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Ependymoma/subependymoma of the 4th ventricle

Brain Tumor | Last Active: Apr 5 10:42am | Replies (61)
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@pma2022

@lioness31277
Thank you (and everyone else on this thread) for sharing your experience.
I have also just been diagnosed with Ependymoma in 4th ventricle (Female aged 42).
Im based in the UK and waiting for results of MRI with contrast for further information before I can be presented with treatment options. I've been told surgery is most likely, but given what you have shared above I certainly need to ensure I have collected as much information as possible so I can make a in informed decision.

I believe most of you are based in the USA. What types of treatment were you offered (as alternatives to surgery or monitoring growth)?
I do have symptoms which are increasing and the first MRI (3 weeks ago) showed signs of hydrocephalus, so I suspect waiting won't be an option. But I will know more once the results from the second MRI are presented.

I welcome any information / guidance. Ime very grateful you have shared the paper titled; The surgical treatment of tumors of the fourth ventricle: a
single-institution experience (by the Department of Neurosurgery, The University of Texas MD Anderson Cancer Center, Houston, Texas)

Are you aware of / can you share any further papers which summarise patient outcomes from various treatments delivered for Ependymoma in the 4th ventricle?

I hope you are all improving, it sounds so tough, but you are incredibly brave for sharing and I can't express how much I appreciate it.

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Replies to "@lioness31277 Thank you (and everyone else on this thread) for sharing your experience. I have also..."
Colleen Young, Connect Director | @colleenyoung | Nov 25, 2022

Welcome, @pma2022. You're wise to do your research to have an informed discussion with your care team. While we wait for @lioness31277, I'm also tagging @jcorcoran @annrmarie and @beckyziegler on this discussion to bring in more experiences and voices to help address your questions.

In the meantime, here's some info from Mayo Clinic:
- Ependymoma https://www.mayoclinic.org/diseases-conditions/ependymoma/cdc-20350144

This page from the National Cancer Institute (US) also includes active clinical trials
Ependymoma Diagnosis and Treatment https://www.cancer.gov/rare-brain-spine-tumor/tumors/ependymoma

When do you meet with your doctors again to discuss your options, PMA?

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lioness31277 | @lioness31277 | Nov 28, 2022

Hi pma2022,

I was not offered any other options other than waiting or surgery. If hydrocephalus shows on your MRI, then I am sure surgery will be offered to you. Unfortunately where the tumor is can block off your brain fluid. This is life threatening so unfortunately you have to decide am I willing to risk my life or deal with what happens after surgery. I obviously chose deal with what happens after surgery. I do not know your working situation, but if you decide to have surgery you may not be able to work for awhile and so you might want to plan for that. I know this really sucks, but I still feel I made the right decision because I appreciate being alive and I have some permanent issues I deal with every day. We all have something. I took the time to tell my brain tumor experience so that people like you are not shocked after surgery when recovery is slow and you think something is wrong because your surgeon did not prepare you for post surgery complications that you will have to deal with. I know this is hard and I was 2 years older than you when I had my surgery. I understand what it feels like to be facing this. You will get through this, but keeping a positive attitude is half the battle.

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