Dear Anca,
what you are feeling is quite normal . Most of us have gone through this phase of complete disbelief . Even without a medical background , there is the possibility of finding out what the outcome of such diseases might be .
On the other hand there are quite a few of us , who can live long lives with good quality . Most Neurosurgeons apt for quality instead of quantity of life when possible espcially if the tumor is slow growing . To evaluate this one has to have a definite histology. This is only sure after biopsy .
Take a look at the international guidelines for Braintumors .
The more agressive the tumor , the more agressive the approach .
Most tumors of the central nervous system are not curable , due to the fact that microscopic cells stay behind even if the surgical approach is microsurgical , with use of intraoperative MR, or the newer method using intraoperative fl- assisted resection . Cortical - neural stimulation is used if the operation field is near a vital area of the brain , to allow the widest possible resection with the least possible residual long term damage .
I do not think that all methods are used at once during neurosurgery , it depends on which field the neurosurgeon specializes in .
It is difficult to live with a tumor you do not want , but what would the alternative be ? Would you accept invalidity in whatever form to live longer?
You are in a difficult position now trying to make a desicion , but it is one you have to take . Sum up the facts and try to decide which option is the best for you .
Just because hospitals here are better setup , does not mean they can garrantee you cure . No one can . lots of docters in the states mention removing all the tumor and promising cure , but this cannot be given in my opinion . Only one tumor of the CNS is curable and that is a Fibrillary Astrocytoma that is only found in children .
How did the Tumor present itself? In which area is it ? What invalidtiy would you face if surgery would be done now?
You always have the posibilty of sending your specimens to a reference center after surgery if that is what you want . University clinic _ Neuropathology in Bonn is an accredited one .
My pathology was done in Bonn but they did not go for Genetics cause it may show the possible response to Chemo or an eventual prognose but it would not affect the desicion to go for chemo or radiation once it is needed. ( I had 12 months of chemo without the determination of genetics or the presence of a methylating enzyme .
I get the bills sent personally , the costs for my hospital stay , surgery with evoked cortical stimulation , stay at intensive care was approximately 22 , 000Euros . My stay was not complicated , was out in 10 days . That, i think would be a minimum . You would have to add up additional costs of travel and an accompanying person and eventual complications . And that is just the beginning .
If you need additional radiation , would you have it done here ? that costs at least an additional 15-20,000 .
I had a huge tumor that had to be removed , have a rest tumor that is around 5 * 5 cm at the right temporal lobe infilterating into the occipital lobe . 12 Months chemotherapy but no radiation . Will apt for second surgery when the tumor grows again. I am glad today i followed the advice of my neurosurgeon who warned me against going for radical resection at the risk of increasing invalidity . I have lived this past year being mostly the person i was before surgery apart from the pyschological scars that most of us live with.
keep it up girl
Kit