Thyroid Cancer Stories
“Just stay positive. Let people in that are going to be there for you because it helps to talk, it helps to cry, it helps to laugh, just take it all in and realize that whatever happens, you're going to be okay.
Somebody out there that has it worse than you, so don't beat yourself up, don't think like, "Did I cause this? Is this something I did?" Don't get yourself in a funk and like stay in your room, just be positive.”
Name: Jamie Kay
Location: Chicago, Illinois
Papillary thyroid cancer
Difficulty swallowing for ~8 months
Lump on neck
Endoscopy + colonoscopy
Less common but Jamie presented issues of blood in stool. Later learned thyroid issues can cause constipation.
Fine needle aspiration
Surgical removal of entire thyroid
Radioactive iodine treatment
Table of Contents
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What were the first symptoms?
I did occasionally have a hard time swallowing things for the last eight months. Just certain things here and there will be difficult to swallow.
I actually didn't know anything was wrong. I was just in November having coffee at the table with my mom and my aunt, just waiting for my cousin to call. I was just about to ask her to be my maid of honor and my mom noticed a lump on my neck. So I called the doctor immediately.
I guess I never noticed because I'm usually in a rush in the morning to get to work, looking in my makeup mirror, and I can't really see my lower part of my neck in the mirror. The angle my mom was sitting at, she noticed and you could see it more when I would swallow, but I looked in the mirror right away and I'm like, "Oh my God. You're right."
[It was] right in the middle, below the Adam's apple, and that's another thing. Women don't think they have Adam's apples, but we still do. I tried to call the doctor. It was later on a Saturday and they were closed. They called me back that Monday and I got in right away.
Describe the wait for the appointment
I was crying right away and then I was just freaking out. My family was just like, "Everything's gonna be okay. It's probably nothing. It's probably just going to be benign and a lot of people have these."
But I was freaking out and honestly, in my head I thought, "Yeah, it's probably gonna be nothing. I'm gonna be okay." But I was still freaking out inside.
How was the first doctor’s appointment?
I had to go into work and the doctor called me back. I was so freaked out. I asked work if I could leave a little early and they let me go. It was just my primary care doctor who I [went to go see].
I told him I actually had a couple symptoms over the years, but not that I thought this one was related to the thyroid. But my fiance made me tell my doctor. Starting two-and-a-half years ago, I had blood in my stool, and I saw a doctor that specializes in that stuff. She was like, "Just take MiraLAX. You'll be fine."
Then when he got close to my neck, he's like, "See my Adam's apple? Everybody has this." Then he got close to my neck and felt it and he's like, "Yeah, you're right. We better send you for an ultrasound."
Describe the ultrasound
I went for the ultrasound on my neck at the hospital. It's just a tech who puts the ultrasound gel on the neck and moves the wand around. They can't tell you anything, so of course you're laying there wondering what the heck is going on or what the results are, because you know they kind of know, but they can't tell you. I was nervous, but no pain or anything involved.
How long did it take to get results from the ultrasound?
Probably four or five days, just because I had it done on a Friday and then I had to wait over the weekend. Nobody was in the office. I think the ultrasound I had the day after Thanksgiving, and I got the results back that following Tuesday or Wednesday.
I was freaking out waiting. I was on my way to just a wax appointment and when I'm literally about to pull up to the salon, the primary care physician called me and told me that it came back as a 1.8 centimeter tumor. That's probably what was pushing on things, making it difficult to swallow.
I was crying right away and it was right at the time of my appointment. I had to go in, so I'm crying to my wax girl, and called my fiance and my mom's at work. I was just calling everyone and everybody.
Describe the endoscopy and colonoscopy procedures
They give you the IV and they knock you out and then the endoscopy, they go down the throat with the camera and take a look at everything. Then the colonoscopy is, you know, the behind. You're completely out for that.
I was freaking out because I've never had an IV or anything in my life. I've never had stitches, never broken any bones. Here I'm thinking, "What if I have colon cancer?" I had all these crazy thoughts in my head at that time. I wasn't even thinking about the neck thing
The prep the night before, where you had to drink magnesium nitrate, was the worst part. But the procedure was nothing to be worried about.
How long did it take to get the endoscopy and colonoscopy results?
The colonoscopy they told me that I would find out in three days and I believe I had it done on a Tuesday, so I thought I would find out by Thursday, and they didn't end up calling me back til the following week, so I was freaking out about that.
