Molecular testing in Europe?
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Hoping too that this is something that will be done in the UK as well but I worry about costs for this and with NHS budgets being squeezed I fear we may be quite some way behind on this. Does anyone know how much it costs for each test?
THanks,
Gavin
Great advice, Duke. We will compile a list of steps to be taken. Perhaps you can put it in order (you are so good at that.)
As we receive further information, the steps to be taken in Europe will be listed as well. In general, they have socialized health coverage with different sets different guidelines.
Much to figure out yet, but we will get there.Katia…..when and if you have a chance to do so, would you please share your healthcare coverage issues with us. I assume Netherland coverage carries over to patient care in Belgium as well.
Thanks a million.Hugs,
MarionYou need to talk with your insurance company to see how much they will pay. My company is Anthem, but you will have another. Here is a link to their policy on molecular profiling:
https://www.anthem.com/medicalpolicies/policies/mp_pw_c150728.htm
They denied my claim but FoundationOne was able to negotiate a bill of $1000.00, down from the original $5000.00 (amounts are estimated but fairly close).
I know you will have the testing done, no matter what the cost, but you should know what you will have to pay, just to avoid the shock of the denial when you get the bill. You don’t need any more stress.
Duke
Hi Katia,
Thanks for the update and I will be keeping my fingers crossed for him for next Tuesday as well. That is great that he has put on a bit of weight lately and also about the stent working, excellent news on both fronts!
Please let us know how the talk with your dad and the onc goes regarding testing if you can.
Hugs,
Gavin
Marion,
I am speechless! Thank you so much, it would be such valuable information to have for people in Europe.
I fully agree with your last statement. Unity is strength.Many thanks,
Katia
Katia……so glad to hear of everything is falling into place nicely, bilirubin is dropping steadily and your Dad can continue to gain strength for the upcoming surgery.
I have reached out to an oncologist from Leuven regarding genetic testing however; due to his participation in the ESMO conference, Barcelona, I don’t expect an immediate response.
http://www.esmo.org/Conferences/World-GI-2015-Gastrointestinal-CancerBTW: Although I am not there in person (attended the 2008 conference) our brochures and other materials are displayed at ESMO. This is part of our outreach to the global patient/physician/researcher community. As we know, CCA is not an isolated disease. It occurs world wide and must be addressed in unity amongst all stakeholders.
Hugs,
MarionWell once again My family and I are just so grateful to all of you. You are an incredible bunch of people!! We appreciate your answers so much!
I shared your answers with dad today and he will talk with his surgeon about the molecular testing, see if it exists in Belgium.
If not then Foundation One will be the way to go.His operation is no longer taking place on Thursday, as his surgeon will be operating on an emergency case on that day.
Dad’s operation has now been rescheduled for next Tuesday.
We think maybe that is not so bad as it means he will be able to put on a bitmore weight. ( he has put on 1 kilo since last time I told you all about him having trouble eating! The stent is working really well for him and his bilirubin levels were at 5 a week ago, coming from 29.5 5 weeks ago!!!.)Again, many many thanks.
Katia
Katia, I want to wish a successful surgery for your DAD. May G-d come through the surgeons hands! All the best to you and your family!!!
Katia……incredible…other than no cancer, Stage I is about as good as it gets. So glad you became proactive in searching out other institutions.
Regarding tissue collection:
Larger Cancer Institutions preserve retrieved tumor tissue.However; in order to obtain molecular testing certain steps need to be taken in advance. You need to discuss with the surgeon your intent of sending tumor. Instructions are in this link:
http://foundationone.com/order.php#1download a task requisition form to be signed by the ordering physician:
A sample with pathology report needs to be sent to:
Foundation One
150 Second Street
Cambridge, Mass. 02140
USAFor a more detailed overview: http://foundationone.com/order.php#1
You may call or e-mail for further instructions:
Client.services@foundationmedicine.comGood luck and tons of good wishes,
MarionPS- No apologies are ever needed for asking questions on here. I just wish that we had all the answers! And you are so doing everything that you can for your dad, please don’t doubt yourself!
Gavin
Hi Katia,
Just got time for a quick response. Not too sure about where, if or how common molecular testing is in the UK or the EU but this thread by Kevin may help as he was able to get a sample from him mum collected here in the UK by Foundation One and sent to them. Thread is here, hope the link works –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13064
Personally if it was me then I would speak with your dads med team about this as what harm could it do? They may also be able to give more info on this and how to go about it from Belgium. I had a quick search around on google for testing from the UK but could not really find too much. Hoping that others will be able to offer some more input on this one
I so hope that all goes well for your dad and his op on Thursday, please let us know how things go for him and know that I am keeping my fingers crossed for a successful op.
Hugs,
Gavin
Hi,
This week, my dad will have his resection at the U.Z hospital in Leuven.
He had a stent placed 5 weeks ago and his bilirubin level has had enough time to come down so that he can be operated on. ( he was at 29.5, when the normal level is 1!)
From the imagery he had, doctors say that he has type 1 cc according to the Bismuth system.
I am now wondering if we should ask for molecular testing to be performed on him, or is it something that is automatically done?
It says on the faq from cc fpundation that it is important that all patients have this done.
But I don’t really know how we should get on about it. If it is something that the hospital is not accustomed to, will they find it is odd that we ask for it?? Maybe they will be a bit offended by our request?
Also, my dad’s operation is taking place on Thursday, so surely we should ask for a sample to be kept before they do the operation? Or do they automatically keep the samples for quite a while anyway? I always assumed that kind of tissues was discarded after a while.
When reading about who can do molecular testing, it looks like Fundation One is one of those companies, but they are based in the U.S. Is there an equivalent in europe?
Sorry, I just have so many questions now! Just want to make sure we do everything properly.
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