Brain Activity is Overrated

Alright, alright, alright. I may have overreacted. I have a tendency to lean toward conspiracy theories, and lets face it, I have definitely been manipulated (given half truths) by doctors which gives me a general distrust of the whole lot.

After emailing around, I got someone at UCLA to forward my questions to the doctor who reviewed my radiology reports. The kind doctor called me Wednesday morning and he clarified as much as he could. That's how it is (as I'm finally beginning to grasp) with radiology, lots of grey area...no pun intended, lots of unknown.

As for the scan, it was explained to me that apparently, Dopa PET scans are read by comparing the basal ganglia (BG) which naturally uptakes dye. Any abnormal area is then compared to the brightness of the BG to determine if it's tumor. The doctor said that my brain, "Has substantially overall low brain activity." (Ouch. That doesn't feel like a compliment.) He compared my brain activity to his experience with other people's scans, and my previous Dopa PET from last October. Apparently, when you have low brain activity it makes your overall brain very dark on these scans. Abnormally dark brains make the contrast of anything in the brain very much enhanced. This brings me to the "ill formed", or whatever it was, thing in my head. The lit area in my tumor resection space is not bright enough to show up on the typical grading scale, which is great.

I asked him if chlorotoxin or Newcastle disease virus could uptake dye or show up on the scan and he had no experience or information on that. 

He explained that the difference between the brightness of the BG compared to my tumor resection area was substantial. They are not comfortable saying there's tumor or that the subtle uptake is tumor cells. However, as you may have guessed, they are not comfortable saying  that it's not tumor cells. 

I asked if he had ever seen a scan like mine with enhancement in the tumor resection area that didn't turn into tumor and he said yes.

"So....you're sayin' there's a chance....!" (movie quote...hey-ooo)

Subtle Doesn't Mean None

I thought it was weird when the doctors used the term, "You don't have tumor mass." It seemed to be oddly specific terminology. It just didn't sit well at all. I always get the copies of the radiology reports and of course, when I opened the mail today (after getting back from my new GP appointment), I read the report. This is the part where my heart sank...

"New ill-defined subtle increased F-DOPA uptake is noted in the posterior aspect of the left parietal resection cavity. Corresponding to T2 and FLAIR hyperintensity signal surrounding the resection cavity which is noted on the MRI. Visually F-DOPA uptake is below to the contralateral striata F-DOPA uptake."

Now I'm in the process of clarifying with the reviewers of the scan to see if I may not have "defined tumor mass" but instead I might have an area of tumor cells. The area of the tumor cavity shouldn't be lighting up like that. I'm very concerned. This is just like having tumor growth on the MRIs but the doctors still say "stable" because the growth isn't that much. I don't like being manipulated. I want to know what's going on in my brain. I need to know how hard to work, or if the things I'm doing are just the right amount.

I'm irritated, and concerned. Hopefully there's an easy explanation for the discrepancy.