Myxopapillay Ependymomas

[bishop]

I am 40 years old, relatively healthy. I was diagnosed with a myxopapillary Ependymoma on L2-3, rather large one, in the end of august 2009, and 2 weeks later I had it removed. Since then I have had several MRI's and one myleogram and each time there seems to be a new tumor pop up. I know have them on s1-2, L3-4-5 and T6-7-and 8. The doctors want to continue to watch them and at this time do not want to do radiation. The tumors are very small L3and 4 and t7 are 4mm and the rest are 2mm. Should I be waiting on radiation. I am afraid they are going to keep popping up. I have neuro deficits from the large one they took out and I want to avoid anymore. I guess I'm afraid they will go to my brain. I am a neuro nurse...guess I am thinking of the worst case. Does anyone have any advice they could give me on getting a second opinion. Or is this what you have to do with these types of tumors...kind of "wait and see" Any thought would be appreciated.

Sara

[Teri K.]

Hello Sara,
Your case sounds similar to mine, but my tumors showed up over many years. My first tumor was in the Lumbar region and very big, it was from L1-L5 and into the sacrum. It reoccurred 5 years later and then 15 years later there were numerous tumors in my thoracic region. The tumors in my thoracic region could have been there for a very long time because I only had MRI's of the lumbar, since this was the primary tumor site. I guess in hindsight I probably should have had MRI's of everything. The remaining tumors are also very small, ranging in size from 1mm to 7mm. They are basically in a watch and see mode and I do have MRI's every 3-6 months of my whole spine and annually of my brain.
I did do radiation of the lumbar and thoracic region and honestly I think that has been the reason the tumors have stayed stable and have shown no new growth over the last 3 years. From the knowledge I have, if you have seeding of a myxopapillary tumor it can go anywhere on the spinal axis, so it is possible for it to go to the brain.
The wait and see is the approach I have currently, but I did have the radiation and have no regrets about doing that. The last type of radiation treatment to my Thoracic spine was done on a TomoTherapy machine which is CAT scan guided.
a second opinion is always something to consider. Many of us on the site have sent our information and MRI scan to Dr. Jallo and he has been very good at reviewing them and responding, this could be a possibility.
Teri

[squirtka]

Hi Sara,
I was diagnosed with a myxopapillary Ependymoma on 11/05/08. My story is available on this board in the myxopapillary Ependymoma section. Teri has been a wonderful avenue of support for me, so I am sure she can help guide you through this too.

Unlike Teri, my tumor is inoperable, and I did agree to full spine and full brain radiation. I had a total of 28 treatments, and they really did knock me for a loop. I just found out a couple weeks ago that the radiation did not make anything go away. Everything is still there (the original tumor) and a 'coating' up throughout my spine to the brain stem (with little tumors dotted along the way)

I don't know what would be going on in there if I didn't do the radiation... would it be worse? Did it at least keep things at bay? What I do know is that it didn't make anything better. Now my doctors recommend chemo - I wasn't about to agree so quickly with that since there is no real evidence that this will work either. I did get second opinions from Dr. Jallo and Dr. Friedman - plus I have a tumor board of doctors at University of Colorado Hospital wanting me try it out. So, I am going to do it.

I would much rather 'wait and see' at this point, since I have been having a rough 6 months since my diagnosis... but in the same sense, I really don't feel comfortable NOT giving it a try - what if it got worse if I didn't?

There doesn't seem to be enough cold hard proof on how to treat any of these spinal tumors... everyone's story is so unique, and everyone seems to react differently to different therapies and treatments.

I doubt this really helped answer your question... but I do want to let you know if you decide to go with full brain and spine radiation, please feel free to contact me directly. I can share my experience with you in better detail.

Good luck and take care-
Karen

[shyamala ramraj]

is radiation is safe and effective for Ependymomas?

[tc]

In the "Library" section of this website, there is a list of frequently asked questions. I've cut and pasted Dr. Jallo's answer below:

"What role does radiotherapy have in treating these tumors?

The role of radiotherapy should only be reserved for tumors which are malignant or those tumors which are not surgically operable. This accounts for very few tumors. Radiotherapy should not be administered for intramedullary ependymomas."

[Todd]

I found this information about this type of tumor:

"Disease-free survival depends fully on extend of resection at initial presentation. It is imperative that the tumor capsule not be violated during resection. Intra-operative diagnosis should be made based on tumor appearance, with the consequent goal of gross total resection without violation of the tumor capsule. Biopsy for frozen section should not be performed to avoid the risk of spillage of tumor cells into the thecal sac."

this is significant because a rule of NS is that in order to do the least damage to the surrounding nerves, they like to stay "in-tumor". Meaning that they open up the tumor and take it out from the inside out. If this is how your tumor was resected, it could actually be the cause of your persistent tumor growth.

it would be a question you might want to ask your doctor about.

todd

[sharma]

Todd, Hi. where did you find that information on biopsies? Do you know when it was published? Thanks, Sharma
Ependymoma (myxopappilary) L2-3, 2001. Recurrence at S1, 2009.

[Jody]

Sept 15, 2009 18:02:42 GMT -6 Todd said:

I found this information about this type of tumor:

"Disease-free survival depends fully on extend of resection at initial presentation. It is imperative that the tumor capsule not be violated during resection. Intra-operative diagnosis should be made based on tumor appearance, with the consequent goal of gross total resection without violation of the tumor capsule. Biopsy for frozen section should not be performed to avoid the risk of spillage of tumor cells into the thecal sac."

this is significant because a rule of NS is that in order to do the least damage to the surrounding nerves, they like to stay "in-tumor". Meaning that they open up the tumor and take it out from the inside out. If this is how your tumor was resected, it could actually be the cause of your persistent tumor growth.

it would be a question you might want to ask your doctor about.

todd

Mine was taken out in pieces. However I have been very fortunate in that I have had no regrowth at all.

[kevinlee]

Hello All,

I also had an Epy Max at T12-L2 with partial excision. Tumor was debulked (taken out in chunks) as it had adhered to the nerve fibres several drop lesions from S1-S5. Surgery done Nov/07, last MRI done July/13 no change at original site and drop lesions have apparently gotten smaller great news but strange.

[VikkieT]

Hi all. My partner is 26 y/o with 'extensive lumbar myxopapilary ependymoma. It is growing "along the sacral nerves and also anterior to the L5 vertebral body and sacrum." His case was handed over to the "top known surgeon" in London, who has said he will not operate as he feels, due to radiotherapy in 2010, the skin tissues wouldn't heal properly which would leave too much room for unwanted infection. I feel as though we have just been abandoned!! Does anyone have any advice as to what we should do next? I refuse to loose the love of my life