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What does it mean to have cancer?

Updated: Apr 23, 2019

Photo taken the day after my thyroidectomy.

Five years ago, quite by accident, I learned that I had cancer.

It was only the size of a smallish grain of fine sand — fine sand, as opposed to ordinary sand, which measures between .02 mm to 2 mm in diameter. My cancer, at 1.5 mm, fit snugly into this range. As far as cancer goes, that’s about as small as it gets; but, as I’ve been told, cancer is cancer.

That was my cancer. A tiny baby cancer, as my otolaryngologist called it, found in the right lobe of my liberated thyroid gland, a butterfly-shaped organ that controls the hormones that control the body's metabolic processes.

My cancer was incidental, found post-thyroidectomy, a procedure deemed necessary since my thyroid was enlarged enough to interfere with breathing and swallowing. I never would have known that the cancer was there. Yet, no matter how small, because of this “tiny baby cancer” I am now on thyroid stimulating hormone (TSH) suppression therapy which pushes my TSH well below the normal range. Every six months I have a standing date with a phlebotomist, for a blood draw to check for thyroglobulin, a tumor marker, plus TSH, T3 and T4 levels; synthetic hormones since I have no thyroid. I also have a date with a sonographer in which I am asked to lie very still in a darkened room on my back on a not very comfortable table while a transducer, aided by some often startlingly cold jelly, is run across my “neck compartment”, checking for abnormal growths.

My otolaryngologist says I’ll need to continue this routine for a solid ten years.

My cervical lymph nodes are generally enlarged, likely due to inflammation. (Still not entirely sure what's causing it, but I have been diagnosed with Fibromyalgia, so there's that.) Lately, we’ve been tracking one particular lymph node which seemed to be getting larger.

Every trip to the sonographers has resulted in basically the same routine: During the exam, I try to peek at the monitor to see what the sonographer is seeing, ask questions that the sonographer can’t answer because, well, they’re not the radiologist and aren’t equipped to answer my questions.

I watch as the square of the monitor lights up, pulsates red and blue and orange, or stippled with white like a constellation, trying to decipher what I'm seeing, read the words and letters and numbers edging the perimeter of the screen, watch as the sonographer clicks the mouse on one side of a fuzzy circular blob, holds it down, then clicks on the other side, measuring the diameter of the node.

This goes on for about forty-five minutes, until she hops up (it’s usually a she), says I’ll be right back, leaves to consult with the radiologist, comes back. Then, either she has been instructed to take more images, or she hands me a cheap white terrycloth towel to wipe the jelly off. Then I sit up, slip my shoes back on, and the wait begins.

Usually it takes a few days to get the results back, and thanks to modern technology, one now need look no further than an app on their cellphone to see radiology results rather than the usual wait for a follow up appointment with the doctor. Even biopsy results can be reviewed in minutes, as I have now found out. But any wait is excruciating when you’re worried. I've been known to sit in my car for an hour afterward, obsessing and googling every detail I could glean from the screen and/or whatever the sonographer had let slip.

I keep waiting for the other shoe to drop, certain that it's about to happen any minute.

After my last sonogram, my doctor went ahead and ordered an FNA — a fine needle aspiration biopsy — on that seemingly enlarged lymph node, which at the time measured 1.6 cm x 1.7 cm. In fact, that same report showed at total of four roundish lymph nodes measuring more than 1 cm in diameter. According to Dr. Internet, who I turn to when I need a swift but not necessarily accurate answer, but in this case from the NIH, “Lymph nodes measuring more than 1 cm in the short axis diameter are considered malignant.” [] This was all I needed to see to justify voluntarily allowing someone to stick a sharp needle in my neck, with no anesthetic, as it turned out.

For the uninitiated, an FNA is when a needle is slipped through the skin, past other tissue, and into whatever is being biopsied; in my case, a lymph node. There it sips fluid or material to be examined beneath a microscope.

There are a couple different places you can get one of these procedures done: There are what I have come to think of as radiology mills— a sort of smorgasbord of procedures performed under the same roof. Need a mammogram? Sure. An X-ray? Yes, that too. A barium swallow study? Of course! MRI, nuclear imaging, PET/CT, Ultrasound, FNA, and who knows what else. And then there are the gourmands, where a single entree (procedure) is perfected; they specialize in excellence.

My first FNA, the results of which ultimately came back inconclusive and weeks later but nevertheless led to my surgery, was performed in the former, by a radiologist who while standing over me on the table tried to talk me out of the procedure. My second FNA, which came back as conclusively negative, was performed in the latter by a woman who left me no doubts — about her competence, and about her conclusion, and in a matter of minutes while I lay there on the table measuring my wait in the number of muzak songs that played over the PA: three vaguely familiar but unrecognizable instrumentals that seemed to go on forever.

Yes, the FNA came back negative. And yet, there are still those pesky enlarged lymph nodes, and other frustrating symptoms that still feel like unresolved Hashimotos Thyroiditis, an autoimmune disorder often related to hypothyroidism, my original diagnosis, and which led to my thyroidectomy. I’ll be back under the transducer in a few months.

All of this from a cancer the size of a grain of sand requiring no chemo, no radiation, not even radioactive iodine.

Last year, my mom, a breast cancer survivor, asked me to walk with her in a local women's walkathon for cancer survivors. I didn't feel I belonged. Most of those women had gone through the entire treatment process, lost their hair, recovered; watched others succumb. But my mom reminds me -- as does every doctor's appointment forever on where I now have to check the box next to cancer, explain what kind, what year -- that I too am a survivor. Through luck or chance, privilege or providence, or vigilance.

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