The endoscopy showed I had a hiatal hernia and then the colonoscopy showed internal hemorrhoids, but they say thyroid stuff can cause constipation. I'd say over the last few years, I've had that and I've had trouble. I'm a pretty healthy person. I exercise a lot and eat healthy and I wasn't losing weight.
Your primary care physician sent you to a specialist
He was the primary doctor so he didn't know a ton about the thyroid. He sent me to somebody who specializes in all of that, the surgeon, who I went and saw two weeks later. Then I got the needle biopsy aspiration done in the office.
Describe the fine needle aspiration
I was super nervous about that because it doesn't sound pleasant at all. I went into the office and met this doctor for the first time. They had me laying down with my neck back and one of the girls had an ultrasound on my neck. The doctor would see where the tumor was and then he would stick the needle in there, take out the biopsy [sample]. He did it probably five times, and then in between that, he sent it to the pathology department in the hospital to make sure that I had an adequate amount of tissue so I didn't have to go through it again.
The girl on the phone, I don't know, I was probably nervous and misunderstood her but I thought I was going to find out the results that day. So my fiance and my mom all came with me and really, I was just finding out if they got an adequate amount of tissue.
How long did it take to get results from the biopsy?
I had that done on a Wednesday and he said, "You might not hear from me til next week, because it's the weekend and we're not here. I don't know how quick we'll get it from pathology."
He ended up calling me on Friday so I only waited a few days, but I was walking into my primary care doctor's office. As I was pulling his door open, my phone was ringing and it was the surgeon calling me to tell me about that it came back as papillary thyroid carcinoma.
Describe the moment you got the actual diagnosis
I cried. I called my mom and fiance right away. They were on their way there, because I told them, "Don't come with me. This appointment is just to go over my blood work. It's gonna be nothing." And then sure enough, the doctor calls when I'm there.
They rushed to the doctor's office. Then the surgeon, he knew my primary care doctor so he knew I was there. Right when I got off the phone with him, he calls my doctor to explain everything to him. Then he set up my surgery right there on the phone with me.
I had to get through the holidays and everything. So that was pretty stressful, having it on my mind. I just wanted to get it over with.
Did you get a second opinion?
No, just because I know my primary care doctor very well. Before this, I spent a lot of time getting to know him because my grandpa had passed away in April. He was in and out of the hospital and nursing home for rehab for six months. I was at the hospital every day and this was his doctor. So I trusted him and he knew this guy really well and just the research I did, I just knew it was the smartest thing to do.
How was your hospital?
It’s called Palos Community Hospital, in the suburbs by me. It's a decent-size hospital. It's not like the ones downtown Chicago, that big. I didn't have any problems with this hospital. This was where I grew up going. Any time my grandparents have been ill, this is just where I've gone.
How was your medical team?
I pretty much dealt with the surgeon mostly. He sat there and took his time with me, went over every little thing with me and my family also. He was great.
Also, the day of the surgery, the anesthesiologist, she was amazing. She sat there and talked to me for 15 minutes and explained everything to me. The nurses were great. I had a really good experience.
2. Surgery & Radioactive Iodine Treatment
How was the wait leading up to the surgery (thyroidectomy)?
I'm like, "You know, this could be so much worse. I'm going to get through it. I have great care. I have people there for me." I'm like, "What's the point of sitting home and crying and being depressed about this? It's not going to get me anywhere?"
I was just really positive the whole way, and I remember the night before, I talked to all of my family. I had a girlfriend stop over and bring me a gift.
I got up early and was at the hospital before six in the morning. Went over paperwork. They got me back into a room, talked to my family, explained what was going to happen, and then they brought me back to the OR, and just explained, like when they started to give the anesthetic, they said when they start walking me down the hall, I'm going to start to feel a little sleepy, and that I probably won't remember too much but waking up in the recovery room.
Describe the thyroidectomy
I was completely out. It was almost a four hour surgery.
During surgery, he actually took out part of my thyroid first, and then he waited 20 minutes and he went back. It came back that it was for sure cancer again, and there was a positive lymph node below the tumor, so he's like, "I'm not messing around. We're taking out this whole thing. We don't need it to come back or anything in a few years." So at first, he was thinking about maybe trying to save it.
I don't remember anything. I remember getting into the OR, and they transferred me onto a different table, and that's all I remember.
Were there side effects after the thyroidectomy?
