A Personal Experience With Thyroid Cancer
How It All Began
When I turned 36 years old in August 2002, I was in perfect health—or at least I thought I was. My energy level was high, I was working out regularly, I was at my lowest weight in 10 years and I was eating healthy. I had never broken a bone and had never spent a night in a hospital. I thought I was invincible!
I had been seeing the same primary care physician for close to ten years. My mother had continually raved about one of her doctors, so for a change I went to see her instead in October 2002. During a routine exam, she discovered a lump.
The lump was in my neck, on my thyroid gland. I always knew I had a thyroid gland, but I didn’t know where it was or what it did. I quickly became an expert.
The thyroid gland is a butterfly-shaped gland that wraps around the front part of your windpipe, just below the Adam’s apple. It produces hormones that influence essentially every organ, tissue and cell in the body. Thyroid hormones regulate the body’s metabolism and organ function, affecting heart rate, cholesterol level, body weight, memory and many other conditions. It’s one important gland!
I was quickly referred to an endocrinologist, otherwise known as a “thyroid guy." He confirmed the existence of the lump (formally called a nodule) and arranged for a needle biopsy. He explained that the lump was either benign or cancerous. A few weeks later I had the biopsy; they extracted several tissue samples from my thyroid gland and sent them in for testing.
I Have Cancer
I drove to the endocrinologist’s office a week later to get the biopsy results. Because I was feeling great and had never had any serious medical problems, I assumed that the lump was benign. It wasn’t.
The doctor explained that the lump was “suspicious” for Papillary Cancer (the most common thyroid type). Suspicious meant there was a 99% chance that it was cancerous. Until they remove the tissue from your body, they can’t state the findings with 100% accuracy. He said simply, “Your thyroid gland must be removed."
He also shared that since the cancer was detected in my 30s and that the lump was being removed quickly, the chances of survival were close to 100%. I soon learned that thyroid cancer is one of the most curable cancer types.
In addition to having my thyroid gland removed, I discovered that I would also have to take medication for the rest of my life. Synthetic Thyroid Hormone pills, taken daily, would replace the natural thyroid hormones. I immediately asked the question that all women would ask, “Will I gain any weight?” I was relieved to find out that I would not.
I jumped on the Internet to find out everything I could about thyroid cancer. I learned that 13 million Americans and one of eight women have a thyroid disorder. Many of these disorders go undetected and untreated. Many famous people including Tipper Gore, Rod Stewart and Kim Alexis have had thyroid nodules removed. The movie critic, Roger Ebert, was a recent thyroid cancer survivor. I was not alone.
We scheduled the thyroidectomy (complete removal of the thyroid gland) surgery for the end of January 2003. The operation would take close to two hours, I would have to remain in the hospital for one night. After that, I would need help recovering for the next eight to ten days. Total recuperation time could take up to three weeks.
As the date grew closer, I became more and more anxious. I had never had surgery, never been under anesthesia and never stayed in a hospital overnight. Would it be like what you see on television?
I arrived at the hospital at 6:30 a.m. with no makeup, no contact lenses and no jewelry, as per instruction. I was told to remove all of my clothing and put on a “johnny” and a cap to cover my hair. I looked like a supermodel…not. My family soon came in to wish me well, then retired to the waiting area. 30 minutes later I was wheeled into the operating room. I was then given something through an IV to “take the edge off” and was unconscious within seconds. The next thing I knew, I was waking up in the Recovery Room. A nice nurse talked to me, gave me some water and my family stopped in to say hello. I don’t remember much as I was pretty out of it.
Soon I was wheeled into a hospital room, my quarters for the evening. It looked just as you’d expect, barren with some assorted medical equipment, and I had a roommate separated by a thin curtain. I spent the next 15 hours, sleeping, taking medication, drinking water and eating the most popular hospital food- Jell-O!
My mother drove me to her house, where I would stay for the next two weeks. The first few days, my neck was immobile and I was very tired. I began taking the synthetic thyroid hormone pills. Within a week, my energy began to return and I was able to partially move my neck. When my sense of humor re-emerged, I knew that I was getting better.
