ependymoma regrowth

[Lou]

Hi everyone

My husband had a spinal cord tumor removed 3 years ago (C7 -T2), it was inside the spinal cord. He has been having yearly MRI's and the most recent showed a vague shadow, possibly regrowth, he needs to have an MRI in 3 months to keep an eye on it. He has no symptoms ( except the tingling/pain etc, the usual deficits from the surgery).

I was wondering how common it is to have regrowth, particularly when Dr said at the time 100% removal, (though he did also say that a few cells left behind could create regrowth).

He had an epenymoma grade II.

I would really appreciate any information, feedback or comments.

Wishing you well,
Lou

[drummer904]

From what i hear, regrowth chances are slim to none. So i think the "spot" on the mri was just nothing and wont be there three months from now hopefully. Keep us posted!

[Teri K.]

Regrowth is possible especially with Myxopapillary Epenydmoma's. They are not usually a fast growing tumor and I'm not sure if your husband had a myxopapillary type. I have had three re-occurrence's and am currently in a monitoring mode for a new re-growth. It can be difficult to wait and watch, but that is sometimes the best approach with these things. My first re-occurrences appeared around the 3 year mark post surgery and then I had surgery to remove that around the 5th year, so we watched it for 2 years. Just keep a close watch, and it sounds like you have a doctor who is on top of that.
Teri

[Joel]

I think the best thing to do is assume that regrowth is possible, however slim, and the obvious things to do are 1) get periodic MRI's and 2) watch for changes in deficits--if things start to get worse, then this is the best indication that it is time to do something other than watch and wait. In the meantime, forget about it and enjoy life...

[billanschell]

From what I know of myxopapillary ependymomas, your husband's couldn't have been one because its location was too high. I've quoted Dr. Jallo's teleconference comment many times here (because I take comfort in it), that he has never seen a fully-resected low grade ependymoma - other than the myxopapillary type - come back, and he puts the odds of recurrence "near zero." That's very different from most on-line information you'll find, but I don't think those on-line studies have ever focused exclusively on the scenario described by Dr. Jallo, which is what your husband (and many of us) have.

--Bill

[cindylee]

Last year the doctor saw a few spots on my MRI that were not there before, so I had to go in for another MRI in six months. It turned out to be what the doctor called possible scar tissue. This year there is nothing there but that same scar tissue, and it has not got bigger or moved or done anything. It's best to keep a close eye and ask questions. Cindy

[Lou]

Dear all

I just wanted to thank you for your comments, I have found them reassuring.

I found this site 3 years ago when my husband was first diagnosed, I did not write at that time, though I read everything on here! It gave me the strength and the courage to support him through it all and most importantly gave me a sense of what to expect.
Thank you again,
best wishes to you all
Lou

[missym]

I had an ependymoma removed over 6 years ago and my reports all indicate that there is "something" at the site but there is no evidence of tumor regrowth. I too believe when a NS tells his/her patient that the tumor was resected completely, there is little chance for recurrence, and even if.. on the odd chance that there is recurrence, the tumor growth would be sooo slow growing. If there is regrowth I would think that the area would enhance with the gadolinium dye... not just shadow. I still stress before each MRI but try and keep things in perspective and ask your NS or Radiologist for more clarification.
Good luck
Missy

[David]

I had a Epyndydoma grade 2 c5-c7 resected 4 years ago- and that is what I was told, that chances for recurrence are pretty slim. I am the same as Missy in that I still freak a little before my annual MRI , but how could you not ?

My NS saw the shadow as well after two years- it was just scar tissue.

It is smart to be vigilant, but the odds are definitely on your side.

Love
David

[wobbly1]

I am David and I posted above, but I wanted to log in, just in case anybody wanted to see my profile and contact me-\


Best of health to you all !!!

David