My 3 men contd

Forgot to say that FACBC has already been trialled in Italy which is where they concluded that it was a better option than choline. Small scale project from the look of it but if interested, search for Nanni et al

I also have another new word - oligometastatic prostate cancer. This apparently means that the cancer has spread but there are only a couple of met sites. It is being used to describe the (currently hypothetical) intermediate state between curable PCa and incurable PCa; for instance where the very few mets could be treated by surgery, targeted RT, nanoknife or whatever. Manwith and Roy, perhaps this makes you both oligorchs?

Hi Lyn,

Hope you are wrong about bacon and mince pies as I have the former a couple of times a week and perhaps up to a dozen of the latter a week now they are available in in the shops. I am being closely monitored which includes regular PSA tests and at no time have I been warned that eating these things, or any other foods for that matter, will affect PSA but it's food for though to play on words.

It is very interesting that John is to have a newish type of scan termed FACBC (must research this). Had I known about it earlier yesterday, I would have asked my consultant, who checked on me, about it. (Not suggesting you were slow to post, just that it was a lost opportunity). He did confirm though that the PSMA scan is now available in certain situations at UCLH. These new advanced scans show Oligometastatic prostate cancer better, though finely spread cancer cells can still be missed. As regards the term Oligometastastatic prostate cancer, perhaps you did not read the link which Roy found and I subsequently repeated on a very pertinent lecture given on this subject, so I will give it again. I very much take the point made by Dr K that the longer cancer cells that have escaped the prostate remain untreated, the greater the risk becomes of these mutating and spreading, thereby in time making it more difficult to kill them with any one treatment. https://www.youtube.com/watch?v=NkqizmvqJPo

I, and I am sure everybody here wishes it goes well for John.

Edited by member 25 Nov 2015 at 10:38  | Reason: Not specified

As you say Lyn not the best of days but not totally unexpected I suspect. I keep a close eye on J's progress having had a similar dx.
The plan sounds good....and good to hear about the FACBC scan up here in the north.
Keep us updated with your research...if PSA rise can be associated with stress I need to consider meditation or something ;-)

Hope you can both switch off and enjoy a good Xmas...pity you are not going to London I could have bought you a pot of tea

Bri x

Lynn though not unexpected still a shock.
On the plus side J has got you .Reading posts you have written the research you have done they have definitely picked on the wrong person.
We know you have had better days but J will know you will leave no stone unturned no question unanswered
We hope everything goes well for you both
Everyone on here will be thinking of you and hoping the same

Edited by member 25 Nov 2015 at 10:05  | Reason: Not specified

Sorry to hear this news Lyn but it sounds as if you and your team are well onto it. I doubt the connection with bacon butties (wiping the grease from my face as I guiltily imbibe in the same) you have to enjoy life! I like the sound of the new scans. I have heard about the the treatment on a small number of mets which does sound interesting. Hope all goes well for you and John!

quote from lynn 

I also have another new word - oligometastatic prostate cancer. Manwith and Roy, perhaps this makes you both oligorchs?

perhaps they could call it Ollie mets not be confused with Ollie murs

joking aside here is to everything being ok

regards

nidge

Edited by member 26 Nov 2015 at 05:55  | Reason: Not specified

I second what irun has said.

I would love to give you advice as you have given me, but I just don't have it to give.

I can however give you both my heartfelt best wishes and feel quite sure of a positive outcome.

Don't forget, today is the tomorrow you worried about yesterday. 

Thanks everyone.

John has had a couple of days of being a bit sad and scared and then, true to form, has wiped the entire conversation from his consciousness. If I could bottle his capacity to do this, i would make a mint.

I have read every research paper I can find - frustratingly, not one study has concluded that stress can raise PSA and most have found the opposite. It seems there is no known link.

Damn

Hi Lyn
Sorry for my post too which seemed insensitive on re read :-0 I was very interested in the Adrenal fatigue and scan details. I don't know what to say as you're the " doctor " , but it isn't 0.1 yet and could still be a variety of things / factors other than PCa as you well know. I just hope he is coping as I know what daily flight fight is like , and that xmas goes by smoothly before those tests.
Wishes x

Edited by member 27 Nov 2015 at 07:30  | Reason: Not specified

Here's hoping it's about the scan Lyn. Probably is ! Either way it's info that you need and no-one else can process it like you. I wish you were my tag partner !
All the best
Chris
Ps. Your inbox is full

Edited by member 09 Jan 2016 at 09:10  | Reason: Not specified

Hi Lyn. Good decision. Hope you have a great time. I like the way you keep everything in perspective. I become panicked when any results tests, appointments are due and let it monopolise all my time and energy. Quite possibly ours may be a similar journey to John's although we are earlier down the track and Erwell is quite a bit older . I can only learn and take comfort from others. Cheers Georgina

Sounds heaven Lyn. So glad you had a lovely time and relaxation. Count Elaine and I in on any birdwatching stuff. We love twitching at an amateur level.
Good luck Tues
Good luck Weds
Good luck !
Chris

It turns out the appointment was a mistake, the onco doesn't want to see John until the end of February so it was a wasted journey. Very disappointing news while we were there though - John will not qualify for the trial as the criteria are a PSA of 0.2 or above after RP with adjuvant RT. Salvage RT does not qualify.

So new plan offered - PSA test in Feb, choline PET scan and then decide what to do next.

The other thing he mentioned was that the Leeds hospitals are getting new lab machines this year so PSA tests may be a bit all over the place for a while - good to get some baseline tests in first. Also that a patient under him and Liverpool gets a much lower reading in Liverpool than at Leeds .... the differential being significant enough that they nearly put him back on treatment thinking that he had had a sharp rise :-(

Lyn
Some definitive info on Choline PET. I heard you like a good read.
It was published on the PCUK Facebook page

http://molecular-cancer.biomedcentral.com/articles/10.1186/s12943-015-0481-3

Edited by member 22 Jan 2016 at 08:08  | Reason: Not specified