Nov 03, 2011 - 11:13 pm
I've read in several posts on this site about the 1p19q chromosome deletions topic, and that several readers of this list have had this test, which I understand can be valuable prognostic tool and predict how a tumor responds to chemo.
Our son (age 34, dx 4-13-11, AA3, inoperable) has not had this test, and when I brought this up to a member of his medical team, she said that, after further review from two neuropathologists, David would not benefit from knowing if he has this deletion. The reason given is that knowing if a patient has the 1p19q chromosome deletion is only helpful for lower grade gliomas in determining response to chemo, not for high grade, like our son's.
I've read about several cases here on this list who have high grade tumors and their NOs seem to value this test in determining treatment protocol.
I don't know how far to push this with my son's NO as I have a feeling that knowing if he has the deletion or not won't really change his treatment protocol anyway.
Has anyone else on this list brought this topic up with their NOs and gotten the same response?