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My 3 men contd

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User

Posted 25 Nov 2015 at 17:49

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!

User

Posted 26 Nov 2015 at 00:39

Hi,

Just wanted you send you my best wishes and hope that everything turns out ok for John.

I've had a PSA rise before and it does make you feel quite nervous. My next test is tomorrow so I will feel uneasy until I get the results on Tuesday.

Steve

User

Posted 26 Nov 2015 at 05:54

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

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 26 Nov 2015 at 06:58

Lynn you know far more than I ever will about this rubbish disease so there is no advice I can give on what is best but I can give you and all your family my hopes and prayers that between you and the quacks you come to the best way ahead.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 26 Nov 2015 at 08:29

L & J

Sorry to hear the result was not good news. I am quite a few years behind J treatment wise but know how you must be feeling. I put my latest small rise down to the surgery, but I hope you are right about the stress effect, I was very stressed about the outcome of the op.

All the very best for the future.

Thanks Chris

User

Posted 26 Nov 2015 at 08:57

Hi Lyn,glad you have had some good news at last,i went for my first post op PSA yesterday 5 weeks after RAP,i get my results next Thursday when i see the surgeon.Its all in "The lap of the Gods"so to speak.Everyone on here is in the same situation though.Would you be able to explain briefly how low a reading would be to be viewed as acceptable&what i might expect him to say.Daft question to ask you really.This next 7 days waiting will be interesting.Best wishes.Polarbear2.

User

Posted 26 Nov 2015 at 10:59

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.

User

Posted 26 Nov 2015 at 22:23

Originally Posted by: Online Community Member

Hi Polarbear,

I think you have misread my post - it wasn't the worst news ever but definitely not good news :-(

I think that when you go to your appointment, the ideal will be that you are told:

- your PSA is less than 0.1

- you had no positive margins

- the Gleason score hasn't changed loads (it is okay if the Gleason changes a little bit)

- the surgeon gives you a prescription for Cialis or refers you to an ED clinic

- he doesn't think you need any extra treatment

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Nov 2015 at 22:27

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Nov 2015 at 04:42

Hi Lyn,thankyou for your reply,the points you have outlined&im sorry i misinterpreted your earlier post.I must read more carefully before blundering in.

Best wishes.

PB2.

User

Posted 27 Nov 2015 at 07:28

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

If life gives you lemons , then make lemonade

User

Posted 27 Nov 2015 at 22:26

Back today from our week's break so catching up with everyone's posts.

Sorry that you've had more upsets. Perhaps John's way of dealing with it all is the best way, certainly once the initial shock and disappointment are past. Less stress that as for him. Not for you, of course !!

We can't control the winds - but we can adjust our sails

User

Posted 28 Dec 2015 at 23:23

A letter arrived from the onco on Christmas Eve - we are called to see him on Jan 12th which is earlier than expected so either a) he has a place on the new scanning trial or b) they have at last found the details of Stan's cancer and there is something notable about it.

I had mentioned (again) at the November appointment that Stan had died with extensive mets and a PSA of 1.2 but that we still didn't have a response from his onco about whether it was definitely adenocarcinoma - maybe the oncos and uros are finally communicating with each other?

If it is the trial, let's hope the findings are brilliant and the tracing agent is quickly made available in all regions - happy 2016 to you all x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 28 Dec 2015 at 23:33

Hi Lynn, Happy new year to you and John, and all the men and their loved ones on this forum, Best wishes Diesel x.

User

Posted 29 Dec 2015 at 08:53

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

If life gives you lemons , then make lemonade

User

Posted 29 Dec 2015 at 08:57

Hope it gets sorted out to your satisfaction.

Happy New Year to you and yours too.

and yes Chris, Lyn fighting our corners for us would be ideal. I wish you'd been with me in the GP surgery a few weeks ago.

I could have done with you then to fight my corner

We can't control the winds - but we can adjust our sails

User

Posted 29 Dec 2015 at 10:07

Hi there Lyn

I have been thinking about you and reading with some amusement your antics over Christmas with your family!! I was also looking at all the flooding on the news and hoping that you and yours would all be safe.

Whichever outcome it has to be news you need to know. The never resolved mystery but one which when answered, may give you even more insight and foresight. Information that you can then absorb and use to guide and support others on this forum as you do so magnificently. Or possibly acceptance to the new trial for John which would really be welcome news.

Be sure to let us know either way.

all my very best wishes

xxx

User

Posted 29 Dec 2015 at 21:26

Love and loveliness coming your way for 2016 .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 09 Jan 2016 at 02:03

We have decided to delay the appointment with onco for a week and squeeze in a quick trip to Gambia (going tomorrow) - I was just a little bit anxious to do the trip asap in case there was new information or a change in John's status that would require me to notify the travel insurer.

Appointment with Mr B is now the 19th Jan, cases are packed and it is 34 degrees in Kotu :-)

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Jan 2016 at 08:25

Hang on a minute I would like some 34 degrees

Have a lovely time

Don't deny the diagnosis; try to defy the verdict

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