Can anybody advice me on how I can get a second opinion from at doc in UK or US (or another EU contry).
I live in Denmark, and find it very har to get a second opinion within our healthcare system.
I have all a bonemarrow test done only 1 month ago and FISH also. And have same test done in 2012.
I need a doc which will inform me of the expected prognosis and expected development of the CLL as I can not get this info out of my own doc no matter how I try. I am not interested in changing my doc, as I trust her medicalskills and know that the team is in on all the new stuff.
I just need a hint of what I can expect, and mentally prepare my self for.
-Trine
Written by
Damms
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This may be a question of cost. Certainly you could get excellent CLL specialist doctors in the USA, but they can be terribly expensive. I have read of costs over $25,000 for the first full investigation. Check on ACOR.org for the CLL list and then check the help pages to show the list of recommended doctors.
These same pages do also list other doctors around the world. There are doctors in most European countries on the list. I might recommend Dr Christian Taverna, Munsterlingen, CH-9596. Christian.taverna@stgag.ch Munsterlingen hospital is located just across the German Switzerland border from Konstanz. Busses run direct from Konstanz railway station into Switzerland and to the hospital.
In the UK we have the The HDA Patient Care Trust that may be able to offer guidance as this organisation aims to serve patients in the UK to help people answer doubts about diagnosis and treatment that may result from an overstretched NHS system. They may have information to aid overseas nationals within the EU hdapatientcaretrust.com/
This is the page from the Cancer Research UK website tells you about getting treatment if you visit the UK from overseas. cancerresearchuk.org/cancer...
The NHS has arrangements with Denmark but I believe will only treat if the treatment is not available where you live. I am not sure what the protocol is for consultation for a second opinion. The form E112 or E123 may apply?
Hi I live in the UK but my son lives in Denmark ( Copenhagen) it certainly seems difficult, to me in the UK, to get a second opinion in Denmark but can you tfr to the National hospital in Copenhagen who may have a specialist. If Denmark does not have a CLL specialist due to its population would your health service pay for a specialist opnion perhaps in Germany. Good Luck
I know it seems strange for me to be looking outside of Denmark for a second opinion. But to my experience the cll doctors here all know one another, and it would be hard to get them to tell me anything.
Damms - Can you get copies of your records? In the US we are entitled to all of our medical records and doctor's notes. You could then post your results for, at least, some general information about what your numbers indicate.
Damms, I too was going to suggest this. I'd be most surprised if you can't get copies of your records. For increased privacy, you may also wish to limit your question to "Members of this community only" by selecting that tick box when you post your question. For further privacy, you might like to send a PM to Hairbear and/or Chris (CLL Canada) who would probably be the best placed of us non-medical members to give you some useful references. Just remember that your test results only provide a partial insight into the growing field of prognostic indicators - there are more indicators being discovered all the time. Our understanding of how they influence the progression of our disease and what does and doesn't work with different treatments is also a growing research field. Further you can have a bad marker that can be counterbalanced by another good marker (which may or may not be included in your specific FISH panel).
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