reason is that your husband has 5’s in his Gleason scores and that indicates fast growing aggressive cancer cells. I’ve read that you’ve started RT, but had some other problems so have stopped it and that’s ok because your husband is on HT and that will put any possible stray cells to sleep if they are there, but I would want to go back and finish the RT just to be sure and because of having the two consultants with different opinions. I would take the opinion follow up with RT and see it through when your husband is ready.
You are right to feel wobbly about T3b it seems very much on the cusp of cure or “treatable” but the good news is your husbands initial PSA of 14. That’s very low as an indicator of metastatic spread so leans towards cure which is great. 
My husband is T3b he was on a curative pathway which changed to no cure. He’s coming off some of his HT drugs to see where he is without them, if he’s stable in a years time he will possibly come off all HT again to see where his “suspected” cancer is and hit it again if it has surfaced.  He originally had extensive RT -killing the prostate cancer mass and the surrounding soft tissues and also a wider reaching area where they thought it was, (Micro metastatic spread that is so small in its development stage that it can be invisible on scans) This is  because his PSA of 115 strongly indicates it’s there.
I hope this helps you? ?

best wishes to you both 

Lorraine 

Hi Lorraine thank you for the reply but i think this should have been  for  fzh2p0 I was replying to him.  My OH has different results. 

Oh yes!!! Total mixup - laws early mornings sorry about that  

Please don't apologise easily done.  We have 9 days of radiotherapy out of 37 left to go.  Hopefully this will finish off the recurrence for us - fingers crossed.  OH has been lucky so far with only fatigue as a side effect of both RT and HT.

That’s brilliant then . Honestly I can’t imagine how I tied up two threads, but really pleased all is well with you