Thyroid Cancer Community

I really didn’t know much about the thyroid gland until the Fall of 2016 when my primary care doctor felt a small lump in my neck and encouraged me to have it more closely looked at. A unique butterfly - shaped organ, the thyroid contributes to so much of your body’s normal functioning - from regulating hormones, controlling weight gain and weight loss to body temperature and sleep patterns. After a series of tests and a biopsy, that small lump turned out to be a cancerous nodule that needed to be removed. Cancer? What?! I was a young, healthy 23-year old who played lacrosse in college and was constantly active and taking care of myself. How could this be? I ended up having close to a five hour surgery otherwise known as a “thyroidectomy” where I had my entire thyroid removed as well as 15 lymph nodes in the neck area - 4 of which had cancer cells in them. I learned pretty quickly what the thyroid does for the body, not having one anymore, and soon became inspired to share my story and meet others who had also experienced Thyroid Cancer or other issues involving the thyroid gland. I was fortunate to be able to connect with Anne through Instagram soon after my surgery and learn more about her history and her mission to spread information about the disease. Anne is a dear friend and I am proud to support her and her quest to raise awareness about the thyroid and Thyroid Cancer - especially in September which marks Thyroid Cancer Awareness month.

I love Annie James because not only are the products beautiful but the mission is powerful. The proceeds from the necklaces directly support thyroid cancer patients. According to the American Cancer Society, “women are three times more likely to develop Thyroid Cancer than men.” As a survivor myself, it’s important to me to help people, especially young women, understand the importance of the thyroid gland and to regularly check their necks to make sure that everything is in order. I wear my necklace with pride and am constantly asked about it which allows me to open up about my experience and help raise awareness for others.

Thank you, Anne and Annie James for all you have done to spread recognition about the importance of “getting a neck check” and the impact that Thyroid Cancer has on people across the world. I am honored to wear your jewelry and share my story about my Thyroid Cancer journey with others and I look forward to seeing the company continue to grow and more and more people become aware about the value of the thyroid to the functioning of their bodies.

- Holly F.

In December 2012, I went to the doctor because a prescription had expired. The doctor could tell right away just by looking at me that my thyroid was enlarged. She said she wanted me to get an ultrasound to see what was going on. That same day I found out I was expecting my first child. I went in for an ultrasound shortly after, and they confirmed that I had multiple nodules on both sides of my thyroid. I then went for a biopsy and was diagnosed with papillary thyroid cancer. I was also diagnosed with an autoimmune disease, Hashimoto's. It finally made sense why I had felt sick for many years. My doctor and I decided that it would be best to wait until I gave birth to have my total thyroidectomy.

In December 2013, I finally had my surgery. After that I thought I would live a healthy life, and this would be in my past. It didn't take long until suspicious lymph nodes started to pop up. My doctor blamed these on the hormones from pregnancy and continued to ultrasound my neck every six months. I gave birth two more times after having my first baby in 2013. By the time my third baby was over a year old, my doctor finally admitted this could be more serious and sent me for a biopsy. In October 2019 I received the call that my biopsy came back positive for metastatic thyroid cancer. I went in for a right lateral neck dissection that same month. Three lymph nodes were positive for cancer. My doctor recommended I do Radioactive Iodine treatment (RAI).

We will continue to watch my neck for many years, and I am trying to stay positive and hope that this is the last time I will have to deal with cancer. You never expect to be diagnosed with cancer at 19 years old, and I definitely didn't imagine I would still be dealing with it seven years later.

- Mackenzie S.

I was standing in a parking lot about to go to dinner when I asked my friend if she could see the lump on the left side of my neck. She said she could, she felt it, and that it was probably just a swollen lymph node. For months, several doctors said the same thing. I went through blood work, an ultrasound, a CT scan, an MRI, saw an ENT and the consensus continued to be “It’s just a lump.” At the time, I was a sophomore in college and majoring in Dance Performance. I knew my body inside and out. My body was telling me that something was wrong and despite what the doctors said, I listened to my body. 

