My Thyroid Cancer Journey

Two years ago today I was receiving my second Thyrogen shot, a requirement to undergo radiation to kill any thyroid cancer cells left in my body after the removal of my entire thyroid and the affected lymph nodes.

A year before this, I didn't even know I had thyroid cancer or any thyroid issues, for that matter. As I mentioned in my blog about my personal Brexit , around this time in 2020 was still living in London, packing my bags to come back home for two weeks so that I could see my family after months of complete isolation, and also to try and get medical help here to cope with health symptoms I was having and figure out what was wrong. Since I wasn't living in the U.S. I was not insured here, and thus I ended up in Colombia which is my mom's home base. The two weeks turned into three months.

The discovery

In December of 2020, my mom found an internal medicine doctor in Colombia who could take me in. I went in with all the general blood work already done so he could evaluate me with intel in hand. Although I came in concerned about my kidneys due to shooting pains in my lower body, he focused on another area: my neck. He didn't warn me about what he felt during his evaluation, I'm guessing as to not concern me, but he did order a thyroid ultrasound for me. I was completely unfazed by it, as I was more concerned about the abdomen ultrasound that would give me more insight into my pain. Spoiler alert: it had nothing to do with the kidneys, and turns out I was just one of many women dealing with polycystic ovary syndrome, or PCOS. I'd find this out much later, in 2022. Other issues took precedence.

On December 24th, I went in for my neck and abdomen ultrasound. The abdomen ultrasound was pretty regular, with nothing of concern showing up. Once the tech put the scanner on my neck, though, he immediately changed his tone and practically scolded me, asking me when was the last time I had gotten my thyroid scanned.

"...Never? I didn't know I had to," I said.

The ultrasound confirmed what the internal medicine doctor had felt: I had nodules in my thyroid. Big enough to look concerning to a tech and to require a biopsy to rule out cancer. I took the results back to the internal medicine doctor and he was very pragmatic with his debrief. He said out of 100 people, roughly 50 have nodules in their thyroid. Out of those 50, typically two turn out to have malignant nodules that require removal. If that's the case, the removal of the affected areas of the thyroid is done, and radiation specific to the thyroid is completed about three months post-op.

I didn't know my nodules were malignant with certainty yet, but here is the kicker: on December 16th of 2020 (just eight days before my ultrasound) , my sister-in-law had just had her own thyroid cancer-related thyroidectomy. She found out much more differently than I did, as she developed gestational diabetes from her first pregnancy, and when the diabetes didn't go away after giving birth, her endocrine doctor did all the right digging and discovered her thyroid cancer.

Obviously there is no blood relation between me and her, but something about the fact that her story was unfolding about six months ahead of mine told me that this was preparing me for my own journey.

With the biopsy and surgery (and just feeling in poor health) in the horizon, I decided to leave London and come back to take this on with my family by my side. I also had a coworker at the time who had dealt with thyroid cancer as well, and so everyone around me seemed to be prepping me for what was to come.

The diagnosis

I was able to get insured again in the U.S. through Obamacare (Thanks, Obama! ), and so began my quest to determine whether my nodules were malignant. I called in early February of 2021 and it took a month for the endocrine medicine department associated to my sister-in-law's surgeon to have availability for my biopsy. I went in on March 18th. The doctor made a condescending comment about Colombia's healthcare and how "they would not determine whether I needed the biopsy," she would. As soon as her ultrasound scanner hit my neck she said "oh, they do provide good healthcare in Colombia."

I had three nodules: one in the middle (the biggest), one on the right side (second biggest), and a small one on the left side. The doctor said they would biopsy the two larger nodules and if they were determined to be malignant, then they'd just assume the small one on the left was as well, which would mean a total thyroidectomy. Some people can have removed only half of their thyroid if they don't have any existent nodules on one side, but that didn't look to be my case.

The biopsy works by inserting a needle through the neck while using the ultrasound scanner to draw fluid from within the nodules. No numbing of any sort. The doctor asked me how I felt before we started and I said "I'm eager." She said no one has ever said they're eager before a biopsy, but I told her I was just ready to know.

If the biopsy had gone as planned, she would've poked me once for each nodule, for a total of two pokes. Unfortunately, my nodules were surrounded by capillary blood vessels, and so she ended up having to go in eight different times, as six of the samples were unusable due to blood contamination. Very not fun.

We booked a follow-up appointment for two weeks later so I could get the results. On April 1st, 2021, the doctor called me with the verdict: both nodules were malignant and there was no doubt I had papillary carcinoma. It was time to schedule a pre-op appointment with the surgeon. The earliest available was June 4th.

