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Chris J's Journey

User
Posted 24 November 2016 18:00:20(UTC)
CJ

Sorry to hear your news ,I know how it feels to get PSA rises. I am attending a weekly class at a Maggie's centre, as the Urology nurse said we are coming up with new treatments all the time and we never know what tomorrow with bring.

Take care.

Thanks Chris
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User
Posted 24 November 2016 18:21:53(UTC)
Hi Chris
Sorry to hear about your latest battle. Hopefully something can be picked up in next scan and dealt with.

Sandy
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User
Posted 24 November 2016 18:52:25(UTC)
Horrid, grumbling persistent disease! Very sorry to read your update.
Henry
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User
Posted 24 November 2016 19:36:17(UTC)

Hi Chris

I'm a newbie on here but I have read a lot of your posts and you are a frequent contributor on so many issues. I'm sorry to hear about the latest results, but I'm sure you will remain positive.

Good luck

Chris

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User
Posted 24 November 2016 20:52:14(UTC)
Hi Chris,
This bl##dy disease, I loathe it with a passion. I'm sorry you are having it tough.
Thoughts are with you.
Leila
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User
Posted 24 November 2016 21:07:34(UTC)

I looked at your post and felt pleased that something is happening - this is exactly why you stopped treatment, to let the cancer grow a little so that the specialist can find it on a scan and hopefully convince you that targeted treatment is worthwhile (or not)

I am always the odd one out - sorry love - but just relieved that you are not going to be in the no-man's land for too long. The sooner you can have that scan the better, in my opinion xxx.

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


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User
Posted 24 November 2016 21:54:11(UTC)
Hi Chris,
I am not going to offer advice or platitudes just a helping hand through the tough times.
Keep your chin up.
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 24 November 2016 22:21:08(UTC)

100% agree !
I don't think I said anywhere in my post that I was feeling sorry for myself. I'm glad it's moved on , and the sooner the scan the better in my opinion. The waiting sucks. My biggest problem is what to do about the results , but I can worry about that when I get there. Thing is , if the word cure isn't used anywhere , then I'm still fully against RT just for the sake of it.
I'm just glad it seems Xmas will be clear , and so I can eat and drink and try to be merry. But to be fair I think I've truly forgotten how to be happy and enjoy myself :-(




If life gives you lemons , then make lemonade
User
Posted 25 November 2016 10:15:20(UTC)
Chris,

Only just read your update... hope scan goes OK and good luck with whatever you decide on the next part of your journey.

Keep Right On...

KRO..
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User
Posted 25 November 2016 11:07:02(UTC)

Hi Chris. Just caught up with your update. Sorry to hear the road is still bumpy but keep on with the positive attitude - it can't hurt and some people believe it can seriously help. You're an inspiration with your candour and understanding of others, and you deserve the ball to bounce your way. I'm sure it will. 

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User
Posted 26 November 2016 10:30:02(UTC)

Hi Chris hope your up coming scan shows a path forward for you , enjoy xmas all the best Andy

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User
Posted 29 November 2016 10:17:37(UTC)
Hi Chris

I think you and your Onco are approaching this in the right way by allowing the PSA to rise so that you will know where to target the beam. I also have a consistent doubling time of 6 weeks when off HT so keep an eye on the figures and act accordingly. I have been kept off HT now for several months to see how my treatment works which I will know more about next week. 3 months ago it stood at 14.2 so if my treatment hasn't worked I will demand to go back on HT to reign it back in as it be way too high for comfort.

All the best

Roy
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User
Posted 04 January 2017 15:59:07(UTC)

Just an update to keep my post factual. PSA test today 1.4 up from 0.91 five weeks ago. So still effectively a six week doubling time.
Now on 4 weekly testing.
Interestingly I asked Onco today if I could have a PSMA PET scan anywhere in the country and he said no and that trials are over. Tentatively booked for Choline PET scan in six weeks time.
Cheers all you amazing people and may 2017 be good to you all xx




If life gives you lemons , then make lemonade
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User
Posted 04 January 2017 18:10:03(UTC)

And to you and yours too Chris

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 04 January 2017 18:38:26(UTC)
I have been wondering how you are getting on Chris, I suppose there is a reason why they are waiting for six weeks before scanning you. Very frustrating though there is so much hanging around and waiting with this disease.
Just wanted you to know that you are in my thoughts.
BFN
Julie X
Ps your WTF card is in the post šŸ˜„
NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 February 2017 10:59:42(UTC)