Finally, I had a biopsy taken on the lymph node. It came back irregular. I had the lymph node removed on a Monday and was diagnosed with Papillary Thyroid cancer the next day. I was young, healthy, and went from being told,  “You’re fine, it’s nothing” to being told, “You have cancer.” After my diagnosis I remember saying to my mom, “I could die. Did you know that?” The next few weeks and months were a whirlwind. I had my thyroid removed that Friday and three weeks later, I went through Radioactive Iodine Treatment.

It is now 13 years later! I see my endocrinologist twice a year, continue to pay attention to my body, and take Synthroid every day.  It took me several years to process my experience with cancer – to understand the paradox of facing my mortality at a young age while simultaneously being told I had the “good cancer.” Through therapy, the support of family and friends, and my creative journey as a dancer and now as an actor/producer, I continue to work through these conflicting feelings of being a survivor. I will never know why I survived while others don’t or why life can be unfair. I do know that despite this or maybe even because of this, life is still beautiful. Through tragedy, we find grace and through grace we discover what it truly means to live. It’s hard to say I am grateful for having had cancer. But at the same time, I don’t know who I would be without that experience. 

- Chelsea S.

My thyroid journey began back in 2017. I was coming to the end of my 2nd year of university and was working part time. I was getting severe migraines, feeling run down and found myself sleeping more than usual, but I would wake up feeling just as, if not more, tired. I was encouraged by a work colleague to go to the doctors and get checked out after weeks of not feeling myself. The GP checked me over and everything seemed normal. It wasn’t until the end of my appointment where she asked me if I had noticed a slight swelling in my neck to which I replied no. She felt my neck and assured me it was probably nothing more than a goiter, but sent me for an ultrasound anyway. Cancer wasn’t even in my head until my ultrasound results showed abnormalities and I was encouraged to try and get into my doctors the same day for my results. 

The following day I went in and received my results...“we’re not sure what it is but it isn’t a goiter”. I was put on the 2 week fast track, something which is used when they suspect cancer. A blood test, MRI, CT scan and a biopsy later, I was told at the age of 21 I had Papillary Thyroid Cancer. Nothing will ever prepare you for when you hear those words. It was quite advanced - I had a 6cm tumor and several infected lymph nodes. This resulted in a total thyroidectomy and a left neck dissection. This was followed by radioactive iodine treatment, which saw me confined to a hospital room for 4 days in isolation. I underwent further surgeries for recurrences in 2018 and 2019. By this point, it had crept to the right side of my neck so I have a full neck scar (something that has actually grown on me). April 2020 gave me yet another recurrence only this time, I was to go ahead with radiotherapy. 

Whilst I am still going through this process 3 years after my initial diagnosis, I remain optimistic that one day soon I will hear the words “cancer free”. My advice to people would be to regularly check your neck for any lumps or bumps and get checked out for anything that doesn’t sit right with you. I didn’t know what a thyroid was until my diagnosis, which shows the lack of awareness around it. I didn’t show any typical thyroid cancer symptoms other than the lump in my neck which makes it even more important to regularly check yourselves.

 

- Rebekka J.

In August 2019, I was playing flag football with a bunch of my friends when I got a bad concussion. I had to go to the ER that night due to vomiting and my mom met me there and kept suggesting I get a head scan to make sure I was okay. Turns out, moms are always right because that's how they found a tumor on my thyroid and recommended I get an ultrasound completed. When I went for my ultrasound, they found another tumor on the other side of my thyroid that was smaller but looked a bit more calcified - so they suggested an FNA biopsy.

After my biopsy, I was officially diagnosed with Papillary Thyroid Carcinoma and recommended to one of the best surgeons in Northern VA. I got my total thyroidectomy done on January 23, 2020, and received my RAI treatment on August 13, 2020.

If there's a few things I've learned with this Cancer journey it's that: 1) Moms are always right LOL and 2) you need to take it day by day and really listen to your body. This is monumental. I have no idea how long it would have been until I'd found the tumors unless I got a concussion, so I am weirdly grateful for that. I'm so happy to have connected with so many other folks on IG that are going through the same; we're all survivors and we're all stronger than we ever thought possible!

- Callie B.

Thyroid cancer was a blessing in disguise. It has never defined me. My invisible illness has opened doors and has allowed me to pursue my passion and purpose as a full time entrepreneur, empowering others through the gift of time, belief and self-worth.

