The Long and Winding Road

Here are a few things I have learned about thyroid cancer throughout this process:

• The diagnosis rate has increased over the past several years.
• Approximately 62,000 people will be diagnosed this year alone
• Women (especially those in my age bracket) are more likely than men to have it
• The type I have (papillary) accounts for about 80% of thyroid cancers

Diagnosing thyroid cancer can be a very tricky thing, and I consider myself extremely fortunate for it to have been discovered at all.  Here is the timeline of my long and winding road.

Spring of 2013:

I went in for a routine physical with my primary care physician.  Everything looked great at the appointment, however I mentioned to her that I had been having some heart palpitations, but I didn't know if they should be cause for concern or not.  She thought it might be a good idea to check further to make sure I didn't have any kind of heart condition, so she ordered for me to wear a heart monitor for a few weeks to see what might be going on.

Summer of 2013:

I wore the heart monitor for about 3 weeks, which entailed calling in the recordings on a landline phone every day...which meant I had to make several trips either to my parents' house or my husband's office.  Because, seriously - who has a landline phone these days? The monitor showed that I was having premature ventricular contractions, but that it was benign and would normally just be treated with a beta blocker.  I opted not to be put on the beta blocker though because we were hoping to have another baby in the near future.  

September 2013-May 2014:

This was happening...

...so my focus was completely elsewhere for a while and I didn't really think any more about my heart.

March 2015:

I went back for my first routine physical since the 2013 appointment because my ObGyn had been my primary care doctor during and immediately following my pregnancy.  My doctor asked about my heart palpitations, and I told her I was still having them daily but that I hadn't been concerned about them.  She decided to order a blood test just to check my TSH (Thyroid Stimulating Hormone) levels and make sure there wasn't anything going on with my thyroid.  I thought nothing of having this blood test done because I felt healthy, just completed a healthy pregnancy, and wasn't having any other symptoms to lead me to believe there was a problem.

Later that week, I received an email from my physician that my TSH levels were suppressed.  Because of that and the fact that I was having heart palpitations, she was concerned about hyperthyroidism.  I was then referred to Dr. Thomas, my endocrinologist.

April 2015:

I went in for my first visit with Dr. Thomas.  We reviewed my medical history, the results of the lab work, and any other symptoms I might be having.  Through our discussion, he was pretty confident that it was a classic case of hyperthyroidism, or Graves' Disease.  Basically, my thyroid was overproducing the hormone, which was causing my metabolism, heart rate, etc. to speed up.  

Towards the end of the appointment, he decided to do a quick "neck check" to feel my thyroid.  It was at that point that he discovered that I had a nodule on the right side of my thyroid.  When he had me feel it, I couldn't believe there was this lump on my neck that I had NO CLUE was there!  At that point, he wanted to do an ultrasound on it right away, so he took me back to another room to look at it further.  

During the ultrasound, he explained to me that there are two types of thyroid nodules: hot and cold.  Hot nodules act as a working part of the thyroid, so there is activity in them.  It is extremely rare for hot nodules to be cancerous. Cold nodules produce no activity at all...so basically just a lump serving no purpose.  It is more common to find cancer in a cold nodule, but most still turn up benign. The only way to tell what type of nodule I had was to do a 3 part thyroid uptake test, so he got me on the schedule for the following week.

Something interesting to know about thyroid cells that might help you understand how the uptake test works:  They are the only cells in the body that absorb iodine.  So, for this test I had to go in to radiology one afternoon to take a radioactive iodine tracer, then report back early the next morning for my first scan.  The purpose of the scan is to measure how much of the tracer was taken up by my thyroid.  They check it at certain time intervals after you take the pill, so I had to go back for the 2nd scan later that afternoon.  Painless process, but just more of a hassle to go back and forth to radiology for those two days.

This is the part of the journey that has gotten a little confusing for me.  I met with Dr. Thomas after the uptake test, and he wanted to put me on a beta blocker to regulate my symptoms of the heart palpitations.  He shared with me that my most recent blood test came back with even lower TSH levels than the previous one.  He also discussed the results of the uptake test with me.  For whatever reason, I left that appointment thinking that I had a cold nodule.  As I go further in to the story, you'll see why I am now unsure of what I understood.  Anyway, he wanted to see me back in a couple of months to do another blood test as well as a biopsy of the nodule.

August 26, 2015:

Biopsy day.  A biopsy of a thyroid nodule is also called a Fine Needle Aspiration (FNA). During the procedure, Dr. Thomas used a thin needle to collect 5 samples from the nodule. He numbed the area first with some extremely cold spray, so it was fairly painless. Just uncomfortable as I was able to feel the pressure from the needles.  

To ensure he was collecting from the right spot, he also used the ultrasound machine to locate the nodule during the procedure. It was when he showed the nodule to Curtis on the screen that I had pretty much confirmed in my mind that I had cancer. I remember his exact words: "Here, you can see the nodule and you can see how it is encapsulated on this side here.  Usually they are encapsulated on all sides, but you can see how this one appears to be growing out on this side."   Yeah.  That didn't sound good at all.  

I was told that, regardless of what the results happened to be, Dr. Thomas would want to discuss them with me over the phone and that I should expect to hear from him within the week. Let the nervous waiting begin...

August 28, 2015:

My phone rang and I immediately felt my heart drop.  The biopsy results were back and it was considered "atypia of undetermined significance".  In other words, the biopsy was abnormal, but they weren't able to conclude 100% that it was cancer.  Dr. Thomas wanted to speak to me in person that afternoon.  It's a good thing I work with the most amazing people ever who will drop everything to help because I literally hung up the phone, grabbed my purse, and walked out of my classroom.  

During the visit with Dr. Thomas, he explained that with what he saw on the ultrasound, the results from the biopsy, and the type of nodule I had, he wanted to remove it. Basically, there were three possible outcomes:  

1. Best case scenario: I could plan on having only the right side removed.  They would immediately send it to pathology, and if it came back as benign then I would still have the left side of my thyroid. 

2. Plan on having only the right side removed, but if malignancies are found while I'm in the operating room, they will do a full removal right then.

3. OR, there is a possibility that any malignancies might not turn up until the full report comes back in a week.  If that happens, you'll come back in for a 2nd surgery to remove the rest. (Which sounded like the WORST possible scenario to me!!)

4. Plan on a total thyroidectomy, then undergo the Radioactive Iodine treatment to kill all remaining thyroid cells, cancerous or not. 

I asked Dr. Thomas point blank what he thought I should do.  He told me that if he was giving this news to his sister or his wife, he would tell them to have the entire thyroid removed.  That was the moment I knew how serious he thought my situation was.  I could tell that he felt pretty confident that I had cancer.  I spent the rest of that weekend feeling absolutely sick to my stomach.

September 3, 2015:

I met with the surgeon (actually his nurse) to discuss the plan for my operation and schedule my surgery date.  At that appointment, I learned that the surgeon wanted to take the least aggressive route possible.  The plan was to remove the right side only and then have it checked out by pathology.  I wasn't sure how I felt about this plan because I had already spent the past week preparing myself to have a full thyroidectomy.  I explained my feelings to the nurse, but she went into further detail about some of the risks involved with rushing right in and removing the whole thing.  There is a higher risk of damaging the vocal cords, as well as these tiny little things called the parathyroid glands.  Apparently, these little guys are pretty important as they help the body regulate calcium.  There are two parathyroid glands on each side of the thyroid, so a partial removal ensures that there will be two working ones left while a full removal increases the risk of damaging all of them. I appreciated that information and put my trust in the fact that this surgeon is highly regarded and is an expert at what he does. Surgery was scheduled for September 25th.