Pre-op clarity

When the surgeon walked into the room for my pre-op appointment, the first words out of his mouth were "Where are you from?," to which I replied "Venezuela." He looked at his assistant and said "what's in the water in Colombia and Venezuela? 80% of my thyroid cancer patients are women in their 30s from Colombia and Venezuela." I don't know doctor, you tell me.

I was expecting another ultrasound at this appointment based on my sister-in-law's experience, but the surgeon said my biopsy ultrasounds were great and he didn't need to see anything else today. We talked through the procedure, and he explained one specific thing I was unaware of that is - quite literally - tied to the thyroid: the parathyroid glands. If you picture the thyroid like a butterfly, the parathyroid glands are four glands, each located on the "wings" of the thyroid. He explained to me that the parathyroid glands are in charge of the calcium absorption in the body, and so because they were removing my entire thyroid, he would do his best to save two of them so I would hopefully live comfortably without needing calcium supplementation, at least for a while. Remember this.

After my pre-op appointment I was to wait for a call to schedule my surgery, hopefully in July. I was also supposed to go get blood work done so they could gauge the situation as a whole. I had my blood work on June 7th, and the results may have been the most shocking part of my entire thyroid issues journey.

See, regular blood work usually tests for basic thyroid values like TSH, T3, and T4. All those values were normal for me, always. I had actually been tested for them in my teens because of weight gain issues, and since the results were within range, my family joked that my issue was not the thyroid, but my "mouthoid." Typical Latin/Venezuelan humor. So when I get the results back from the June 7th blood work where they also tested my thyroglobulin, thyroid peroxidase, thyroid cascading reflex, plus all the usual suspects, the lab actually arrived at a new conclusion: I had subclinical hyperthyroidism, and secondary hypothyroidism. This meant I had (have? I still don't know) Hashimoto's Disease, which is an autoimmune disorder in which "the immune system creates antibodies that attack thyroid cells as if they were bacteria, viruses or some other foreign body." (Mayo Clinic ). With Hashimoto's the thyroid will be attacked, and it typically leads to hypothyroidism. But because I also had subclinical hyperthyroidism, they basically canceled each other out and never showed up in my thyroid blood work values.

The main symptoms of Hashimoto's include weight gain, depression , hair loss, and fatigue.

You don't say...

I asked the doctor a lot about this both before and after the surgery, if Hashimoto's came first or one of my hypo/hyper thyroidism issues... how long had I had them, etc. And his best answer was "what came first, the chicken or the egg?" and that the causes for thyroid issues haven't really been studied in depth, so doctors just don't know. I've had three endocrinologists since all of this started and their answers are the same across the board.

The surgery

Although I was originally scheduled to have my surgery in late July, something opened up earlier and my total thyroidectomy ended up taking place on July 9th, 2021. They called me around 11:30 am to head into the hospital. The team of nurses and doctors who cared for me at Memorial Regional hospital in Hollywood, Florida were amazing. My family was not allowed to wait at the hospital for me because we were in the middle of the Delta strain of Covid-19 wreaking havoc, and so my mom stayed behind the glass doors of the hospital, as I walked in on my own to do the paperwork and be admitted.

The last thing I remember was being wheeled off into the operating room. By this point they had injected me with what they called "the cocktail," which is an amazing mixture of medicines that keep you calm. I needed it. It's never easy to go into surgery, but I think there's added pressure when they're going in through your neck.

I was woken up while still in the operating room for a few seconds and they asked me for a thumbs up but I threw this instead: ??

About an hour later I was awakened by my favorite nurse of the day, Chelsea, in the recovery room. I was given my belongings and I was able to text my family directly (the hospital called them with updates throughout the procedure), so I greeted them with this picture at 7:41pm:

My surgeon came to see me before I was discharged to tell me that the surgery went well and almost all had gone as planned except for the parathyroid gland conservation plan. One was dead, one they never found, one wasn't able to be reconnected so they chopped it into 17 pieces and inserted it into my muscle with titanium clips, and just one parathyroid gland remained functional. This meant I would potentially have some calcium issues. Before the surgery they give you an instruction packet, which says to have calcium at the ready to supplement in the post-op days. More on this in the post-op section.

I was given the green light to go home, and two hours later my family came to pick me up. Thankfully, the recovery from this surgery is relatively manageable. The surgeon told me I could eat whatever I wanted, and I could sleep in any position I felt comfortable. They used a glue to close the incision which would stay in place for two weeks until the surgeon removed it during my post-op appointment. The only thing you're not allowed to do for a few days is drive.

Post-op up, calcium down

Since I don't have a thyroid anymore, I do have to take a thyroid hormone for the rest of my life, and will need to see my endocrine doctor every six months to a year to ensure the levels are where they need to be. That's the easy part.

