Diagnosed 2005 T4 Dire Prognosis, but still here.....

Hi George,

Glad you are doing so well, especially as a role model for intermitent HT.

Best of luck to the Black Cats on 2nd April.  Hopefully my sick Canaries can get one over on the Magpies to help you out.

Then of course we both have 16th April to worry about.

But hey-ho, there is life outside the Premiership, one of my highlights of 2016 was going to see Colchester v Sheffield United.

Just as exciting as a Premiership game and the tickets were so cheap I could actually afford a pie and a pint at half-time.

I know Jane Plant (God Rest her Soul) wouldn't approve, and a lot of the time, like you, I do my best to follow her example on diet. 

However I don't think the occassional pie will get me to St Peter's gate any time soon.

I had my last HT jab in November and am due my first post HT PSA test next week, here's hoping I don't break the 0.4 threshold my Consultant has set, but if I do I will take solace from the fact that you are letting yours rise to 21, that's what I call bottle.

We hear all this talk of patient empowerment, and taking responsibility for our own treatment, I guess I might be tempted to defy suggestions that I get back on HT too soon?

:)

Dave  

Great post George, Thank you, I'm married to a long suffering Charlton supporter, and a retired musician. My OH was diagnosed about 6 months ago. He's doing really well, and I'm looking towards goddess status ;-) He is awaiting Brachytherapy followed by RT, he's has been on the HT for about 6 months & finds it hard going, not looking forward to three years of it.
This disease is awful, and has changed our lives, on a positive note, bringing us even closer together. I'm very grateful for this site, it has given me information, tears smiles and comfort.

Thanks again.

Leila

Leila, I don't know which is worse - to be on HT or to support Charlton. George is a superhero to cope like he does for all these years ... Sunderland supporters have little to be cheerful about

Hi George,

Re '...PSA 0.4 seems a very low threshold to come off a 'hormone holiday' and go back on the injections.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

That was exactly my reaction.

Since diagnosis I have been under the wing of shall we call him my main consultant.  I am not sure whether he is primarilly a Urologist or an Oncologist, but he's always been good and straight with me and I have absolute faith in what he tells me.

But radiology is not his forte and for my initial EBRT and more recent HDR Brachytherapy I have been referred to a radiologist, who I also have absolute faith in.

Routinely, ever since diagnosis, when nothing particular is going on, I am invited to an appointment every 6 months with my main Consultant, although sometimes it is one of his housemen who I get to see, I never know who it will be till I get there.  While I have radiotherapy going on I also get to see Radiologist once ever 3 or 4 months.

Now first time around, they had decided I was to have a full 3 years on HT including about 18 months after RT, so I stopped seeing the radiologist, and my main consultant set me a target PSA of no more than 2.5 after 2 years off HT.  Which seemed fair.  In the event I achieved that but then my PSA shot up 2 - 4 - 6 in as many months, so at my next routine visit with the houseman we all agreed that I should go back on HT.  6 months later at an appointment with the main consultant he sort of mused to himself that PSA of 6 wasn't necessarilly the best threshold and he might have let it go higher, however it was too late then I was already back on HT and aggitating for salvage treatment.  

This time around, it is the radiologist who I am seeing who has set the target PSA of 0.4, and I did query it to make sure I hadn't misheard him.  I mean they went to all of the trouble of a template biopsy, deciding which bits of the prostate to cook, and for how long to set the timer etc.  Which suggests that there must have been some bits of the prostate that they didn't fry, and presumablly, while these bits may be poorly from being in close proximity to bits of prostate that had the full microwave treatment, they will nevertheless chuck out some PSA like the ordinary health prostate cells that they are?

So what I think I will do, is obviously wait for my next PSA test, if it comes in at 0.4 or less everything will be hunky dory.  However if it comes in much higher I am inclined to see what my main consultant has to say before I agree to go back on HT.  

As and when I next have HT I will be firmly in the paliative camp, no chance of a 3rd blast of RT, so I will be keen to explore the long term intermitent HT option, as the last thing I want to do, untill I have used up all the other options, is go on permanent HT for ever. 

:)

Dave

Lynn, Being a Charlton supporter is beyond my comprehension, faithful soul checks the  scores every time they play. I make all the right noises, mostly sad type mumblings these days, have you seen their performance! He's been a fan since he was 6 yrs old, now nearly 66, and still a devotee. 

I  am not much better, Shrewsbury town... me and my cousin used to watch from his classroom when he taught at the tech, they played at the gay meadow, ahhh memories of over.. ouch 35 yrs ago.

George, as I write he's playing his strat guitar... and writing some music. My halo is in for a service this weekend, has had many years of good service. I think i prefer goddess, though sainthood has a good ring to it. 

Yes, three years on HT seems a bit out facing,I wonder if he could have a HT holiday after his treatments. He is six months in from diagnosis, for a bloke who rarely saw the inside of a GP's surgery he's finding it all it a bit hard.... He has not built up a rapport with his consultants yet, that might be my role...? 

Yes, we are both pro-active and active, lots to do... we have an organic smallholding, growing all our own food. Cutting back a bit this year to accommodate treatments.

Right, a cuppa tea beckons.

Leila