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Re ependymoma diagnosis
One of my young (20ish) close relatives was diagnosed with a Grade 3 ependymoma this year - apparently the highest grade of this malignant brain tumor. She had surgery to remove it, radiation therapy. Right now just about 1/2 year later, no evidence of recurrence on MRI. However this has a definite possibility of recurring per what I have read.
I am wondering if anyone has any history of this either personally/in close relationships or in their jobs in healthcare?
It’s not common…?
The patient is - how do I describe? prickly about this and I am trying to be supportive but not sure how…
Thank you for any info or replies.
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Hello @wisco50, I did a search of Connect using "brain tumor removed" that turned up quite a few discussions and comments. I thought you might like to scan through them while you wait for members with experience to respond - https://connect.mayoclinic.org/search/?search=brain+tumor+removed.
The National Brain Tumor Society has some information that I thought might be helpful on the topic.
-- Recovery from Brain Surgery: https://braintumor.org/brain-tumors/diagnosis-treatment/stages-of-treatment/after-surgery-before-treatment/recovery-from-brain-surgery/
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1 ReactionYes, thanks! Am specifically looking for responses re the type of tumor I mentioned. Am reading some articles from patients who have dealt with it as it’s a pretty rare type of tumor.
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2 ReactionsHello,
I know it has been a while since you posted this but I noticed you didn’t receive any responses from others with this rare tumor.
I was diagnosed with a Grade 2 ependymoma of the 4th ventricle in July 2023. I had surgery which my surgeon believed was a gross total resection. I did not have radiation after surgery. A few weeks ago my scans showed the tumor regrowing. It is in the same location as before but very small at the moment. We are going to wait a few months and get new scans to see how the tumor is growing before making decisions on next steps.
Your relative is much younger than me. I was 45 years old when diagnosed. I do know that pediatric ependymoma typically is more aggressive and recurrence happens more often than with adults. I am not sure what age this change in tumor behavior happens. With your relative being so young I would not be surprised if she were followed by pediatric and adult specialists. I’m not sure how much you have been able to learn since originally posting here but I would be happy to help in any way I can. Best of luck to you and your family member. Ependymomas are rare and it is hard to find information out there that helps the newly diagnosed get answers to their questions, so anything I can do to help, please ask.
Thank you.
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