Carmen’s Stage 1 Papillary Thyroid Cancer Story

Carmen shares her stage 1 papillary thyroid cancer story, undergoing thyroidectomy, hormone replacement therapy (Synthroid), and radioactive iodine treatment.

In her story below, Carmen also highlights navigating life after a cancer diagnosis, including guidance for students dealing with treatment, how she advocated for herself as a patient, and how people were able to best support her through treatment. Thanks, Carmen!

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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You’re going to be okay, better than okay. You’re going to be stronger than you ever imagined.

Take all the time in the world to recover and focus on yourself.

Carmen Y.

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What was the exact diagnosis and staging

Papillary thyroid cancer. It had not spread to the lymph nodes or the other side of the thyroid. It stayed mainly on the left thyroid.
The cancer did not spread.

It was primarily in my left thyroid, but they recommended that I removed my whole thyroid to be cautious. The final pathology report indicated the cancer was present in the left lobe of the thyroid.

How were you feeling when you were diagnosed

Everything prior to the diagnosis was already leading me up to cancer. Knowing that I had to do a biopsy after the ultrasound, a phone call and office visit after the biopsy usually means there’s something more to the results.

I was pretty prepared for the diagnosis and just really wanted to know what the prognosis and next steps were. I also felt really bad because my endocrinologist broke the news to me and I told her it was okay. She said I was the nicest person ever. I told her I felt bad that she felt bad more than anything else.

How did you break the news to your loved ones

Definitely the hardest part prior to the procedure. It was really hard to come up with an easy way to break the news to anyone. Of course it was easier to tell people before the procedure.

I had to figure out all the steps of the treatment before I could tell people about my diagnosis. I also picked the timing to tell certain people.

»MORE: Breaking the news of a diagnosis to loved ones

Surgery (Total Thyroidectomy)

What tests and scans did you undergo before surgery

It always starts with the lab test for thyroid levels. Every lab test I had taken prior to surgery indicated that my thyroid levels were normal. However, there was a mass that was detected by the ultrasound. 

1. Ultrasound – My first ultrasound was very uncomfortable. I am someone who absolutely hates having anything touch my neck. I hate wearing turtle necks. So having an ultrasound on my neck was a big annoying thing for me.
   
   Basically you lie down and they make you put your head on a pillow to position your neck to be propped up as high as you can for the ultrasound. Then they will pour the ultrasound gel on your neck so that the device can smoothly go over the area. I guess the neck area is a very difficult area to look around.
   
   Also, I had some experience in the ER looking at x-rays and different views. So I was trying really hard to watch the girl while she was doing the ultrasound. I was trying to read what was going on in the screen which may have strained my neck even more and got me more annoyed.
   
2. Biopsy – Doing the biopsy was very interesting, I may have been a bit nervous not because of the procedure but because of what followed it. Because of what my mom went through with breast cancer, I knew that a biopsy basically gave you split roads. It’s the telltale of cancer or not.
   
   My endocrinologist had me lie down and positioned my neck to be as “open” as possible. She then looked through the ultrasounds to see which side my nodule was. She stuck a needle into my neck and extracted fluid.
   
   It’s like a prick, honestly. She did it twice. Many people may be afraid of this even though it’s equivalent to a blood draw, only on your neck. My dad went with me for this one.

Waking up from surgery

I woke up with the doctor in my face telling me all was well. He said, “Dad will be on his way,” and that I would see him for a follow-up soon.

He then told me something went wrong with my vocal cord and that I would be seeing a speech therapist after.

Were there any side effects after the surgery

I was a bit foggy. But the nurses were able to call my dad to come get me. They wheeled me down to the parking lot and I slowly got into the car.

The car ride home was ten minutes but it felt like forever. I was basically lying down in the passenger seat. It just felt like I was trying to get from one bed to another.

Side effects, there was not so much. My neck area was bandaged and my mom was waiting for me at home. It was really hard to turn my neck.

Here was what my doctor wrote to me: “Every patient recovers at a different rate. After thyroid surgery, most patients take between 1-3 weeks to recover. Routine activity is fine just no heavy lifting more than 10 pounds.

You do not necessarily need to stay home during that time. You will not need to stay in the hospital unless a problem occurs. I generally would not recommend travel immediately after surgery but, you should be okay after about a week.”

How long was recovery supposed to take

They tell you that thyroid surgery takes three days to a week to recover. I don’t doubt that it could be done. After all, I signed up for summer session to take two weeks later.

However, I did not realize that the stitches would take the longest to recover.  

My mom was a bit nervous about it so basically I couldn’t wet it for about a month. The doctor told me to rip off all the bandaids the week after. But I still had a saran wrap around it for at least two weeks.

