Jill Gurfinkel, Thyroid Thrivers
42 years young
Thyroid Cancer (Papillary Carcinoma- and Hurthle Cell Carcinoma)
Diagnosed in 2012
Divine Intervention and Thyroid Cancer….
Three years ago, my life changed in what seemed like an instant. I was a healthy, energetic, and driven 39 year old who had never had a thyroid condition. The Spring before my diagnosis, I had experienced a weird weight gain out of nowhere- the scale went up, yet all of my clothes still fit. My eating habits were always healthy, I worked out and was always active. It made no sense. So, I began to workout religiously, like I had always done in the past to shed a few pounds- fairly easily. But this time was different. The harder I tried, the more tired I became and the scale never budged. Eventually, the fatigue became so intense that I distinctly remember feeling like I was walking in molasses and my head was in a complete fog.
Upon my return from a business trip overseas, I had a feeling in the pit of my stomach that something just wasn’t right. In my haste to lose weight, I also managed to throw out my back from working out every day. This turned out to be a blessing in disguise as it was my chiropractor who told me I needed to go get my thyroid checked, because the symptoms I was describing, all seemed to be thyroid related. As soon as he said that, I knew I had to finally listen and go see my doctor. This was on a Friday. I called my doctor’s office right after this appointment, and was initially told that they couldn’t see me for a month. But they happened to receive a cancellation while I was still on the phone…for that Monday.
I like to think it was divine intervention at this point. My father died of pancreatic cancer at 62, and my mom died of breast cancer at 67. I truly believe to this day that they were watching over me and made sure I got to the doctor right away.
When the doctor first saw me, he began explaining away all of my symptoms- blaming my age, my level of stress at work and being recently divorced. You name it- there was another reason for my ailments other than my thyroid. His entire demeanor changed when he finally felt my neck, which apparently had a mass bulging out of it. Don’t ask me how I never realized this before that point, because once he pointed it out, this mass overshadowed everything.
The morning of Rosh Hashanah, I celebrated the Jewish New Year on a cold table in the hospital having my first neck ultrasound. The ultrasound technician could not hide her concern from me when she saw my thyroid light up on the screen. She told me I would probably need a biopsy, but my doctor would call me if there was any reason for concern.
We hadn’t even finished dinner that same day when my doctor’s office called to tell me that I had a mass that needed to be biopsied. When I hung up the phone, my stomach completely sank as I remembered what it was like, when my parents would receive calls like this from their doctors. It was never good news. Weeks later, I was finally able to get in for my biopsies with my new endo. I was told by other thyroid cancer survivors that I should expect to receive some form of anesthetic to numb the area before they perform the fine needle aspiration. I was not so lucky. I had to lie down on a table while the doctor held my head down with one hand, and then proceeded to poke me with 8 needles, one at a time, slowly stabbing my neck trying to get at two separate tumors, that I apparently had. One tumor was very large, so that was an easy target. But, the other was much smaller, buried deeper in my neck, so it took several attempts to try and aspirate. This was as painful as it was terrifying. Although my sister was there to support me, as she has been through this entire ordeal, the look on her face as they performed this procedure was heartbreaking. She tried to be brave, and optimistic, but I knew in my heart that I had thyroid cancer.
My endo called a few days later telling me that the results were inconclusive, and that there was only a 7-10% chance that this would be malignant. I burst out into tears in my office because, now I just needed to know whether I had cancer or not, even though in my heart I already knew. My doctor explained that I would still need to undergo an operation to remove half of my thyroid because of the size of the mass.
He was also quick to tell me that
this would be no big deal and I would just take a pill for the rest of my life.
I only wish he had been right.
Fast forward a few weeks later to my first surgery. They removed the right lobe of my thyroid, sent it off for a full pathology study, and sent me home the same day to recover. This was the week of Thanksgiving so, I got to spend the next five days, including Thanksgiving, petrified to learn of my fate. In the early evening, the Friday after Thanksgiving, I finally received a call from my surgeon who gently told me “Well, your pathology results are not good.” He proceeded to tell me that I had two tumors, each with a different type of thyroid cancer. The smaller tumor was Papillary carcinoma, and the bigger tumor was a very rare form of thyroid cancer called Hurthle Cell Carcinoma. Without any time to cry, freak out or process my diagnosis, I was back on the operating table at 6 am, the following morning, for the removal of the left lobe of my thyroid.
Unfortunately, this surgery did not go as well as the first surgery. While I was very lucky to have clear lymph nodes, I lost a parathyroid gland and ended up with a paralyzed vocal cord and thrush. I could barely breathe without coughing, I couldn’t drink without choking, and I could barely speak louder than a whisper. This may not be a big deal to some, but my entire career is premised upon me having a speaking voice, not to mention being able to breathe and drink fluids. Because I could not clear fluid from my throat, I was informed that I was also now at risk for pneumonia.
Over the next several weeks, I began extensive speech therapy in hopes to jump start my vocal cords and to make breathing much easier. I also had to use Thickit in order to drink any fluids without choking. Yuck! During this time, I also had to go through withdrawal from any thyroid medication, while going on a low iodine diet, to prepare for Radioactive Iodine Ablation, to eradicate any remnant thyroid tissue. This is basically liquid radiation. With every passing day, I became weaker and weaker. My body ached, my brain was clouded and I could barely stay awake more than a few hours at a time.
