dopa pet scan

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

Re: dopa pet scan

Postby lottie13 » Sun Apr 22, 2012 10:54 am

just to say that we had a reply from Rennes CHU, to say the eugene marquis centre, although on their campus is independant, my letter has been passed to them.
Surprisingly I have now received a letter from the director of eugene to say he is investigating my husbands case.A good friend of mine, french, who is helping me with this says I should wait a week, then chase it up, as here things often get sifted to the bottom of the tray in the hope that you will forget about them.
Well this time they have chosen the wrong person at the wrong time, what do we want, just that someone is accountable for their actions, cancer patients can at times be very vulnerable and it is for the rest of us to fight their corner.

pennycsf
Site Admin
Posts: 592
Joined: Sun Jan 24, 2010 7:19 pm

Re: dopa pet scan

Postby pennycsf » Sun Apr 22, 2012 3:12 pm

At least that shows some progress. I see that the Eugene Marquis Centre, according to their website, is one of the cancer centres of France! If they have any reputation to keep up, they should take speedy steps to investigate your complaint.

I absolutely agree that it is vital for everyone who feels let down by any system, whether in France or elsewhere, to follow up with a complaint. The tragedy is that most people don't bother because either they are too busy and exhausted from the illness/support or, sadly, the patient has died.

No improvements can be put in place until someone acknowledges that there is a fault in the system and something must be done.

Good luck with that and let's hope that Eugene Marquis reply speedily.

Penny :)

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

Re: dopa pet scan

Postby lottie13 » Fri May 18, 2012 6:13 pm

my husbands prof, finally rang, firstly on my mobile 23rd april.
he said that my husband is running out of options! but they are going to try him on combo chemo, but needed to test a slide first, but would contact soon.
Finally last week thursday 10th May, the prof rang, I was out so no questions were asked.
He told my husband he would be put on Capecitabine and Temozolomide chemo for 4 months and then a scan, he said he would send the prescription in the post.
Nothing was said regarding side effects, what the goal is ,prognosis with or with out treatment?
We have little support locally as our doc doesnt really understand the illness.
A french friend of mine said that when she took an english patient recently for diagnosis, she was given a dedicated cancer nurse who she could ring, if she has a problem!
I don't feel I can contact the prof or his secretary either by email, which is usually ignored or by phone as the sect just says it is all in hand and the prof is very busy.
We had to see our gp on tuesday and she has had no scan results or any letter since feb this year.
We received the dopa scan results in the post from the nuclear doctor but despite an email from my husband asking the pro to explain them in detail what they actually mean, he has not done so.
So its chemo by post and hope for the best.I was livid with my husband for not asking all that we had discussed but he is just too downhearted I feel.
Will let you know how the chemo goes.

We also had a reply from the director of the eugene marquis, saying that our doc wrote TE dopa ,instead of TEP dopa but he did admit that the doctor there should have asked for more information.
Ha also said that the results of the scan were most likely to be the same.
Wrong, the letter from rennes said just the mesenteric masse.
The results from Paris multiple areas showed up on scan including 5 lobes of the liver, one near his heart and many others, or tho as yet we do not know the implications!


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