Whenever I mention that I’m a thyroid cancer survivor, people inevitably ask, “How did you find out you had thyroid cancer?” So, I’m writing this post as a PSA for Thyroid Cancer Awareness Month, which happens every September and is spearheaded by ThyCa, the Thyroid Cancer Survivor’s Association. I’ve included plenty of links to reputable information sources for anyone who wants to dive deep into this illness.

How I found out I had thyroid cancer is as much a cautionary tale as it is about sharing my experience being diagnosed with this cancer. People have limited knowledge about thyroid cancer, which the American Cancer Society notes is frequently identified at a younger age compared to most adult cancers. This held for me as well. Despite a history of cancer in my family, the idea of being diagnosed with any kind of cancer before turning 50 never crossed my mind. Like many people, I mistakenly thought thyroid cancer wasn’t a big deal and that it couldn’t happen to a young person like me.

The moment you bring up the term “cancer,” it tends to evoke fear in people. Looking back, however, I wasn’t fearful enough. Ironically, I have a history of intermittent hypochondria. Yet, when the cancer I feared I’d get was actually growing in my body, I ignored it for entirely too long. Don’t do that. Thyroid cancer, though relatively rare compared to other types of cancer, is a serious condition that can have significant health implications if not detected and treated early.

When a person is diagnosed with thyroid cancer the most common course of action is to have a total thyroidectomy, which means the entire thyroid gland is removed, and that’s what happened for me. Since my diagnosis and treatment, though, and it’s been about ten years since my recovery, new reports have been released that indicate this cancer is over-diagnosed. The reason this is important and why I mention it is because you may have to make the decision to remove all, or part, of your thyroid gland.

What you need to know if you’re faced with this outcome — if the doctors are telling you to have a total thyroidectomy — is that you may have other options. Many doctors now feel that thyroid cancer can be monitored so a patient can keep their thyroid gland. I want to ask you to consider that before a total thyroidectomy. In hindsight, the worst part of thyroid cancer for me was what happened after my thyroid gland was removed. My body was never the same.

Not having a thyroid gland is like losing an important part of a well-made car that can’t be replicated. A mechanic manages to find you a similar part, and it works, but the car never quite runs as well as it once did, and a plethora of smaller, related problems arise that wouldn’t have happened with the original part.

If you’re currently being treated for thyroid cancer, or fear you’ll be diagnosed, the best thing to do is educate yourself about this disease and the corresponding treatment options. Being aware of the symptoms associated with thyroid cancer, which I list at the end of this post, can help you get an early diagnosis and effective treatment.

My Doctor Found the Lump During My Annual Physical

How I found out I had thyroid cancer is (kind of) a funny story, too, in the sense that, being a notorious hypochondriac, my family and friends were surprised that I didn’t launch into a frenzy at the discovery of a lump. It was discovered in such a random way, though, that cancer never even crossed my mind. I hadn’t noticed it, though I do now when I look at pictures from that time. I had a pronounced lump in the middle of my throat. I don’t know how long it had been there. My doctor, who has a very kind and soothing bedside manner, found it during my annual physical. He was doing my ear, nose, and throat exam and he spent more time than usual on my neck.

In a calm and casual way, which I now realize was purposeful, he remarked, “Hmn. There’s a small lump here. You should have that looked into.”

I asked what he meant, and he advised me to get an ultrasound as soon as possible. I didn’t really understand because I thought an ultrasound was something only pregnant women got. I’d never needed one before.

I Waited Too Long to Get an Ultrasound

Though I completely trust my doctor, and he’d told me to get it checked asap, I visited Dr. Google for a second opinion. I found plenty of medical sites with information about a lump in the throat, but they all said it was a goiter. So, I thought I had a goiter. Most said goiters were relatively benign. So, I didn’t think I had anything to worry about. I’d get the ultrasound when I had time. (Time is a relative term.) The discovery of the lump was not how I found out I had thyroid cancer. it was just the beginning.

I remember reading a few articles that mentioned thyroid cancer, but they all said that it was rare. In fact, every article repeated the statistic that there’s less than a 5% chance a lump in the throat is thyroid cancer. And that was that. OK, then. I moved on. I was working a stressful, busy job and delayed the ultrasound. I waited four months. (Thankfully, the type of thyroid cancer I had grows slowly.)

