My Little Butterfly and the “C”-Word

The “C” word – no, I’m not really censoring myself, although sometimes I do feel like swearing profusely. No, this “C”-word is more earth-shattering and profound. It’s the word that has been playing on a loop at the back of my head for the past months and that for a while I haven’t been able to say out loud, as if saying it gives it power over me. As if saying it out loud makes it more real. The “It” that shall not be named. It is my own Lord Voldermort.

Cancer.

It is a word that is charged with a lot of emotion, preconceptions, expectations and despair. It is a word that truly makes you realise that you lack one other C-word: control.

It’s not that I haven’t heard of this word before or thought about it. I raised money for cancer charities, I read articles, I know people who have had it. I just never really thought I’d get it myself. Didn’t realise how devastating the word really is to a patient. Until now.

I think I first knew or suspected I had it a few months back, when I discovered a hard small pea-sized something on my neck, just below the skin, where my little butterfly sits. I didn’t think too much of it, or didn’t want to think too much of it. A couple of weeks later I went to my endocrinologist, but I didn’t tell him about it, mainly because I did not want to be branded a hypochondriac again (different doctor, different country, but still…). He ordered an ultrasound of my thyroid, since in over 5 years of my Hashimoto diagnosis, I’ve never had my thyroid scanned (which this new endocrinologist in the new country thought was very unusual).

I went for the scan. It was a bit weird. Not uncomfortable. A glob of cold clear gel dumped on my throat. It smelled clinical. The transducer moved around the front and the sides of my neck area and I glimpsed at what the radiologist was seeing on the screen. I couldn’t make head or tails of it. And then the transducer moved to where the pea-sized hard thingy was sitting on my little butterfly. And it stayed there. And stayed there. And moved all around it. And pressed on it (and that hurt!). And circled it once more. I glanced at the monitor screen again (not an easy feat, as I had to roll my eyes all the way to the furthest top right my eyes would roll). The radiologist clicked a button and the screen lit up in red and blue. I still didn’t know what that meant, but the continued focus on the pea-sized hard thingy meant to me that it wasn’t anything particularly good. I think this is probably when my conscience quietly whispered the “C”-word to me for the first time.

I tried to put it out of my mind, at least until I got my results. A week later I was back again in my endocrinologist’s office, along with one of his students (it’s a teaching hospital). He told me that my thyroid was of a normal size (so no goiter, which I was almost certain I had, as the lower part of my throat seems to be protruding slightly and I sometimes feel it pressing on my trachea).  He also told me that I had two nodules on my thyroid, one of which was 16mm in diameter and showed signs of calcification. That’s when I asked him if this is where it was found, pointing at the pea-sized  hard thingy on my little butterfly, because, I said, I could feel it. He was a bit surprised by this, but wanted to have a feel as well, and directed his student also to do so. When I was asked to swallow whilst the physician’s fingers were pressing on the pea-sized hard thingy, I broke down in a fit of cough.

As a precaution, all nodules with over 1cm diameter in someone with Hashimoto’s get biopsied. Also, all nodules showing signs of calcification get biopsied. Doubly whammy. I got referred for a fine needle aspiration biopsy.

This was truly one of the most harrowing experiences in my life. I so so wished they had put me under! But no, no anesthetic. Instead, having been told not to move or speak, I had to feel the needle go all the way into my throat and then, once positioned, moved around a bit to get a tissue sample suctioned through the needle. It was painful – I can’t lie about this one. I’m lucky that I’m not too afraid of needles, but after this experience, my next blood test felt a lot worse than it usually does. To make matters worse, I had this needle inserted and moved around in my neck not once, but twice. I cried, I wasn’t even too ashamed of it.

What came next was even more anxiety-inducing: I couldn’t get my results. I was first told they would be available in 7 to 10 days. I called the hospital: they weren’t yet ready. I called the hospital again: still no. I then went on holiday, resolving not to think about it until I was back.

Once I was back in my endocrinologist’s office (minus the student), he seemed a bit… shifty. Too much small talk. Too little eye contact. He asked me how the biopsy went. I admitted it was one of the worst medical experiences in my life.

And then he said: “Unfortunately, the results are….. ” (pause).

Me, uncomfortable with the pause and thinking he might tell me that I would have to do it again as the sample collected wasn’t good enough: “Inconclusive?”.

“No. It’s really not good. Not good at all. I’m sorry.”

Me: silence. Shocked. Tear beginning to slide out of the corner of my left eye (why is it always the left eye?).

He proceeded to explain that apparently the second ultrasound (which was done in order to guide the fine needle biopsy) showed that my thyroid was in a much worse state than the first ultrasound let on. Apparently it had been completely riddled with Hashimoto’s. According to the pathologist’s report, the hard pea-sized thingy was, apparently, 95-100% malignant. There’s a 5% chance it’s a false positive and I was referred for a second biopsy to rule it our (or to confirm the first diagnosis). If the diagnosis is confirmed, I will have to have surgery. Recommendation: full thyroidectomy.

The “C”-word has taken on a new meaning in my life.