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Post by qhcrazy on Jan 24, 2008 16:40:05 GMT -6
I am so scared that I'll have another tumor. I know I should just relax, but it bothers me so much to even think about having to go through all this again. They say that the percentage for return ependymomas is really low, anybody have them removed, only to have them come back later? If so, how soon was it discovered again, and what was your second recovery like?
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Post by billanschell on Jan 24, 2008 19:44:21 GMT -6
Here are some words that should comfort you:
I asked Dr. Jallo the same question in one of the first teleconferences. He said that although some internet sites mention a recurrence rate of 10 - 20%, he has NEVER seen an ependymoma come back if it was 1) Fully resected, and 2) not a myxopapillary ependymoma (those recur much more frequently). He said that in his opinion the odds are "near zero."
My own neurosurgeon pointed out to me that Dr. Jallo is relatively young, so he hasn't seen patients who might be 20 or 30 years post-surgery (although Jallo did benefit from the wisdom of Dr. Epstein, one of the pioneers in the field, so I doubt he was unfamiliar with long-term survivors). Still, apparently that's the most likely scenario for a recurrence: Way down the road. But it's highly unlikely to recur at all if you meet the conditions above.
--Bill
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Post by qhcrazy on Jan 24, 2008 20:04:01 GMT -6
Thank you for your help and comfort. After reading your blog and responses on here, you seen so very knowledgeable about all of this, good for us who still have a lengthy recovery to "look forward to". But, as always, my faith will guide me through all of this and hopefully comfort someone else who is dealing with this.
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Post by Linda51 on Jan 25, 2008 9:00:04 GMT -6
Hi qhcrazy,
Since your surgery not been 1 year are you still getting MRI's? I guess in a way it depends on the results of your surgery and your surgeon. I know for myself and for some in the group we had MRI's at 3 , 6, 9 months and if everything looks okay then your surgeon will let you go to 1 MRI a year unless you start to have problems. So if you haven't had your MRI lately since your surgery you might want to see your doctor and ask for one this will give you a piece of mind. From one of your post it sounds like you are doing alot of different things since your surgery and that great but you also have to give your body a chance to heal and when you over do things your body will hurt and react to the stress you are putting on yourself. So my advice would be ask for some help with your family when you are feeling bad and see if that will help some of the things you are experience which by the way are normal for us but as I said above over doing things even if we feel great at the time our bodies not ready for it and you will pay the price.
As far as ependymoma's coming back yes they can. As Bill had said above is true but I have been with this group since almost the beginning and have heard from alot of SCT survivors and have seen some tumors come back not long after surgery. But it not that common so I wouldn't freak out. Some ependymoma's have returned years later and most never do. I know it easier to say than do but concentrate on your recovery and get that MRI's if you haven't in a while for a piece of mind and then you will know for sure and give yourself some time to heal. Your recovery period is about 2 years but I can honestly say recovery can go beyond the 2 years. I am at my 13 1/2 year and I am still amazed at some of the things I can do that I couldn't do at 5 year even at 10 years. Bottom line is hang on to your faith and NEVER give up!
~Linda
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Post by Jody on Jan 28, 2008 22:30:29 GMT -6
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Post by mak164 on Jan 29, 2008 16:30:11 GMT -6
I remember that when I finally recovered from my SCT I asked my GP if I could expect a recurrence. I appreciated his honesty when he told me that this was always a possibility. However, that was almost 50 years ago, so I was fortunately able to get on with my life and forget that horrible experience.
David.
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Post by Jody on Jan 29, 2008 20:36:59 GMT -6
David, thanks so much for giving us hope!  Jody |
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Post by qhcrazy on Feb 1, 2008 18:38:11 GMT -6
Wow, your message DOES give us hope, thanks so much for sharing.  |
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Post by Linda NY on Feb 4, 2008 22:06:35 GMT -6
I had a very large ependymoma successfully removed from my L5 vertabrae five years ago. I am tumor free. I was 45 years of age at my surgery and am doing fine now despite some residual weakness in my right leg. These tumors can and are surgically removed and are likely to never come back. I think the likelihood of it returning is about as likely as lightening striking twice in the same place!
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Post by rubestr3 on May 7, 2008 7:34:23 GMT -6
Hi everyone,
I had a myxo ependymoma that was removed in 1998. This year is my 10th year anniversary! (Yay!) I just had my yearly check in with my neurosurgeon two days ago. No recurrance, no sign of tumor. I do have a cyst at the L5 nerve root, it's been there a few years. I also have degenerative disk disease throughout the lumbar/sacral region, (who here doesn't?)
I am looking at surgery for my disks that are getting in the way...but I get to make the call when I want. It's nothing big and too bad yet.
Sooo, don't worry! You will be fine. Keep your head up and keep up with the scans.
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