Post by jennyjo8365 on Apr 29, 2018 6:02:26 GMT -6
Not a good day. I'm 52 yo female, had Myxopapillary Ependymoma, gd 1, removed 8 months ago, T12-L2 laminectomy. NS said no radiation needed post op, and to follow up in 6 months. At 6 months he said MRI looks good, no tumor regrowth but that I should follow up with an oncologist just as a "closure". I requested an oncologist recommended by CERN Foundation, because of the rare tumor type. He looked at 6 month MRI and wanted to do a new MRI on his machines because he said they take thinner, better pictures. We did that today and followed up with an appt. with him. He said he sees small tumor growth up and down my spine plus at the base of my brain. He said it is like powder sugar when it spreads. It's not just in one location like before but in multiple spots but MUCH smaller, you can barely see it. So, 6 weeks of radiation is being planned for spine and brain. I believe he said Photon radiation. I sent my 6 month MRI to Mayo clinic last month and the neurosurgeon said he didn't see any sign of tumor. I am having the Dr I saw today send the new MRI's to mayo to look at, hoping to get a confirming second opinion. Any advise, thoughts suggestions would be appreciated. Feeling a little off balance.