When I met with the doctor, to discuss Radioactive Iodine, he never once told me that this treatment would also put me at increased risk for secondary cancers, dental issues, salivary and parotid gland issues, among other ailments. He also failed to tell me that Hurthle Cell Carcinoma is not as responsive to Radioactive Iodine, as other forms of thyroid cancer, because there is only a 10-15% chance that Hurthle cells will uptake iodine. Nevertheless, I showed up for treatment completely ignorant to the fact of the double-edged sword this treatment truly was for me. I had heard that it could make me terribly nauseous from other cancer patients, but when I asked my endo, he told me that if I suffered nausea, it was all in my head. Cloaked in protective gear, the nurse had me drink a metallic tasting liquid from a straw out of a lead container. I was then sent home quickly to stay in isolation for the next 5 days. I could not see my son, I could not be with the family I needed for support, and I had to care for myself when all I wanted to do was sleep. I was pretty much bedridden at this point. But by the next day or so, I began to suffer extreme nausea. I had never felt anything like this in my life, and I was terrified of throwing up because I was now radioactive. I tried reaching out to my endo for help, but he did not return my calls. Thankfully, a physician friend of mine came to my rescue and prescribed Zofran. This was the only relief I had for days. I also had a metallic taste in my mouth that tainted the taste of food for weeks. My jaw and cheeks ached, but nothing like it was going to be within a year from that treatment, when I had a stone in my salivary ducts that caused my parotid gland to have recurrent infections called parotitis. This was excruciatingly painful and a direct effect from having RAI. Every time I tried to eat, I had stabbing pain in my jaw and cheeks until finally my cheek blew up like a chipmunk. Now that I do not have a thyroid, infections are much harder for me to fight off, so it took me several rounds of antibiotics for the infection to finally subside. I was then told that if the infection came back, I would have to have my parotid gland removed, which is another nasty procedure, with many other, lovely risks.
The year that followed the removal of my thyroid, was an emotional and physical roller coaster. I had missed 6 weeks of work and had to get back to work, despite the fact that I could barely get up in the mornings. I would wake up every day in a complete fog, barely able to get out of bed. It took everything I had to get up and get dressed in order to go to work. By mid-afternoon, I felt like I had been hit by a truck, my legs started to swell, and I felt like the world was just passing me by. I had become merely a shell of the person I once was. When I tried to discuss my symptoms with my endo, he just shrugged them off and told me that it was not thyroid related. I knew in my heart he was wrong, so I began to learn as much as I could about my new condition. Thankfully, I have had a ton of support to get me through all of the ups and downs that come with having thyroid cancer. I found support groups on Facebook with thyroid patients that shared their knowledge with me, supported me through every step of this journey and also encouraged me to become my own advocate. I finally got the courage to fire my endo, and was very fortunate to begin working with an osteopath who specialized in functional medicine. He took my symptoms and family history seriously, and we spent the next two years addressing a host of deficiencies that I had, from low vitamin D, B12, calcium, as well as cortisol and sex hormone imbalances. I also learned I have the MTHFR gene mutation, that I needed to address, before it caused more problems for me. My new doctor also taught me how nutrition played a key role in how I felt, and now that I don’t have a thyroid, there are certain foods I really needed to cut back on or avoid, altogether. Things like sugar, soy and gluten were now in my everyday nutrition vocabulary. I also had to start eating more protein than I ever imagined a reasonable human being could eat. My doctor and I worked together to keep experimenting, until we found an optimal dose of hormone replacement to make me functional again, which for me was a combination of Nature-throid and Cytomel. I was determined to get my life back, even if that meant daily injections, 40 pills a day, routine scans, bloodwork every 3-6 months- whatever it took, I did it.
My one year anniversary from treatment, was marked with hiring a new endo and going back on a low iodine diet to prepare for my whole body scan. This time, because I was so sick from going through withdrawal, to prepare for treatment, I was able to have thyrogen injections so, I could still take my thyroid meds. At $2000 an injection, this came at a heavy price. The first time they performed the scan, my radio-oncologist saw a spot on my mediastinum. I had to come back later that day, to repeat the test, and thankfully was told I was clear. To say that this was a stressful process would be a monumental understatement.
Now, three years after my journey with thyroid cancer first began, I finally feel like myself again. Sure, I have days where I need to rest, I don’t bounce back as quickly from being sick as I used to, and I still lose my voice when I am stressed or too tired. I even have days where I am reduced to tears in fear that my thyroid cancer will come back. But, when I look back at where I started, I realize just how far I’ve come. I remind myself daily, of all that I have to be grateful for: my cancer marker (thyroglobulin) has been undetectable, I am able to live a full life, and I have been able to help other patients through the Thyroid Survivor Network. The numerous thyroid cancer patients that I have had the honor of meeting along my journey, have truly inspired me to speak out and help paint a more accurate picture of what life with thyroid cancer is truly like. I am determined to educate others, so that we can stop perpetuating the myth that thyroid cancer is somehow easy or less deserving of funding or compassion.
No cancer patient should be told that they are lucky to have an “easy cancer.” Trust me, thyroid cancer is as life-changing, life-altering and scary as any other cancer, and needs to be taken seriously.
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