I heard back from Roswell. Their advice was to do nothing for now and rescan me in three months. Apparently when my MRI was put up on the screen at the tumor board there was resounding agreement that my tumor was a subependymoma.
Here’s the thing, I’ve been doing a lot of reading, and this is what I know as of now. The University of Texas MD Anderson Cancer Center did a 18 year retrospective review of patients with 4th ventricle tumors. There were 55 patients in 18 years who presented with a tumor in the same location as me (not all were subependymomas). Johns Hopkins conducted a similar study over 19 years and had 15 patients.
Texas MD Anderson is the number one ranked hospital for cancer. Johns Hopkins is the number one ranked hospital for neurosurgery. I wonder how many patients Roswell has seen with my type of tumor. They are ranked 14th in the country for cancer and do not even show up in the list for neurology (I scrolled through the top 100 and then gave up). I guess my point is that I am assuming that they probably have very little experience with this type of tumor and therefore I have very little faith in the guidance they have to offer.
The neuro oncologist there did agree to allow me to have a repeat MRI with contrast at the end of the month so that when I go to NY Presbyterian Columbia/Cornell and Cleveland Clinic I will have multiple scans for them to review and they can assess if there has been any change in the last 6 weeks.
I found a book called Living Low Grade, it was written by a man who was diagnosed with a low grade brain tumor (similar to mine) that was inoperable (not my case). He talks about the stress of knowing that something foreign is occupying space in your body, something that doesn’t belong there. How do you continue to live like you did prior to diagnosis and not attribute every ache/pain/twinge to your brain tumor growing? I think that is the space that I am contemplating currently. Am I capable of living low grade for a period of time, potentially years. I don’t know the answer to that yet. I think once we visit Cleveland and NYC and I have more answers about the risks of the very invasive surgery I would need then I will be able to better assess how I am feeling. Until then I’ll be on a yoga mat trying to restore some peace back into my body.