My Battle Against Papillary Thyroid Carcinoma
I have been meaning to write this for a long time. But since I have been repeating my history to a lot of doctors and medical students since my first confinement, I got lazy and postponed this post. It was until now that I am currently being isolated in the hospital that I have plenty of time to finally write down my journey in battling Papillary Thyroid Carcinoma.
It all started late January when I felt something in my neck when I swallowed. There was a noticeable lump when I drank water but there was no pain or discomfort. Since I didn't have any fever which would coincide with a possible throat infection, I decided to consult a doctor.
Upon a physical check-up in an outpatient clinic nearby, I had my blood drawn to check for T3, T4, and TSH levels and was asked to do an ultrasound. After getting the results which showed some findings, I was referred to an endocrinologist who recommended that I do a needle biopsy of my thyroid due to presence of a few calcifications. She said that there was a 5% possibility it could be cancer because the calcifications. Of course I didn't leave it to chance and agreed to do the needle biopsy.
When I got the results, it said that there a suspicion for Papillary Carcinoma. When I saw the word 'Carcinoma', I freaked out at the same time broke down. My doctor insisted that we do a thyroidectomy to remove my entire thyroid. But the thing is, I was about to transition to a new work in four days. Which meant that there was little time for me to be able to use my current HMO or company provided healthcare. I had to tell my doctor that I had to make arrangements first before my surgery as I needed to talk to my old and new bosses.
My husband was with me during that time and he took me to a different doctor that same day for a second opinion. It was his mother's doctor for her goiter and he was an ENT (Ears, Nose & Throat) doctor. He made another physical examination and was skeptical about the results. He also assured me that it was still in suspicion which gave me a sense of hope. But I was not out of the woods yet. I was asked to do another series of tests to further confirm.
Unfortunately, the tests further suggested that it could really be Papillary Carcinoma. I was asked to take some medication and come back to my ENT doctor after a few weeks to check if I was responding to the medicine he gave me or not. During the course of my initial medication, the inflammation in my neck, which was my only symptom, disappeared. When I returned with my new set of tests, he said that I was responding to the medication well. And while it might still probably be Papillary Carcinoma, it is less likely to be aggressive. He still recommended surgery as a form of final diagnosis and treatment, but said that it could be delayed for a few months until I was ready. But he also said that it had to be done within the year. I felt a sense of relief as it meant that I would be able to wait for my regularization in my new job and settle in first before being gone for a long medical leave.
And so fast forward to the next few months. I never had the inflammation again and I felt more energetic. Not sure if it was the medication regulating my hormones or it was because I was getting better sleep compared to my previous work. I regularly went back to my ENT for my scheduled check ups. A few months into my new work though, I learned that he was not an accredited doctor in my new company's HMO. He was gracious enough to refer me to a new doctor, an ENT surgeon who specializes surgeries similar to my case.
Upon checking in with my new doctor, he recommended that we do a frozen section Biopsy during my operation. They would first remove the diseased portion of my thyroid, which was the left and isthmus portion, and wait for the results while I was still open. The pathologist would immediately check if was really carcinoma or not and immediately relay the results to my surgeon who was standing by. If it's really the case, the right portion of my thyroid would be removed as well. If it's not carcinoma, which had a 10-20% chance, they will close me up. And what remains of my thyroid can potentially give me a chance to a better and more normal life.
My initial schedule for surgery was delayed for more than a week. I didn't get an endocrinology clearance due to my T4 & TSH levels that were not within acceptable range. Had it not been checked, I was at risk for a thyroid storm during or after surgery. I had to stop my meds and wait for my hormones to stabilize. Then when I was finally cleared for my surgery.
