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unusual lession/tumor

rachelmi
Posts: 4
Joined: May 2010

Thank you to anyone reading this. I have a 2.6cm mass growth on my right thalamas for the last 2.5 years. The neurosurgeon thought it was a low grade glioma and scheduled me for surgery. When he got to the site he could not see any tumor. Biopsy was taken in 3 places according to mapping software and instant path came back non malignant. Long term path the same. no mass effect of cells or odd shapes. Nothing was removed. long term path not malignant and inconclusive for anything else. One doctor suggested it may be degenerative disease but a neurologist did a full blood genetic workup and found nothing, so in his opinion its a tumor. The are now arguing whether it is a tumor or not and one doctor has suggested chemotherapy and I have no idea why. no one suggested radiation. it has not been named or staged. what should I do. could it possibly inflammation and not a tumor has anyone has simuliar experience? symptoms are pretty severe burning in left leg. no headache or seizure. not on any medication at moment.

the_liz_army's picture
the_liz_army
Posts: 40
Joined: Mar 2009

How long has your medical team been trying to figure out your case?

It took about a month and a half after my first brain scan to finally get me in for a surgery. My mass was originally thought to be two, and docs believed I was showing the early states of multiple sclerosis.

Long story short, I don't have MS--I have a grade 2 astrocytoma and am being treated conservatively.

If you don't feel your doctors are giving you answers in a timely manner, move on to ones who will.

Your friend,
Liz

rachelmi
Posts: 4
Joined: May 2010

How weird, I just got done reading your blog! And I had planned to write you and tell you how much I appreciated reading it and then when I saw the name on the reply I got it was you. Funny. I was like wait a minute I know this funky chick! :) Well I just got home from the hospital, after a month they have decided its an astrocytoma 1-2, and have put me on temador 5/23 for now. I just got done with the first round that I had to take at the hospital just to see how it went. I had nothing to do all week and was searching the net and stumbled on to your blog. I am in Japan, and was feeling pretty scared, shocked, you name it and your blog really helped me get through the week, it was so nice to find another girl around the same age healthy and having the same thing and treatment. It is hard enough living overseas and then to go through this now too. Been a heck of 3 months, since the first mri then the biopsy ect. Id love to keep in touch if you want. You gave me so much courage, I really think if I hadnt read your blog I might have jumped out the 10th floor window in the evac slide thingy I was that scared! I couldnt understand if it wasnt malignant why I needed chemo, but then finally after I understood the temador it made sense as a resonable options to hold off the radiation as long as possible since Im reasonably well at the moment and they cant operate at the present time. Anyways, stay strong I look forward to hearing from you / reading about you.

Rachel

a.s.
Posts: 3
Joined: May 2010

hi the same was for my husband his mass is 7.5 cm and was found 5 years ago and we just watched it for 3 years then it started to grow more and gave him headache and sever fatigue and we started radiation and temodar at the same time for 1 month then temodar for 1 year.he was ok till last week till he develoed a partial seizure on left leg, we r having follow up next week hope goes well

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