Thyroid Cancer— What It's Really Like

A while back, I found myself reclined in an exam chair, about to have a big needle jabbed into my neck.

"Big pinch," the healthcare provider said as they gave me the local anesthetic. After that, 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. They were unaware that their single mom had a very suspicious 4-centimeter lump on their thyroid gland.

Two weeks prior to this appointment, my regular healthcare provider 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 healthcare provider, 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.

According to the Office on Women's Health, part of the U.S. Department of Health and Human Services, the thyroid is a butterfly-shaped gland in the neck that powers your metabolism. It plays a role in regulating body temperature and mood, among many other functions. So naturally, I wanted to keep as much of mine as I could.

"Did you take out my whole thyroid?" I struggled to ask when I saw Dr. Cohen. Dr. Cohen explained they removed the tumor and right side and that the tests in the operating room presented mixed reviews—again. Dr. Cohen needed more pathology tests. Still, the left part of my gland remained. A small win, I thought.

The Big Bad Reveal

According to the National Cancer Institute, there are approximately 43,800 new cases of thyroid cancer estimated in 2022. Females are far likelier than males to develop thyroid cancer. At my post-op appointment, I knew immediately that I had thyroid cancer by how Dr. Cohen looked at my chart. "So, as it turns out…." Dr. Cohen began.

My official diagnosis: follicular variant of papillary thyroid carcinoma (FVPTC). Sitting on the exam table, I had 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 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, according to the American Cancer Society, 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. These injections rapidly raised 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 themself from the thing they wanted me to swallow.

I signed the papers saying I would isolate myself from others for five days and not get pregnant for a year. Then, scared and fascinated at the same time, I swallowed the pill and left the hospital with enough radiation to set off alarms at airports.

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, Jack's 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 challenges was worth being healthy for Jack.

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 healthcare provider that understands. I need more than a pill; I need energy, a healthy weight, and happiness.

My meds have been adjusted four times this year 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 being able to celebrate a full year in remission did feel good. It was the most challenging 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 daily 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 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 a healthcare provider if you feel anything strange.