Upon opening me up, even without the Biopsy, he was already quite certain that it was carcinoma due to the quality of the thyroid tissue. He had to call a second doctor for an opinion to make sure he was was making the right decision and recommendations to my family. What was usually a 3-4 hour procedure lasted for 6-7 hours. My surgeon said it was one of his toughest surgeries. It was also tough on my family as they had to be called to the OR three times. Some of my parathyroid, a different gland adjacent to the thyroid which regulates my calcium levels, cannot be saved. This posed a potential complication of hypocalcemia. The growth in my thyroid had been so hard that removing my whole thyroid could mean paralyzing nerves in my vocal chords. This could mean that I might not have a functional voice and that I might need another surgery to correct this. They decided to proceed and remove as much of the diseased tissue as they possibly can.
Waking up after the surgery, I was already aware of being transferred to my bed. I was asleep the whole time so I had no idea what trasnpired. I was still hopeful and positive that things went well and that they didn't remove my whole thyroid. I wanted to know the results but I was too weak to speak. Eventually I heard while they were discussing that it was really Papillary Carcinoma. I said to myself that it's okay and that I'll have to accept it and move on to the next phase which would be the Radioactive Iodine (RAI) therapy. Then I fell asleep.
When I woke up, I tried to speak to my family to let them know that I was awake. I had a very low voice which was expected since my surgeon advised me that I won't be able to to speak normally for a while after the surgery. But I was surprised at my family's reaction when they heard me speak a few words. Little did I know what the fuss was all about until the surgeon visited and explained to me what happened. He was also also relieved that I was able to speak 'normally' as they would usually expect after a typical surgery. They were not expecting me to speak at all after the surgery. Or if I could, I would simply sound like hoarse radio static.
Thankfully it meant that I didn't need a second surgery for my vocal chords. Their theory is that my vocal chords have long been affected or paralyzed and that the unaffected nerves have been compensating for what was lost due to my thyroid.
Two days after being discharged, I was faced with another medical dilemma - hypocalcemia. The remaining parathyroid wasn't regulating enough calcium in my body resulting to the stiffness and strong tingling sensation in my hands and feet. It mainfested late and after I got home. We were worried since it had already affected my face and I was pursing my lips involuntarily. The worse case scenario was it could end up affecting my heart as well and cause potential damage. I was rushed back to the hospital where I was being monitored for my calcium and even magnesium levels.
After having normalized my calcium and magnesium levels, I was able to go home and rest while I waited for my Radiation therapy schedule. As my hormones declined due to the loss of my thyroid, I felt quite weaker by the day. I felt more sluggish and more emotionally vulnerable, which I anticipated but was still caught me unexpected. A week before the radiation, I was placed on a restrictive and quite difficult low-iodine diet which I will discuss in full length on a separate post. And now, here I am, a day after taking my radioactive iodine pill and under isolation inside the hospital, documenting my experience through this blog post.
My journey isn't over yet. I have yet to do more series of scans and partial isolation at home after my isolation here at the hospital. Plus I have yet to start on my hormones since I don't have a thyroid anymore. This will mean that I will be taking these hormones for the rest of my life. But my new endocrinologist tells me that when all goes well, I have a chance to normal life again, have a baby in a couple of years and all. Hopefully I'll be off my calcium supplements in a few weeks or months too.
I hope that if you've read this far and is experiencing or knows someone who is going through the same thing, know that you are not alone. I've narrated what I could based on my medical history but that's one aspect of the story. What I can also tell you is that I've had my own share of tearful episodes. I have wept hard a couple of times on my own, to my husband, and while praying to God. I cried my heart out so hard but it felt good after.
I continue to try to remain strong and positive, especially for my family. I was not alone in my battle and I'm grateful for my family who was there to support me in all aspects. While I knew that I was the one going through this battle, they were going through this battle with me as well. And I also knew that I had to be stronger not just for myself, but also for the people whom I love.
Of course there will be moments that we won't be strong enough and that's okay. When we've done our best, it's time that we lift everything to God to do the rest.
I took a photo to capture our hug before I took my radioactive iodine pill and got into isolation. Will be missing his hugs for a while but hopefully not too long ❤️
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