Diagnosed, Not Defeated

As a result of what I went through and my never-ending passion for helping others, I believe that my diagnosis happened for a reason – to lead me to a career in patient advocacy.
BY Carly Flumer
PUBLISHED May 22, 2019
I never felt any symptoms. I mean, I was tired but what young 20-something who had just started graduate school while maintaining a full-time job wouldn’t be? It happened during a physical. My doctor felt a lump towards the top of my throat.

“I would go and have that scanned,” he said. I wasn’t worried; he had never mentioned cancer. So, I went and had the ultrasound. “Well, we see what your doctor was talking about, and it appears to just be a cyst,” the doctor said, “but there’s another spot on the right side of your thyroid. You have two options. You can wait to see if the spot grows or we can perform a biopsy to see if it’s cancer,” he explained. “Now, the chance of it being cancer is anywhere between 10-15 %, a very, very low chance,” he reassured me.

“I want the biopsy,” I said, not wanting to take any chances. The biopsy was performed, and within minutes, the doctor returned saying he had bad news. “Unfortunately, it’s cancer, but the good news is that it’s very treatable. I recommend you having surgery.” And that was it; although, it hadn’t hit me, at least not as hard as I thought it should have – at least not immediately. I went to my car, called my mom, and asked her if she was sitting down. I told her the news, still shocked by the ordeal I was just handed. In an instant, my life had changed forever. I heard those three words no one ever wants to hear, “You have cancer.”

I wasn’t sure how to proceed. How advanced is my cancer? What doctor(s) do I go to? How quickly do I need surgery? I just started school – do I need to drop-out already? What about my job? All of these thoughts raced through my mind. However, the support of my family and luckily, not having any symptoms, kept me going. I was working in a hospital at the time, and I spoke with a few of the doctors I worked with. “Oh, the good type of cancer. You’ll be just fine,” one said. “‘Good type?’” I thought. What is good about having cancer? He gave me the name of a surgeon who specialized in thyroidectomies. It was a five-month wait to get in.

When I eventually saw my surgeon, he gave me two options. The first, he explained, was a partial thyroidectomy. “We’ll only remove the lobe of the thyroid where your tumor is. The benefit of that is that the other lobe will continue producing enough of the hormones that your body needs so you don’t have to take a medication for the rest of your life. The second was a total thyroidectomy, rendering me to that medication, literally, for a lifetime. I went with the former and had a successful surgery. Of course, it didn’t end there.

Two days after my surgery, my doctor called. “We performed pathology on some of the lymph nodes that we removed from your neck, and unfortunately, almost all of them had cancer. What this means is that we need to have you come back and perform another surgery to remove the rest of your thyroid. Then after, you’ll have to undergo radioactive iodine to rid your body of any residual thyroid tissue.” My heart sank. My world was crushed yet again. Another surgery? What was radioactive iodine? I didn’t how to process the emotions that I was feeling as tears streamed down my face. “It never ends,” I thought.

After my second surgery, I was thyroid-free. Later, I went through the radioactive iodine procedure where I had to follow a specific diet for approximately three weeks. I could consume very little to no iodine, or salt, which was essentially in every product. As I went up and down the grocery store aisles reading every nutrition label, I found myself frustrated finding almost nothing that I could eat. Don’t get me wrong, this was a very healthy diet, as I was essentially restricted to meats (without seasonings), fruits, and vegetables. But it wasn’t my favorite.

I went to a nuclear medicine center where I consumed a pill that would make me radioactive. I was to stay physically away from people for approximately one week, slowly decreasing the amount of feet I could be within others as each day passed. I then had a whole-body scan that showed that the cancer hadn’t spread, or metastasized, to any other place in my body, but there was still some residual thyroid tissue that the radioactivity would hopefully kill.

The journey continued. I would need to be on a medication for the rest of my life. I would need to see a specialist, an endocrinologist, for the rest of my life. They would decide the dosage of my medication based on a variety of factors, including how I was feeling emotionally and physically. It wasn’t until after I had my thyroid removed that I realized how much it does for our bodies. “It will take some time before we find the right dosage for you,” my endocrinologist explained. In other words, sometimes I would be hyperthyroid, other times, hypothyroid. My symptoms may be all over the place, including my metabolism rate, my body temperature and even my mood. As a patient with chronic depression and anxiety, I could only hope that the “right” dosage would be found quickly.

Fast forward two years after my diagnosis, and I have been deemed “cancer-free,” with no more thyroid tissue. While I am incredibly thankful for this result, I can’t help but feel survivor’s guilt. I often think, “Why me? Why did I get to survive and others don’t? How did I get by so easily?” Despite this guilt, I have used my cancer diagnosis and journey to become stronger both mentally and emotionally. I have unashamedly shared images on social media and written stories that have been published in the hopes to inspire others and to be an advocate for those who don’t feel like they have a voice. Yet, I don’t pretend to know everything. I still have questions that remain unanswered. How likely is my cancer to come back? Why do I keep losing so much hair? Why am I always so tired? Despite having the “good” type of cancer, there is nothing that great about it. Although I never had symptoms, I still went through two surgeries and a radioactive iodine procedure, which had its own side effects.

As a result of what I went through and my never-ending passion for helping others, I believe that my diagnosis happened for a reason – to lead me to a career in patient advocacy. I have a background in health administration, policy and communication. I have worked at doctor’s offices and hospitals. I feel I had an advantage in having the knowledge that I have and access to physicians. However, I still get confused when I ask my doctor a question, and I receive an answer that’s in medical jargon. I think, “I can’t be the only one who feels lost, who feels confused.” Plus, I know that there are patients who are going through worse situations than I did.

There has to be a way to mend the physician-patient relationship that is currently suffering. There’s not enough time dedicated to each patient to hear what they’re going through each day. Physicians also need to make sure that what they’re saying/explaining makes sense to the patient, especially when it comes to taking medication(s), as patients with chronic conditions usually have many prescriptions which can be hard to keep track of. There are solutions coming to the forefront, such as pill packs, patient portals and support groups. But I believe this is just the beginning. Every cancer is different. No two patients are the same – indifference is ignorance. It’s time to combine research, health literacy and ultimately compassion for a patient’s story to provide the best care and create better health outcomes.
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