My 3 men contd

All the best to both of you for Tuesday.

Thanks Chris

All the Best,

Steve

I'm thinking of you too and hoping everything will be ok.

Paul

wil be thinking of you Tuesday, hope all goes well.

Not sure why Julie should refer to you or herself as Saggis ....I guess it is the same reason I am a Gem

which kind of suggests that mine don't hang they just sparkle (for those that have met all three of us just stop sniggering right this minute!!)

XXXXX

MO

PS it could have been worse......

Arrived at the onco's office to find we were being joined by the community support worker - didn't even know this existed!

Onco is concerned and was a bit cross that he hadn't been told about the August result; a problem I guess of seeing uro and onco in 3 monthly rotation. We discussed my theory that the rise could be down to John cheating and eating bacon and mince every time my back is turned. Mr B's reaction was very interesting - he said "yes, I suppose the healthy diet could have kept the PSA artificially low" which is the opposite way round to what I would have expected - that eating these hormone laden foods might artifically raise the score!

We have a plan - thank God for plans:-
- John eats less red meat and more garlic, even if I am not there to nag him
- repeat PSA in Feb and if it has risen to 0.12 - 0.15 or above, we assume the cancer is back
- in which case J will have a choline PET scan
- if there is an identifiable hot spot, more RT would be the first option - Mr P feels that if there is still some cancer it is not in the area already irradiated
- in the meantime, our hospital is trialling a new nuclear tracer for PET scans which is more precise than choline and has a much longer half life which makes it more accessible - the shorthand name is FACBC. John will have one of these scans when the trial launches around Christmas / New Year
- if there is a hot spot on the FACBC scan, refer to step 4 above

So not the best day ever but I have a new theory. In a normal man (with a prostate and no cancer) 10% of PSA is produced in the adrenal glands. Adrenal glands can work overtime when a person is in a state of tension or danger. Some of you know that a dreadful family circumstance has put John in a perpetual state of 'fight or flight' since February - so what if high stress / anxiety can raise PSA levels? I am on a mission now - my initial searches are indicating that research has concluded stress does not affect PSA but I have a small collection of papers that I need to read in detail just in case.

If it turns out that stress can increase PSA production, Julie's score would be high enough to consider having an RP!

Glad you have a plan in place. The FACBC scan looks really promising, I didn't know they use it over here maybe we are catching up at last. I think the key to these scans is the scan itself, as I have just found out with my case, let me explain, the Choline PET/CT scan picked up a single spot of spread to my right pelvic bone of 8mm and the plan was to zap that area, but during my planning I had an MRI scan which was more detailed than a standard MRI, this picked up an additional area of spread to the left pelvic bone of 5mm that wasn't picked up on the CT scan,why? Well the CT scan takes images in 3mm slices and dependent where the scan lines fall may only hit the target once and be easily missed but the MRI I had scanned every millimetre so scanned the Spread 5 times and was seen clearly. By the way if it helps your research I have a simple cyst on my right adrenal gland and have always questioned if it was relevant to my case.

The term Oligometastes I believe translates to Few Metastases and is used to signify different amounts of spread in different country's, I think it's 3 over here and 5 in America. Anyway off to bed now as I have my final 10gys later today.

All the best

Roy

Edited by member 25 Nov 2015 at 01:09  | Reason: Not specified

Seconded from me.

dave 

I obviously read all this with interest having suffered bipolar , panic , anxiety agoraphobia etc. And the fact I have 2 half inch lumps on an adrenal ( re-scan next month ). Also interest re the Choline PET I had. Did they get it wrong ? It took 3 attempts remember and each time was due to tracer production or delivery etc. Apparently it's VERY unstable. I forgot to say they only pick up cancer clusters greater than 7 to 8 mm also.

We are quite upset they are saying I'm probably advanced due to my PSAs , yet are still throwing RT at me out of guesswork. That's why I put it off tbh. Not angry or upset but confused. And then Uro says I'm curable. I can feel a lunch-time drinking session coming on with a bacon baguette but will have garlic stuffed olives tonight to negate it all. I wish you were running my case gal :-)).

All the very best

Chris

Not the best day for you or John. Thank goodness your medical team sound very on the ball. Of course your devotion and dedication to researching anything to do with this rotten disease is amazing.

I think diet sometimes does help for some people but I also think if you enjoy a bacon butty now and then, well that is part of the QOL balance.

The anxiety raising PSA has some merit, I know it does effect other blood results so why not? I guess the biggest trauma will be resolving the issue that is causing the anxiety. So much easier said that done, I do hope John can get it sorted somehow.

All my best wishes and lots of hugs

Xx

Mo

Sending best wishes you both. J is very fortunate indeed to have you as a wife.

Thank you for all the support you give to the forum - this is very much appreciated.