Neurooncologist

Neuro-oncologist here!

Glad you are doing well, OP. The fact that the tumor was so large when it was first discovered actually suggests that it was relatively slow-growing. (Brains don't adapt as easily to the presence of a fast-growing tumor.)

It sounds like you have a good management plan in place, so I'll keep my recommendations brief...

• For a tumor like an ependymoma, having an accurate diagnosis is key. Consider getting a second pathology review (ie, send the tumor slides or block to another institution).

• For ependymomas, maximal resection is important, so if there is residual tumor, consider getting a second surgical opinion.

• Keep good records. Make sure you have CDs of all of your MRIs.

• Don't forget the holistic perspective. Tune out unhelpful "advice". Eat healthy (nothing crazy is necessary), exercise (when the craniotomy heals up), get good sleep, reduce stress, connect with others.

You are on the right path! If you have any other questions, feel free to PM me.

Glad to hear the slides are being reviewed. Although it's not always made clear to patients, keep in mind that you do have the right to control what happens to your tumor tissue. After all, it's your brain...

You may also be able to get the pathology report through the Medical Records department, though sometimes that's easier said than done.

(And yes, I'll make sure I'm available if you have any questions. I've been lurking reddit a long time; happy to step out of the shadows if I can be of help.)

Different physicians may have different preferences, but as for myself, paper copies of records are fine - it's easy to flip through them and find what you want. Again, the most important record is the pathology report.

There is a standard imaging format called DICOM. While the DICOM viewers that come preloaded on every CD aren't necessarily compatible between hospitals, as long as the actual DICOM files are there, you should be fine. (There are free DICOM viewers available for download.)

As for the skepticism mentioned by /u/pbtree regarding my professional chops, I encourage it! It's good to be skeptical of everything on the Internet, PARTICULARLY regarding anything cancer-related. There are a lot of bogus claims, half-truths, hidden motives, and uninformed or outdated opinions out there. I don't think I've made any controversial recommendations yet, though, and if I ever do, I'll do my best to qualify them as opinion.