Thursday night I drove back from Rochester, with a giant moon rising and lighting all the good fortune of a visit to Mayo. I couldn't have asked for a better visit - great information, and good news regarding the tumor. In a nutshell, my tumor hasn't grown a bit in the last month, and showed signs of becoming less aggressive.
Bear with me... I'm going to drop a little tumor science on you here - hopefully this will answer many questions some of you have had about diagnosis and treatment.
What's up with the tumor?
New MRI glamour shots taken at Mayo showed that my tumor hasn't grown at all in the past month. I had MRIs of my head and spine - the spine images were new to me, and showed that my tumor extends to the C3 region of the spine (just below the neck) - though this part of the tumor is much more mild than the growth in my brain stem.
The best news came from contrast enhancement images. During my MRIs, I get a dose of "contrast" which enhances MRI images to show complications in the blood/brain barrier. In other words, the contrast help to show how aggressive my tumor is acting. Contrast comes across as a white splotch on the MRI, and that splotch got smaller this month. It's possible the difference is due to the MRI images coming from two different machines, and also possible that the tumor is chilling out. Either way, my tumor appears to be chillin' - very good news!
Prior to this week, there was some uncertainty as to whether or not I have a low- or high-grade glioma. Low is preferable, as a higher grade means the tumor is growing faster. There's now agreement that I have a low-grade glioma - and of all of the patients my neuro-oncologist has seen with a low-grade brain stem glioma (BSG, or battlestar galactica as Katie Spicer pointed out to me!), he has seen only a handful that are doing as well as I am. It's a sign of a good prognosis. I'm delighted to be breaking all the rules and expectations - and am only getting started!
Biopsy?
A Mayo neurosurgeon discussed the possibility of a stereotactic biopsy with confidence... meaning he would insert a long needle into my brain, guided by an MRI image, and pull out some of the tumor. A biopsy may not effect my course of treatment, but would make me eligible for drug trials if I wanted to explore that option later on. I'll be talking with a couple of neurosurgeons in Boston to get their opinion.
I got some different opinions here - I could either wait to get treated, or get treated now. Either way, it sounds like Boston or some place with proton radiation therapy is the place to be. Proton therapy provides the same kind of treatment as regular radiation therapy (which uses photons or x-rays) but it can do so with less damage to healthy tissue. Also, the proton machines are maintained by a crew of nuclear physicists, which is just plain cool. Hopefully I'll have a better idea when treatment starts after the Boston visit this week.
What's good to eat in Rochester?
Sarah made the trip with me, and she found a wonderful south Indian restaurant - Clay Oven - delicious. Mango Lassis are apparently very good for brain tumors, and even better on the taste buds. On the way back, we stopped at Rainbow Cafe in Pine Island with Anna, who came down to help ask questions and share in the high-fives in the doctor's office.
Next stop Boston!
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