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myxopapillary Ependymoma

hotdoggy03
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.

thanx
Stephanie

bgrimaudo1
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

Davenkel
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%

samhutchinson13
Posts: 1
Joined: Jul 2014

Hi, 

 

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.  

Davenkel
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.

Davenkel
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.

http://www.spinalcordtumor.org/

 

 

 

dawnmarie1986
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

Dawnmarie

Razz1
Posts: 1
Joined: Feb 2016

Hello,

I had surgery to remove my tumor on December 1st.  It was a 4cm and all that was visible was removed.  I am now in radiation as there was a small percentage that was too dangerous to remove and the Dr.s felt it was a small enough area to finish with radiation.  I have been blessed as I have had no side effects from the surgery until now.  I have been in radiation for 2 1/2 weeks and I have started having back pain in my lower back at and below the incision.  I also have pain on the right side of my back from just below my shoulder blade to lower back.  That pain starts in the evening and persists through the night ( I need a pain pill, but manage with Advil..don't want to mask the symptoms + side effects).  I usually need to sleep proped up.   I also have extreme numbness in my hands (extreme is at night) and tingling in my toes.  Today, it has progressed to a light tingling all over my body, head to toe.   My Radiation Oncologist says none of this has anything to do with the radiation.  I talked to him today in detail and I called the office again later after the tingling started all over.  I also called my surgeon who was unable to speak with me today so I talked to the nurse who was less than supportive and told me she would see if the PA could call me back tomorrow.  I told her I did not think I should wait until tomorrow.  So, when I called the Rad Oncologist the nurse called the surgeon's office for me and got an appointment for Monday morning ( today is Thursday).  I mentioned to her that the nurse at the surgeons office was not very helpful.  ;/

I also have an auto immune disease called Sjogrens.  I have secondary and the RA strand.  These symptonms above are not related to the above as my pain with Sjgrens has been arthritic. 

If anyone has any information, thoughts on my symptoms or similar experience I would appreciate it so much.  I have read all of your posts and pray for each of you.

Blessings!

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