Ranting angry
So Onco agreed I could have PSMA PET instead of Choline PET. It's the better scan. But area won't pay for it. So I agree to pay privately. But I need a referral. But my Onco won't refer as it makes him responsible for paying. So he writes to my GP and asks him to refer me. And he won't refer me as it's the Onco job apparently. And I've got £1800 and a train ticket and I can't self refer.
Found out this morning that no one has referred me for anything , even though I'm sat here with zero treatment and cancer growing inside me somewhere. All come to a grinding halt with everyone sat with their thumbs up their as****s.
I would happily pay to be in an abandoned barn with an AK-47 and 8000 China plates hung on the walls




If life gives you lemons , then make lemonade
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User
Posted 23 February 2017 11:20:57(UTC)

what a bloody fiasco.

Could you see a private GP and get him to make referral?

What about PALS or whoever senior takes hospital complaints.

Hope one of the others can point you in the right direction.

Lyn might know

We can't control the winds - but we can adjust our sails
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User
Posted 23 February 2017 11:29:36(UTC)

Chris,

  What a ridiculous situation to find yourself in through no fault of your own.

 

I know it's an extra outlay, but is it worth seeing your (or a GP) or a consultant privately on the proviso that they would refer you for that scan.

I was self-pay at the time and got referred to UCHL by my onco for my scan  and in due course I got hit by the bill for the scan direct from the hospital.

 

Dave

Not "Why Me?" but "Why Not Me"?
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User
Posted 23 February 2017 12:22:49(UTC)

That is F'ing ridiculous.

How's this for a course of action?

1. Contact Uro/Onco and say "I'll take whatever scan Area will pay for, if that's a Choline PET, then so be it, but can we get on with it quickly please?".

2. Separately, investigate how to get referred for a private PSMA PET scan by asking GP to refer you privately to a Uro/Onco who can book the scan. If GP says he can't do that, then get him to suggest how you can get so referred. Plainly, it is possible to go private Mr GP, people do it all the time, tell me how to do it.

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User
Posted 23 February 2017 17:09:02(UTC)

That is plainly ridiculous especially if you are willing to self pay and they are not being entirely honest with you.
We used to have all sorts of problems getting private referrals from the GP and due to OH health anxiety we have had many.
This is the route we now generally take.
1. Find out where scan or test can be done.
2. Make appointment with GP and sit in his office whilst he writes and then prints the referral to make sure it is correct. Referral does not have to be to an individual. It can be made to the radiology department at xyz hospital for example and can specify that you are self paying.
3. Phone hospital and ask for email address to send referral to. Scan and email referral then phone back to make sure that have it. Referral usually needs to be checked by radiologist and then appointment can be made.

User
Posted 23 February 2017 21:09:29(UTC)

would make my blood boil Chris, but try going for a private consultation all the best Andy

User
Posted 23 February 2017 21:43:12(UTC)

Some are missing the point I think; this isn't a request to see a doctor privately, it is a request to use a piece of equipment. Paying the £1800 to lay on the machine is one thing; someone still has to read and interpret the results and that means the people with the machine :-/

Chris, if you were mine you would be down at the hospital having a choline PET as we speak. In your head the PSMA is best and will solve your problem but apparently your medics and CCG don't agree otherwise it would have been sorted. I agree with your onco that it is the GP's responsibility to refer you if a private session on the scanner is truly available but is it really? What I mean is, have you spoken to whoever has the PSMA tracer and they said "yes we offer private consultations for £1800" or did the CCG refuse you because it would cost them £1800 and you said "I will pay that"?

If the former, I agree with the onco ...GP should refer. But if the latter, it may be that there simply is not a system for the onco or CCG to pick up the bill and then transfer the cost to you somehow. Furthermore, because John was self-funding I used to get an itemised bill for everything he had. The PSA test cost £75 but then we also had to pay for all the extras (I can't remember exactly what they were but probably the syringe, the phlebotomist, for the the result to be uploaded onto the system, stuff like that)

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


User
Posted 23 February 2017 22:29:48(UTC)

Hi Lyn
My Uro and Onco agree this scan is better. It was agreed at the MDT. But my area won't pay. Zero point in a further Choline PET which at best for PCa is 47% effective. You know me and QOL -- I don't want a lymph node taking out or RT , if in fact there is further spread which Choline can't possibly see as it's not attracted to PCa enough!!
But yes you are right that they won't just give a scan for money. They want to see me and assess me and then put me on the list. To be fair they are trying to do it on the NHS although my hand is on my wallet. The scan is there , if I lived in London I would be having it or had it already. The problem is doctors not wanting to refer or seek second opinions from an already overloaded NHS , total communication inadequacies and everyone s**t scared their budget is going over target.




