Anyone give me any thoughts on a PET/Scan? I’ve had a high reading from my tumour makers - posted under this discussion last week, and I’ve now heard back from my Onc in UK, I live in France now, and he thinks that an MRI isn’t worth having as the CT scan I’ve just had shows the abdomen and it’s not showing anything out of the ordinary, whereas a PET scan would show other things, if there is something to show. However, it would mean going to UK and paying - it’s about 1,000 I think…!!
France are insisting on an MRI as they don’t know what else to do - but I had one in May and hated every second of it not for claustrophobic reasons at all - so am keen never to go there again.
Would value any thoughts and if anyone has opinions on PET/CT Scan. I’ve read that they inject your with nuclear fuel!! and I’ve already had three bone scans in 4 years - which they inject that into you too - and I suspect with other scans, so isn’t all that bad for you???
Hi there, I had a PET scan a year ago, as the hospital messed up my bone scan date (over Christmas poor communication) and the surgeon also wanted to see if there was cancer in an intermammory node, as the SNB had highlighted something. Don’t worry about the claustrophobia as it’s like a big donut, open at each end. Yes I was injected with the nuclear stuff and then had to lie still in a room for one hour, I haven’t heard that it’s bad for you. I’ve no experience of an MRI so can’t say whether the machines are similar. I was told that it would cost about £1500 if I had to pay! The PET did show cancer in one intermammory node, very rare apparently, just my luck, but beacause of the accuracy of the pictures they were able to remove it in surgery. In that respect I am very glad I had it!
Many thanks for your reply Liz. The MRI was the worst thing for me - ever - and I’ve vowed never to have it done again, so the PET sounds just like the CT scan, I’ve had 4 of those, no probs, although you don’t have to stay for an hour. I will ask here if there is a chance I can have one - might have to go to another hospital, but if not, then I guess I might have to bite the bullet and go back to UK…!!
I think they fear I might have a issue with my ovaries,which I still have, and I know there is a cyst on one of them. So it might put minds at ease to have it done.
If it puts your mind at rest have you thought of asking about getting a “private” PET scan here? I found in the past that an MRI scan for my back was only 70 euros compared to a friend in the UK whose was over £700.
I know that Claudius Regaud do have a Pet scanner, and possibly many of the nuclear xray cliniques that are dotted around.
I can’t be much more help unfortunately, in your shoes I think I would just insist as much as possible and ask why they won’t give you a PET scan as you seem to have had other scans before. Where do you go for your treatment in France? If you have not been to CR your GP can refer you. They are a centre of excellence and there is only about 5 of them in France but they do seem to know their stuff.
If you would like me to do some research for you into where PET scans can be done in your area please let me know, I am happy to try to help.
Dear P, Needless to say this is now on my mind and I can’t shake it off. I am going to write to my Onc, in Montauban, to ask that he gets me an appt in Toulouse for the PET scan - are they called that here in France? MRI is IRM…!
I’ve had a letter from the Onc in UK and he says an MRI is of no use, the prob, I have is that they don’t do the Tumour Markers here (not sure is it’s all of France?) and they are baffled. So if I’d not had them (it was on the insistance of the UK Onc that I always have them) I’d be going about my daily business as usual and nothing to think about for another 6 months. So I wonder what going on in my body as the CA125 has double the last two times I’ve had it, and that’s less than 6 months. So something is a miss.
I am really insistant that I don’t want the MRI, it was the worst experience of my life …! The PET scan sounds just like the CT Scan, of which I’ve had endless. Although the hour laying still might be an issue…i have a phobia (very very much) of needles and of course, as per most ladies/men, have a huge prob with veins in m y left arm, which is all they can use. So it’s horrendous for me.
Anyway, will compose my letter in English and French - getting across how you feel is difficult in French - so that’s stressful too - and see how I get on.
Thanks again for your kind offer and I hope you are well.
K x
I’m in France, too and have been sent to Toulouse for PET scans, but not the CR - mine was at the Clinique Pasteur, Avenue de Lombez. They call them TPE scans here.
They’re boring - they wouldn’t even let me read after they’d injected the dye - said it sent too much of it to the brain! And I found the room cold, too, although I seem to recall being given a blanket. I’d agree that they are like a CT scan, but go for on longer.
The results seemed to take quite a while (by French standards) to come through.
I’ve had two PET/TPE scans and two CT scans here within a year; don’t know if that’s excessive or not, but sometimes I think they are necessary to really get to the bottom of things.
If you have any questions, I’d be glad to try to answer them.
Many thanks, at least I can get that right in the letter then.
Where are you living? We’re just outside Saint Antonin Noble Val, about 45 from Montauban.
Good luck with your treatment, and hope you are well.
Karen, my Onc at CR is called Prof Roche, he is an excellent Onc and I thoroughly recommend him - he gets things done and quickly too.
At CR I have seen signs for PET scan, the MRI and radiology Dept seems to be down in the basement so I assume that is where the PET scanner is. As for tumour markers, I can’t imagine why they are not keen to do them for you. I’ve had 3 since June and the last one I asked for to be done. Now I am NED I would like one done again just to see what the “normal” level should be.
I understand fully why its on your mind, it is a worry and you are getting conflicting advice so I hope that you manage to get some answers quickly.
I think what I will do is go to my local doc, I hardly ever go to him now, as I only go to Montauban when I have to be checked - am never ill ! ha ha
So he can refer me instead of going to Mont. Although it’s a good hour away, so that’s a pain, but, like you say, if they do the tumour markers and they have the PET scan if that’s what I need, then it seems like that is the best way to go.
many thanks for your help, much appreciated, and glad to hear you are NED.
Might meet up sometime?
Have a good Christmas, and here’s to a Happy Healthy New Year.
I live in Carcassonne - are you North, South, east or West of Montauban?
The needle doesn’t stay in during the scan - they take it out as soon as all the radioactive dye is in.
One thing they do check before they inject you is whether you are diabetic or not. They also do a pin-prick blood sugar test just in case you are and don’t know it.
You have to fast beforehand, but you are allowed to drink water.
Tumour markers - despite all the problems I’m currently having, mine have remained normal…
Hi, we live north of Montauban, on the river Aveyron, it’s 40 mins to Mont.
Carcassone is lovely
thanks for your help, I’m glad it doesn’t involve a drip, the jabs are bad enough!! but to get a needle to stay in…!
Oh well.
Karen x
It is a sort of drip, I think, Karen and not an injection. The reason I’m not sure of more details is because it is delivered from behind a wheeled lead-lined unit It doesn’t take very long - it only seemed like a few minutes to me.
Yes, Carcassone is beautiful - shame you’re not closer…