dopa pet scan

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lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

dopa pet scan

Postby lottie13 » Tue Feb 21, 2012 9:57 am

My husband is having one of these in Paris on thursday.
Has anyone had one and what can he expect.
did you have a one day scan or two day and did the you get the results straight away

lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

Re: dopa pet scan

Postby lottie13 » Wed Feb 22, 2012 8:51 pm

just to say after receiving many many combinations of rdv since friday

1. phone call frid appointment to be 0.830 wednesday morning, needing stay in paris night before --- 1 day scan
2 .message to say sorry made mistake 2 day scan, wed 11am then thursday morning, so cancel tickets and hotel and re book--- done!

felt uneasy so rang her back--- gone home
3 told by another member of staff no its a 1 day scan thursday at 11am

re booked all again

4. monday morning received a phone call, sorry 2 day scan
5. monday morning received email 1 day scan, possibly if we can get the product in time, will ring you before lunch
6 .monday afternoon 6pm, I sat by the phone for 3 hours! sorry pharmacien is out till tuesday will ring you in the morning
7. tuesday am, phone call from nuclear secratary all ok for thursday at 11
8. still worried so rang the scan unit, oh no the appointment is 0830 thursday morning and if not clear then have to go back friday

so I rang round local hospitals and found same scanner at Nantes, emailed prof in Paris and said we would rather go to Nantes, ok

so cancelled the original scan by phone and received a load of abuse, I apparently being unreasonble and impolite!!!!!

lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

Re: dopa pet scan

Postby lottie13 » Sun Feb 26, 2012 10:53 am

just a quick note to say scan moved to Rennes as Nantes can't get the product until april/may

lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

Re: dopa pet scan

Postby lottie13 » Wed Apr 04, 2012 7:38 pm

thought i'd just update.
husband had scan in Rennes.
I went to england for 10 days and when I came back, results had still not arrived!
I rang the unit and the nurse said sorry doc forgot to read and verify results.
results faxed to us and the prof in Paris, who rang, livid to ask why Rennes had done the scan changing the product used, so that in fact it was completely useless!
I faxed Rennes the prescription for the scan and 2 letters, so it was very clear what the scan was, this was even after I rang them first to make sure they did 18F DOPA petscans in their unit.
So off to paris for the scan proper, what a waste of time.I am so fed up with all of the errors, I have just written a very strong complaint to Rennes, lets see if I get any reply.

pennycsf
Site Admin
Posts: 609
Joined: Sun Jan 24, 2010 7:19 pm

Re: dopa pet scan

Postby pennycsf » Wed Apr 04, 2012 8:17 pm

Hi Lottie
Good to hear from you, despite the ongoing problems!

Has the time come to make a formal complaint? There are "procedures" for doing this with which we could help.

So glad that you and your husband are still hanging on in there :)

Penny

lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

Re: dopa pet scan

Postby lottie13 » Wed Apr 04, 2012 10:08 pm

I have written a letter to the mediator at the hospital, rennes chu.
but if this is the wrong way to go about it I would be very pleased to know.

pennycsf
Site Admin
Posts: 609
Joined: Sun Jan 24, 2010 7:19 pm

Re: dopa pet scan

Postby pennycsf » Sat Apr 07, 2012 12:25 pm

Hi Lottie
That is indeed the best way forward. Is the mediator part of "La Commission des relations avec les usagers et de la qualité de la prise en charge" or CRUQPC (Committee for relations with users and quality of care)? They are the people that complaints are ultimately referred too and I see that there is such a Commission situate at CHU Rennes. More details are in the Links Section under Complaints.

Do let us know how you get on when you can, it is extremely useful for us and others to learn how the system works. I am only sorry that you and your husband seem to be the guinea pigs for so many of these things!

