Gleason 9 oh dear...

Hi Patrick and welcome 

Looks like just caught it in time, potentially still curable. I know you're waiting for a further scan for spread but hopefully will be negative.

Certainly PSA looks ok, not too high 

Yes, Radiotherapy your best bet and HT asap although realise scan first, at least when starting the HT should stop it in its tracks and then the RT will start.

So best wishes, let us know how it goes 

Steve 

Thanks, here's something that really surprised me though. The leaflet for the Orgovyx  under "common" side effects says "up to 1 in 10 people" may get  (among other side effects,) "decreased  interest in sex" ?

What? So 90% are less likely to get loss of libido? That just reads completely wrong.

Hello Patrick

Welcome to the group and the Gleason 9 Club (Yes mine is a 5+4). The good news is it's been diagnosed and you are being treated, although I would be pushing for the PSMA scan as soon as possible as you don't want the little sods going "walkabout". The sooner you start HT the better.

I was thinking Orgovyx as I've seen good reports from it but my team like Decapepytol and it works for me.

As you may well be starting an interesting journey - how about filling in your profile (you can read mine by clicking on my user name or avatar). To start yours on your home page click on the chair - top right, then "profile2 then "edit" and once you have written something don't forget to click on "save".

Do keep us updated. I wish you well with the scan. Feel free to ask any questions - nothing is too trivial.

Best wishes - Brian.

Thanks,  updating profile. I expect the pet scan by next week. The medical guy did have a sense of urgency.

Yes, doesn't make much sense that, I have  to say that during treatments that subject probably falls to the back of your mind although can/does come back 

Steve 

Even though I had already done a lot of my own homework on what to expect from hormone therapy I do feel today they downplay the sexual side of effect by not actually mentioning or passing over quickly as "lower libido" as a euphemism for quite severe erectile/sexual effects that would be very disturbing if you weren't expecting them and even if you were.

I have yet to know how I will feel when they kick in.

I think when it comes HT  it can affect everyone differently .

Keep us posted.

All the best

Steve 

Hello Patrick (Patrick100022a3b9) 

Here's the link to the NICE guidelines for Prostate Cancer management:

NICE Guidelines - Prostate Cancer  : It's the first thing they should tell you when offering HT - 1.3.1.

Patrick100022a3b9 said:

I have yet to know how I will feel when they kick in.

It was strange at first for me, however we found plenty of ways of having "fun".  To be honest as a couple we are closer together AD (after Diagnosis) than BC (Before Cancer) and we were pretty close then!

If you have plenty of time on your hands - here's a link to a thread on the General Cancer chat group you may find interesting:

 Sex and cancer - Let's talk 

I will tag my friend Alpine Wanderer to this post - he will be able to give you some cracking advice about "keeping the old man fit" during HT.

Best wishes - Brian.

Yes, I saved a copy of the NICE guidelines  and will revisit them. I hope following the Pet scan I will get more support.

Here's the thing, I am that rarest of  birds. Due to my poor adolescent mental  health and then depression in later years I have never had a sexual partner but have had feelings like most other folks  and had to internalise it all and  "entertain myself" . I have never known what real adult intimacy  feels like and as I get older , that got harder to do anything about.  Now this will make that even more remote. I know it can be devastating for couples and  I know there are many men without partners who get a PC diagnosis, I suppose I only have to please myself  . but  I try not to dwell on the adult life I have never known and will almost certainly never know .  

Sorry for the over sharing, this probably isn't the place. It's just that i was already such a rare case it just makes it hit home.