Chondrosarcoma

by Brian Rigby, MS, CISSN

2 Replies

Quick

I’ve been a bit sporadic with my writing of late; I’m trying to remedy it, but I want to fill everyone in on what’s happening and why my posts have been sporadic.

About a month ago, I got an MRI of my head and neck done because I had some ongoing mild symptoms that were getting worse. Specifically, for a little over a year my tongue has pointed left when I stick it out (but didn’t feel abnormal otherwise), and sometimes when eating I felt like food was getting caught in my throat, which would cause me to cough. I had been working with a doctor to figure it out, but up to a few months ago the majority of the problems seemed nasal in origin, so our fixes were focused on these areas. However, a few months ago the left side of my tongue began to feel a bit swollen and when I was cold or speaking for a long time I noticed I couldn’t make certain sounds as easily as normal, such as “gh” and “r”.

I was referred to an ENT, who ordered an MRI based on my tongue deviation and other tongue-related symptoms, which turn out are a lot less benign than they initially seemed to me (and my first doctor). The MRI revealed a tumor at the base of my skull on the left side, which is impinging my hypoglossal nerve (hence the tongue deviation, due to hypoglossal palsy) and brushing up against my brainstem. So far we only have radiological evidence (no biopsy), but based on the appearance of the tumor in the images as well as my age and sex, the most likely cause is a type of bone cancer known as a chondrosarcoma.

So, that’s the bad news, and that’s what I’ve been focusing on the past few weeks—fixing a botched referral process (my initial referral from the first hospital to the second was lost, and I had to sort it out), getting all the images transferred successfully (because we live in an amazing digital age with patient privacy laws written before the advent of easy, cheap, fully encrypted email) by my own hands on a CD, waiting to hear from the doctors, being referred within the second hospital to a second neurosurgeon (for my third total!), and of course processing all that my diagnosis entailed. I finally spoke with a neurosurgeon in person this past Monday, and now things seem like they’re getting on track, though as I’m learning that track is nowhere near as fast as I had imagined it.

The good news, at least based on what we know right now, is that my prognosis is very good. Chondrosarcomas come in a few grades, and most likely the one in my head is “near-benign”, meaning it’s very unlikely to metastasize and spread to other tissues. It’s only “near-benign”, though, because it is growing up against my brainstem and will one day crush it if it’s not removed! Surgery should be procedural, with the surgeons going in through my nose to resect the tumor—no hole in the skull necessary, unless for some reason they cannot reach all of the tumor through my nose in which case they will do a second surgery going in below my left ear. Afterwards, I may receive some proton beam therapy (a type of focused radiation that has fewer side effects than traditional chemo; I’ll even get to keep my hair, except perhaps for the spot they beam through) if any remains. (This is a big deal to me because it’s taken two years to grow out; I literally have nightmares about cutting it, so I’ll take small victories like this where I can.)

Of course, this is all speculative right now because there hasn’t been a tissue biopsy yet. It could be a higher-grade chondrosarcoma, which would be worse, and there’s a chance it’s a different type of cancer entirely (though still a bone cancer) calledĀ chordoma, which would be far worse still. According to the neurosurgeons, however, chordoma is unlikely and most chondrosarcomas are low-grade, so I should be optimistic about it.

What does all of this mean for Climbing Nutrition? Hopefully, nothing bad other than some loss of consistency in the short-term, for example when I go through surgery. This whole ordeal—and the reflection on the future it entails—has made me think about my priorities, and I’ve realized that IĀ really want Climbing Nutrition to be more than what it is now; I’ve also realized that I don’t have infinite years to make that happen! So, in the coming weeks and months, I’m going to actually put out some of the random things I’ve worked on but haven’t finished. I’m also going to finish the revamp of my Patreon campaign (which was about half-done before I got my MRI) because I’ve also realized that I’ll never be able to make Climbing Nutrition sustainable until I can sustain myself with it; working on the site only in my free time is fine for a hobby, but for a long-term career it’s completely inadequate. If you visit my Patreon page, you can see (under goals) one of the major directions I want to go with this site, and I hope you let me know what you think because really this site is for you, and you’re the ones who ultimately decide whether my goals and ideas are worthwhile or not.

Okay, that’s all I had to say. For a quick post, this was relatively long, and I apologize for that. Here’s a summary for those who didn’t read through:

TL;DR

I have cancer, it’s treatable and the prognosis is good, I want to do more with Climbing Nutrition and support myself and family while doing it.

2 comments

Leave a Reply

Your email address will not be published.