If life gives you lemons , then make lemonade
User
Posted 23 February 2017 22:36:44(UTC)

I would still make you go for the choline - all part of the longer game .... "See, Mrs commissioner! I did it your way and it failed; now send me for the PSMA"

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


User
Posted 24 February 2017 09:09:09(UTC)

Chris You wanted that test so have another try. At this point only focus on the problem - responsible for the cost. Have you directly contacted hospital admin on how you could resolve it?

If you go for Choline and it fails will they say we have spent enough so PSMA is now totaly out of the picture?

Ray

User
Posted 01 March 2017 14:56:51(UTC)

Hello all
Saw Onco today. Didn't take a PSA sample. But it's all sorted. Yes I can have the PSMA PET scan at UCLH in approx 5 to 6 weeks time. 95% likely to be covered by NHS. I won't need to see a different Onco. Just turn up for the scan. He quite excited as I will be the first Southampton Prostate patient to have this scan. I was one of the first to have Choline PET last year.
So I'm pioneering scans and ED treatment et al !! I may be quite a negative person but I like to get things done right if I possibly can.
He feels the results of the scan will be fairly conclusive. He would still like me to have RT to my bladder neck but we will decide for sure at end of April when all the results are in.
Feeling positive , winter is over , days are lighter , I've even got myself a new job even though I am retired on a pension.
Good luck to all
Chris




If life gives you lemons , then make lemonade
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User
Posted 01 March 2017 15:56:13(UTC)

Hi Chris,

I have been following your journey for some time know and you must have the patience of a saint think i would have blown my top with what you have gone through, chin  up mate and good luck with the treatment.

John.

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User
Posted 01 March 2017 16:00:58(UTC)
CJ

Great news about getting the scan you want, next week I see an onco for the first time in my journey and will be discussing the PSMA test. As you said to me in another post make sure you get the right treatment.

Thanks Chris
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User
Posted 01 March 2017 16:01:31(UTC)
Good luck brother.

Bazza
I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.
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User
Posted 01 March 2017 16:07:36(UTC)

Good on you Chris - a trailblazer!

E

x

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User
Posted 01 March 2017 16:15:01(UTC)
Great news - well done!!
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User
Posted 01 March 2017 16:50:09(UTC)
Great news Chris, it sometimes pays to persevere. Now it's time to see where the little bug***s are hiding.

Roy
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User
Posted 01 March 2017 17:46:07(UTC)

Chris

Nice one - fingers crossed the winning run continues.

Ray

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User
Posted 01 March 2017 19:01:18(UTC)

Great news Chris.

I'm so pleased you got it sorted

We can't control the winds - but we can adjust our sails
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User
Posted 01 March 2017 22:19:58(UTC)
Brilliant news Chris that's one in the eye for when the computer says No .
You are a trailblazer fighting the system and getting what hopefully one day will be routine for all. Well done .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 02 March 2017 01:23:37(UTC)
Well done, Chris.

Hope everything goes well for you.

Steve
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User
Posted 02 March 2017 08:08:39(UTC)

Excellent outcome

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


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User
Posted 19 March 2017 13:31:25(UTC)

PSMA scan set for 18th April at UCLH. I'm having to go alone as El needs to look after our disabled son at home. Even worse it's her 50th birthday which is rotten timing. However I will be traveling the day before and be meeting my nephew and niece for dinner which will be nice.
I'm in such a dither and both happy yet upset with all this. The thing is , those of you that really know me realize I was ready to top myself literally when all this started. The fears , the worries , ED , incontinence , you name it. I am now exactly 21 months post op and if my cancer had been removed fully I'd be in a really really good place right now. I'm looking good at 12 stone , feeling good and strong , mentally well , happy marriage etc etc. I am totally continent and am also at the stage where daily Cialis taken at night allows me to have fully successful sex anytime anywhere. My orgasm is great , yes I miss ejaculating a bit and I've lost some size. Essentially I've been very lucky.
My problem ???? It's all going to start again now one way or another after this scan and I'm getting extremely down sometimes about the thought of losing erectile function again whether it be via HT or RT or whatever. We both said this morning we would be chuffed to nuts if I had been undetectable PSA. We would be in a great place. Anyway that's my Sunday moan / wobble off my chest. The show ain't over yet but I may be stubborn about treatment plans etc.
All take care and best wishes on your own journeys
Chris




If life gives you lemons , then make lemonade
User
Posted 19 March 2017 13:55:44(UTC)

Chris,

I played hockey for 40 years, I started in 1964 and finished in 2004 when my knees just wouldn't take the twisting and turning anymore. I wasn't much good at hockey, a typical 5th XI player, but I loved it. I hated having to stop playing but I quickly got over it and moved on to other things (I play croquet now).

