Living Life with the “Easy” Cancer

Do you know where your thyroid is? How about what it’s function is in your body? Unfortunately, a lot of people don’t know the answer to either one of those questions. The American Thyroid Association reports that up to 60 percent of those with a thyroid disease are unaware of their condition. Your thyroid is a butterfly-shaped gland in your neck, beneath your Adam’s apple. As part of the endocrine system, it releases hormones that play a vital role in regulating your metabolism, moods, growth, body temperature, reproduction, and heart rate. It also has an effect on the absorption of a number of vitamins and minerals in your body. Diseases of the thyroid can range from hypothyroidism (under-active thyroid) and hyperthyroidism (over-active thyroid), to autoimmune diseases and thyroid cancer.

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Every September is thyroid cancer awareness month. I didn’t know that a year ago. In fact, like most people, I barely knew anything about my thyroid. My mom has been battling autoimmune hypothyroidism (Hashimoto’s disease) for many years. Still, I was sorely uneducated on the extensive amount of bodily functions that our thyroid plays a role in. All of that changed on December 12th 2016, the day I was diagnosed with thyroid cancer.

In early October, I felt a lump on the left side of my neck. I had been feeling fatigued and a bit feverish, so I figured it was a lymph node swelling in reaction to an oncoming cold. For the next month I ignored it, choosing to focus on the many things happening in my life at the time. In November, my best friend noticed that the lump had grown in size. I became worried and made an appointment with my primary care doctor. At the visit, my doctor could barely feel the lump. “It’s likely just a cyst, but I’ll send you for an ultrasound to make sure. We’ll follow up from there.”

I went for the ultrasound the day before Thanksgiving. I sat alone in the quiet facility, looking out the window. The temperature outside had begun to drop, but there was a steady stream of last-minute shoppers patronizing the supermarket nearby. When I was finally called into the exam room, the radiologist was cheerful and conversational. Once the exam began, her demeanor changed. “You also have a nodule on your thyroid?” she asked. “Not that I know of. Why?” I responded nervously. She shook her head and continued on to the site of my lump. As I laid on my side to give her a better angle, I caught a glimpse of the monitor. The sheer size of the lymph node shocked me. It only measured 1.6 cm, but on that tiny screen it looked enormous. When all was said and done, I walked out of the office and called my boyfriend Jeremy. I had already begun crying when he answered, but I did manage to say one thing — “I think this is serious.”

My parents and I trying to smile after my biopsy.

The next steps happened so quickly, it was almost a blur. I visited an otolaryngologist that specializes in head and neck surgery. He ordered a CT scan and a biopsy. The biopsies are usually more uncomfortable than painful, but my lymph node was filled with so much debris that I had to be poked numerous times. A few days later, I was called by the surgeon’s assistant, asking me to come in on Monday. I was grateful that they were getting back to me so soon, but my heart dropped when she stressed that I would need to bring my parents with me.

The Sunday before the appointment was my 21st birthday. My parents took Jeremy and I out to breakfast to celebrate. The mood was somber. We all knew what was coming the next day, but nobody wanted to acknowledge it yet. I ignored the incoming calls and messages from friends and family. Everyone wanted to know how I was celebrating this big milestone birthday, the one I had been talking about forever. Nobody knew about the last 3 weeks of painful tests and appointments. We ate our breakfast, went home, and slept just to avoid talking.

Hearing the diagnosis was a lot harder than I thought it would be. My surgeon explained that my type of thyroid cancer, papillary, is extremely treatable (with a 5-year survival rate of over 95%). Unfortunately, my cancer is metastatic, meaning it has spread beyond the thyroid. In my case, many lymph nodes were compromised. Instead of just having a total thyroidectomy, I underwent a central and lateral neck dissection, as well as radioactive iodine therapy.

According to the Clayman Thyroid Cancer Center, up to 50% of patients with papillary thyroid cancer will have metastasis to the lymph nodes. While this doesn’t change our prognosis, it does make it more likely that the cancer will come back. The chance of recurrence for thyroid cancer patients is up to 30%. Many patients deal with persistent disease, even several years after the initial diagnosis. It is not uncommon for us to have multiple surgeries or radiation treatments over the years, and we are never “cured.” Instead, our good news is that there is “no evidence of disease at this time.”

In the recovery room after surgery.

I was anxious to get the surgery over and done with. My surgeon predicted the surgery would take no longer than four hours, but they were working on me for almost seven. Nine months later, I still have swelling, and the feeling in my neck and face is coming back slowly and painfully. Despite that, the surgery has been the easiest part of this process. All thyroid cancer patients have to rely on a pill everyday for the rest of their lives. This pill is a synthetic form of thyroid hormone, intended to replace the function of our missing gland. In order to prevent the cancer from returning, many endocrinologists require us to be on high doses of hormone to keep our TSH (thyroid stimulating hormone) suppressed. This prevents the stimulation and growth of any thyroid cells left in our body. This suppression therapy causes us to have many of the symptoms of hyperthyroidism — anxiety, heart palpitations, insomnia, irritability, fatigue, etc.

