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Old 01-01-2017, 04:55 PM   #42
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: My leptomeningeal journey

That was a really long week. I started using a cane for additional stability because my body asked for it. I was frightened. What if this was my new normal? What if treatment didn't work?

I arranged a consult with a third neuro-oncologist, new in the area, my RO team helped arrange that. Their schedulers were amazing and got me in promptly and ordered more brain imaging in late October. I saw again that the neuro-onc was hesitating about the imaging, it was like none of them can read brain scans in a way. It was useful though as a tiny lesion was showing up in my left temporal lobe, in my frontal brain. Damn. The new neuro-onc suggested I repeat my hearing test to establish a new baseline, interesting. I looked it up and the temporal lobe is involved in auditory processing, I realized that the ringing in my left ear in September wasn't from the partial brain rads but probably from this temporal lobe lesion.

The reality was that my cancer had been allowed to grow for 5-1/2 months because my spread was in the back of my brain. Waiting for symptoms to appear was useless as my original tumor in my cerebellum had gotten to be 5 cm before it almost killed me. I realized that had I had lesions the size that they were in July in my cerebral cortex (frontal brain) that I would have totally had symptoms -- doctors are completely unfamiliar with symptoms of tumors in the cerebellum.

If you have a tumor in the cerebellum from breast cancer mets, 75% of the time it is going to be HER2+. The cerebellum is a newer, relatively speaking, area of the brain. Most pediatric brain tumors grow in the cerebellum which makes me think that a pediatric neuro-oncologist probably would have more experience with posterior fossa tumors.

Without any suggestion from any of my doctors I reached back out to my RO team and reminded them that we had determined that if any lesions showed up in my brain outside of the treated area, that is anything not in the cerebellum, brain stem, that we would zap it. A planning scan was done and things looked stable but that temporal lobe lesion was still there and so we indeed hit it with Cyberknife. The procedure was done with a mask, not screwed in frame as they use in Gamma Knife, and it was painless.
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