For the past five years I have been living without the precious butterfly organ, other known as a thyroid. I was diagnosed after a routine physical when my doctor noticed the lump. After blood work, an ultrasound and a biopsy, my life changed very quickly. I had my thyroidectomy no more than four weeks after finding out I had cancer. There was a lot that needed to be removed; it was a scary time in my life.

Between balancing hormones, medications, energy, weight and moods, this is all part of the journey today for me. I continue to share my story of impact, raise awareness and educate others on healthy non-toxic living while embracing the journey of change, pain, struggle, abundance, gratitude and success. 

My favorite quote: "Everyday might not be good, but there is something good in everyday".

People can reach out and connect https://linktr.ee/kelsey_njourney

- Kelsey N.

Being diagnosed with cancer is heartbreaking and a terribly lonely road to walk when you don’t know anyone who has gone through what you’re going through.

My diagnosis came as a complete shock. It took six months for me to finally be able to talk about it outside of with my closest family and friends. The night before my six month check-up, I posted a plea to my Instagram friends asking for prayers and good news. It felt like a weight off my shoulders. It felt right to share. 

Little did I know, posting that would bring one of my now dearest friends into my life. Andrea and I went to the same school. She was a few years younger than me, but we knew of each other. When she was shockingly diagnosed with thyroid cancer, she came to me - knowing I had just gone through it. We talked for weeks leading up to her surgery. I prepared her the best I could. It was so comforting to talk with someone who was facing the same hardships. 

Bonding over something SO life altering was therapeutic. She helped me heal in ways she probably didn’t even realize. I feel incredibly blessed that this disease brought us into each other’s lives. Through talking with our families, we found out that we’re actually distant cousins! Our grandmas were best friends growing up. HOW COOL IS THAT! 

I’m SO thankful that both of us were brave enough to share our individual journeys through cancer and shine a light for ANYONE out there who is facing this. You do NOT have to do this alone. We are stronger together. 

- Courtney & Andrea

In February of 2019, I went to the emergency room for a really nasty infection. However, my doctors were less concerned about the infection and much more concerned about my heart rate of 130 while lying down. They did a bunch of tests, including a CT and found nothing anatomically wrong with my heart (just anxiety), but they did spot some “likely normal” nodules on my neck. I brought this up with my GP in May (at an appointment for my anxiety) who referred me to an ENT surgeon. After an ultrasound and biopsies, my diagnosis of papillary thyroid cancer was confirmed on June 10, 2019.

This cancer was found not even two months before I was supposed to move across the country, and the uncertainty was absolutely numbing. I was terrified, of course, but when these things happen. What choice do we have but to do our research and move forward? I found out this is the “good” cancer and while I don’t agree that any cancer can be good, I am thankful for the treatment available and that I caught it early. I had an incredible team of doctors in NYC who were able to rush my surgery and refer me to amazing doctors on the west coast. I had surgery August 9th and (praise God) have been cancer free since. I was able to move (two weeks after my surgery), start a new job, and focus on recovery. I didn’t know it when I went to the ER, but this cancer had a hold on my whole life. Since it’s been gone I’ve been less anxious, sick less often, and my heart rate has gone down significantly. For me this adjustment has come with a heart of gratitude for that CT that caught my cancer early. I have learned to listen to my body and urge others to do the same because you never know what it might save you from.

- Zoe L.

In December of 2018, I started a battle with urticaria, better known as chronic hives (not my first go-around with them). After going through numerous tests, a potion of medication, a series of playing around with my diet, and an allergist who would not give up on helping me, I finally found the right work-up to help maintain the hives. While undergoing this battle, I was diagnosed with autoimmune thyroiditis (Hashimoto's), which led me to another set of doctors (endocrinologist, a rheumatologist, and even an oncologist), and undergoing even more tests and workups.

