“If you are going to get cancer, thyroid cancer is the one to get…”
Guess how many times well-meaning people have told me this very exact thing about my thyroid cancer? Honestly, I’ve stopped counting.
Personally, I would have preferred to get ZERO cancer, but that choice wasn’t mine to make. And as far as comparing the suckiness of one cancer to another? That’s a pain olympics I want no part of.
How did I get here?
For as long as I can remember, I have been having my thyroid tested. Not for thyroid cancer, but for hypo-activity. My mom has been on replacement hormones for decades now and the doctors were always very cautious to make sure mine was performing appropriately. Year after year at my physical, I would have the bloodwork and then be told everything was “normal” and sent on my way.
In the winter of 2014, I was preparing for a major surgery. In my pre-op preparation, my doctor ran the usual bloodwork, including a thyroid panel. Everything was “normal” (as it always had been) and I was giving the OK to move forward.
Four months later, after a difficult recovery from said surgery, I was sitting in a trauma training with my colleagues and suddenly began to feel ill. I had a mild spring cold the week before and thought perhaps there were some lingering effects of the decongestants I had been popping on the regular. I decided to try to power through, because the training was just THAT good. But before too long, I realised I needed to leave.
During my drive home, I began to feel short of breath and my heart was pounding in my chest. It was a really scary feeling and I knew I needed to stop and get urgent medical care. I stopped at the nearest facility (an urgent care) and went inside. Upon taking my vital signs, the physician determined that I needed emergency medical care and called an ambulance. It was at the emergency room that I would start my journey.
Tests, tests, and more tests
At the emergency room, I was tested for all manner of things. Their primary concern was that I was experiencing a cardiac event, so I was immediately examined for signs of a heart attack. Luckily, the blood work and exam determined that was not the case but my heartbeat continued to be somewhat irregular (later tests and consultation with a cardiologist would determine that my symptoms were directly related to my thyroid).
Because of my recent surgery and difficult recovery, I was given some additional diagnostic tests to rule out further complications. During a chest x-ray, several significant sizes nodules were visible in my throat area. The doctor asked me if I already was aware of their presence and I assured him that I was not. I let him know about my regular bloodwork and screenings that were always within normal limits.
He told me that I would need some follow up, but not to worry. I needed to schedule a follow up with cardiology and my primary care doctor ASAP.
I met with my primary care doctor the next day. He attempted to reassure me by telling me a phrase I would hear multiple times from many people in the next few weeks – “thyroid cancer is really rare, nodules are usually benign”. I consulted with an ENT (who offered the same reassurances) and underwent a neck ultrasound. Fairly quickly upon receiving the results of an abnormal scan, I was scheduled for a fine needle biopsy.
Luckily, these types of biopsies take place in a hospital with the assistance of an ultrasound. There is also a specialist standing by to ensure that the sample collected is sufficient for testing (to avoid having to repeat the procedure). It was pretty uncomfortable, but over relatively quickly.
The next day, I received a call from my ENT. The biopsy tested positive for papillary thyroid cancer and I was going to need surgery to remove it. I had him repeat it twice and he told me to make sure I got a pen and paper to write it down because I probably wasn’t going to remember much of our phone call. He was right. I sat in stunned silence for about 15 minutes and then I began to cry.
I was 41 years old. Married to the love of my life. Mom to a 4 year old. Cancer wasn’t in my plan.
But neither was dying, so I scheduled the surgery.
Fighting thyroid cancer
Less than one month from my diagnosis, I had a full thyroidectomy. I experienced some complications due to two of my four parathyroid glands being removed during the surgery, causing me to go severely hypocalcemic and requiring additional treatment and extended hospital stay.
Aside from those initial challenges, my physical recovery was unremarkable. My drains came out quickly and my scar healed well.
Living without a thyroid was much more of a challenge. The thyroid is an essential part of your endocrine system that affects the function of nearly every organ in the body. Post surgery, I was extremely tired (sleeping 20+ hours a day), suffering from painful body and muscle aches, I was freezing cold all the time, and my hair started falling out.
Then I was scheduled for Radioactive Iodine Therapy. RAI is a type of radiation treatment that is used to kill off the remaining thyroid cells in the body. Thyroid tissue utilizes iodine to produce the hormones necessary for optimal functioning. Because of this, iodine is used as the vehicle for the radiation to treat thyroid cancer.
When most people think of radiation, they picture a machine. In RAI, the radiation is swallowed, effectively turning you into walking radiation until it makes its way through and out of your body. So, while I was feeling my sickest, I had to be quarantined for two weeks so that I didn’t harm anyone else with the radiation inside of my body.
A new normal
Once RAI treatment was over, then began the slow and challenging process of finding the correct dosages of thyroid hormone to get me feeling “better”. I don’t think I was fully prepared for how challenging and frustrating of a process this is. Too much hormone, and you feel like you are hyperactive, agitated, and your heart races. Too little hormone, and you are sleepy, depressed, and in pain.
There are quarterly blood draws initially, until your hormones level off. Then there is the low iodine diet, smaller (diagnostic) doses of the same radioactive iodine and whole body scans annually to ensure no tissue (or cancer) has returned.
I will need to take thyroid replacement hormone daily for the rest of my life. Without it, I can develop severe complications and die.
Check your neck
“It is common for people with thyroid cancer to have few or no symptoms. Thyroid cancers are often diagnosed by routine examination of the neck or are unintentionally found by x-rays or other imaging scans that were performed for other reasons. People with thyroid cancer may experience the following symptoms or signs. Sometimes, people with thyroid cancer do not have any of these changes. Or, the cause of a symptom may be another medical condition that is not cancer.
- A lump in the front of the neck, near the Adam’s apple
- Swollen glands in the neck
- Difficulty swallowing
- Difficulty breathing
- Pain in the throat or neck
- A cough that persists and is not caused by a cold”
Life goes on
Life surely has gone on. I am grateful every day for the blessing of life. To see a decade of marriage with my husband. To continue to see my daughter grow.
It is not without it’s challenges. But it is my journey and I’ll continue on.
Is thyroid cancer truly the “good” cancer” people make it out to be? Like I said before, no cancer is “good” cancer. I was forever changed in my experience, as are other cancer survivors. I underwent surgery, treatment, bad days, worse days, and I continue to fight. This tiny little butterfly shaped gland in our bodies does SO MUCH and I never appreciated exactly how much until it was gone.