I'm very sensitive to medicine and any of that stuff. I remember hearing the voice of my primary care doctor because he wanted to make sure he was there when I was out in recovery. I remember saying to the nurse, "Was that the doctor.?" She was like, "Yeah, that was him."
So, I vaguely remember seeing my doctor, and then, like horrible dry mouth, so bad, and the worst sore throat ever but I was so out of it. Then they wheeled me to recovery. My mom and my fiance were there, and then the doctor, the surgeon came and checked on me, and I was just really out of it for quite some time.
But I was very messed up from the anesthesia. I was kind of mean the first day. I was just really short tempered, and cranky, and everything felt like really foggy, and I felt very stiff. I wasn't really in pain, but I felt really stiff.
What helped with those side effects?
The sore throat probably lasted two to three days, but it was a sore throat that I've never had experienced before. I drank a lot of water, tea with honey, and I just got throat drops to suck on.
Did you stay overnight in the hospital for recovery?
I was actually going to stay the night in the hospital. That's what they wanted from the beginning. So, I had my bag packed and everything, and then the doctor instead just kept me in recovery for about five hours to make sure there was no swelling, bleeding, pain, anything like that, and he said, "I actually want you to go home and get rest in your own room, because I don't want to take any chances of you getting sick staying overnight in the hospital."
So I was able to go home, which was nice to be in my own bed.
Did you have to take time off work for the surgery?
I just took off work for almost two weeks after the surgery. I had my surgery on a Tuesday and then the following Wednesday I had my post-op appointment. I was planning to go off to work that Thursday because I thought maybe I would be okay to go back in a week.
I went to the surgeon, they peeled the glue off my neck and everything. That was the first time really getting out of the house and I just didn't feel good. I didn't feel like I had my strength up to go back to work. So I talked to my boss and I'm like, "Listen, I just I'm still not feeling well and my doctor doesn't want me to rush into things so I'll be back to work next week." So I took that Thursday, Friday, Saturday, Sunday, then they had me scheduled off for Monday. I went back to work that Tuesday. So I took about two weeks off.
Was that enough recovery time?
I felt much better. It was the first time I was starting to feel more like myself again, but walking around work, I still felt like I was in a fog. If I turned the corner too fast I would feel dizzy and I felt a little stiff still.
Describe the Synthroid pill you have to take indefinitely
Since my thyroid is out, I have to be on Synthroid for the rest of my life. I take one pill a day to regulate everything. I'm on the generic Levothyroxine, but I have to take it at 6:00 AM everyday for the rest of my life, and I can't eat or drink anything other than water for an hour afterwards.
Are there Synthroid side effects?
There's not really side effects to the pill. I know a lot of people think, "Oh, when your thyroid comes out, you're going to gain weight," or, "Is this pill going to make me gain weight?" And all this stuff, and my doctors have both told me, "You're not going to gain weight unless you're just going to sit at home and be depressed and not move and start eating a bunch of junk." He's like, "It's not going to happen to you.
I'm sure maybe think they do if their levels are off track and they have to get it adjusted, but that's why I have to go. I just went and seen the surgeon yesterday, and he checked all my blood work and my six week post op, and all my levels are perfect. So I didn't have to adjust my medicine.
Why did your doctor decide to prescribe radioactive iodine treatment after a successful surgery?
Some surgeons would say, "Oh, you don't even have to do radioactive iodine," but my doctor doesn't want to take any chances. Even though he took all the cancer out, there could be microscopic cancer there still since there was a positive lymph node.
He wanted to do this to make sure it's all gone and I don't have any recurrences. At first I was really nervous thinking about doing all this, but I totally agree with him. I don't need this to come back, I need to just knock it out and be done with it.
Describe the radioactive iodine treatment
Note: Will be updated once Jamie has gone through the entire process, expected mid-April 2019.
He explained it to me and then the referred me to see an endocrinologist who I had seen a couple weeks ago who explained it to me more. The endocrinologist is the person that I will follow up with who will give me my prescriptions and stuff from now on, and he referred me to an oncologist. They agreed that they wanted to give me a lower dose of the radioactive iodine. But the oncologist went through everything with me.I have to be on a low iodine diet a week beforehand, so nothing that has iodine in it which is a lot of things.
I start March 6th. Years ago, you used to have to stop your Synthroid for two weeks before you started radiation. Now, they have it where I don't have to stop it, but I'll go on the 11th to the hospital, and they'll give me an injection, and on the 12th will give me an injection, and then on the 13th I go and they administer the radiation to me. Then, I have to quarantine for about five days. It's just one pill they give me.