My doctor then found a nodule on my thyroid. I got an ultrasound and a biopsy. All these tests came back benign and I was ordered a 6-month check. I felt lucky. Although my hives still appeared every day, they were under control and I didn’t have to worry about my thyroid. Six months passed and I underwent the same series of workups and had an ultrasound of my neck. The nodules on my thyroid were fine, but I had multiple lymph nodes that had abnormalities that required a CT. The results of CT came back as possible Papillary cell carcinoma. After involving a new doctor (Otolaryngologist) and another biopsy, the results were confirmed and I was diagnosed with Papillary Thyroid Cancer. 

On February 20, 2020 (at the age of 23), I had a total thyroidectomy and a neck dissection to remove the cancerous cells on my lymph nodes in my neck. On September 16th, I will undergo Radioactive Iodine (RAI) to kill the remaining cancerous cells and hopefully receive a cancer-free diagnosis. I feel grateful to have an amazing team of doctors who have been working quickly and have to listen to me throughout the entire experience. I am so happy to have had an amazing allergist who never gave up on finding a solution to my chronic hives and put me in contact with the right medical physicians who worked the same way.

- Cierra M.

When I was a senior in high school, I became ill with mono, an infection in which swollen glands are a common symptom. I had one noticeable swollen lymph node under my jaw, but my doctor wrote it off as part of the infection. Off I went to college and I didn’t see my primary care doctor for several years. When I finally did see my doctor again at 22 years old they looked at my neck and realized that the same swollen lymph node was present and had grown considerably larger. My doctor quickly sent me for a CT scan and a biopsy all within the next week or so. I had always been so healthy, I worked out regularly, had a decent diet, and showed no symptoms. It came as a shock to me when, a few days later, my doctor called me with my diagnosis: papillary thyroid carcinoma.  

I went in for surgery just a month later, where my surgeon removed my whole thyroid and 78 of my surrounding lymph nodes. Following my surgery, I received a round of radioactive iodine. My health had its ups and downs following my treatment. I found myself sick with colds, infections, and the awful fatigue that thyroid issues can bring. 

My last scan was just a year later in September 2019, where my endocrinologist told me there weren’t any visible cancer cells!

Having thyroid cancer allowed me to process my thoughts and emotions in a way I hadn’t before and gave me the opportunity to look at life a little differently. Through my cancer and rest days I picked up new hobbies and I now sell colored pencil portraits to people, something I previously wouldn’t have found interest in. Although it has been a daunting, emotionally, and physically exhausting experience cancer has taught me so much. It’s easy to lose your confidence through it but I found a lot of support from my loved ones and fellow Thycan warriors. 

I’m more on top of my health than ever and I hope to be as transparent as possible and keep advocating for myself and my fellow survivors. 

 - Caroline H.

Growing up I saw the commercials with kids in the hospital and the sad songs in background, but I guess I thought I was immune to it all. I had the picture perfect life; internationally adopted from a teenage mother and moved across the world to live a spoiled childhood. I had some challenges like ADHD and switching schools, but nothing compared to what I was about to endure.

My life started to spiral down an ‘Alice in Wonderland’ hole when I entered into the second semester of my senior year of high school. My primary doctor ordered an MRI to see the bones in my neck because I had been complaining about pain in my neck for months. Results came back and I had a mass in my throat. Ultrasounds and biopsies confirmed it, I had cancer. The biopsy experience was hard because they had to put me under because they weren’t able to get a good sample because the mass was so solid. I found out on March 12, 2019 that the mass was in fact thyroid cancer. On April 30, 2019, my thyroid was removed as well as the cancer infected lymph nodes in my neck. I am now waiting to have my one year post-surgery neck ultrasound, which has been delayed due to COVID-19.

- Jayne Z.

My cancer was found by mistake. I had a lump in my throat felt by my primary care doctor, and he asked me to get it checked out via ultrasound. The scan found the lump, which ended up being a benign congenital cyst, but it also found my tumor, which was thankfully only one side of my tumor. I opted for a partial thyroidectomy to avoid going on Synthroid for life. But cancer said, “Not so fast, I’m in your lymph nodes, too!”. Another surgery to remove the remainder of my thyroid and a round of radioactive iodine therapy later, I was told I was good to go.

