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Post by ketmurphy on Apr 29, 2011 15:51:27 GMT -6
Hello Everyone, this is my first time on this site.
I recently underwent (1 Apr 2011) a total gross resection on an ependymoma located at C4 - C7. The pathology report came back a grade "II" ependymoma. My Nurosurgeon wants me to meet with a radiation oncologist (scheduled for 5 May). Not sure why since everything I've read indicates radiation therapy is not appropriate for this grade of tumor coupled with the fact it was totally removed. Also, I know this grade of tumor is considered a "low grade" tumor but haven't been told as to whether it's considered benign or malignant.
By way of background, I had 20 plus months of symptoms ( numbness/weakness in hands) which was originally diagnosed as carpel tunnel which I had subsequent surgery on both hands last fall. When the symptoms didn't improve, I had an MRI done of my neck in March which discovered the tumor.
Appear to be doing fine with the exception of numbness from my chest cavity to my feet but seem to be getting some sensation back slowly after some aggressive PT.
Thanks much and if anyone can elaborate on the radiation therapy would greatly appreciate it.
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Post by ericalbany on Apr 29, 2011 21:35:28 GMT -6
My understanding - based on research and discussions with both the neurosurgeon at Brigham and Women's Hospital in Boston and the oncologist at Dana Farber Cancer Institute in Boston, is that with ependymomas, radiation is not necessary or in any way a desirable therapy if the tumor was fully resected. According to the oncologist, radiation to the spinal cord can cause new deficits, so is only considered if there is eventual re-growth of a partially-resected tumor. If you are doing fine a few weeks after surgery, the last thing I would dream of doing is radiation therapy. Read everything you can, and aggressively question your doctors about why radiation would ever be suggested for someone in your situation. For a malignant or partially-resected tumor - that's one thing. For a fully resected ependymoma (the World Health Organization lists all ependymomas as grade "II," and they are benign), I can't find any information that suggests radiation is an appropriate follow-up.
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Post by ketmurphy on Apr 30, 2011 18:12:51 GMT -6
Thank you so very much for the feedback. Will be interested to see what the oncologist suggest. I agree with your info that based on this type of tumor radiation should not be administered, thanks a million.....
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Post by ericalbany on Apr 30, 2011 21:37:18 GMT -6
The most likely scenario is that your NS is being diligent and thorough in referring you to the oncologist - that that's a routine post-surgery referral for this NS and is part of the "teamwork" philosophy of care - just so the oncologist can take at a look at the MRI and confirm that you don't need radiation. That kind of consult IS a routine part of post-ependymoma follow-up at Brigham and Women's in Boston, for example. From the NS's point of view, even though he confirmed that resected the entire benign tumor, ultimately the whole "radiation or not radiation" call is one that only oncologists, not neurosurgeons make, so I bet this is just excellent diligent care and the oncologist is going to confirm that you do not need radiation. The more I think about it, the more it just sounds like the NS who was excellent enough to get you to the great outcome you've had is also excellent enough to be sure you are followed closely post surgery. So relax...and keep us posted on that May 5 conversation. Congratulations on your progress!!
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Post by ketmurphy on May 1, 2011 5:37:20 GMT -6
Thank you again, this sounds like a reasonable approach, I'll let you know what I find out on Thursday. Again, can't thank you enough for the feedback. KEM
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Post by ericalbany on May 8, 2011 22:38:26 GMT -6
How did the appointment with the oncologist go? Been thinking of you!
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Post by ketmurphy on May 9, 2011 7:54:36 GMT -6
Sorry I didn't get back with you sooner. The Oncologist agreed with the concensus that radiation therapy for this type/grade of tumor was not needed. He basically said that since the tumor was a total gross resection, he would do more harm than good by radiating the area. He went on to say that the liklihood for recurrence was remote and that the long term prognosis was "excellent." Also seen my Nurosurgeon on Friday and she was very pleased with my current progress although I'm still experiencing numbness from my chest down to my feet. I'll have my first follow-up MRI in early Jul. Thank you so much again for all the info and concern. Take care and best wishes. Warm Regards KEM
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Post by ericalbany on May 9, 2011 10:31:18 GMT -6
Great news! You are obviously in excellent hands. Congratulations on a great outcome. Take good care of yourself, and look forward to feeling better, and doing more, as the summer weeks go by. Thanks for the update. It made my day!
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Post by Tmasgio on May 10, 2011 13:33:55 GMT -6
I am one of the few that had radiation after surgery. I had my resection in April 07 followed by radiation treatment. I had an intermedullary tumor from C3-C6 and I am doing fine today. I also had a grade II. The reason I had the radiation was because the Oncologist said that without radiation I have a 15% of reoccurence and with a small dose of radiation I would have less than 1%. I was 34 and did think the odds were in my favor with radiation. I have no symptoms from it and even during radiation I did not have any at all. I did not get sore or red or have any complications. Maybe for me it was a piece of mind. I was also told that it does help with scar tissue formation as that was important to me as the Spinal Cord does not heal across the scarring. I cant say for sure if it helped or not as I am who I am today. I lead a Healthy life with the remains of the surgery of course. I have the stiffness and numbness but I knew I would be left with a considerable amount. I saw the most improvement from the 3-6 month range but then it tampered off really quick.
In my opinion, I made the right choice as my case was reviewed by a Board of NS and Oncologists and they all agreed on the course of treatment. I went to a top notch Hospital and I listened to their suggestions. However, any choice made with information given is the right one in my mind as this is serious business to make sure you never have to deal with this surgery again.
Just wanted to chime in.
Tony
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Post by Maureen on May 24, 2011 6:39:32 GMT -6
Have just read your post and wanted to give you some words of encouragement, having been there myself. I had the same diagnosis and surgery with no follow-up treatment in 1988, almost 23 years ago. I too experienced numbness from the chest down at the onset, but as time has gone by, some of that has subsided and I was left with a numb left leg. Exercise helps that a great deal and walking in particular. As time has gone by I have become less aware of the numb sensation. I had follow-up MRI's twice yearly for the first few years, followed by yearly visits to my neurosurgeon, but there has been no recurrence of the tumor in 23 years. I wish you all the best with your recovery!
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