Probably More Than You Want to Know about My Brain Tumor

Probably More Than You Want to Know about My Brain Tumor

About a week after I was admitted to the hospital in St. Louis, my medical team recommended a biopsy of my tumor. So they put me face down on a surgical table for a few hours, screwed my head into a halo to stabilize things for the surgery, and took a tiny bit of the tumor for pathology.

You might wonder why they’d go through all that trouble just to not remove the damn thing. I would. I did.

The sucky thing is that the tumor was (and still is) in a precarious spot. Trying to cut it out is risky not only because of where it is, but because it’s got these tendril-like doohickies with no clear delineation where the tumor stops and the brain begins.

So they just took a little bit of the tumor, and some pathologists gave it a good look see. I’ll never, ever forget the neurosurgeon describing the procedure to me the night before as he loomed over my hospital bed.

“Basically, we’re going to cut a flap open on the back of your head, pull your neck muscles out, set them aside, take a little bit of the tumor, put stuff back where it was, and sew you back up.

“Just sign here,” he said, handing me a clipboard and a pen.

They determined that it was indeed a Grade 2 Astrocytoma. And then they sent the tissue off for Foundation One genetic testing and determined that my tumor was an IDH-1 mutant. With that info, they knew I was a good candidate for chemotherapy.

Lucky me.

What follows is a few of the juicy bits from that brain tumor biopsy:

Service: Neurosurgery

Brain, “Brain stem tumor,” Open biopsy (Includes AFR1 and AFR1-TP1)
– Diffuse Astrocytoma, IDH-1 mutant, WHO Grade II (see comment)
nxs/2/14/2017 18:22

Intraoperative Consultation:
An intraoperative consultation was obtained and is interpreted as: Called to pick up “brain stem tumor frozen,” consisting of tan-white tissue fragments measuring 1.0 x 0.5 x 0.3 cm in aggregate. Sampled for frozen sections (AFR1) and for cytological smear preparation (AFR-TP1).

AFR1/AFR-TP1: Brain stem tumor frozen
– Diffuse glioma
Microscopic Description and Comment:
Hematoxylin and eosin stained sections of the brain stem tumor biopsy material show several small fragments of brain parenchyma involved by a diffuse glioma, showing also a few entrapped neurons and some reactive astrocytosis. Cellularity is moderate.
The neoplastic cells have relatively uniform, mildly atypical, round-to-oval nuclei with variably dense or coarse chromatin and occasional small nucleoli. Some have indistinct cytoplasm; others have perinuclear halos. Rare apoptotic bodies are noted.
Definitive mitotic figures are not appreciated. There is no evidence of microvascular proliferation, endothelial hyperplasia, intravascular thrombosis, or necrosis.
Immunohistochemistry (IHC; single antibody stain procedures) was performed on block A2 to allow for tumor classification. The tumor cells show strong diffuse cytoplasmic reactivity for IDH1 (p.R132H). ATRX expression is retained in tumor nuclei.
Reactivity for p53 stains only rare scattered tissue nuclei (<1%). IHC for K3 K27M is negative. Reactivity for proliferation marker Ki-67 (MIB-1 antibody) stains a regionally variable proportion of tissue nuclei, manually calculated in an area of estimated maximal density to be <2% (13 of 699).
Fluorescence in situ hybridization (FISH) studies (G17-758; A2) show evidence of limited polysomy 19, but no evidence of 1p19q co-deletion.
The histomorphological, immunohistochemical, and cytogenetic findings from examination of the biopsy material support the diagnosis: Diffuse Astrocytoma, IDH1-mutant, WHO Grade II.
The patient is a 36-year-old woman with history of neck pain, headaches, numbness and  ingling in all four extremities, and difficulty walking. Magnetic resonance imaging on 02/04/2017 shows increased T2/FLAIR intensity, decreased T1 signal intensity, and diffuse expansion of the pons, medulla, and upper cervical spinal cord (extending down to the level of the C3 vertebral body), with internal patchy enhancement. Radiological impression: Most consistent with brainstem glioma.
Operative procedure: Suboccipital craniotomy and Stealth-guided Vertek open brain biopsy.
Specimen(s) Received:
A: Brain stem tumor
Gross Description:
Received is a formalin-filled container labeled “Suess, Emily A.” and “brain stem tumor frozen.” It holds a cassette (AFR1) that contains two pieces of tan-pink tissue, wrapped in tissue paper. Also within the container are 4 fragments of tan-white/tan-pink tissue measuring approximately 0.8 x 0.5 x 0.3 cm in aggregate. Wrapped. Labeled A2 and A3. Jar 0.