I had my follow-up scan to see if the iodine therapy did its job, and my body was clear. *cue immense sobbing* My thyroglobulin, however, still shows that I haven’t reached “no EVD” yet (no evidence of disease), and because my cancer has originally metastasized, it has a greater chance of coming back. I consider myself to be in stable remission, but nevertheless, a survivor. Now I’m doing my part by helping other cancer patients by focusing on health literacy, patient education, research, and patient-provider communication after receiving my master’s this past spring in health communication.

- Carly F.

About a year ago I was in the process of being diagnosed with thyroid cancer. I was sent to the hospital multiple times for what seemed to be very minor symptoms. The most consistent symptom I had was my heart flutter. After an ultrasound on my neck, I received the weirdest, shortest, scariest phone call of my life. My doctor told me I needed to schedule a biopsy “immediately” and he said, "you probably have thyroid cancer”. Our phone call was about 3-5 minutes long and after I hung up I just remember laying down staring at the ceiling. It took me months to get it confirmed. After multiple biopsies and what felt like a million years, I got my diagnosis.

I went through phases where I’d break down and freak out (plenty of times) but overall I tried to stay positive. I remember when I wrote my first post about my diagnosis, I said, “I know I’ll be okay. You don’t -need- your thyroid. I’ll have to be on medication for the rest of my life, but that’s okay”. - I had NO idea that living without a thyroid was going to be the hardest part of this cancer journey. The rest of my life was going to be the hardest part of this cancer journey.

I’ve been through a full thyroidectomy, internal radiation and isolation and let me tell you, waking up every day feeling like this has been the hardest part. I’m still getting through it. I’m still struggling with physical exhaustion, roller coaster emotions, depression, I can’t sleep or I sleep too much. I’ve learned so much about myself, my body and what I’m capable of. I’m still learning and I’m getting a little better every day.

For those of you who have been here since the beginning, you have no idea how much you mean to me. THANK YOU for all the prayers, encouragement, support and love you so freely give me. And to the new faces around here, I hope I can encourage you in some way. I hope I can brighten your day, lift you up, help you through a diagnosis or just be your friend.

I’m not cancer free, yet. But we’re going to have a party when I am.

- Cassandra C.

When I was 17 years-old, I went to my doctor to get a check-up for a cold. At the time my energy levels were what felt like 100% - I was the happiest 17 year-old. The doctor palpated my neck and sensed a lump. One ultrasound and biopsy later, I was diagnosed with papillary carcinoma - thyroid cancer. I had no symptoms.

I spent a year boosting my immune system to get ready for surgery to have my thyroid removed (thyroidectomy) on August 24, 2015.  I was immediately put on hormone replacement medication that I have to take for the rest of my life. I then had radioactive iodine treatment, which had me isolated for three days and left me with a lot more radiation in my body than most people have. I gained 30 pounds within the first few months and had an abundance of horrible symptoms from the hormones imbalances. It took me over four years to regulate my body which, is something I still struggle with today. 

- Ella M.

I had just turned 24 years old when I found out I had papillary thyroid cancer. It was classified as stage II because of the metastases to lymph nodes in my neck and chest. Until I was 24 years old, I never really knew what a thyroid was. I just knew it was a butterfly shaped gland in my neck, and that my mom’s didn’t work properly, and she had to take medicine for it. For a few months, I knew something wasn’t right. I thought I was taking after my mom (which I with most things in life) and needed Synthyroid. I didn’t think that the endocrinology appointment I had on December 12th, 2017 would lead me to an 8 hour thyroidectomy and neck dissection, a dose of radioactive iodine therapy, and a scar that looks like the Joker’s smile around my whole neck. 

My cancer journey was painful, trying, and exhausting, but it was still beautiful. My body bounced back quickly from surgery, but it’s had a hard time adjusting to life without a thyroid. You don’t realize how important your thyroid is. It’s not a subject that’s stressed upon in Anatomy classes. This tiny little guy affects your metabolism, heart rate, body temperature, etc., and when it’s gone, you’re left to take a pill every day for the rest of your life to make up for it. Crazy, right? But I digress. My journey has given me a new and better perspective of my life and of my health. It’s taught me to not sweat the small stuff and to take things day by day. I have faith every day that I’ll get to where I need to be. The comeback is always greater than the setback. 

