Second, third…opinions. How to get them?
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Katia….we are in the process of establishing a listing for International Centers focused on our disease, but it’s a slow process and won’t help you at this time, but I will forward to you anything that may pop up during my search.
BTW: I don’t know whether you father is returning to the Netherlands however; if he is then you may want to consider a clinical trial.
My search revealed this:
http://www.trialregister.nl/trialreg/admin/rctsearch.asp?Term=Cholangiocarcinoma
It automatically gives a listing of the PI (Primary Investigator) whom you could try to contact.If your father will be treated in Belgium then it may help to take a look at this.
https://www.centerwatch.com/clinical-trials/listings/location/international/Belgium/AntwerpAlso, here is more information for out European patients.
http://www.esmo.org/Links/Useful-Links-to-Patient-Support-Websites
Leuven medical center should provide you with a name of a radiation oncologist.
I have e-mailed you as well. Please take a look.
Hugs,
MarionDear Katia, you need to find a hospital that is pretty experienced with CC and perhaps they can help lead you to the Doctor who is experienced with CC. When you find the hospital they will steer you on how to proceed. Different Countries and Hospitals have their own set of rules, so to speak. Type your Country name into our Search engine above and see if any posts appear on your specific country and perhaps some places are mentioned. Or pick another country close to you that would not be too hard to get Dad too.
Not sure how the Vero works but years ago Teddy had Cyber Knife and I remember the 2 rules were that the tumor had to be under 6cm and there could not be a lot of tumors. With that said, things have also changed in the last 8 years for the better. Best of luck with this and I know it will take some searching.
Perhaps you could Google for major Hospitals in an area then under their description see if they handle CC. It’s a place to start, anyway.
BTW your English is spot on!!Different opinions. How to?
When you asked for different opinions, how did you go on about it?
Did you randomly pick out a specialist in a cancer center hoping what he would say would suit you?
We are at the stage where we are very confused.
We had 2 opinions for surgery.( did not happen in the end because of mets not visible on scans)
Now, We only have one oncologist ( and potentially another one as my dad’s file is being transferred to another hospital but first needs to be translated. Should be finished this week. Let’s hope we hear from them this week too! Unfortunately, this is holiday time…)
He thinks chemo is the only answer.We wonder about the use of the Vero ( some sort of super cyberknife) as until now, it is only all about chemo.
The VERO ( super cyberknife) seems rather appealling, but how do we pursue that option? I guess we have to contact the hospital where they have that machine??
My question in a way really is a bit:
When you got 2nd, 3rd opinions, did you get widely different options?? Did one onc say let’s do this whilst the other said something completely different? Did you guide them a bit??
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