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myxopapillary Ependymoma

Posts: 2
Joined: Feb 2010

Hello everyone, Im happily married with 3 beautiful boys and i just found out i have a cancer called myxopapillary ependymoma(tumor in spine). I start radiation tuesday, but i was just wondering if anyone has had this or knows someone who has. Im pretty scared to be goin through this, im young and just wanna get better, this has really changed how i function with day to day activities.


Posts: 5
Joined: Jun 2014

Hi, I was diagnosed June 30th 2010 after removal of my myxopapillary ependemoma who 1 at l2. It was 1 cm. I had 26 rounds of radiation and have been cancer free since. Does anyone know the reoccurance rate and survivor rate. I was told that in 98%of the time it does not come back. Had anyone heard different

Posts: 3
Joined: Jul 2015

If the myxopapillary epenymoma is removed in one piece the recurrence rate is very low, probably close to the 98% you were quoted.  However, if the tumor is removed piecemeal, or piece by piece, the recurrence rate I have been told is closer to 20%

Posts: 1
Joined: Jul 2014



I found out I had a spinal myxopapillary ependymoma when I was 17 during my senior year of highschool.  I had surgery almost immediately.  I am 19 now but still know so little about what I actually had.  I am doing fine, but am just curious.  Was it cancer? I asked in the hospital and recieved two different answers.  

Posts: 3
Joined: Jul 2015

Through my research with the Spinal Cord Tumor Association and attending the bi yearly conferences, I have heard the Myxopapillary Ependymomas are not officially considered to be cancer unless they are grade 3 or 4.  Most are grade 1 or 2 and therefore not cancer.  However, the damage they do to the spinal cord can be life changing.  As can any spinal cord injury.

Posts: 3
Joined: Jul 2015

While myxopapillary Ependymomas are extremely rare, there are many people, including myself, who have had the unfortunate experience on have this tumor grow on their spinal cord.  Many of them are on the spinal cord tumor association website linked below.





Posts: 1
Joined: Jul 2015

I can't find where I can make my own post. I was diagnosed with this rare cancer 10 years ago when I was 19 so 2004-2005. I too was told I was the first person in the US to have this cancer. I was receiving treatment at Mass General in Boston,MA all area hospital had a meeting on my case and came up with no answers. I've had 4 surgeries to remove malignant tumors and soft tissue that was also diseased. I've had my whole tail bone removed that has increased my back pain 100x. I haven't had an Mri in 4 years because mass general doesn't take my insurance anymore. I live in pain every day. Between my back, legs, and the migraines I was told it's all fathom pain. I'm relieved to know there are more people out there in my place but I wish this on no one. Is anyone in the Massachusetts area that can direct me to a great doctor. They told me they wouldn't do radiation or chemo until I'm in my 40s fearing it would kill my liver and kidney. When I was first diagnosed doctors told me not to worry this cancer doesn't spread. By my second Mri they quickly learned that it does. I've let this disease grow in me for the last 4 years I need to take back control. Any help please


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