I really didn’t know how I would start out this blog. I like to write and have been in the education profession for over 15 years, most recently as a reading specialist. It has changed. My life has changed and I am currently stuck. I will now begin to tell you my story of how I was diagnosed with papillary thyroid carcinoma (cancer) in January of 2009.
I was a reading specialist for a large school district in the Chicago area. My room/office was on the second floor of the K-5th grade school where I taught children who were struggling with reading, etc. I realized I couldn’t catch my breath one day in the afternoon when I was walking up to my room, and mentioned it out loud to another classroom teacher as I went into my classroom. I remember thinking about my mitral valve prolapse that I was never put on medicine for and thought, “It has to be acting up!”
I also noticed a change in my daily functioning. I was so tired in the morning that I had to pull myself out of bed every day for work. Also, I had a metallic taste at times that I thought was from a zinc lozenge I would take to ward off colds. So, after all of these thoughts, I called my doctor. He had told me to go to the ER and get checked by a doctor there. That was the beginning. So I went and didn’t expect any of this to happen since my yearly wellness screening at work had already checked my thyroid levels. They were ALWAYS normal.
After getting lab work and a CT scan of my lungs/chest, the scan went up to my thyroid gland. The doctor said that it showed I had some nodules on it and I needed to follow up with an Ear Nose and Throat Physician. My thyroid labs were normal. My TSH level was normal. But I felt like crap. I scheduled my appointment and waited to see her. I immediately had a biopsy scheduled. The largest nodule was 1.5 cm and I also had many even smaller nodules biopsied. It was not fun at all and I went alone. I will never do that again. It all happened so fast and I was away from family, etc. I kind of had the feeling with so many biopsies that it was not going to be a good outcome.
After the biopsies, my doctor told me the news that I had papillary thyroid carcinoma and needed a complete thyroidectomy. I was diagnosed in January of 2009 and had my first surgery scheduled for the beginning of March of that year. After the surgery, I was told that I was at Stage 3 and my entire thyroid was positive for cancer. I had tiny cancerous nodules, etc. on top of the largest at 1.5 cm, throughout my entire thyroid gland. I did not have any lymph nodes removed, but had two of my four parathyroid glands removed during the surgery.
I went on a recovery journey that was a combination of a “jumpy,” thyroid hormone-induced “fighter” mode. I had found out I had lost my job the day after I came home from my first surgery and was still fighting the district with the teachers’ union and trying to get my job back even though I was still a non-tenured teacher. I remember trying to go into the second surgery with a migraine. That was not good. I was doing everything by myself and I did accomplish it ALL (except for that migraine). I had trouble with my thyroglobulin blood level and other TSH and related thyroid hormone levels. I was preparing for RAI (radioactive iodine), but had to stop due to a PET scan, various thyroid tests and ultrasounds finding that I had neoplasm of the thyroid bed along my laryngeal nerve. I had to prepare for a second surgery in June. I did go to two other hospitals in the Chicago area for opinions. I ended up at the University of Chicago for the second surgery.
My second surgery came with complications. Since the cancer was along my laryngeal nerve, I later found out after the surgery, which was very painful, that I had paralysis of my left vocal cord. I needed to go to a specialist to get my voice back to normal. I had trouble breathing and catching my breath. I was very hoarse and couldn’t talk for long with one vocal cord because I would get winded and it was too tiring. Anything cold or hot felt good on my throat/vocal cords. It took about six months for voice therapy. I still have my days of hoarseness and voice problems that just happen. I figure that I may just need to deal with that for a while.
After that surgery, I had RAI (radioactive iodine) I-131 at the end of July. It seemed very quick after this painful surgery in June. I stayed overnight at the hospital and then drove myself home the following day. I was single and had no children so I didn’t need a hotel room, etc. But, I don’t feel that the RAI helped at all. It gradually wore me out as the months seemed to pass. After the RAI, my thyroid levels on the thyroid hormone replacement medication, Synthroid, seemed to be okay on 112 mcg. I kept up with the usual lab work, ultrasounds, scans, etc. TheLow Iodine Diet and Thyrogen shots throughout the testing and treatment were rough, but I remained tough and in “battle mode.”
In January 2010, I felt a nodule near the left of my collarbone. I did have it biopsied after a thyroid ultrasound and lab work came back with a higher thyroglobulin level than normal. It was positive for papillary carcinoma again and had recurred in my lymph nodes around the left side of my neck up to my ear. I went to another hospital for this third surgery of a neck dissection. That one lymph node was one of about 25 that were mostly positive for cancer. I did have some that were negative, but that is why I feel that I may be treatment-resistant for RAI because I had just had it in July.
My surgeon at Loyola Medical Center was wonderful. I had the drains, which are left in your wound to prevent fluid accumulation, and recovery was longer than the others. Part of my salivary gland was removed and you really wouldn’t even know it. I get swollen at times, but I deal with it. I also cannot feel part of my neck due to the nerves that were near my lymph nodes. My scar looks like a backwards “J” and is very clean and neat after healing. I had a special vocal cord instrument placed while I had this last surgery because of my vocal cord paralysis. My vocal cords were fine after this surgery. I thank my surgeon and current endocrinologist for their good work. I ended up not needing RAI again after this surgery because my levels were good. I believe my attitude and faith played a tremendous role in my battle. I was given the “no evidence of disease” on January 27, 2011. I will never forget that day. No one forgets that day.
Since then, I have still been on Synthroid at 112 mcg. My endocrinologist wants me to have a suppressed TSH on the Synthroid due to my recurrence of the cancer. I have not felt good on Synthroid alone as my symptoms seem to be fluctuating between hypo and hyper and I don’t feel like myself. Mostly, my mood, temperature and fatigue are the problems. Currently, my TSH is two points lower than it should be and I need to have the full labs in October.
It is very difficult for some people to understand how great a role the thyroid gland plays in your body. People may think you’re acting “crazy” and it’s not true. Your mind and body are affected. I asked about Cytomel at my last six-month check-up. But my heart rate was up and she would not give it to me to supplement my current medication. That was new to me, and not normal. I am happy to say that it is good now. I have also started eating gluten-free. Not all the time, but most of the time. I am not sure if it is affecting me in any way. I just thought the research looked good along with exercise for thyroid cancer survivors/hypothyroidism. I will keep you posted.