So I finally got the report from the second opinion I had done on my pathology..and may be more confused than before. Especially since both hospitals are great institutions, well known for their neuro-onc departments
My pathology was originally done at Johns Hopkins. They diagnosed a difficult to classify "Unusual Grade 2/3 Astrocytoma" that was "insufficient for a higher grade designation". There were some features "reminiscent of but not diagnostic" of a pleomorphic xanthoastrocytoma. My neurosurgeon, neuro-oncologist & radiation oncologist all agreed with a watch and wait approach to treatment (after complete resection). My most recent MRI showed some new enhancement believed to be scar tissue.
Today I received a pathology report done at Dana-Farber in Boston. They diagnosed a Pleomorphic Xanthoastrocytoma with Anaplastic Features (differential diagnosis for them was GBM or a non-categorical High Grade Glioma). On the report it says my case was reviewed at their neuropathology review conference and the opinion was that the tumor was a PXA w/ anaplastic features, with the GBM diagnosis NOT being favored.
I am planning on sending my patho to one more place (memorial-sloan) but was wondering if anyone had any experience with this tumor. I have not done a ton of research yet but it seems that there is little treatment info available on PXA's with anaplastic features because it is so rare, from what I've read so far it does seem to be highly recurrent but it is unknown if temodar is effective against it.
Also as far as discussing this with my docs at hopkins do I have to make more appointments with them? I have a follow up with my surgeon in July but currently do not have any plans to see the oncologists again. Does anyone know if when a pathologist receives a report from an outside institution that is different from what they diagnosed, do they contact the patients doctors? So many questions on how to go about this, do I make an appointment with my docs at JHH, or try to see new docs at Dana Farber (which would require quite a bit of travel but I am from Boston so it's a trip I make frequently enough).