My First MRI Results

These are the MRI reports my primary physician had in-hand when she broke the news to me on February 3, 2017 at 1:30 p.m. that I had a brain tumor.

I’ll write more about how that experience went and how it affected me later. But for now, here’s the medical science-y stuff.

That’s a wiki commons image down there and not an actual image of my gray matter.


INDICATION: Weakness, clonus, abnormal gait

TECHNIQUE: Sagittal and axial T1, axial FLAIR, axial T2, axial SWI, axial DWI, and axial and coronal T1 post contrast sequences were obtained through the brain. Gadavist 9 mL was administered intravenously.


There is a T2 hyperintense fusiform expansile mass involving the entirety of the medulla and extending inferiorly into the upper cervical spine spinal cord to at least the C2-C3 level. The mass extends superiorly to involve the inferior dorsal pons including the right facial colliculus. The mass measures approximately 6.0 cm x 3.0 cm x 2.7 cm (CC, TV, AP). The mass demonstrates predominantly facilitated diffusion and little to no enhancement. Because of the expansile nature of the mass, the cisterna magna and subarachnoid space in the upper cervical spinal canal are effaced. The V4 segments of the vertebral arteries are draped along the lateral aspects of the mass.

The ventricles are normal in size and position. The supratentorial brain parenchyma is normal in signal intensity. There is no acute infarct or intracranial hemorrhage. No enhancing lesions are present in the supratentorial brain. The major intracranial flow voids are patent.

The orbits are normal. There is a small mucous retention cyst in the inferior left maxillary sinus. The mastoid air cells are clear.


Large infiltrative astrocytoma involving the medulla, upper cervical spinal cord, and inferior dorsal pons as described above. The inferior extent of the tumor is demonstrated to better advantage on the cervical spinal MRI performed today.

Neurosurgical consultation is recommended.

Gray 111 - Vertebral column-coloured labels


INDICATION: Weakness, clonus, abnormal gait

Technique: Sagittal and axial T1, sagittal and axial T2, sagittal STIR, axial 3-D GRE, and sagittal and axial T1 postcontrast sequences were obtained through the cervical spine. Gadavist 9 mL was administered intravenously.


A 6.2 cm x 3.0 cm x 2.7 cm (CC, AP, TV) infiltrative intra-axial and intramedullary mass expands the medulla and upper cervical spinal cord resulting in effacement of the subarachnoid space from the cisterna magna to the level of C2. The mass extends from the pontomedullary junction to the C2-C3 level and demonstrates T2 hyperintensity and T1 hypointensity. A few subtle wispy areas of enhancement are suspected, but the majority of mass does not enhance. The mid and lower cervical spinal cord is normal in signal and morphology.

The cervical vertebral bodies are normal in signal, height, and alignment. The craniocervical junction is intact. The prevertebral soft tissues are normal.

C2-C3: The intervertebral disc is normal.

C3-C4: There is mild left uncovertebral joint hypertrophy without central spinal canal stenosis or significant foraminal stenosis.

C4-C5: There is a small central disc protrusion without central spinal canal stenosis or foraminal stenosis.

C5-C6: A broad-based central disc osteophyte complex causes mild central spinal canal stenosis. Uncovertebral joint hypertrophy causes mild left foraminal stenosis.

C6-C7: There is disc space narrowing, a mild diffuse disc osteophyte complex, mild uncovertebral joint hypertrophy, and mild Modic type I endplate change. There is mild central spinal canal stenosis. There is no foraminal stenosis.

C7-T1: The intervertebral disc is normal.


1. 6.2 cm x 3.0 cm T2 hyperintense fusiform, expansile intramedullary mass involving the upper cervical spinal cord and medulla consistent with a brainstem and spinal cord astrocytoma.
2. Mild cervical degenerative disc disease including mild central spinal canal stenosis at C5-C6 and C6-C7 as detailed above.


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