It’s Back.

Unfortunately, it looks like my thyroid cancer is back. I was looking forward to the 6 year anniversary of my total thyroidectomy at the end of January. Now, I am facing dealing with thyroid cancer again.

My oncologist retired in December. The doctor that took on her patients did not want to keep me on, as he does not treat thyroid cancer. I spent a couple of months looking for a new doctor. I found an endocrinologist in another town not too far away. I wasn’t totally thrilled with him, but thought he’d be fine for bi-annual check ups. I saw him for the first time in September. Not long afterwards, I got a letter in the mail saying he was quitting with no future plans. He saw me one last time to make sure I had a prescription for my Levoxyl and referred me to an endocrinologist in Columbia.

The reason I was seeing an oncologist instead of an endocrinologist was because I had a horrible experience with one of the few endocrinologists here. He told me that nothing was wrong with me, I needed to stay off the internet, I needed to be on antidepressants, and there was nothing he could do for me. I was his patient for 2 1/2 years (I was hypothyroid for years before the cancer diagnosis) and during that time he never once physically examined my neck and only ran blood tests for TSH. Imagine my dismay when I found out I had been referred to his office. I didn’t respond to his office’s request to schedule a consultation for a couple of weeks. I started looking for a doctor in Charleston or Rock Hill. It would be hard to make a 2 hour trek for appointments, but I would make it work if I had to. After thinking about it for a while, I decided to call the local office and ask for another doctor. I told the woman on the phone I could absolutely not be the one guy’s patient again and asked her to pair me with the doctor in the office that was best for a thyroid cancer survivor. Without hesitation, she recommended a female doctor in the office. She just so happened to have an availability the next day. I went in with low expectations and a positive attitude. The new doctor is awesome!

During the consultation, she said everything I had hoped she would say. She could not understand why I was not getting yearly sonograms since my thyroglobulin number have never been under 5. I have antibodies from having Hashimoto’s so it complicates the reliance of thryoglobulin as a tumor marker. She gave me information on natural desiccated thyroid medication, scheduled me for a sonogram at the end of June (her first availability), and sent me to the in-office lab. She called me a week later with the blood test results. She was concerned with my thyroglobulin level of 7 and wanted me to come in Friday morning at 7:30 AM for a sonogram.

I went in on Friday for the sonogram. With in a few minutes, she had found 2 nodules in my neck. One was just below my thyroid bed. She explained that it looked like it could be a fluid-filled cyst. Another nodule, deep in my neck tissue on the right side appeared to be hard and she was concerned. It measured 1.1 cm. The nodules are not in the lymph nodes. I had a total thyroidectomy and radioactive iodine ablation. Those nodules should not be there. She tells me that I will need a biopsy and then we can decide on an action plan – more radiation, surgery, or a wait-and-see approach. Surgery might not be an option because of the size and location of the nodule. She would have another endocrinologist in the office do the biopsy. His first availability is Friday, February 21st. So, I’m scheduled for a biopsy. Now I wait. I do not want to do this again. I cried all the way to work.

Luckily, I am busy and don’t have much time to dwell. I kind of know what to expect and I am not scared for my life. Still, this sucks. Hard.

Second Post-Op Appointment

The bad weather held out long enough so that I was able to make it to my appointment with the surgeon today. Thank goodness! I was ready to get the 38 staples in my neck removed. It was a bit uncomfortable as he removed each staple, but I felt much better afterwards. The incision doesn’t look as bad as I thought it would, although my neck still looks a little shocking. The doctor didn’t put gauze over my incision and I had to walk out into the main office full of people. Lovely.

38 staples out

I could feel people staring. I didn’t care, though. I had just gotten some good news. My surgeon had the final pathology report. The lymph nodes he removed during the surgery were clear of malignancy. The samples from the neck tissue around my thyroid were also clear. I think he also said that the samples taken from the thyroid around the nodule didn’t contain cancer. I can’t remember the details. I wish I had a copy of the report to be sure. I’ll have to remember to ask the oncologist for a copy. It appears I caught this thing early, but I’m cautiously optimistic. I will have a full body scan in 6 to 8 weeks. When that comes back clear, I will feel much better.

I also found out from the pathology report that I have the follicular variant of papillary thyroid cancer. It was located in the right lobe of my thyroid and measured 1.4 cm. A microcarcinoma measuring 1 mm was found in the left lobe of my thyroid and it was pure papillary thyroid cancer. I am so glad the whole thyroid was removed. I will have to undergo a radioactive iodine treatment (RAI) in 6 to 8 weeks to ablate any remaining thyroid tissue.

Another interesting piece of information contained in the report was that my thyroid was severely damaged due to Hashimoto’s disease. Hashimoto’s is an auto-immune disorder that attacks the thyroid. It is the leading cause of hypothyroidism in the United States. I was diagnosed with hypothyroidism 12 years ago. I have been tested for Hashimoto’s in the past by two different doctors and was told by both I didn’t have it. Hashimoto’s tends to cause a rise in certain thyroid antibodies and mine were never elevated. I also never had typical Hashimoto’s symptoms. Even though it wasn’t previously detected, it apparently did a number on my thyroid. My surgeon said my thyroid was shriveled and hard, almost rubbery. I am so happy it is gone. My thyroid was rubbish and I expect I will feel much better now that it is out of me.

I’m 11 days out from my thyroidectomy and honestly, I feel pretty good. I’ve been able to keep taking Synthroid (although I prefer Levoxyl and can’t wait for it to be back on the market). I think I have an advantage since I was hypothyroid and on meds before having a thyroidectomy. I hope that means I won’t have to adjust my dose much. I’m not looking forward to getting off my meds to prepare for RAI. I can’t imagine how terrible I am going to feel.

I was scheduled to meet with the oncologist on the 13th, but the appointment was cancelled because of ice and snow. The appointment was rescheduled for the 21st. I will know more about the next steps then.