My recovery went well, and two weeks after the operation I met with my Thyroid Guy to “check in” and find out the results of the pathology report on the removed thyroid tissue. I quickly learned that I had cancer, with 100% certainty. The good news was, my cancerous thyroid gland had been removed. The bad news was, since it was definitely cancer, I now had to undergo a Radioactive Iodine Treatment to kill any remaining cancerous cells in my body. Radioactive iodine has been used for more than 40 years to treat thyroid cancer.
In summary, this treatment requires a patient to ingest radioactive iodine pills then undergo special scanning to confirm that most of the remaining thyroid cells have been eliminated. As the iodine is radioactive, patients must be placed in isolation for three days to minimize radioactive exposure to others. The next seven days, patients are no longer isolated, but have to stay six feet away from other people. Side effects can include sore throat, nausea and headaches.
In preparation for this process, recipients must follow a special low iodine diet for two to four weeks. The diet has many restrictions including no dairy products, no restaurant food, no fish and no canned food. Allowable serving sizes of meat and grains are minimal. The purpose of this diet is to deplete the body of its natural stores of iodine to help make the radioactive iodine treatment more effective. The premise is that when the radioactive iodine is administered, the thyroid cells will “suck” up the iodine because it has been so depleted. In my case, I also had to stop taking the synthetic thyroid hormone for a month prior to the treatment. This was of concern, as the side effects could include exhaustion and weight gain.
Going Back to Work
When I had fully recovered from the surgery, I went back to work full time. It felt good to be interacting with people and using my brain for more important things than choosing what DVD to rent. I was pleasantly surprised at how supportive my coworkers were. I had received many cards and emails while I was out. Now, many came to visit my office and check in. It was, quite simply, nice.
I also felt like a different person in some ways. This experience was changing me a little. I found myself reacting differently to situations. In some cases, I used a softer approach. In others, I noticed that I expressed my feelings more openly.
After two weeks, it was time to go off of my synthetic thyroid hormone and on to my diet.
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Diet and Energy Level
Don’t hate me, but this is the first diet I’ve ever had to go on. Most of my adult life I’ve limited my intake of junk food and tried to eat healthy, but never had to count servings and sizes. I’ve never had to completely stop eating certain foods. The first few days were a breeze. I said to myself and others, “I can do this!”
As time went on, I found that I was hungry all the time. Is this what the participants on the reality show “Survivor” feel like? Five ounces of protein for an entire day doesn’t go far. I missed eating desserts. Although vegetables were unlimited, how much broccoli can one gal eat? The good news was- I began to cook… a lot. I made tomato sauce from scratch. I baked muffins. I sautéed chicken. I started to enjoy cooking. I also bought and began using a juicer to drink my veggies and fruit, as I couldn’t eat much more.
Being single on this diet posed an interesting dilemma. Most dates include lunch or dinner at a restaurant and I couldn’t do either. I did end up improvising and cooking for someone early in the dating process. (That’s usually saved for date 8 or 10.) He seemed to appreciate it.
By week three my lack of thyroid hormone partnered with the limiting diet began to effect me. I hadn’t gained any weight and didn’t have headaches but my energy level was dropping daily. I had to reduce my work hours to part-time. I couldn’t make it to the gym. Cooking started to seem overwhelming and my family stepped in to help out. Special thanks to the person who invented Tupperware and microwaves.
Although I was feeling pretty lousy I knew that the next week I could go off the diet and back on the synthetic hormone. I could visualize my Ben and Jerry’s ice cream and Chinese food. I was excited at the thought of my energy level returning. I also had my sister’s baby shower on Sunday, March 9, 2003, to look forward to. This was the first baby of the family and something positive to celebrate. On Sunday, I “showered with Sis” and the following Tuesday, I showered in preparation for my Radioactive Iodine Treatment.
It was a rainy Tuesday morning when I drove to a local hospital to ingest my radioactive pills. When I arrived, I expected to see a bunch of men in white space suits carrying a heavily guarded container of radioactive material. Instead, my doctor greeted me in a pair of latex gloves. He carefully removed the iodine pills from a special bag, placed them in a plastic cup and instructed me to swallow them immediately. I followed his instructions. (The space suits would have added some drama to the experience.)
He then said everything would be fine as long as I didn’t vomit. That would expose the radiation to whatever the liquid touched. Knowing that I couldn’t vomit, I spent the next 20 minutes worrying that I would! Luckily, I did not. I made it home with no incidence.