Now, how do you know when your calcium is down? Your arms, legs, and face go tingly, heavy, or numb. It's pretty uncomfortable and unsettling. I woke up at 2:00 am after the surgery with the symptoms, and I hated every second of it. I had bought the liquid calcium the pre-op instructions package recommended because calcium pills tend to be very big, and I didn't want to put myself through taking those with a sore throat post-intubation and invasive neck surgery. I took the liquid calcium, and it kicked in rather quickly, thankfully. That entire first week I had to supplement with calcium and I went back and forth to the lab to be tested, and then one day my calcium regulated and I no longer needed to supplement. (This was true for two years until August 22nd, 2023 when my calcium inexplicably went down, and I've been having to supplement since then. We still don't know what's causing the issue, but it's not at an endocrine level. I have tests next week to figure out if it's a gastric issue, and I shall write more about it then.)

The rest of my recovery was pretty seamless. After the surgeon removed the leftover glue I used a series of creams to help seal the incision, and then I settled on a silicone tape I found on Amazon which was wonderful because it kept my scar away from the sun (recommended for 12-18 months post-op so it doesn't get darker), and it stayed on for 7-10 days at a time. It did a fabulous job helping the healing process. People rarely notice the scar, or at least they don't bring it up if they do. I don't mind either way.

Like with every cancer, there is typically additional treatment beyond the surgery to ensure the cancerous cells don't go anywhere else. In the case of thyroid cancer, the treatment is radioactive iodine. Since they did find about 7/19 lymph nodes that were affected by the thyroid cancer cells, they decided to put me through the radioactive iodine treatment. It's nowhere near as serious as chemotherapy, but it does have its own protocol:

• A two-week diet of foods low in iodine (hint: EVERYTHING has iodine)
• Two Thyrogen shots (hey full-circle moment from the start of this blog!), which initially my insurance didn't want to cover and they cost roughly $25,000 out of pocket. Thankful for nurse Maria who fought with my insurance for over a month to get it covered.
• A radioiodine pill, which is considered nuclear material, and it means you're not to be within feet of anyone with a healthy and functioning thyroid. Depending on the dosage, you might have to be admitted to a hospital and stay there for 1-3 days until you're no longer radioactive. Mine was a low enough dose that I was able to stay at home (they still administer the pill at the hospital as it's a very dangerous and controlled substance and a million people have to sign off on it), and I just stayed isolated from my family for a week. You can't use plates or touch any metal as that can transmit the radiation, so they left me my food at the door in disposable plates and cutlery, and I had my own trash bag that I had to keep in the garage in a box for about a month before sending it off to the landfills (the radiation in the trash can affect people who work in waste management, so that's important to keep in mind). I've learned from Hank Green and his recent cancer experience that with chemo, you basically end up peeing out your cancer , and radioactive iodine has a similar outcome. The first 8-24 hours after you take it are the most critical, so you're supposed to take down a ton of liquid and empty your bladder as often as you can. NO ONE ELSE is to walk into or use that same bathroom for about a week. I took the pill on October 20th, and my birthday is October 26th, which means I spent my 32nd birthday unable to have physical contact with anyone out of abundant caution that I was still radioactive.

Cancer-free

Seven days after the radioactive iodine went through my system, I had a CT-scan to see the results. As outlined by the summary:

• SUCCESSFUL RADIOIODINE TARGETING IN THE NECK
• NO DISTANT RADIOIODINE-AVID DISEASE

Woot! I got a call on November 10th, 2021, to confirm that I was officially thyroid cancer free!

I didn't share my thyroid cancer diagnosis with anyone in my extended family until after the surgery was done, as they're all pretty dramatic and I didn't think it would be helpful for me or for them to know and catastrophize in advance. I shared only with very close friends whom I hung out with, mostly because the cancer made me extra vulnerable to Covid, and I needed everyone who wanted to physically spend time with me to be aware of the situation so I could stay healthy.

I share this now more publicly because had it not been for that doctor doing his due diligence and checking my neck, I still would not know I had thyroid cancer. All my blood work was normal, and I don't have a family history of thyroid cancer, so there was no indication for me to check. After going through this, I now know that women in their 30s must start doing regular thyroid checks as this is the age when the thyroid typically starts acting up. Please, advocate for yourselves and get checked regularly! Although women are more susceptible to this, it can happen to men too. My friend's husband went through it with a more aggressive type of thyroid cancer, and he had to travel to the Northeast to a specialized hospital where they treated him.

My surgeon told me that if there's one cancer you're going to get, thyroid cancer is the best one. And if you're going to get it, the best time to deal with it is in your 30s. Done and done! I am grateful that out of all the scary medical situations out there and the weight of the word cancer, this was my experience. It took less than a year from the first indication until complete eradication. All thanks to the doctor in Colombia who was beyond thorough in his examination.