In order to talk or make noises, the left and right vocal cords come together to meet in the middle of your windpipe to create different tones and sounds. Because my left vocal cord was paralyzed, there was gap between where my left and right vocal cord were supposed to meet.

Therefore, I would not only not be able to speak, I also had trouble drinking liquids. If I drank too fast and it fell through the gap, I would get short on breath really quick.  Speech therapy was to help me train my right vocal cord to move closer to my paralyzed left vocal cord so they would meet and I could talk.

Through the practices, my right vocal cord would slowly move over to compensate for the left vocal cord. After six months, my right vocal cord would move over already and I would be able to speak. However, I was warned that my voice would never be the same again.

Any permanent repercussions from the cut vocal cord

My left vocal cord is permanently paralyzed so my right vocal cord has moved over to compensate for the left vocal cord paralysis. I was told my voice will never be the same. It is true. I am currently taking very long to recover from days of yelling or when I strain my voice.

Recently, due to constant yelling and perhaps not enough rest, my voice has been hoarse for about five months. I haven’t had any problems until now.

Three Sharks seasons have passed since my thyroidectomy and it has finally caught up with me. In the past six months, I have noticed that my voice doesn’t recover as fast as it used to. I would lose my voice for two days because of the Sharks games that I was going to and the concerts in between. Then I would take another two days to regain my voice.

Now one week at the office and another weekend in retail and I notice my voice will be gone. My high notes cut out and I can barely whisper. I visited with a speech doctor four months ago when I did my lab test and finally agreed to see my primary care provider for check up. She told me there was nothing wrong with my right vocal cord except for it being sore.

She told me I needed to rest my voice. It has been difficult and I am afraid that I have permanently damaged my one and only good vocal cord.

Many people have asked me if I am actually sick and just sound like I have a cough. They have forgotten that I only have one working vocal cord. My mom is concerned and once we started talking about it, it turns out, she did not even realize I only have one good working vocal cord. I think this may be the beginning of another new battle for me.

People say I lost weight. I did not care. I just wanted food back in my life! People would not be used to my diet nor would they remember about my pill. My relatives stayed with us for a month (from China) and they would ask me every morning with no fail whether I wanted to eat the moment I came out of the bathroom from washing up. I had to repeat:

1. I could only eat one hour after my pill.
2. I could only eat certain things on the low iodine diet. This first time on the diet tested my patience to the max.

The second time I was on the diet a year later, things were a lot easier. I knew exactly what I was getting myself into.

Some friends who vowed to do the diet with me a year ago backed out the second year. Some friends asked why I was so serious and so strict on this diet. I told them, it was either I cheat on the diet and cheat myself or just die. I was not willing to put my own health on the line. This was not about losing weight, it was about making sure my thyroid no longer existed. 

Describe the pills you have to take for the rest of your life

Levothyroxine are the pills that serve as thyroid replacement for me. Because the thyroid is a gland that is very important to maintain homeostasis for your body, it is very crucial for the accurate amount of Levothyroxine to be taken after thyroidectomy.

Here’s the schedule: Levothyroxine is to be taken at the same time every day, one hour before your first meal or first bite of the day. It should be taken every day.

If you accidentally skip one day, you are advised not to take two to catch up but since it’s a hormone that takes time to regulate your body, skipping one day may not be a big problem. I have missed one day since I have started taking the pills.

Dosage: Based on age, weight and of course your thyroid levels (from lab tests), the endocrinologist will prescribe a dosage that is supposedly fitting for you. If there are symptoms that show up after difference in dosage, they will adjust accordingly.  

Based on your dosage, you can either have hyperthyroid or hypothyroid. Usually the symptoms are not severe because your endocrinologist will have a ballpark area of how much Levothyroxine you need.

However, this was one of my main concerns when I first started taking the thyroid replacement. Because I knew what the thyroid did (from previous classes I took) I knew that I could gain weight, have depression, have hair falling out and be fatigued if I had too little Levothyroxine (hypothyroid).

I have not experienced much of this. Right now is probably the only time I am noticing mild forms of this. I am gaining weight more than usual but it’s so mild that I can’t tell if it’s because I haven’t gone to the gym in too long and have been having too many sweets.

My hair is shedding a bit more than usual, but nothing too unusual from girls always leaving their hair everywhere. I also have mild form of bad memory though I’m also not sure if it’s because I’ve been doing so much and also getting older. I have not had any problems other than that. ”

The Levothyroxine pills usually only come in pills of certain increments. To get the correct dosage that my endocrinologist recommends, she usually tweaks it by the week so that I get my correct dosage if calculated by the day.

Quality of Life

How was life after treatment

There haven’t been many long term effects on me other than my voice. Life after treatment in terms of school had an immediate impact for me. I did sign up for summer session of school that would have started a week after.