As I live alone and am self sufficient, I was given permission to stay in isolation at home, instead of a hospital room. This was a great relief. I could read my email. I could watch HBO. I could lead a normal, but radioactive life. There were many instructions to follow, but I was happy to be at home.
The first few days were pretty uneventful and I had no side effects. I was finally able to go off my diet and happily ate Chinese food and my Ben & Jerry’s. I followed that with pizza and various junk foods. I had a continuous craving for chocolate, which I happily satisfied.
After about six days, the reality of isolation started to set it. Although I could have some visitors (that had to stay six feet away from me), I could not leave my condo. I cleaned, organized, read and watched television. But, I began to go stir crazy. I began to feel depressed. I had too much time on my hands to think. Food also started to taste strange, a common side effect.
As you can probably figure out, what goes in must come out. After ingesting the pills, I was advised to drink lots of liquids. Like a good patient, I followed this instruction. The key word was flush. Everything had to be flushed, not once but twice. I flushed a lot! I built a special bond with my toilet handle.
When I was about to go completely off my rocker, the ten days ended. I couldn’t wait to be out, about and even go back to work. I couldn’t wait to drive my car. Embarrassingly, the first place I drove to was McDonald’s…. a girl has to have her French fries.
Back to Life, Back to Reality
When I returned to work, I found that I was particularly stimulated by the tasks at hand, the projects I was leading and the problems I had to solve. Prior to the surgery, I had begun to feel a little restless at work. Now, I felt fully engaged. Either the work changed or I had.
I attempted to fill in my social calendar, to make up for lost time. Now that I could go out, I wanted to. I had enough alone time. I spent the next few weekends ”out on the town”.
Any food left in my pantry related to my special diet, was tossed. I didn’t want any reminders around. If I never see a raisin again, I won’t mind. Admittedly, I also stopped cooking. Now that I didn’t have to, I seemed to have no desire to do so. I hope the motivation comes back at some point.
I had a few blood tests to determine how my synthetic thyroid medication was working. Luckily, everything appeared to be moving along as expected.
Three months after my surgery, and one month after the Iodine Treatment, I was informed that my “tumor marker” was undetectable. In layman’s terms, it appeared that the cancer was likely gone. My Thyroid Guy said I should be very happy with these results. I would need a blood test in three months to check the tumor marker again. Overall, I felt relieved.
Five Years Later
Since the surgery in 2003, I have continued routine visits with my Thyroid Guy and have had follow up scans and ultrasounds. Most importantly, the cancer has not returned but there have been some challenges in regulating the strength of my synthetic thyroid medication. If your levels are too low, the cancer can make its way back and you can feel tired or depressed. If the levels are too high, you can induce other health or medical issues. About once a year, we’ve made tweaks in my medication levels.
The scar on my neck from the surgery, which was very red for the first year has almost completely faded. I’ve been religious about applying sunscreen and it’s paid off. The skin tightness and warmth around my neck, similar to a Hot Flash feeling, I experienced for the first two years after surgery are also completely gone.
Although the cancer has vanished, my recollection of this entire experience remains etched in my brain. It was very stressful at times and it was also one of those experiences that reminds you that you’re mortal, that “life is short” and you need to live in the moment. As a Type A planner type, this was a helpful infusion. It has changed me and the way I look at life.. in a very positive way.
It has now been more than 10 years since my surgery. The scar is almost invisible, the cancer has not returned, and I am healthy, energetic and happy. I still take my thyroid meds daily, and will need to do so for the rest of my life.
You and Your Thyroid
Thyroid diseases are extremely common but often go undetected. Symptoms may be subtle, diagnosis can be tricky and thyroid diseases can mimic many other disorders. Common symptoms of thyroid problems include weight gain, fatigue, nervousness and sleeplessness. Studies have shown that of the more than 15 million Americans suffering from thyroid disorders, more than half remain undiagnosed. For more information on thyroid disorders visit the American Cancer Society's page about thyroid cancer.
Links About Thyroid Conditions
- National Cancer Institute
Information about thyroid cancer treatment, clinical trials, research, and other topics from the National Cancer Institute.
Easy to understand description of papillary, follicular, medullary, and anaplastic thyroid cancer. Symptoms, diagnosis, and complete treatment options are discussed using actual patient x-rays. The role of radioactive iodine and surgery.
A top thyroid website.