My Thyroid Cancer Experience
Early this year I noticed a lump in my neck while shaving; it didn’t hurt, and didn’t cause any problems so I did what I do best- I ignored it. As time went on, I realized I probably should have it looked at, and even started to make the connection that my occasional swallowing issues were probably related to it. For a while I swore it had gotten smaller, and for a month or more it seemed to be no issue at all. Then one day I noticed it more so than ever.
Finally it was June and time for my yearly physical with my primary care doctor. I mentioned it to him, and he felt it and poked and looked in my throat. He told me I should get a CT scan of my neck, and also referred me to an Ear/Nose/Throat doctor (Otolaryngologist). The scan showed a nodule on my right thyroid gland that, because of its size definitely needed to be biopsied. The ENT doctors had me go and get an ultrasound biopsy in mid-July, which came back inconclusive, meaning not enough evidence to rule out cancer but no direct evidence I had cancer either. The only option in such a case is to have the half of the thyroid that is affected surgically removed.
Now remember, I had been aware of this lump for over seven months by this point. Not even all of my tremendous skills in ignoring important issues in my life had succeeded in totally wiping this from by mind. I had done all kinds of internet searches: about throat problems, thyroid conditions, surgical scars, treatments, percentages. And of course my vanity kept focusing on the idea of a scar on my neck, made worse by all the worst case scenario pictures people had posted online. Luckily, I finally came across a blog started by a young man who had a very similar case as mine, and he had created a very comprehensive blog called Thyroid Cancer Blog, which outlines every step in his own journey and treatment, periodic photos of his scar healing and links to other resources. Another thing that eased my mind was the surgeon’s nurse telling me that my doctor was very good at hiding scars and that if I wasn’t satisfied with the way it healed there were other steps that could be taken down the road.
I was put even further at ease before my surgery when I met with an endocrinologist, who would monitor me in case I needed thyroid hormones or other treatments. She took a good amount of time explaining all of the possible scenarios and treatment options. In potentially serious medical situations, it is odd how calming simply having a lot of information can be.
August 1st I had the right half of my thyroid removed, and was home by late afternoon. The pain medicine made me groggy and sleepy, but otherwise I felt fine. The scar, which had been the focus of my earlier thoughts, turned out to be very minor and was starting to heal up very nicely. A week later I went back to the surgeon’s office for a follow up and learned that the nodule had come back as positive for cancer, specifically the follicular variant of papillary thyroid cancer. This necessitated having the other half of my thyroid gland removed, to ensure the cancer had not spread and to prevent further recurrence. This would mean taking lifetime thyroid hormone pills and regular follow-ups with the endocrinologist. I had the second surgery on August 19, and required a routine overnight stay in the hospital. For the second surgery I took no prescription pain pills (just a couple doses of regular Tylenol for a slight headache) and was home the next day. I was in a good mood the whole time, and everyone kept commenting on how well I was doing, the surgeon’s resident saying I was indestructible.
At the follow-up with my endocrinologist a couple weeks I later, she recommended I have a follow-up treatment of radioactive iodine that would kill off most of the remaining thyroid cells in my body to help prevent recurrence of the cancer. The preparation for this proved to be the most difficult and trying part of the whole thyroid cancer journey. Two weeks without any thyroid hormone pills and a week of a low iodine diet.
Radioactive Iodine Treatment:
This taught me exactly what the thyroid’s main job is: regulating energy, metabolism and moods. The first week of being off the hormones went by fairly easily, although I found myself needing a nap most days and a slight bit of puffiness around my eyes. The second week found me much more tired and much more moody.
The low iodine diet required me to skip all vitamins/supplements with iodine, dairy products, all seafood/ products from the sea, sea salt/iodized salt, and to limit soy products and meat. This included any restaurant or packaged meal or product that might have an ingredient with iodine in it. Luckily by the end of the week the extremely low thyroid hormone levels in my body (hypothyroid) had decreased my appetite somewhat.
The radioactive iodine procedure itself took place at the hospital’s seriously named Nuclear Medicine department. I went on a Tuesday morning and was given a gray capsule; the capsule contained a small dose of radioactive iodine. Thyroid cells are the only tissue in your body that absorbs iodine, and made lowly radioactive can be noticed a scanner. I came back two days later, on Thursday morning, and had a whole body scan that picked up the thyroid cells remaining in my body. They were all in my throat area. I came back Thursday afternoon after lunch and was given another gray capsule with a higher dose of radioactive iodine. Immediately I was taken into the next room by the radiation officer and measured with a Geiger counter that read 11 at 1 meter. I was told to walk home and remain isolated from everyone for 24 hours, taking special precautions not to come into contact with pregnant women and small children. After the initial 24 hours were up, I was allowed to return to work and regular activities as long as I was careful; I had to imagine I had a bad cold and avoid close contact or sharing food, utensils, or towels with people for 5 days. I had to sleep alone for the 5 days as well.
Luckily my partner and I have a second home in the country he was able to go to for the five days to make our living arrangements less complicated. So the week passed by, I felt/saw/noticed no changes in myself but followed the directions given me to the letter. After the first 24 hours were over I was able to stop my dietary restrictions, and I celebrated by ordering pizza and drinking a large glass of milk (I had been craving dairy). After 48 hours, I was able to start taking Synthroid, the synthetic thyroid hormone I will be on for the rest of my life.
A week later, I went back to Nuclear Medicine for another whole body scan, with the machine set more sensitively to match the dose of radioactive iodine I was given. It showed only radioactive iodine uptake in the throat area, and the doctor said it was conclusive evidence the cancer had not spread. I would come back in a year for a follow up scan to see how well the radioactive iodine treatment had worked at destroying the remaining thyroid cells.
So I have been on Synthroid for a week and a half, am starting to feel more like myself (less moody, better able to concentrate) but still have a very low energy endurance. Wednesday, for instance, I took a four hour nap in the afternoon.
Overall, this entire process has been annoying and has felt like more of an endurance exercise than something actually horrible. Never did I feel that my life was in danger, I was never in pain, I never had any significant fears. Some thyroid cancers are more serious than mine, and some people have much worse side effects and reactions to the treatments than I did. On the Thyroid Cancer Survivor’s website the biggest beef about perception to thyroid cancer is that it is known as the “good cancer” or “easy cancer.” This makes many thyroid cancer survivors livid on the internet, but for me it is probably an accurate statement. My surgeon told me that the form of thyroid cancer I had has a 90-95% survival rate over twenty years, which he said is better than almost anything in medicine. I’ll take that, and be perfectly happy once my hormone levels are balanced out and my energy levels return to normal.
I feel this description doesn’t offer a whole lot of new or exciting information, but I wanted a way to share with my friends and family what I had been through, and wanted to make it public on the web because I know when I was researching thyroid cancer I jumped at every story I could come across, no matter how mundane. In fact the good result stories seem to be outnumbered by the people who had problems. But the more stories I read, the calmer I felt about the process itself. Not the most fun way to spend a summer, but then I feel very lucky to have caught it early and to have such a great support system and a great medical team. All of my tests, treatments and doctor appointments were at Jefferson University Hospital in Philadelphia.