Penny

lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

Re: dopa pet scan

Postby lottie13 » Sun Apr 08, 2012 9:47 am

last thursday we received a letter containing the results of the dopa scan 'the gold standard for neuroendoccrine'
based on the scans he has had for the last 6 years and recently in paris prior to this one, we were told that my husband had
no liver involvement,
basically nothing else to worry about other than the large mesenteric mass 50mmx38mm approx.which is considered inoperable due to its infiltration.
This more detailed scan has revealed 5 segments of his liver have foyers, which showed up as neuroendocrine, a cancerous nodule between his liver and his heart, mulitple other nodes and one near his spine, d11.
It also showed a huge uptake of 30suvmax, in his apparently stable mass.
On receiving these results I rang my husbands prof to ask hime to talk us through the results.
His secretary was downright rude, he wasn't there but said he will ring you on friday but i dont know when.
so we stayed in all day and received no phone call.
Secondly on thursday evening my husband had an episode of flashing lights with multiple floaters, this settled to one large floater, with flashes only if he moved his head quickly.
Friday morning first thin I rang our med traitant and asked for a home visit, told apres midi, well guess what no one came
First thing sat am 8am I rang the surgery, the secretary, diff one! said that the doc had been too busy but the secretarty had tried to ring me but no reply.
I told them this was not possible as
1.. we were in all day waiting for a call
2 our phone has a call log and they did not ring.
we were put thro to our dov and she agreed to see us at 1.30
she talked through the results and in her limited experience, my oh is her first case! she is unsure if there is any treatment available
his eye is not thought to be linkedas his headscan was clear, but as he is diabetic he needs an appointment for tuesday just to be sure.
finally our doc said she had spoken to the doc in Rennes who did the scan and he said he did it because the dopa was too expensive! she also told me that he said, "anyway they definitely wouldnt have had it done in England!

I feel gutted, let down and lots more, my only thing that I can hang on to is that I have done everything and more within my capabilites, the docs and the prof who have treated my oh can't say that!
Will the prof every ring, who knows, if he does what can he say oops sorry!
in the meantime we intend to live our life to the best we can.
On a simple level it makes me think, if you went hospital with a broken leg and they couldnt afford an xray would they send you home and say no you dont have a broken leg!

If anyone can take anything from this some things are clear,
ask your so called expert how many cases have you seen before
is the scan the gold standard scan for my type of cancer
is the proposed treatment tried and tested and what are the success rates
take nothing at face vakue, question, insist on discussion and think before YOU make decisions

lottie13
Posts: 113
Joined: Mon Feb 22, 2010 1:23 pm

Re: dopa pet scan

Postby lottie13 » Fri Apr 20, 2012 8:16 pm

well its now 3 weeks since the scan and my husband has yet to talk to someone about the results, we have been promised phone calls but they never come, apparently last week they held a multidisciplinary meeting to discuss, and we were told that the prof would ring on that friday, so for the 2nd time we spent all day friday waiting, no call. rang first thing last monday, oh the prof and his secretary have gone on holiday, I managed to keep pestering and found out that my husbands incomplete dossier, dopa scan results missing had been passed to another doc, he said he was having a team meeting on thursday evening and would ring me today, despite several phone calls to his secretary , he did not ring.words cannot actually describe how we both feel, but there seems to be a total lack of respect for my husband, no compassion and a total disregard for his rights.he is on the verge of giving up, no not because of the cancer but because of the way he has and is being treated by the medical profession.
When I ring I am made to feel as if I am in the wrong and totally at fault for wanting to know what is going on.
where on earth do we go from here!!

pennycsf
Site Admin
Posts: 609
Joined: Sun Jan 24, 2010 7:19 pm

Re: dopa pet scan

Postby pennycsf » Fri Apr 20, 2012 8:36 pm

Oh my dear Lottie, I don't know what to say. It has been such a long and hard haul for you both, I can well understand that your husband has had enough and that you both feel abysmally let down by the system and the doctors. Sadly any words of sympathy won't move things forward.

I know you have complained about the mess up with the scans at Rennes, but complaints take time to be resolved. Here you need to keep moving on to get your husband's situation sorted and to get him back on an evenish keel.

I know that the Prof is in Paris - can you get an appointment to see him? Even if it is a few weeks away, and yet another journey, you would be able to talk to him face to face. The telephone is not always the best medium for anything complex. Or what about your GP? She has been helpful, could you camp on her doorstep until she talks to someone who has some idea of what is happening? You need to know what treatment your husband needs NOW, surely the GP should be kept in the picture as she is the one to prescribe the ongoing stuff.

Impossible, I am sure, but try to rest over the weekend. You can't do anything til Monday, take advantage, if you can.


With every best wish
Penny :)


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