myxopapillary Ependymoma

hotdoggy03

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

braintumorBruce

There IS a support group for you!
Hi;
My name is Bruce, and I facilitate an online support group for people affected by adult ependymomas. About 60% of us have had abrain tumor, while the other 40% have suffered a spinal ependymoma. Being a brain person, I am not the best person to answer your questions about spinal ependymomas, but I suggest you join our group:

http://braintrust.org/adultependymoma.htm

Also, I have written a website that you may find beneficial:
http://sites.google.com/site/adultependymoma/

The BIGGEST thing is for you NOT to worry. It will do no good!

Email me at brub58@comcast.net if you need help or want to just "talk"

Oh yeah - I am a 15 year survivor.

Bruce

hotdoggy03

braintumorBruce said:

There IS a support group for you!
Hi;
My name is Bruce, and I facilitate an online support group for people affected by adult ependymomas. About 60% of us have had abrain tumor, while the other 40% have suffered a spinal ependymoma. Being a brain person, I am not the best person to answer your questions about spinal ependymomas, but I suggest you join our group:

http://braintrust.org/adultependymoma.htm

Also, I have written a website that you may find beneficial:
http://sites.google.com/site/adultependymoma/

The BIGGEST thing is for you NOT to worry. It will do no good!

Email me at brub58@comcast.net if you need help or want to just "talk"

Oh yeah - I am a 15 year survivor.

Bruce

hi bruce, i just entered my
hi bruce, i just entered my info and said it was sending. thanx for the info, i know nothing about this cancer and glad to see theres a support group out there for me. Did i mention im only 24 years old:( i start radiation tuesday and hopefully it will relieve my numbness in legs, and feet, hopefully.

okienmn

I can relate
Hi Stephanie -
At 21 (unmarried and no children), I was diagnosed with the same type of ependymoma as you. The tumor had hemorrhaged and because of the internal bleeding that was why I had so much back pain, couldn't urinate, etc. After the surgery (T12-L5) where the surgeons tried to get as much out as they could, I had radiation too. Years later, my MRIs showed that the tumor was back but was lower - another couple of years have passed by, now I'm slated to get surgery again.

I now have a wonderful family too and so I can relate when you say you are feeling scared and just want to get better too. As I reflect back on how I felt almost 11 years ago, I think about how I was in complete denial of what I had and just blew everything off, saying it wasn't a big deal - but deep down I was just a scared young person that didn't want to admit having a glioma. I think it's great that you are seeking out support from others and trying to understand more to learn more to ultimately feel a sense of hope and get better. Stay positive as I am sure you'll do well with the radiation (don't know where your tumor is located but the radiation sessions I had weren't that bad, just made me tired with a little bit of nausea.) You'll get better

aykt36

thanks
thanks

AMGS

treatments
Hi, Stephanie,
I hope your radiation treatments went well. I have had those also, about 15 years ago and have just now had some fall-out from those treatments. I am almost 70, so am much farther along in life, but have had a terrible time with the tumors. I have had 5 back surgeries to debulk the tumor and had radiation treatments twice. I am now in a clinical trial at M.D. Anderson with a new protocol for treatment that is showing some very encouraging results. If you are interested, let me know and I'll send you more information about it. BTW, I am now a paraplegic, and in a wheelchair. Fortunately, I have a very supportive husband and terrific friends. I managed to remain ambulatory for almost 14 years after I was first diagnosed. The tumor extends from S1 up to T12, so it is quite massive. The surgeries were very helpful, but after the first one, if you have any remaining, there is the possibility of it reseeding, even up the spine.