There was no way I was going to head up to Davis, commute back and forth from Davis to Sacramento in the week after my procedure. I could not even shower by myself. I had to take baths and my mom helped me wash my hair every other day. 

How did this impact school

The good thing was that I had already completed all my classes for my communications degree (I kind of planned it out). I only had to retake some Anatomy and Physiology classes that I signed up for summer school. I wanted A’s and B’s to apply for nursing school so there was no point in taking a class if I wasn’t going to excel in it.

I opted to take the second summer session for Anatomy & Physiology 2. The ironic part of this is that we actually study the thyroid and briefly touched upon the Iodine treatment I had went through.

Prior to starting summer classes, I did email my professor regarding my situation and that I would be minimally speaking in class because of my voice. There were minimal impacts that affected my studies and I managed to get a B+ in that class.

Any advice to students who have to deal with a diagnosis?

NOTE: Treatment should be determined between patients, caregivers, and the professional medical staff.

For me, academics was my priority at the time of figuring out if I should go get my thyroid checked out. I hate myself for being so logical and having to plan out everything accordingly.

I knew that thyroid cancer, which I thought was my worst case scenario before I got any medical advice, was a slow-acting cancer. It was not going to affect my health immediately if I was not going to take it out. So I waited until I was almost done with all my classes to plan for surgery. 

First, if you’re a bio or pre-med student, you already know what you’re getting yourself into. I would recommend consulting with your doctor regarding the timeline. Yes, thyroid cancer sounds very scary but all the conversations revolving around such a diagnosis almost always starts with “this is the best kind of cancer to have.”

How was dealing with insurance for treatment

Insurance was probably the biggest hassle in my mind. But it was actually a lot easier to deal with than I thought. I got Covered CA in almost two days and set up a Kaiser appointment. I did end up paying for about 10-percent of the procedure which was about $3,000.

How did you manage your emotions through diagnosis and treatment?

I am someone who generally wants to deal with everything logically if I am emotionally and mentally stressed. My previous work in the emergency room really prepared me to handle my own diagnosis.

Although I only worked in the ER for about four months (as a scribe), the amount of the exposure I had working with the patients and the providers really opened my eyes to the medical field. I was a scribe so I had to basically memorize charts including patient history.

I worked in the ER in the Sacramento area, including the Elk Grove area and downtown Sacramento.  Therefore, I came in contact with a lot of the older generation and low-income population.

Thyroid cancer was something that was very common on their charts. In the ER, I saw people who were waiting there for 20 hours, some who had their tongue cut off and still had to wait four hours, some who were told they had cancer at 1 in the morning with no follow up.

I learned about prioritizing patients and what a doctor really does. I saw people fighting for their lives while some people were so drunk on the street that they just wanted a meal in the hospital.

I came across patients who were there for the sixth time with their family because they cut themselves.

I was very humbled by this experience. I promised myself that I would take care of myself and reminded myself that there wasn’t much to complain about. I also promised myself to never go to the ER unless I was really dying.

So with immediate emotional and mental stress, I always tell myself to be patient and that the world is so much bigger.

I have been working retail for about 12 years now and some days, I almost want to quit or lash out at customers. But I also know that at the end of the day, I am only selling clothes. There’s nothing significant about arguing with a customer about anything. I really try to look at the bigger picture and kill people with kindness because that’s probably the most productive thing you can do out of anger.

Did you have to advocate for yourself during treatment?

The time that I felt like I had to advocate for myself was my first primary care provider appointment regarding thyroid cancer. At the time, I did not suspect that I had thyroid cancer but I really needed an ultrasound to see what was going on. My PCP insisted that it was a goiter and that it was common amongst Asians. 

After the fact, I talked to a lot of my friends in the medical field (a majority of them were nurses) who said that you really have to be proactive about your own health. Even doctors aren’t always sure of what is and what is not going on with your body.

Once you have an odd feeling or even suspect something is going on, it is really better to go and check it out to be sure. Early prevention (as cliche as it sounds) is really what saves people, spreads awareness and is a better story to tell. 

»MORE: How to be a self-advocate as a patient

My friends.  I remembered after telling one of my best friends that my dad and brother went home after I had my surgery and came back to pick me up after, she quickly said, “If I knew that was the case, I would’ve come and stayed the whole time to wait for you.”

They didn’t come visit right after but they knew I needed my own recovery time. One of my other friends was my plus one for a wedding that was two days after my radioactive iodine treatment.

During that time, I was supposed to still be in isolation in case I spread my radioactivity to anyone. I asked him if he could bring me to the wedding and I would sit in the back so I wouldn’t make him radioactive in case anything happened. He brushed off any precautions and insisted that I sit next to him on the passenger side.

The people in my life mattered so much during my whole medical treatment.

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Thyroid Cancer Stories (Under 55)