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Chris J's Journey

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User

Posted 26 Nov 2016 at 10:30

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

User

Posted 29 Nov 2016 at 10:17

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

User

Posted 04 Jan 2017 at 15:59

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

User

Posted 04 Jan 2017 at 18:10

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 Jan 2017 at 18:38

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 😄

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Feb 2017 at 10:59

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

User

Posted 23 Feb 2017 at 11:20

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

User

Posted 23 Feb 2017 at 11:29

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"?

User

Posted 23 Feb 2017 at 12:22

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.

User

Posted 23 Feb 2017 at 17:09

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 Feb 2017 at 21:09

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

User

Posted 23 Feb 2017 at 21:43

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 Feb 2017 at 22:29

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 Feb 2017 at 22:36

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 Feb 2017 at 09:09

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 Mar 2017 at 14:56

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

User

Posted 01 Mar 2017 at 15:56

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.

User

Posted 01 Mar 2017 at 16:00

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

User

Posted 01 Mar 2017 at 16:01

Good luck brother.

Bazza

User

Posted 01 Mar 2017 at 16:07

Good on you Chris - a trailblazer!

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