The tumor is in the center of my brain, pressing up against my brain stem, so it’s difficult to reach. It’s a large tumor and has spread into two areas. They can’t get to both of them in one surgery, so it will take two. They believe based on how it looks in the MRI that it’s 95% likely to be chondrosarcoma, which is a malignant cancer of the cartilage, but relatively self-contained and not as prone as other cancers to metastasizing.
The mortality rate for these surgeries is extremely low – like 1-2%. The five-year survival rate for stage 1 or 2 chondrosarcomas is about 90%, and the ten-year survival rate is around 80%. So, assuming it’s a low-grade chondrosarcoma, those are some pretty decent odds.
So, here’s the current plan:
On April 23rd, my parents will arrive in town.
On April 24th, I’ll spend the day having tests and things to prepare.
On April 25th – 27th, I’ll spend time around town with my hubby and parents.
On April 28th, I’ll have surgery #1, where they will go in through the side of my head and lift the temporal lobe of my brain out of the way to remove the center-back part of the tumor. This will leave a big circular scar on the left side of my head, which my hair should cover unless I decide to shave my head for a more pirate-like effect. The surgeon says I’ll “feel like a whipped dog” after this one, but will be recovered enough for surgery number #2 in 3-4 weeks.
During the surgery, as soon as they have a chunk of tumor, they’ll send it out for the pathologist to check out under a microscope, then adjust their approach based on the results. It’s impossible to know for sure what the tumor actually is until then, so after the first surgery, we’ll have a better idea of the longer-term plan and prospects.
Regardless, 3-4 weeks later we’ll have surgery #2. This is the one that makes me shudder, because the Otolaryngology (Ear, Nose and Throat) surgeon is going in through my nose, breaking out the back of my sinus cavity, and removing the center-front part of the tumor Egyptian-style. Evidently, this surgery has a faster healing time (at least physically – the idea of the whole thing will take considerably longer to stop creeping me out), so in 2-3 weeks, if we find it’s necessary, I’ll be ready to begin proton radiation therapy.
I don’t remember how long they said radiotherapy would last, but they said I should be ready to return to work in 3-6 months.
It is apparently very likely that my left eye won’t be able to turn to the left anymore after the first surgery, so I’ll need a different prescription for my glasses, and may need to wear an eye patch for a little while (arrrrgh).
Given the location of the tumor, radiotherapy is 95% likely to cost me the hearing in my left ear. People with unilateral deafness are unable to tell from which direction sound is coming and have a very difficult time distinguishing between background and foreground noises. This can cause social and professional challenges.
Other potential side effects of the surgery and radiation treatments can include:
- facial muscle weakness or paralysis
- blindness and/or eye muscle weakness or paralysis
- problems swallowing and/or speaking
- dizziness and headaches
- cerebrospinal fluid (CSF) leakage
- meningitis
There will be some physical therapy, and if they only have to stretch rather than cut my eye nerves to remove the tumor, it will probably take about a year to see how my vision ends up. Since hearing loss from radiotherapy progresses over several months, it will also take 6-12 months to see what kind of hearing I have left in the left ear, if any.
So, that’s the current plan, subject to change depending on the outcome of the first surgery.