Any post-treatment scans?
On the 22nd, I go for a full body scan to make sure that everything went well, the cancer didn't spread anywhere else, and the radiation worked.
3. Quality of Life
Did you have to advocate for yourself during treatment?
No. I honestly have had really good experiences with, like I think my surgeon, he's a young guy and I think he has so much passion for what he does and is so into it and so smart, I felt so good in his hands.
What was the worst part of treatment?
It wasn't fun at first after surgery. Then I was okay, I was just sleeping and resting and I wanted to get as much rest as I could because I wanted to just recover and like move past this, but probably after week two I started getting a little bit of a funk because I'm like, "I'm sick of staying home, like this stinks, like I just want to feel 100% again."
What got you through the harder times?
I started that Instagram page like right away because I'm like maybe I could inspire somebody or talk to girls or even guys who are going through the same thing. So I made that page and I've had girls reach out to me from all over the world that are going through the same thing and say I inspire them with my positive attitude. It just makes me feel really good.
Were there any surprises during this experience?
I was kind of surprised when I found out I needed to have radiation. That was a surprise. In the beginning, I think even my surgeon thought that this was going to be nothing and I think he was a little surprised too when it came back as the cancer. So we were all a little surprised.
What type of support was the most helpful?
I actually don't live with my fiance yet. I moved back with my mom and it's just me and my mom but he was over all the time and my mom actually took a couple days off of work when I first had surgery. She meal prepped all this food for me that was softer for me to eat and was getting me my medication. They were both helping me a lot so it was really nice.
After Day Two I was able to get up and fend for myself but I was just more comfortable being in bed, I didn't feel well.
How has it been dealing with a cancer diagnosis at such a young age?
I got engaged in September and then in November, I'm thinking I'm going to have this fun happy day with my cousin asking her to be my maid-of-honor and asking my little godson to be my ring bearer.
Then out of nowhere my mom notices a lump on my neck. So I was freaking out, I was scared and thoughts in my head were like, "Am I going to have to postpone my wedding in the beginning?"
But then I had a really good support system and my family was all there for me, my fiance and I just kept thinking to myself, "You know this is just a bump in the road, things could be so much worse, there is other people out there going through so much worse. I'm going to get through this."
The guilt of having a “good” cancer
I ran into my mom's friend at the gym last week and just two years ago she had a double mastectomy and she's like, "Oh my God, how are you doing? Your mom told me about you."
I talked to my doctor about this and he's like, "Do not feel bad. I'm going to be honest with you, yeah everybody says that this is a good cancer to have if you're going to have one but Jamie you still have cancer. That's a lot for the mind to process and your surgery was just as long as if not longer than having a mastectomy. You went through a lot so don't think that. Yes there's different things they think of with that like their womanhood and things like that but you went through just as much. Don't feel bad talking about it, you've gone through a lot and it's okay." So it was really nice to hear that from him.
He said, "That's why he's like I have my patients reach out to Cancer Society if they need people to talk to. There is support out there, don't think you went through anything less than anybody else."
Any more advice to people now facing a diagnosis?
Just stay positive. Let people in that are going to be there for you because it helps to talk, it helps to cry, it helps to laugh, just take it all in and realize that whatever happens, you're going to be okay. Again, it's going to be like somebody out there that has it worse than you, so don't beat yourself up, don't think like, "Did I cause this? Is this something I did?" Don't get yourself in a funk and like stay in your room, just be positive.
An important message on prevention: avoiding tanning beds
I work in the dermatology field and I work for a Mohs surgeon and we do surgery on skin cancer so I'm a huge freak about skin cancer and not tanning and stuff now.
But when I was younger I did a lot of tanning and one of the first questions the doctor asked me when I went for the biopsy is if I did a lot of tanning bed use when I was younger because the radiation from tanning bed can cause things like this.
So that's a big thing that I like to tell girls now too, like stay away from the tanning beds because I did do a lot of that when I was younger a teenager, in my early 20's.
I used to go tanning all the time and now I'm anti all of that. I live in my sunscreen and so to hear that I was like, "Wow. I wouldn't have even thought about that. I know it can cause skin cancer but I never thought about the thyroid or anything."
Staying with Jamie’s story
Feel free to follow along with Jamie Kay on her Instagram Page.