Good luck,
AMGS

gclark

ependymoma
I had a surgery on spine and they removed what they could, but it was wrapped around my nerves, so could not get it all. I had leg, hip, pain some head aches. I do have a shunt in my head. I wonder if I had done nothing what would have happen. I now have finished 30 radiation treatmens. My wife and I are talking about disability as if you have 5 to 10 years is it worth trying to just work. Just need to hear what other have to say that are in same boat.

gclark

ependymoma
I had a surgery on spine and they removed what they could, but it was wrapped around my nerves, so could not get it all. I had leg, hip, pain some head aches. I do have a shunt in my head. I wonder if I had done nothing what would have happen. I now have finished 30 radiation treatmens. My wife and I are talking about disability as if you have 5 to 10 years is it worth trying to just work. Just need to hear what other have to say that are in same boat.

gclark

ependymoma
I had a surgery on spine and they removed what they could, but it was wrapped around my nerves, so could not get it all. I had leg, hip, pain some head aches. I do have a shunt in my head. I wonder if I had done nothing what would have happen. I now have finished 30 radiation treatmens. My wife and I are talking about disability as if you have 5 to 10 years is it worth trying to just work. Just need to hear what other have to say that are in same boat.

gclark

ependymoma
I had a surgery on spine and they removed what they could, but it was wrapped around my nerves, so could not get it all. I had leg, hip, pain some head aches. I do have a shunt in my head. I wonder if I had done nothing what would have happen. I now have finished 30 radiation treatmens. My wife and I are talking about disability as if you have 5 to 10 years is it worth trying to just work. Just need to hear what other have to say that are in same boat.

lav593

Same situation, same time
Hi Stephanie,

My name is Lisa and I am 19 years old. Ironically, last year around this time I was also diagnosed with a spinal myxopapillary ependymoma. I had to withdraw from school to have surgery 2 days after my 19th birthday but like "okienmn", I also didn't think too much of it, more of an obstacle rather than a life changing experience. I had moderate lower back pain for about 3 years in high school, assuming it was all from sports I played and I learned to deal with it to the point where it became impossible to sleep at night because the pain was so severe. Finally I got an MRI and had surgery less than 2 months later. Since it all happened so fast for me, I never really had a chance to research or look into options. Had I done that, I might have chosen to have radiation therapy along with the surgery to reduce the risk of it potentially coming back. The recovery process was much faster than anticipated but now that I have been back at school for about 6 months now, I am started to develop worsening pain and find difficulty sleeping again. I am due for an MRI and I am quite nervous for what the results might show. However, this is mainly because of what I have been reading on the internet about recurrence rates and I was not expecting them to be so high. I am hopeful though as you should be too. We are both young, so our ability to recover is much faster than that of someone older. Nevertheless, if I have learned anything in the past year it is not to believe what you read on the internet. If you have questions, call your doctor or surgeon. They will give you direct personal answers where the internet is typically composed of unreliable sources. I'm sure by now you are as well informed as I am, but if you ever check this site at all still let me know how you're doing. I am curious as to whether others commonly experience pain again after long periods of no pain after surgery.

Lisa

kalaoamom

lav593 said:

Same situation, same time
Hi Stephanie,

My name is Lisa and I am 19 years old. Ironically, last year around this time I was also diagnosed with a spinal myxopapillary ependymoma. I had to withdraw from school to have surgery 2 days after my 19th birthday but like "okienmn", I also didn't think too much of it, more of an obstacle rather than a life changing experience. I had moderate lower back pain for about 3 years in high school, assuming it was all from sports I played and I learned to deal with it to the point where it became impossible to sleep at night because the pain was so severe. Finally I got an MRI and had surgery less than 2 months later. Since it all happened so fast for me, I never really had a chance to research or look into options. Had I done that, I might have chosen to have radiation therapy along with the surgery to reduce the risk of it potentially coming back. The recovery process was much faster than anticipated but now that I have been back at school for about 6 months now, I am started to develop worsening pain and find difficulty sleeping again. I am due for an MRI and I am quite nervous for what the results might show. However, this is mainly because of what I have been reading on the internet about recurrence rates and I was not expecting them to be so high. I am hopeful though as you should be too. We are both young, so our ability to recover is much faster than that of someone older. Nevertheless, if I have learned anything in the past year it is not to believe what you read on the internet. If you have questions, call your doctor or surgeon. They will give you direct personal answers where the internet is typically composed of unreliable sources. I'm sure by now you are as well informed as I am, but if you ever check this site at all still let me know how you're doing. I am curious as to whether others commonly experience pain again after long periods of no pain after surgery.

