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Ependymoma/subependymoma of the 4th ventricle

Brain Tumor | Last Active: Apr 5 10:42am | Replies (61)

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Allo, yours words touched me profoundly. You are very courageous to live this situation. (Sorry for my bad english, I'm french canadian. I hope I will find the good words to share). I'm 53 year old female with a recent IRM which reveal a brain tumeur. It's an atypical tumor near the third ventricle which is, like you very central. All my neuros doctors (I had seen several), don't what to take it off by chirurgical because it can cause cognitive damage. First I stress because my doctor waited to see how it grows. Like you, I would really like it out. Finally, it appears to be a slow growing and I understand that my doctor wants to take this time to find the good treatment for me. Each tumor is unique and there's some danger to follow quickly the "standard protocol" (extract the tumor/temodal-chemo/radiotherapy). Maybe they will offer something special for you. Waiting is difficult but maybe it's better then loosing parts of what make's you who you are, you, mother of your so young daughter (I have 2 twenties years old-daughters). Finally, I have only the chemotherapy for this moment and we'll see what happen (it is an intra arterial chemo with carboplatin - which is not standard). Slow growing tumor is good. I had a biopsy but it did not reveal anything for sure except that is unusual. I hang on this atypical diagnostic like a rift, an opening for hope . Do you know the Leonard Cohen's song: "there is a crack, a crack on everything: that's where the light gets in". Keep hope, g@@ood luck, best wishes.

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Replies to "Allo, yours words touched me profoundly. You are very courageous to live this situation. (Sorry for..."

@marcyprof and @beckyziegler I wish to welcome you both to Connect, and to connect you with @mjcory

Marcy, tu écris très bien. Bienvenue. How are you tolerating the chemotherapy? Side effects?

Becky, I'm so glad that your internet search helped you find this group talking about ependymoma. Will you need treatment beyond surgery?