I have been asked to assist in finding help for a 10 year girl living in
the New York City area who has been diagnosed as having a Germinoma Germ
Cell Tumor. The tumor originated on her hypothalmus. It is described
as a midline tumor. Surgeons have advised treatment with chemotherapy
and radiation. This is a very rare type of tumor as apparently only 40
or so cases have been diagnosed in the USA. We would appreciate any
information on other cases. Does anyone no of someone doing research in
this type of cancer? The following doctors have been recommended to us:
Jeffrey Allen at NYU
Jonathan Finley at Sloan Kettering
Henry Friedman at Duke University
Please refer us to the best pediatric neuro oncologist in the world.
The outlook thus far is bleak. Any help would be appreciated.