Last Friday and this Monday we had hour-long calls about my brain mets. Friday we spoke with my Montreal oncologist, and Monday with a radiation oncologist at Mass General. The plan for now is to do nothing and see what the next scan shows. If things are stable, we wait for the next scan, and on and on. Watch-and-wait.
But here’s what we learned in more detail:
The mets are small. On Monday’s Zoom call, the radiation oncologist took us through the MRI scan so we could see them, which we clearly could. He also showed us the October scan for comparison. I don’t know how metastasis actually works, so it’s not clear to me when or why things “escaped containment” in my lungs but my guess is it happened as the cancer morphed from normal metastatic thyroid cancer to my current “high grade” version.
Everyone thinks the mets are small as of this scan, and wants to watch-and-wait. That could change at the next scan, or the scan after that, but it’s the plan for now. We are in full favour of going slow.
Treatments are tricky. It’s possible the drugs I’m on will help, but it’s also possible they won’t. There might be another drug that could help, but we were told that brain mets don’t generally respond well to drugs because of the blood-brain barrier. It’s also not clear what that would mean for my lungs–you can only be so toxic at any given time.
IV chemo also generally isn’t used for brain mets.
That leaves radiation if the mets grow or more of them appear and drugs don’t work. One approach is to wait for lesions to get a bit bigger and zap them individually as they become problematic. That’s what happened in my lungs this summer. There’s a point where there are too many, or they are growing too fast.
Another approach is called “whole brain radiation.” Except it’s not really the whole brain anymore. They spare the hippocampus and there’s a clinical study where they leave out other areas, and they can also still focus on targeting individual mets while they are at it. (I am not sure if I would be eligible for the clinical trial, or able to do it since my US medical insurance ends May 31st). Radiating the “whole brain” can lead to all sorts of short term and long term side-effects, which like all side effects are undesirable. Most of the talk about side effects is very euphemistic, using terms like “cognitive function,” and we really pressed the radiation oncologist on what that meant in the concrete. I don’t like euphemism in medical talk. We got into details, which I will spare you for now. I do believe it would be possible for me to lead a fulfilling life post-recovery (which might be a few months). But it might include new disabilities. And as one of my favourite lines from Alison Kafer goes, just because one has some disabilities and has accepted them, one doesn’t necessarily want more. Ok, I don’t actually care that much about hair loss at this point.
So whole brain radiation sounds to me like a treatment of last resort or near-last-resort, but also, there aren’t a ton of other treatments, so this decision could come sooner than I’d like it to.
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I have a couple small achievements to report that have been left out due to the whole “it’s in my brain” thing that’s been our focus of attention since last Thursday.
I walked up all 14 stairs from the first floor to the second floor, and then into my apartment, while carrying a 10 pound oxygen tank. I did not stop to rest in the middle, and I was not panting when I finished. I didn’t walk fast but it means the physical therapy has been working.
Speaking of which, I have just “graduated” from home physical therapy (ie, insurance won’t pay for more), which means I will soon start outpatient. In the meantime, I will continue the exercises I have. There’s a place two blocks away where I’d like to be seen.
Finally: I am able to comfortably breathe room air again–not only while I am sitting, but also when I am sitting with people and talking. My blood oxygen saturation does go down to the 91-93 range, which means if I exert myself it drops into the 80s, but I’m hopeful that will improve over time. Also, after a bit of adjustment, 2.0 litres of oxygen is as good as 3 for when I need it, which is when I’m moving around doing stuff or exerting myself at all.
Up next: Susan Sontag.