I am very concerned that I might develop leptominengial carcinomatosis.
At the time of diagnosis I already had 9 brain metastases from a stage IV EGFR pos non small cell adenocarcinoma of the lung.
I was told that the brain mets where synchronous.
Tarceva got them down to 3 (visible on MRI ) mets , and these got treated a few weeks ago with SRS
I never had WBRT even though that was one possible and recommended treatment at the time.
We opted to give Tarceva a chance and it did reduce the visible mets quite nicely, but I also understand that there is a very good chance of microscopic metastases being present that do not show up on MRI.
I read that if you peek down a microscope during brain surgery you very often see microscopic disease along the blood vessels, that no imagine would be able to pick up ,
Should I get a spinal tap? I read that MRI does not always pick up the disease. Even the spinal tap can come back negative despite disease being present.
Or do I have no choice but to wait for neurologic symptoms to appear?
I just feel that with that many mets and no WBRT the likelihood of developing this dreaded complication is a real possibility, may be I already have it and no symptoms have developed yet?
What do the experts think?
Thanks' so much