An ultrasound of the neck doesn’t hurt. A technician puts a jelly-like substance on a device and then moves that along the surface of your neck. You just feel him or her pressing down. The device uses high-frequency sound waves that capture echoes as they bounce back from the tissue. These echoes are converted into real-time images that provide detailed information about the size, shape, texture, and location of the thyroid gland and any potential abnormalities, such as nodules or tumors. An ultrasound can help differentiate between benign and malignant nodules based on characteristics like irregular shape, microcalcifications, increased blood flow (vascularity), and changes in echogenicity.

When I finally went for the ultrasound, I was annoyed. I did it to appease my doctor who had called to ask why I hadn’t done it yet. So, a week later when he called again and told me that now I needed a fine-needle biopsy, I was doubly annoyed! I appreciated his concern and thoroughness, but enough already. What was the big deal about a goiter?

The Fine-Needle Biopsy Was How I Found Out I Had Thyroid Cancer

I waited another two months to schedule the fine-needle biopsy. I didn’t have time for this nonsense. I finally got around to it and the endocrinologist was the exact opposite of my calm, reassuring general physician. He had a good reputation, but a jarring and unsettling bedside manner. He was awkward and spoke bizarrely, not unlike Groucho Marx in the way he putzed around me, but not funny in the least. The fine-needle biopsy hurt like heck. If you’re going to have one, mentally prepare for the worst and you’ll only be mildly vexed. I’m still peeved at the person who told me I’d just feel a little tickle.

A fine-needle biopsy is a minimally invasive test to detect thyroid cancer. During the procedure, a super-thin needle is carefully inserted into the thyroid nodule or lump, usually guided by ultrasound for precision. The needle is then used to extract a small tissue sample from the thyroid gland. (<<<Friendly Warning: don’t click on that link if you’re squeamish.) The sample is examined under a microscope by a pathologist to determine if there are any cancer cells.

For some reason (I assume sadism), the endocrinologist needed five attempts to extract the right tissue sample. Five. F-I-V-E. A week later, I was informed I had papillary carcinoma.

My response: “Huh?”

The nurse explained that papillary carcinoma was cancer and that I’d have to have a total thyroidectomy. Papillary carcinoma accounts for around 70-80% of all cases. It originates in the cells that produce thyroid hormones and typically grows slowly. Papillary carcinoma is characterized by the formation of small, finger-like projections, or papillae, within the thyroid tissue. While it can occur at any age, it’s most commonly diagnosed in people between 30 and 50. Despite its prevalence, papillary carcinoma has a relatively favorable prognosis.

Thyroid cancer patients are often told they got the “good” cancer. This makes all of us nuts, and I’ll write another post on why this isn’t true, but until I do, here’s an article about it. You’ll know that thyroid cancer is not a good cancer if you’ve seen the film or read the book, “The Fault in Our Stars,” which is quite beautiful and among my favorites. The heroine, Hazel, is dying of thyroid cancer that has metastasized to her lungs. The type of thyroid cancer isn’t mentioned and could’ve been either papillary or anaplastic thyroid carcinoma, which is more aggressive with a higher mortality rate.

Text box on photo of stars in a purple sky. The text box reads, "Grief does not change you, Hazel. It reveals you." This is a quote from John Green's book, The Fault in Our Stars.

So, ultimately, the fine-needle biopsy was how I found out I had thyroid cancer. If you’re reading this and you’re worried, the most important thing to know is that there wasn’t a single symptom that made me suspect I had thyroid cancer. I felt fine. If my doctor hadn’t found the lump, I may not have known until it was too late. When I think back, there were a few things, like lethargy and significant weight gain that showed my thyroid gland wasn’t working properly, but I’d chalked it up to aging.

Some patients have symptoms and it’s good to know what they are, so here’s a helpful list.

