Radiation and Chemotherapy

[CD]

Hi everyone. I had a grade 2 ependymoma partially removed in April 2015. There is around 25% remaining. I have had two opinions and the second opinion neurosurgeon oncologist is reccomeding radiation and chemotherapy as the next step of action. This particular Dr. Works for a hospital that is associated with the CERN research foundation. Has anyone had radiation and chemotherapy after surgery for an ependymoma ? Mine is at the C2 and the doctors agree a second surgery is too risky. Please provide any insight to help make my decision. Thanks

[Linda51]

Hi CD,

I have had 33 radiation treatments in the cervical area in 1995 for an Ependymoma, C2-T2. In 1994 I went through 2 surgeries within 2 months. It very possible to have 2 surgeries and have a better outcome the second time around. Also, it can be worse the second time around as well. It depends on the location and who the surgeon is. In 2007 at a first ever conference with NORD and other doctors around the world they were like if you had an ependymoma you shouldn't go through radiation because it doesn't help with Ependymoma SCT. I'm living proof you can go through radiation with Ependymoma and so far in 20 years no tumor growth. I was first sent to an chemo doctor by accident and there wasn't anything he could do for me. Let me add in 20 years radiation has been improved just as well as how they do surgeries.

My advice to you since you still have 25% remaining is find a surgeon that has done alot of surgeries and get his/her advice. Dr George Jallo is the expert with these and will look at your MRI for free. He at Johns Hopkins in Baltimore and he gets back with you pretty fast in most cases. If you can't go to him he can also tell you if he knows of someone closer to you if he feels like they are good. You have nothing to lose to get in contact with him. Email address is [e-mail]


In some cases if your not having any new symptoms you may want to hold off on surgeries & radiation. I would only want to go through radiation if there just no other way and the tumor was growing again and causing more symptoms. Once you have radiation it will make it difficult for the surgeon to do another surgery on you.

Hope this has helps.

~Linda