It’s worse—and it may be tumor-worse.

This post is for anyone, but it’s probably best suited for other brain tumor families. I discuss some of the technical details of scans, and I also shake my fist.

After nine years of survivorship, I realize a serialized memoir like this personal blog may lose the attention of a large audience, but for those of us in the shit, we ought to keep telling our stories.

The best description I’ve heard to describe the presence of a brain tumor on an MRI scan is like a smudged thumbprint.

Some solid tumors are “encapsulated,” meaning they may have defined borders, or “margin,” and these tumors, as far as I try to listen at medical conferences and podcast episodes, are easier to surgically remove, or resect, given their more defined and enclosed shape.

The brain tumors, or at least common brain malignancies, again, insofar as I try to pay attention to lecturers, scientists, and to my own care team, are “diffuse,” without encapsulation. They may be local, but they lack defined boundaries, like an ink smudge. Tentacles and tails, white matter paths, and leaky blood vessels, the malignant brain tumor suffers from its own dysfunction–but also thrives within it.

The disfigured biology of the tumor uses evolution against its host. Its home, or habitat, its little niche in the brain, the “TME”-tumor microenvironment, is an oxygen-deprived, cold zone of poorly formed blood vessels, cell death, and impermeable by common immune cells.

A “cold tumor” it’s called, and it’s partly why those immunotherapy drugs that have found some success in other tumors, so far, don’t work in the brain. It’s hard to get an immune response going up there.

Whit grabbed a pic of a scan image from a recent MRI, an image identified specifically in the radiology report as an image suggestive of the finding: BT RADS 3a, meaning, 3: “imaging worsening (indeterminate/likely progression): worsening imaging findings,” and a: “worsening due to treatment effects.”

After recurrence at the end of 2023, I’ve had scans score between 2, “no change,” and 4, “worsening highly suspicious for tumor progression.” I’ve even read a few 1’s and 1a’s come through, “imaging improving,” especially after a favorable response to chemo in early 2024–improvement that finally gave out earlier this year (2025).

BTRADS 3a says this is worse—but not necessarily tumor-worse.

Then again, it may be.

That’s the maddening part: the language tries to hold both possibilities until the next scan. At some point, the technical jargon and reality come apart.

Basically, what the scan and score suggest is: no wonder you’re having a hard time getting a shower—things are worse—but we can’t say whether it’s disease any more than we can say the worsening is caused by what we’re doing to treat the disease.

Ain’t that a thing?!

Whitney texts me the picture.

I reply with a grimmacing face emoji.

“That looks like it’s in front, not behind.”

“Yep,” she says.

See, the doc said if the new area of concern is within the radiation field (“posterior” to the surgical cavity), we may concur with radiology that the worsening is owing to treatment effect, not disease burden–a “better” outcome, insofar as treatment effect causes problems, but we wouldn’t expect it to spread. But should the area be in front of the radiation field, that would concern us for disease progression. We continue to see little areas of concern popping up in that general region. A few months ago, we even discussed radiating that area, too! It was during that conversation the radiation oncologist dropped the legendary line:

I can radiate anything.

That really needs to be a t-shirt.

“That looks like it’s in front, not behind,” I said.

I’ve opened up that pic on my phone a few times after Whitney sent it. Sort of like a smudged thumbprint, a weird area hovering near large, dark circles, the areas where they’ve cut out and radiated tumor. The old “slash and burn.” This area looks more like a swirly cloud to me.

Strange the associations we find.

I recall undergoing my awake brain surgery and seeing a scan displayed on a monitor in the room that looked like a weather map superimposed on my brain.

What I see today is more like a Google Earth satellite view of a storm, and sure enough, a large, undefined area is present.

Post-radiation inflammation?

Increased tumor burden?

“That looks like it’s in front and not behind.”

Of course, the reason we don’t have something more definitive from my doctor is that insurance covers imaging at one facility, and my oncologist is at another. Often, the health systems do not communicate effectively as they should — I mean, on the back end, regarding record sharing and access. My doc was unable to see the images at the time of our visit, and so, we had only his take based on the written report.

My scan was a week ago now. That’s a while to wonder if your disease is killing you or maybe it’s only the treatment we’re using to treat the disease.

Either way, I feel like shit, and I don’t know how to keep slogging through.

Nine goddamn years of this.

BTRADS 3A.

What do we do with all of this?

Today, I’m just tired.

My head hurts, it’s difficult to shower independently, and it’s hard to get dressed, unless I’m tossing and turning around on the bed to avoid falling over when sticking each leg into skinny jeans from standing or seated positions.

My calendar is full of PT, lab work, MRIs, and so on. There is not a single tech, phlebotomist, doctor, nurse, or security guard whom I don’t love seeing on a regular basis. My dad knows the people at the grocery store on a first-name basis, and that’s my relationship with my care team, but shit is just hard. Last appointment, I asked for more Prozac, like, well, if we don’t know if I’m dying yet, give me more of the sweet, sweet fluoxetine.

That’s grim.

My bad.

It’s just hard out here, fam.

If you’re going through it, I see you.

This blog post was published by Glioblastology on October 7, 2025. It is republished with permission.