When I was diagnosed in July 2013 with advanced PCa and was put onto HT then, as we all know, that completely buggered up the sex drive and any ability to raise a smile. It is going to sound cold and unemotional but I've taken exactly the same attitude to that as I took to having to stop playing hockey, that's over, stop regretting it and move on to other things. It works for me.

If things change for you I hope you are also able to adapt and accept. Remember, love is far more important than sex.

David

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User
Posted 19 March 2017 18:45:07(UTC)

I love a good hockey player.

CJ, one step at a time - don't even start to fret about decisions you may or may not make (or someone else might push you towards) until AFTER you have the scan results and know what you are dealing with. You are trying to second guess the outcome and it does you no good at all.

If ..... IF ... the scan shows a defined tumour or tumours, they will tell you what can be done about them. If it is a lone met it may be easy to target with a short sharp zapping. If it is a widespread scattering of hot spots, they will have a conversation with you about whether and when to reintroduce HT (and you will be the master of that decision). If the scan doesn't show anything, you will be where you are now - playing poker with your PSA and waiting for something more definite to come along. Who knows what options might be available that wouldn't knock you back so much since you have come so far.

Baby steps, my friend, baby steps.

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


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User
Posted 19 March 2017 18:53:35(UTC)

I've read your profile Chris and the way you have constantly picked yourself up from the depths of despair and fought back is awesome. Lyn's right. No point trying to second-guess the outcome of the scan. Whichever way it goes I'd put good money on your ability to handle it.

Will be thinking of you.

E

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User
Posted 19 March 2017 19:53:37(UTC)

One thing we have all learnt is that second guessing wastes our energies and sends us down unnecessary paths. Whatever the scan will or won't reveal will happen and then next steps will be considered.

Just get on with living for now a good month before the scan. I know it's hard but you are strong and have dealt with a lot.

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User
Posted 19 March 2017 23:03:08(UTC)
Oh Chris I totally understand your thinking and that is the problem isn't isn't it ! How do we stop our brains thinking and going into over drive! Nothing I can say will stop you being in that permantly worrying state but what I will say is while we are are worrying we forget to enjoy life and you my friend have so much to live for and so much life yet to come.
I know you are a dog lover and so this anology will ring true they have the most wonderful way of living in the moment , they don't worry about the past or the future they only have today in there minds.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted 20 March 2017 10:28:03(UTC)

Originally Posted by: Online Community Member

I love a good hockey player.

Damn, damn, damn, damn, damn! That's me chances blown then.

Are you prepared to make an exception for a crap hockey player? 

User
Posted 29 March 2017 15:13:18(UTC)

Psa up to 2.7 from 1.6 eight weeks ago. Doubling time estimated at 12 weeks / 3 months roughly.
Been off HT for exactly 7 months and psa has risen from 0.13 to 2.7 in this time. Scan in 3 weeks so I should have a perfect figure for PSMA PET. Whatever is going on will be seen hopefully. Just an update.




If life gives you lemons , then make lemonade
User
Posted 29 March 2017 15:45:59(UTC)

I hope your next scan is OK and your PSA comes down.
There are still more ways to fight this f**** issue so you can also make orange juice besides lemonade.
The best to you.
Sending my most positive waves from Spain.

Lola

User
Posted 29 March 2017 21:11:52(UTC)
Sugar Chris Not unexpected but not what you wanted to hear , hold steady my friend / Hold steady .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 March 2017 21:33:36(UTC)
CJ

Not good that there is a rise, but if I understand it correctly a higher PSA makesā€‹ the result of the PSMA test more reliable. Hope all goes well.

Thanks Chris
User
Posted 30 March 2017 00:15:17(UTC)

Inching along - not too fast yet. Fingers crossed for the scan in 3 weeks x

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


User
Posted 30 March 2017 07:25:09(UTC)

Hi Chris

Good luck on your scan mate and hopefully you'll get a definite answer.

Sandy

 
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