Surprise..you need brain surgery!
Then they’ll say to me, say to me, say to me
There goes the fighter, there goes the fighter
Here comes the fighter
That’s what they’ll say to me, say to me, say to me,
This one’s a fighter
Gym Class Heroes, The Fighter
The Papercut Chronicles II, 2012
On Monday I had the most comprehensive mAss kicking appointment of my life. I found out many new things, things that other doctors had not bothered to tell me or that had somehow been looked over. My brain tumor (outlined in blue on the left) is not actually an astrocytoma, but an oligodendroglioma; it is also grade 2 and is located in the left frontal insular region, not in the left frontal lobe where I had been originally been told. According to the National Brain Tumor Society, this type of tumor accounts for 2% of all brain tumors. National Brain Tumor Society also states that brain tumors are the leading cause of cancer-related deaths for children under 20..wow. AYAs really need more clinical trials and research being put towards mAss kicking.
Contrary to MRI reports I’ve received over the past five years, the neuro-oncologist that I saw declared my tumor “stable by no means.” Radiologists had been comparing my most recent scan only to the previous scan from 6-12 months ago instead of comparing the current scan to the original scan from 2007. When comparing scans that are 6-12 months apart you don’t really notice significant growth. However, after comparing recent scans to scans from 2007, you can see noticeable growth where the tumor has spread into the posterior and is infiltrating like a douchebag! This podcast from Johns Hopkins best explains the nature, progression, and treatment of gliomas like mine.
Radiation, chemo, and gamma ray treatment do not apply at this point in time because of the low graded nature of the tumor. The two options are: a) watch and wait or b) act aggressively with surgery. I’m set on surgery and am starting to book appointments with neuro-oncologists across the nation. Somewhere down the road, whether that be in a year, five, or a dozen, the “watch and wait” option leads to a guaranteed grade 3 tumor (aka brain cancer) and eventually a grade 4 tumor. Brain tumors graded 3 and 4 have to be treated with chemo and radiation alongside surgery, making the recovery process much harder and providing a much worse prognosis. My type of tumor, oligodendroglioma , typically reaches grade 3 after an average of 10-12 years from initial diagnosis. Time is on my side because I’m young and have not yet reached grade 3; regardless, 5-10 years from now the tumor could be much deeper, making the surgery much more complicated and risky. As the neuro-oncologist on Monday put it, “the risks will never be equal to or lower than they are today.” When it comes down to making the big decision about surgery, I have to take the risks today or tomorrows benefits. Ultimately, surgery to remove the tumor is inevitable, so I’m going to get it out of the way before I start college in a year.
Here’s a metaphor that the neuro-oncologist from Monday used: You’re driving on the highway and you hear on the radio that there is an icy bridge with serious accidents on it 10 miles down the road. You have 10 miles to find an exit, so you don’t have to get off the road on the first exit (don’t need to have surgery today, tomorrow, or next week), but you do need to get off of the highway – you know what lies ahead.
Getting at/to the tumor in the beginning and exiting when the surgery is almost done will be the most dangerous parts. The best case scenario without any complications during surgery would be spending a few days overnight in the hospital with 2 weeks to 4 months of basic recovery and a solid 2 months of physical therapy. The “good” news is that the location of tumor does not directly affect major functions like motor, speech, vision, or memory. There is also no direct hearing or vision impact. The location of the tumor only directly affects taste and smell. However, surrounding veins and arteries (like the middle cerebral artery) do carry blood flow directly to those important areas. I’m skipping a biopsy of the tumor because it involves taking risks without really gaining anything. Doctors are already 95% sure of the cell type..there’s no use in taking the risk for another 5% confirmation without any other gain.
I’ll be staying downtown at DMC for about 5 days the week of the 16th for a continuous EEG and sleep study to check out seizure activity and confirm or dismiss if my symptoms are seizures seeing as they have changed since 2007. If they’re not actually seizures, then I’ve been wiped out on Keppra for 3 wasted years! The odds that my symptoms are seizures is high though, because the insular region is known for producing “weird” and “atypical” seizures, like my symptoms. I guess the EEG will be the judge of that!
I’m currently looking into neuro-oncology surgeons at DMC, Johns Hopkins, Mayo Clinic, Memorial Sloan Kettering, possibly UCSF, and possibly UMiami. I have many mAss kicking friends to thank for these wonderful connections. I’ll probably post a video update from my hospital bed next week.