Back in limbo..I think!

Hello Kitkat (Worrypants1) 

It's unfortunate that the call today was cancelled, and it's almost 2 weeks to 14/10.

The "normal rule of thumb" before intervention is 3 consecutive PSA rises or a rise of 2 whole points. As he's almost on the latter I would think a scan would be the order of the day to find out just what is going on although the PSA reading is quite low and they may wait another 3 months as any change may be undetectable.

Sorry I can't be more positive and I may be wrong. Please do let us know how he gets on on 14 October.

Best wishes - Brian.

Hi Millibob,

Thankyou for your speedy response . It seems like we're  on continous roller coaster doesn't it?... I was looking back to one of my husbands reports earlier...I have no clue really what it means, I.e. is it the type that is high risk of reoccurrence?... is the " better type" etc.....could you look at this for me? 

Thank you in advance.

I trust you are keeping well.xx

Hello Worrypants1 

Thank you for your reply. I am not medically trained but from my own experience I can say that both Perineural invasion (PNI) and Focal cribriform pattern indicate that the cancer cells have a high aggression rate and are more likely to grow and spread quickly. "Focal" before cribriform indicates the abnormal cells are contained to a certain area at the time of the biopsy.

Like your husband i am under The Christie in Manchester (I live in Oldham) and the care and treatment I have had in the last 3 years has been brilliant and I am sure that he will be fine. At the moment his PSA is only 1.98, my last reading was 27.5.

Best wishes - Brian.

Hi Kitkat (Worrypants1 ) again I am not medically trained. I know how frustrating delays are, but realistically a few days won’t matter (other than for your stress levels) in his treatment.  I think that the rules are if less than 2 then no action, but I would hope that they either use some discretion or retest straight away.  Either way, I suspect that he should be sent for a PSMA PET scan rather than a CT, but as Brian always says you will get great treatment from The Christie.

Thank you very much for taking the time to respond David, it helps getting others thoughts on this..x

Thankyou for reply again Brian....your experience does reasure me, but I am sorry for your experience of this horrible disease.xxx

And, thank you for reminding me of my " password".....which is just couldn't remember! Xx

I know what it's like when you're readying yourself for the call. It's quite a downer to have it cancelled like that. 

I'd be on the phone to the hospital / doctor / secretary /appointments team asking for an earlier consultation. 

Thank you Jobe, yes, it is a downer, as for ringing them, I have support  my husbands way of dealing with all this....he doesn't  want to contact the hospital....so, now we wait..

Hope you're  doingbas well as you can

X