On May 24th, 2020 - I celebrated being cancer free for 2 whole years! I can say whole heartedly that the feeling of being on cloud nine will never get old. My thyroid cancer journey isn’t my identity, but it’s such an important part of my life. When I first had my surgery, I couldn’t bear the sight of my scar, and now it’s my favorite thing about me. Isn’t it funny how that worked out? 

- Jenna C. 

In July 2019, I went to my routine doctor’s appointment. I brought up how I was always feeling tired, at times exhausted, and couldn’t do my daily duties. The doctor order blood work to check for diabetes and my thyroid. She then started her check-up and this is when she found my thyroid was enlarged. She then ordered a neck ultrasound as well. About a week later, I got a call from her saying she wanted me to see a specialist due to what she was seeing on the ultrasound. This appointment took a few weeks to book but, but once I got in I had a needle biopsy done. The results came back ‘suspicious to cancer’. We then decided to schedule surgery. While in surgery my frozen section sample came back benign so the surgeon decided to only remove my right lobe and 7 lymph nodes. About a week later, I got a call from the serfdom saying the full pathology report had come back and they had found a 1mm spot of cancer. I had my second surgery in December 2019 to remove the left lobe of my thyroid. Surgery went well and I’m not waiting to have my cancer marker’s check!

- Cara

I was 28 when I was told I had cancer. 

Towards the end of 2017, I found a lump on my neck. It was fairly squishy and was about the size of a 50 pence coin. Not once did the possibility of it being cancer cross my mind. I was completely swept up in the whirlwind of Christmas and the New Year and decided to wait until the first week of January to see my GP.  

The GP examined my neck and told me it was likely nothing, but they wanted to refer me to the hospital to have it examined by an ENT specialist. Cue all of the tests, scans and biopsies. The weeks that followed were long, stressful and painful. The more tests I needed to have, the more my gut was telling me something was wrong.

It took around 6 weeks from initially seeing my GP to get a diagnosis. The doctors told me I had two cancerous tumors on my thyroid and the cancer had spread into lymph nodes in my neck.

I sat in the chair in the consultation room and felt completely numb. What was I supposed to do with this information? I couldn't just carry on with life as normal, as I knew my life had just changed forever.

Within a few weeks, I had a total thyroidectomy and left neck dissection which was painful and upsetting to recover from. I felt like I had reverted back to being a child, completely relying on everyone around me to help with daily life. 

Fast forward a few months and I had one round of Radioactive Iodine treatment, also known as RAI. It meant being locked up in isolation for 4 days whilst radioactivity attempted to attack and kill the remaining cancer cells in my body. Thankfully, it was successful after just one round. 

In January 2020, I was finally told there was no evidence of cancer in my body anymore. It took almost two years to get to that point - two years of feeling lost and as though I'd been stripped of my identity. Today, I look back at my experience and feel proud of how far I've come.

Despite it being the lowest and hardest time in my life, I consider myself very lucky to have a cancer that has such a high survival rate (around 95%).

If I could give one piece of advice to anyone that's newly diagnosed, it would be this - be hopeful and have faith, even on the hardest days. You're about to embark on an unknown and scary journey, so make sure you surround yourself with trustworthy and reliable people – you'll need them more than ever.

- Francesca W.

I am a childhood cancer survivor of papillary thyroid cancer, and I'm still fighting to remain cancer free. I woke up one morning and felt my neck, and it felt different. It felt hard and immediately we knew something was wrong. It was the strangest thing, but I’m glad I knew my body well enough (even at 11/12 years old) to know something was off! We then went from doctor appointment to appointment, scans and blood work to confirm my diagnosis.

I was diagnosed in 2009, and in 2019 I had my fourth recurrence. Although hearing you have cancer (no matter how many times) is difficult to hear, every time I've been comforted and surrounded by love and amazing friends, family, and even strangers. I always knew I wanted to give back to this community I've been apart of for nearly half of my life. In 2019, a few months before I got the news that my cancer was back, I started an online community for thyroid cancer survivors called Thycan Survivors. It's truly been such a light in my life and perfect outlet for my creativity but also place to share my experiences with thyroid cancer. I love sharing stories of other survivors and fighters, much like Annie James Jewelry. 

