Hi Pan,
I am having a good health insurance and so I am lucky that all the scans and checks are fully paid by my insurance – with one exception, the full body PET-CT. Insurance is not paying the PET part of it, which is around 1.200 Euro :-(. But we are still in negotiation…
I would say, I have a team of very good doctors around me, none of them experienced with LFS but all of them very experienced with cancer patients…and this is fine with me. LFS is too rare, you cannot ask for more, can you?
Other than this.. my oncologist basically did some research to find out what it actually means, having a LFS patient. I am having the recommended check-ups according to the Toronto protocol and even more regular ultrasounds of the abdomes. The last just because my oncologist is very keen on this, he is a internal specialist.. B).
I was seeing a genetic counselor only one time. As I am the only member of my family with LFS, there are no family trees to analyze. And overall, he made me more scared than I already was…..no point in seeing him again :sick: , not before they have a SOLUTION…any kind of treatment for this!
There is no forum in Germany for LFS patients. This is why I am bothering you with my bad English :-).
Regards,
Sonja
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