Pick a Tumor, Any Tumor…

ependymoma, low grade glioma, astrocytoma, subependymoma

Today was the first visit with a neuro-oncologist. Another doctor, another opinion on what kind of tumor it is. Today’s vocabulary lesson was the word astrocytoma. A quick internet search and I’m now more confused than ever.

https://abta.org/tumor_types/astrocytoma/

So basically subependymomas are a type of ependymoma. Astrocytomas are a type of glioma. All of these are possibilities but no one knows which one. Aghhhhhh.

The doctor we met with today was lovely, had a wonderful bedside manner and was very patient with all of our questions, and there were a lot. Because this doctor was not a neurosurgeon he was unable to answer a lot of our questions but is going to take my case to the tumor board at Roswell next week. The tumor board is a group of tumor specialists who meet bi weekly to discuss unusual cases. He will present my case and they will call me to tell me what they believe my best course of action is.
The biggest dilemma to consider is do you live with a tumor in your brain that may or may not at some point become problematic, or do you undergo major surgery that has a high likelihood of a major neurological complication in order to prevent a potential disaster in the future.

How does one make this decision? How do you weigh the least desirable potential outcomes of surgery against the least desirable potential effects of a tumor spreading? I don’t remember taking a class in high school or college that prepared me for this. I don’t have a phone a friend option because no one can make this decision for me. My husband says we need more information, that more data will help me to make a decision. I agreed and got 2 more copies of my MRI to send to The Cleveland Clinic and Johns Hopkins, maybe they will come back with 2 more opinions and muddy the waters even further. Until then I will be wandering the forest seeking answers from the trees or the whispering winds or whatever can help guide me through this painful process.

”The answer my friend is blowing in the wind”.

Published by evictingroxanne

I am a wife, mom and therapist and now the lucky carrier of a rare type of brain tumor. Welcome to the rantings of a lady trying her best to not lose her mind whilst navigating new terrain.

3 thoughts on “Pick a Tumor, Any Tumor…

  1. I agree with your husband. Hopefully you will have the data in the next few weeks pointing to a decision. Since you’re not 100% sure what kind of tumor you have, it’s hard to reach out to others whom have either had the surgery or are doing active surveillance.

    Liked by 1 person

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