This year I hope to create my own podcast centered around my thyroid cancer experiences to continue bringing more awareness and representation to thyroid cancer.

- Chloe M. 

It had been a couple of years since I had visited a doctor for a routine physical, so I decided to schedule one in February of 2018. During the exam, my primary care physician casually noted that there was small lump in my neck. In that moment of time, I thought nothing about it. Before the doctor left the room, she mentioned she wanted me to schedule an ultrasound to get a closer look at the small lump. At this time, I still thought it was something routine and thought of myself as a very healthy individual. I scheduled the ultrasound that same week and to my surprise, they found a 3 cm nodule on the left side of my thyroid gland. I had NO symptoms, nor did I ever notice this lump in my neck. The size of the nodule concerned my doctors, so a follow-up biopsy was scheduled the same week to check the cells of the nodule. I was reassured by many that the majority of these nodules are benign and common. 24 hours later I was sitting alone in my living room, and my phone lit up with a notification that my test results were in. I checked the results and they read “papillary thyroid carcinoma”. I was completely shocked and it rocked my world in that moment.

I had a total thyroidectomy on April 13th, 2018. Thankfully, my lymph nodes looked clear, and I had clear pathology test results. I am in remission, my scar has faded, but I now look at life in a different light. I’m so thankful for the support of the thyroid cancer warrior community, an incredible medical team, and the chance I’ve been given to live life without such an important gland. 

Andrea T.  

My thyroid journey started in the late summer of 2017. I remember the evening vividly. My heart was racing, the walls were closing in on me and I had a feeling of impending doom. I was having a panic attack.  At some level I knew what was going on, but I could not reel it in, so I drove myself to an urgent care center.  The doctor that saw me agreed that I was having a full-blown panic attack and he asked if I had ever had one before. I had. My daughter (and only child) Arielle had passed away four years earlier at the age of eleven. I had been dealing with grief, depression and anxiety since her passing and panic attacks had become an unwelcome guest in my life.  The urgent care doctor thought it was a pretty good reason to be having the panic attack but still wanted to do a physical check.  When he got to my neck he asked if I had ever had any issues with my thyroid. Uhhh, no…He felt a lump and put in an order for an ultrasound.  One ultrasound and needle biopsy later I was diagnosed with Papillary Thyroid Cancer. 

In December 2017 I had a total thyroidectomy and neck dissection.  The cancer had spread to some of my lymph nodes and my doctor was confident that this cancer had been brewing for a very long time, as in possibly a decade. Looking back over the past decade there had been signs. I was exhausted all the time. I had always attributed it to being a mom of a young child and balancing a stressful career. The rash I had on my lower back that came and went repeatedly that my doctors felt was an allergy may have been due to my thyroid being wonky. The depression and anxiety that came and went over the years…a sign of a thyroid problem.  My mental fogginess…again…thyroid.  In April 2017, I went through a course of Radioactive Iodine Therapy to make sure we were taking care of any remaining thyroid cancer cells.  

As I embark on this new decade, I am grateful for the challenges that life has given me. They have been incredibly painful, but I lean on my faith I know there must be a reason for my journey. The biggest challenge post-surgery has been trying to get and keep my thyroid meds at the right dose.  I know when something is not right when the thyroid exhaustion and fogginess comes back.  If you have thyroid issues you know that “thyroid tired” is unlike any other tired you can be.  I want to go go go, but I have learned that sometimes I just can’t can’t can’t.  I get upset with myself that I can’t do as much I used to, but I am also learning to be patient with myself and that it is ok to rest. 

Art and creativity have been very healing for me through my journey. I started a series of paintings and drawings called “flight of the butterfly” which has helped me work through the emotional aspect of thyroid cancer.  Connecting with other women who have fought and continue to fight thyroid cancer has also been extremely helpful.  What an inspiring group of women!

Erin L.

Last year, I noticed a lump in the side of my neck, up by my jaw. My doctors insisted that it was just a lymph node swollen from a cold, but I insisted that it was something else. Many scans and biopsies later, on February 13th, 2019, they diagnosed me with papillary thyroid carcinoma, that had metastasized to my lymph nodes up the right side of my neck.

