What It's Really Like to Have Thyroid Cancer
About a little over a year ago, I found myself reclined in an exam chair about to have a big needle jabbed into my neck.
“Big pinch,” the doctor said, as he gave me the local anesthetic. I just stared at the ceiling, trying to remain calm despite the fear and the burning bee sting sensation.
I spent the previous evening drinking wine and Googling, “cancer in your neck,” “biopsy needle,” “lump in neck,” and “thyroid cancer death”—while my six-year-old son, Jack, and our brand new Golden Retriever puppy, Lucia, slept peacefully unaware that their single mom had a very suspicious 4-centimeter lump on her thyroid gland. Two weeks prior, my regular doctor had discovered the lump during a routine physical. An ultrasound and CT scan later, this needle was to determine whether it was cancer.
But it didn't.
That's the first thing I learned about having cancer: it can take an awfully long time to confirm that you actually have it.
Saying goodbye to my gland
At my next appointment, my doctor, Erik Cohen, MD, of Carol G. Simon Cancer Center at Morristown Medical Center, explained that my biopsy was “inconclusive,” yet “suspicious.” Surgery was scheduled.
On the day of, I pushed through the revolving glass door and before I knew it, the anesthesiologist said, “I’m going to give you something to relax.” A happy feeling took over, and then total, peaceful blackness. When I woke up, my throat was sore from the breathing tube, there was a drain in my neck, an IV in my arm, blood pressure cuffs on my legs, and wires everywhere.
“Did you take out my whole thyroid?” I struggled to ask when I saw Dr. Cohen. The thyroid is a butterfly-shaped gland in the neck that powers your metabolism. It also plays a role in regulating body temperature and mood. I really wanted to keep as much of mine as I could.
Dr. Cohen explained he removed the tumor and right side, and that the tests in the OR presented mixed reviews—again. He needed more pathology tests. Still, the left part of my gland remained. A small win, I thought.
The big bad reveal
There are approximately 60,000 new cases of thyroid cancer diagnosed each year, with women accounting for 75% of cases. At my post-op appointment, I knew immediately that I was one of those some-60,000 by the way Dr. Cohen looked at my chart. “So, as it turns out…" he began.
My official diagnosis: follicular variant of papillary thyroid carcinoma (FVPTC). Sitting on the exam table, I was having trouble reconciling this information with the other facts of my life. But I'm only 33, I thought to myself. I've never smoked a cigarette a day in my life. I drink green juice and exercise. And the most important: I can't be sick. I'm Jack's mom.
Some more facts I was learning: thyroid cancer has a survival rate of nearly 97% after five years. These facts asserted that "in general" my kind of cancer is “good.” But what about that other 3%? And oh yeah, Dr. Cohen explained, I now needed another surgery. The rest of my thyroid had to go, and I probably also needed radioactive iodine therapy, a type of radiation treatment also known as “RAI.”
This was not the first time life had thrown me a curveball, so I tried to remain calm, telling myself I always find a way to work things out, or at least find an inch of silver lining. But I did not convince myself at all.
A new normal
After my second surgery rendered me completely thyroid-less, I was started on 100 mg of Synthroid, a standard drug that replaces the hormones the thyroid gland naturally produces.
I am so thankful my cancer was treatable, and that medication exists to replace what my vital gland once did. But let me tell you, life without a thyroid is not a piece of cake. I was perpetually tired and depressed, but also anxious and constantly obsessing about my weight and diet. I was cold when it was warm outside, and sweating when the AC was on.
On top of all that, I still had RAI treatment to look forward to.
Normally, the thyroid gland absorbs iodine in your body. So when thyroid cancer patients take radioactive iodine in pill or capsule form, the radiation concentrates in any leftover thyroid cells and destroys them, without affecting the rest of the body.
To prep for this, I was put on a low-iodine diet (no iodized salt, dairy, eggs, pizza, cheese or seafood for me!), and given thyrogen injections to rapidly raise my thyroid hormone levels to make the radiation effective at killing as many lingering cancer cells as possible.
When I showed up in the Nuclear Medicine department in the basement of the hospital, the radiologist entered in a mask, lead apron, and gloves to protect himself from the thing he wanted me to swallow. I signed the papers saying I would isolate myself from others for 5 days and not get pregnant for a year. Scared and fascinated at the same time, I swallowed the pill and left the hospital with enough radiation to set off alarms at airports.
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I felt like I had the flu, and because I could still set off a Geiger counter, I had to sweat it out alone. I had weepy moments but I got through it, and a few short days later my son and my dog got to come home. Jack busted through the door like a ball of energy and Lucia jumped on me, so excited she peed right there. Having Jack back in my arms, his cookie crumbs on the couch, and new drawings on the fridge made my home whole again. Since I could eat again we celebrated with pizza—extra cheese—and frozen yogurt. And I knew a year of hell was worth being healthy for him.
One year later
Now I see an endocrinologist every few months, and I'm still struggling to find a good balance.
Every "thyca" survivor I've befriended has gone down this same endo rabbit hole, trying to find a doctor that understands. I need more than a pill; I need energy, a healthy weight, happiness. My meds have been adjusted four times this year in an effort to achieve this, and I'm trying to come to terms with the fact that I might never be symptom-free. That's why I bristle when I hear people say thyroid cancer is a "good" cancer—there's just no such thing.
But on September 10 I celebrated one year in remission, and that does feel good. It was the hardest year of my life but I got so much out of it. Being part of the "Big C club" is scary but it reminds me every day how amazing life is.
If I could tell one person to check their neck today and they listened, this article will have done its job. You can examine your own thyroid by feeling just above the collarbone on either side of the trachea with your fingertips—something I never did. Look out for any swelling or lumps. Don’t wait to see your doctor if you feel anything strange.
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