So how did I get here? It all started when I went in for a full physical last fall (2009) - I just turned 40 and I decided I needed to get a full check up since I had not had one in a couple of years.
Everything was going well until my doc asked me "What is that?... how long have you had that?" while she was examining my neck. I told her I probably had it for at least a year, that I thought it was just a roll of fat on my neck (since I had recently put on a lot of weight). She said my thyroid was the wrong size. I was scheduled for an ultrasound a month later. After my ultrasound, my doctor's office called to let me know that I had a "left thyroid mass" and I was being referred to an Endocrinologist.
In February of this year (2010), the Endocrinologist evaluated my thyroid lump. He said it was a goiter and that there is a 5% chance of it being cancer. He did a fine needle aspiration (FNA) biopsy. He was only able to make three passes with the needle, but he said it was enough to send to pathology for analysis. He told me I may have a bruise for a day or two, but if anyone asks me about it, he said to tell them to mind their own business. Interesting advice. The results of my biopsy were inconclusive, but he recommended that it be removed so that cancer could be ruled out. I was referred to an Ear, Nose, Throat (ENT) surgeon.
A month later, in the ENT's office I was told that I had a 'Hurthle Cell neoplasm' which had a 20-30% chance of being cancer. I was a bit confused - how did my chance for cancer increase from 5% to possibly 30% in less than 5 minutes? I was floored since cancer runs in both sides of my parents' families. Both of my grandmothers died from cancer; two of my dad's siblings died from cancer. None of them had the same kind of cancer, but cancer is cancer. I cried for the remainder of the consult. Although he never said I had cancer (all he said was that my left thyroid lobe needed to be removed), he gave me his version of the thyroid cancer story. He said it was the best cancer to have because it is easily treated with surgery and radiation iodine treatment, then thyroid hormone replacement (such as Synthroid). I told him I needed some time to think about having the surgery. Thank goodness I brought my mom with me to this appointment.
My cancer fears went into overdrive later that day after I Google'd "Hurthle cell neoplasm." I found out that there is no way to tell if it is cancer or not before the lobectomy, and that if it is cancer, it is an aggressive cancer that does not necessarily take up the radiation iodine treatment. Lovely. Who signed me up for that?!?, and how can I get off that list?!?
I decided to get a second opinion - another FNA done outside of my current medical group. Once I made my second opinion appt (April 15), I decided to also make my surgery appt which was set for May 3. My second opinion doc did things a little differently, but she was thorough. She did the ultrasound and a biopsy; she was able to make six passes with the needle, going in at six different angles. She put a little bandage over the area she biopsied so I felt like I had a little 'biopsy badge.' The bruise this time was more noticeable, but I now felt a little more comfortable talking to people about it, but I still couldn't talk to people at work about it.
A week later, I got the news. The same diagnosis with the same recommendation of thyroid lobectomy. Good thing I had my surgery date already set. Nevertheless, I wanted to know what her ENT would say about the procedure. I was cutting it close, but I saw her ENT the day before my pre-op appt for my surgery that was to happen the following week. The second ENT's technique was quite different from the first. He said he would make an incision on the left side of my neck the size of my left lobe and remove it whereas the first ENT would make a 'necklace' incision at the bottom of my neck. If the diagnosis was cancer, both surgeons would use the same incision to go back in and remove the rest of my thyroid (right lobe).
The following week I had my left thyroid lobe removed. The surgery went well. My ENT told my mom afterward that he didn't think it was cancer. But sadly, at my post-op appt the following Tuesday, May 11, I was told that it was indeed cancer, Hurthle cell carcinoma (3.2cm). The rest of my thyroid needed to be removed. Wow. Why me? I didn't cry this time. I didn't need a second opinion. I just calmly asked how soon he could go back in and take care of it. Luckily he had a cancellation the following week, so my second surgery was set for May 17.
Once again, the surgery went well. I already knew what to expect after the surgery - a very sore neck, discomfort talking and swallowing food for a day or two. What I didn't count on was blood oozing from the drain site, which was not even an issue the first time around. I was discharged later than usual the next day so the on-call ENT could check it. The next morning (Wednesday) I went to UrgentCare because it was oozing more than it was the day before. They were able to cauterize it, but instructed me to change the dressing daily until my post-op appt the following Tuesday. Great. Just what I needed, something other than the giant scar on my neck to draw even more attention to myself.
My follow up appt with my Endo was the next day, on Thursday, May 20. He informed me that they found a different kind of thyroid cancer on my right lobe - three small Papillary carcinoma nodules (the largest at 1mm). Could my week get any better?!? Well, it definitely could not get any worse after hearing that I had two types of thyroid cancer hanging out in my thyroid. Thank goodness I had the surgeries and they found the cancers before it moved beyond my thyroid. Treatment for both is the same - thyroidectomy, radiation iodine treatment, thyroid hormone replacement therapy. Despite the fact that Hurthle cells don't generally take up the radioactive iodine, it is still part of the treatment plan.
So what is next? I was put on Cytomel the day after my second surgery. After four weeks of Cytomel, I have to stop taking it, and at the same time start a two week long low-iodine diet to prepare for my radiation treatment. On June 29, if my TSH levels come back at 30 or higher, my radiation iodine treatment will occur between June 30 and July 2. I will probably be kept for a day or two in isolation at the hospital so I don't contaminate anyone with radiation. When I am allowed to return home, I will still need to restrict my contact with people and pets for at least five days. Not looking like I'm going to have a fun 4th of July this year, but I should be able to watch fireworks, alone in the dark.
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