Lisa

my son
Lisa,
My 13 yrs old son has been dealing with this from the age of 8 when he was diagnosed with his first myxopapillary ependymoma at L1-L2. Last year they found another. The doctors called it "a downward metastatic spread of a benign tumor" This time at L5-S1. The first tumor was very "sausage" like and was removed whole. The second tumor surrounded major sacral nerves so they had to leave in a 6mm mass. We have been told radiation at this time with him reaching puberty, is not advisable. He just had his MRI and it is showing a new area of enhancement...Just in the last few weeks he is experiencing pain in his back again when he becomes very active, ie runs 2 miles, surfs etc. The doctors we have dealt with have never referred to this as CANCER. What have you been told? Are you doctors experienced with this type of rare tumor? My sons neuro surgeon suggested finding somewhere that had experience and research with these tumors as they are quite rare. Currently we have Dr Kelly at the John Wayne Cancer Center reviewing his case every six months since last surgery. Now that there is some question of reoccurrence his next MRI will only be 8 weeks from his last.

I hope your MRI shows no new activity and your pain is from the surgery scaring. My son did have no pain for 3 years before it came back. The best thing you can do is stay positive and just take each day as it comes. (living this as I have StageIV cancer)

I wish you all the best

Diane

MitulD

Hey Steph.
I'm just
Hey Steph.

I'm just recovering from an operation as I had exactly the same thing. All I can say to you is be strong for your hubby and your kids and you'll be fine. All I could do whilst in hospital was be positive cos I knew I was gonna get through it and knew I had to for me and my loved once. I'm 25 and it's not nice finding out something like that at our age but all I can say to you is be positive and you'll get through it.

All the best to you girl :-)

latanya lynn

lav593 said:

Same situation, same time
Hi Stephanie,

My name is Lisa and I am 19 years old. Ironically, last year around this time I was also diagnosed with a spinal myxopapillary ependymoma. I had to withdraw from school to have surgery 2 days after my 19th birthday but like "okienmn", I also didn't think too much of it, more of an obstacle rather than a life changing experience. I had moderate lower back pain for about 3 years in high school, assuming it was all from sports I played and I learned to deal with it to the point where it became impossible to sleep at night because the pain was so severe. Finally I got an MRI and had surgery less than 2 months later. Since it all happened so fast for me, I never really had a chance to research or look into options. Had I done that, I might have chosen to have radiation therapy along with the surgery to reduce the risk of it potentially coming back. The recovery process was much faster than anticipated but now that I have been back at school for about 6 months now, I am started to develop worsening pain and find difficulty sleeping again. I am due for an MRI and I am quite nervous for what the results might show. However, this is mainly because of what I have been reading on the internet about recurrence rates and I was not expecting them to be so high. I am hopeful though as you should be too. We are both young, so our ability to recover is much faster than that of someone older. Nevertheless, if I have learned anything in the past year it is not to believe what you read on the internet. If you have questions, call your doctor or surgeon. They will give you direct personal answers where the internet is typically composed of unreliable sources. I'm sure by now you are as well informed as I am, but if you ever check this site at all still let me know how you're doing. I am curious as to whether others commonly experience pain again after long periods of no pain after surgery.

Lisa

@ Lisa you sound just like
@ Lisa you sound just like me I had Mixopapillary Ependymoma at the age of 12 I was 3 weeks away from my bday! At that time I was in Fact the 1st girl to have ever had this type of cancer.. I had the same problems as you I ended up dropping out of school at the age of 16. I need to have a fusion done asap, Im 22 by the way, but its hard bc I dont get any type of government help!

latanya lynn

Im the 1st girl to have Mixopapillary Ependymoma
I was 12 when i found out I had it 3 weeks later I was at Childrens Hospital in New Orleans Louisiana having surgrey. Im 22 years old now an Im still in pain. I have have a bad spine now I have to have a fusion done to straighten it out.. When I first caught this it was only 2 other people that had it an Im so amazed on how many people have it now!! God bless you all for what your going through!

ghull29

latanya lynn said:

Im the 1st girl to have Mixopapillary Ependymoma
I was 12 when i found out I had it 3 weeks later I was at Childrens Hospital in New Orleans Louisiana having surgrey. Im 22 years old now an Im still in pain. I have have a bad spine now I have to have a fusion done to straighten it out.. When I first caught this it was only 2 other people that had it an Im so amazed on how many people have it now!! God bless you all for what your going through!

