Hi

I am no expert on prostate cancer - BUT I do know that Gleason scores are just part of the identification of a cancer - knowing the score does not provide all the information needed to reach a conclusion. 

Gleason scores show how aggressive a cancer is - which can indicate how likely it is to spread outside the prostate.  The information helps Dr to decide upon the most appropriate course of treatment. 

But to get a clearer diagnosis other information is required AND a higher Gleason grade does not automatically mean the cancer has currently spread - it just means it is more likely to do so. 

Therefore it is possible to have a higher Gleason score on a tumour which is localised to one area of the prostate and not spread - which might be why your Mum says it is Stage 1.  Stage 1 tumours in all cancers tend to be localised and not yet spread.   

You need more information and maybe your poor Mum has only remembered bits of what your parents were told.   Most people only remember 10% of what they hear after all. 

Can I suggest that you telephone the cancer research helpline nurses on 0808 800 4040 on Monday and ask them to explain a bit more about prostate staging and what different terms mean.  

Your Mum might be trying to protect you - its a Mum thing after all - but I think you are jumping the gun with very little evidence.   You need to understand the technical bits - ask the helpline nurses to put it in context for you, then see how you can find out more information about your Dad’s situation.   

Once you know the right terms and what they mean you may find you can ask a question which jogs your Mum’s memory. 

And then maybe you could ask if you and/or your sister can go to the next hosp appointment.   

Wishing you a successful hunt for the answers you all need along with my very best wishes to your family xc