Radioactive iodine therapy (RAI) is the most common form of radiation for thyroid cancer patients. It is exactly what it sounds like — a radioactive isotope of iodine that we take in either pill or liquid form. Thyroid cells are the only cells that absorb and hold onto iodine, so this therapy is intended to destroy anything remaining after surgery. In order to prepare for the pill, we’re required to go on a low iodine diet. By depleting ourselves of dietary iodine, we make the cells “hungry” for the radiation. The most common foods to avoid are dairy, cheese, iodized salt, anything from the sea, and almost all forms of soy. As a pizza fanatic, this was very distressing for me! Thankfully, I came across a wonderful non-profit organization called the LID Life Community, whose mission is to provide support and lists of safe foods for patients undergoing RAI. Although the diet and prep were stressful, I was able to eat Oreos, chips, and more thanks to them!

After receiving my RAI, I had to be in isolation for seven days. The amount of isolation time is dependent on the dose you receive. During this time, we leave radioactive fingerprints on everything we touch, and anyone standing within 6 feet of us will be exposed to the radiation. It can be very difficult to stay away from your loved ones at a time when you need all the support you can get. The radiation can concentrate in your salivary glands, causing swelling, pain, and dry mouth. I spent most of the time sleeping, watching TV, and talking to my parents through my door. After isolation, I received a whole body scan to see where the radiation had concentrated. The results showed uptake in my thyroid bed and neck. Even though I’m not at “no evidence of disease” yet, I’m thankful that the radiation went where it needed to go, and is doing what it needs to do. Next year I will have another scan, and the next step in my treatment will be determined then.

Ahna, a thyroid cancer warrior who was diagnosed at the age of 8. Image courtesy of her Facebook support page, which you can find here.

September is not just important for thyroid cancer patients. It is also childhood cancer awareness month. I’d like to share a story about a young girl named Ahna, who I came across in a Facebook support group. Ahna, pictured above, is 11 years old. She was diagnosed with thyroid cancer in 2015 at the age of 8. Her cancer is metastatic like mine, so she went through a similar surgery and radiation treatment. This year, during a diagnostic scan, it was discovered that Ahna’s cancer has returned in at least two lymph nodes. In August, she underwent a second surgery to remove 36 more lymph nodes. In order to do this surgery, her sternocleidomastoid muscle needed to be cut and repaired (which will affect her ability to smile until it fully heals).

These pictures of Ahna were taken 4 weeks apart! Image courtesy of her Facebook support page, which you can find here.

The incidence of thyroid cancer in children is extremely rare. In the United States, only one in every 1,200 children under the age of 20 is diagnosed each year. Unfortunately, childhood cancer research is ridiculously underfunded. According to the St. Baldrick’s Foundation, only a measly 4% of funding from the U.S. federal government is dedicated to research for children.

Despite her difficult battle, Ahna continues to fight, and there is no doubt that she will beat this recurrence. While still recovering from surgery, she has started a new school year and continued with her love of acrobatics and dance. Her resilience has truly inspired me, and I believe it can inspire many others.

You can find instructions on how to perform a neck check at this link, courtesy of ThyCa.

A lot of people are surprised to hear that I have cancer at a young age. Unfortunately, cancer doesn’t discriminate. Thyroid cancer in particular is becoming increasingly common in young individuals, with about two-thirds of all cases being found between ages 20 and 55. It occurs in women almost three times more often than in men. As is the case with all cancers, early detection is extremely important. Luckily, performing a neck check in your mirror at home is easy. You can also ask your doctor to perform a quick check at your yearly physical.

I chose to share our stories to shed light on what the journey of a thyroid cancer patient entails. While our type of thyroid cancer is not deadly, we live with cancer as a chronic, and largely invisible illness. When you look at me, or at Ahna, you can’t see the countless appointments, blood draws, scans, surgeries, and medications that will inevitably be part of our lives forever. Thyroid cancer patients are constantly told that they have the “good” or “easy” cancer. No cancer is “good” cancer.

Every day I feel blessed and grateful to be alive, but this does not diminish the struggle that I face. After my surgery, I gained 30 pounds in six months. I oscillate between insomnia and being so fatigued that I can’t get out of bed. My hair is falling out, my skin is dry, I have joint pain and a sluggish digestive system. I even have a heart condition that was uncovered and aggravated by my thyroid medication. I isolate myself from others, afraid of being brushed off as overdramatic. Tired of the constant “you look fine, other people have it worse.” I’ve had to fire doctors after being told “you’re just depressed” when, in reality, a blood test shows I have vitamin deficiencies and trouble absorbing my thyroid medication.

In spite of this, I am optimistic. I push myself through the bad days, and cherish the good ones. I will not let the cancer run my life, but it has already taught me valuable lessons. It has shown me who my true friends are, and strengthened my relationships. It has taught me how to adapt, and see the grace in life’s struggles. It has given me the strength to live fearlessly — to take chances and never give up. I have cancer, but cancer doesn’t have me.

A photo of me taken a few months after RAI.

If you’d like to learn more about thyroid cancer, please visit ThyCa: Thyroid Cancer Survivor’s Association or the American Cancer Society. For other types of thyroid disease, visit the American Thyroid Association. To follow and support Ahna’s journey, please follow her Facebook support page! To find out more about supporting childhood cancer awareness, check out St. Baldrick’s Foundation and G9: Gold in September.