Hands forcing woman to smile

For Those in the Back, Leukemia is 'Real' Cancer

The idea that I feel the need to say, “leukemia is real cancer,” is weird, isn’t it? Well to me, it boggles my mind. Believe it or not, one of the main things I’ve learned through the past six years with chronic myeloid leukemia (CML) is that there is a lot of misunderstanding about the condition. I mean, I’m talking big-time confusion.

To be fair, before I got it, I didn’t know much about leukemia either beyond the fact that it was cancer, it involved blood and was bad. And, it is no fault of anyone else that I’m dealing with one of the rarer types of leukemia. CML is one of the more difficult to explain in terms of chromosomes 9 and 22 “translocating,” or as I put it, “switching and jumping onto each other.”

No apparent reason for that translocation? Try explaining that.

"Aren't you done with that yet?"

It’s difficult to understand why there isn’t some miracle drug that wipes it away for good. There’s no quick, easy way to get rid of the bad blood and replace it with the kind where numbers 9 and 22 aren’t screwed up. All weird concepts for sure.

However, outside of hearing the inevitable refrain of “aren’t you done with that yet?” the most head-scratching comments I’ve experienced center around the fact that some people don’t grasp that leukemia is “real” cancer.

With 'real’ cancer, there’s a tumor and an operation and a beginning, middle, and end, one way or another... right?

“Can’t you have chemo or radiation or something and clear that up the way other people do?”

“Why not 'just’ have a stem cell transplant and get rid of it and be healthy?”

Doesn’t work that way.

One cancer is enough to handle

Here’s something that happened to me. Scans were showing a “mass” in my pelvis a couple of years into my leukemia. My doctor was convinced it was metastasized breast cancer and gave me the heads up that more than 95 percent of the time that was the case. Pretty much warned me to brace myself.

I went through a CAT scan, PET scan, MRI, and bone biopsy (not to be confused with a bone marrow biopsy which I’ve also had). Turns out, it was not a different cancer at all but a clump of cells that decided to put themselves there, again, for no apparent reason.

Relief all around. The doctor was happy to be wrong. I was elated.

Then, there was this—the reaction. More than one person said, “Oh, I’m so glad you don’t have cancer, Susan!”

My first thought was, yeah, a second cancer would be a bummer. One is more than enough to deal with, thank you.

I still have leukemia

“Yeah, dealing with one kind of cancer is all I can handle at the moment.”

“What? I thought you said the biopsy came back negative.”

“But I still have leukemia.”

“Susan, you should just be grateful it is leukemia and not cancer.”

Can I hear a collective scream, people?

I’m not implying that these things were said in a malicious way. I think the term “leukemia,” is sometimes thought of as a condition like diabetes, lupus, or thyroid disease and not a type of cancer. At least, that’s been my experience.

I use the term blood cancer a lot now instead, just for my own sanity. I’m not looking for sympathy, not trying to “blow it out of proportion,” (yes, I’ve heard that too). I’m just trying to clarify and spread understanding.

Call it what you will, it’s no walk in the park and there is no quick, one and done solution — yet.

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