The Symptoms of Thyroid Cancer

  • Lump or Nodule in the Neck: The most common sign of thyroid cancer is the presence of a lump or nodule in the neck, often located near the front of the throat. While most thyroid nodules are benign, it’s essential to have any new or growing lump examined by a doctor.
  • Hoarseness or Voice Changes: Unexplained hoarseness or changes in your voice that persist for more than a few weeks could be indicative of thyroid cancer. The cancer’s growth can affect the vocal cords and lead to voice changes.
  • Difficulty Swallowing or Breathing: Thyroid tumors can cause difficulty in swallowing, especially when eating solid foods, or breathing, due to their location in the neck and potential pressure on the trachea or esophagus.
  • Neck Pain or Soreness: Persistent pain or discomfort in the front of the neck might be a symptom of thyroid cancer. However, it’s important to note that many other conditions can cause neck pain as well.
  • Swollen Lymph Nodes: Enlarged lymph nodes in the neck, sometimes accompanied by tenderness, can be an indication that thyroid cancer has spread beyond the thyroid gland.
  • Changes in Neck Appearance: Any noticeable changes in the appearance of your neck, such as asymmetry or swelling, should be evaluated by a medical professional.
  • Fatigue and Weakness: While fatigue is a non-specific symptom, persistent and unexplained fatigue, along with other thyroid cancer symptoms, could warrant further investigation.
  • Unexplained Weight Changes: Weight changes can be associated with certain types of thyroid cancer, or with an underactive or overactive thyroid.
  • Changes in Menstrual Patterns: Thyroid imbalances can affect hormones and lead to irregular menstrual cycles or other menstrual changes.
  • Feeling a Lump in the Throat: Some individuals with thyroid cancer report feeling like there’s a lump or something stuck in their throat, known as a “globus” sensation.
  • Difficulty Swallowing or Chewing: Trouble swallowing or chewing, particularly with solid foods, might be indicative of thyroid cancer affecting the esophagus or nearby structures.
  • Persistent Cough: A chronic cough that doesn’t seem to resolve could be linked to thyroid cancer, especially if it’s accompanied by other symptoms.

It’s important to note that most of these symptoms are present with other conditions, too. Having them doesn’t mean you have thyroid cancer, but you should have your neck checked during your annual physical anyway.

Don’t Forget to Check Your Neck

Cancer survivors know that you spend a year being a pin cushion. Once you’ve had cancer, you’ll never fear bloodwork or getting stuck in medical machinery ever again. If you’ve had radiation, you’ll look laugh over shots of whiskey about how you had to sign that silly form to let the NRC know your whereabouts. (My hope for you is that you’ll laugh about it, whisky notwithstanding). Cancer teaches patience for what really matters and impatience for what doesn’t.

I’m proud of how stoic I was during treatment, surgery and the subsequent surgery hospitalization when I experienced complications. You know you’re made of some pretty serious shit when you’re a cancer survivor. During the entire ordeal, I was laser-focused and serious minded. The words of President Jeb Bartlett were emblazoned on my mind: “what’s next?” (I’ll take any opportunity to reference The West Wing). I didn’t have time for self-pity. I had to get from this doctor to that medical facility and get those test results, and so on. I was on a mission. I was going to be the best cancer patient ever. And I was.

Until I wasn’t….

The worst part of cancer came six months after my total thyroidectomy and radiation. My body shut down. I was narcoleptic. I fell asleep at my desk. My mind was worse. I suffered and was treated for debilitating clinical depression. (As many as 25% of cancer patients develop clinical depression). The thyroid gland impacts more than I realized. My body and mind were seriously pissed off that it was gone. It took three years to find the right replacement thyroid hormone dose because you can only check if it’s working every three months. That’s how long it takes to build in your bloodstream enough to measure. The fact that I was gaining weight worked against finding the right dose.

I had a host of physical ailments, too. I didn’t feel well again for four years. Though I’d been outdoorsy and fit, getting back in shape was an uphill battle and I’m still fighting. I’ll share more on life without a thyroid gland in another post, but I wish I’d taken the whole thing more seriously. Had I acted sooner, it might not have been as bad.

In hindsight, I wish I’d known that I might have kept my thyroid gland and monitored the growth of the cancer instead. If I’d know how badly my body would react to its removal, I would’ve tried that first. So, if you get nothing else from this post, get that. Get that you need to research your options and have multiple medical tests and opinions before you make that decision.

My health now is solid. I’ve benefitted from minimizing sugar and gluten and adopting a whole foods, mostly Italian, Mediterranean Diet. I’ve accepted that weight will always be a battle.

Remember that early detection and treatment of thyroid cancer greatly increase the chances of a positive outcome. Regular check-ups, self-examinations, and open communication with your doctor are key to discovering thyroid cancer, or thyroid-related illnesses, (as well as to maintaining your overall health and well-being).

Light of Life Foundation

If you’d like to delve deeper, a few years back, the Light of Life Foundation, ran this wonderful, “Check Your Neck” campaign championed by Brooke Shields and Cindy Crawford. I highly recommend you read through their campaign materials and their foundation’s website for the best information about thyroid cancer.

If you’ve had thyroid cancer, or suspect you do, I’d love to hear your story. Please feel free to ask questions or share your experience in the comments below. It might help someone!

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