Myxopapillary Ependymoma
I was diagnosed with Sacrococcygeal Myxopapillary Ependymoma in 1995, I was 32, I had it removed and then 30 radiation treatments. They told me that if I was cancer free for ten years I would be fine. It was once again discovered in 2007, I had surgery again. I now have tumors in 14 different areas, plus many nodules in my lungs with no known treatments. I have been through some different chemo treatments and clinical drug studies. This is my experience with this Damn Cancer.....

anthony john

myxopappillary
Hi Stephanie

anthony john

myxopappillary
Hi Stephanie

How are things going for you? Just wondering if your cancer went to your lungs, as my son has the same cancer and it went to his lung. I have not talked to anybody about this. I would like to talk to you if you could.


tonyga@maine.rr.com

Tony

anthony john

ghull29 said:

Myxopapillary Ependymoma
I was diagnosed with Sacrococcygeal Myxopapillary Ependymoma in 1995, I was 32, I had it removed and then 30 radiation treatments. They told me that if I was cancer free for ten years I would be fine. It was once again discovered in 2007, I had surgery again. I now have tumors in 14 different areas, plus many nodules in my lungs with no known treatments. I have been through some different chemo treatments and clinical drug studies. This is my experience with this Damn Cancer.....

Myxopapillary
Hi there

My son has the same cancer you have and in the same are. Went to his lung and took out a nodule. July 7th going in for surgery to remove another regrowth in pelvic area and take out two more nodules in lung. I have not talked to anybody with similar diagnosis. Were are you from?


Tony

tonyga@maine.rr.com

Oboe Mom

kalaoamom said:

my son
Lisa,
My 13 yrs old son has been dealing with this from the age of 8 when he was diagnosed with his first myxopapillary ependymoma at L1-L2. Last year they found another. The doctors called it "a downward metastatic spread of a benign tumor" This time at L5-S1. The first tumor was very "sausage" like and was removed whole. The second tumor surrounded major sacral nerves so they had to leave in a 6mm mass. We have been told radiation at this time with him reaching puberty, is not advisable. He just had his MRI and it is showing a new area of enhancement...Just in the last few weeks he is experiencing pain in his back again when he becomes very active, ie runs 2 miles, surfs etc. The doctors we have dealt with have never referred to this as CANCER. What have you been told? Are you doctors experienced with this type of rare tumor? My sons neuro surgeon suggested finding somewhere that had experience and research with these tumors as they are quite rare. Currently we have Dr Kelly at the John Wayne Cancer Center reviewing his case every six months since last surgery. Now that there is some question of reoccurrence his next MRI will only be 8 weeks from his last.

I hope your MRI shows no new activity and your pain is from the surgery scaring. My son did have no pain for 3 years before it came back. The best thing you can do is stay positive and just take each day as it comes. (living this as I have StageIV cancer)

I wish you all the best

Diane

My Son
Kalaoamom,
My son is 13 as well and was diagnosed with a myxopapillary ependymoma at the L1-L3 this past May. He had surgery to remove it. Like your son's tumor, his was sausage shape and came out whole. We are planning to do 30 treatments of radiation therapy. Did you do therapy the first time?
I'll pray for your son, and everyone else on this site as well.
~Anita

MasonChristian

latanya lynn said:

Im the 1st girl to have Mixopapillary Ependymoma
I was 12 when i found out I had it 3 weeks later I was at Childrens Hospital in New Orleans Louisiana having surgrey. Im 22 years old now an Im still in pain. I have have a bad spine now I have to have a fusion done to straighten it out.. When I first caught this it was only 2 other people that had it an Im so amazed on how many people have it now!! God bless you all for what your going through!

Youngest ever diagnosed
My little baby boy was diagnosed with myxopapillary ependynoma at 10 months old, the drs were dumbfounded as he is the youngest person ever diagnosed with it. Because he is so small, they aren't sure how to treat it. He has sedated MRIs every four months. As a parent of such a young child, I wonder how to feel and what to think? They say it is slow growing, but his on in his spinal conus and on nerve endings below. Can someone tell me how they would deal with it?
thank you!
Gina