On April 20th, I went in for my surgery, a total thyroidectomy and a partial radial neck dissection. Six and a half hours later, with a few complications, such as one of the tumors had wrapped around my vocal cord, and one very, very close to a major artery in my neck. I made it out safely, lost my voice for a month and a half, but I made it out! I had to do radioactive iodine, just to make sure everything was taken out, but since then I’ve been in remission, thankfully!
- April O.

I am an Army veteran. I was married to a solider. I worked in law enforcement. I had a toddler. My husband deployed to Afghanistan in 2012 and came home in August 2013. During the deployment, I continued working full time law enforcement, cared for our daughter, and finished my college degree. I even graduated summa cum Lade. I was 31 years old. Because of my injures in the Army I was always achy, but it was always generally in my hips, back and knees.

In September, my husband had been home for a few weeks told me to go to the doctors - all my joints hurt and I was so damn tired.. all the damn time! Again, we are military, so keep that in mind because the medical care isn’t always fast. In October, I got an appointment with my primary care. She performed an exam and told me I had fibromyalgia and that there was a lump in my neck; she put a referral for me to get an ultrasound.

The Army hospital was too busy, so they referred me off post. In November I had my ultrasound - of course they didn’t tell me anything. A few weeks later, my primary care doctor called and said they found my thyroid was huge. One side was the size of a tennis ball and the other was the size of a sausage. So, they scheduled me for a biopsy. The biopsy was performed on Christmas Eve on 2013. On January 2, 2014 by primary care doctor called and told me it was cancer. In March of 2014, they removed my thyroid and my lymph nodes around there. The surgery was the easiest part in my opinion (with the exception of the first sneeze).

In May and June of 2014 I had RAI. Well as my life would have it my husband and I separated and divorced. In 2015, I moved to Oklahoma. The VA provided my care in Oklahoma. At my one year scan they realized that the cancer wasn’t gone. So, they recommend another round of radiation.

Two weeks later, the VA called and had me come in. (Never a good sign). They informed me that they made a mistake and gave me the wrong kind and dosage of radiation. So, I had to do radiation again! But after all that my cancer was gone! We went through struggles with my thyroid hormone levels. We learned that I have to take name brand synthroid. I also take Cytomel [used to treat hypothyroidism] twice a day. I tell people cancer isn’t the worse part, it’s life after cancer - the hormonal imbalance and the weak immune system.

- April

On April 2, 2013 I was diagnosed with thyroid cancer. According to the Thyroid Cancer Survivors’ Association and the American Cancer Society, approximately 60,220 people in the United States were also diagnosed with thyroid cancer that year. I never expected to be part of that statistic at age 26. One month earlier, during my annual visit to my gynecologist, the doctor performed a complete physical as part of the routine visit. During a neck exam, he felt a lump on my thyroid. This discovery caught me off-guard; I had no particular symptoms and had been healthy. Nonetheless, my doctor recommended that I have blood taken, a neck ultrasound, and he referred me to an endocrinologist.
I told myself the lump was nothing more than a benign nodule and I tried to put the findings out of my mind, but I could not. The next day, I scheduled a neck ultrasound preceded by blood work. Something during the ultrasound troubled me, so I was not surprised when I received a call from my gynecologist, a week later, with the results. My blood work showed I had subclinical hypothyroidism; I had an under-active thyroid gland, which without medication would eventually cause me to feel tired and sluggish.
A week after receiving my blood results, I had a consultation with an endocrinologist. He told me that the nodule was more than 1.8 cm and would require a fine needle aspiration biopsy to rule out the suspicion of cancer. Six days later I had the nodule biopsied.
The endocrinologist compassionately called me and requested that I come in so that he could deliver the news in person. Not only did the biopsy reveal my biggest fear, a diagnosis of papillary thyroid carcinoma, requiring a total thyroidectomy, but it forced me to come to terms with having to take a daily synthetic thyroid hormone replacement for the rest of my life. Before I left his office, the doctor advised me that I “should not make a research project out of the diagnosis” and recommended I find a surgeon and schedule a thyroidectomy.
A few days passed as I digested the news. I had good days where I felt positive about my future, and days that were more difficult to endure. I began taking a low dose of synthetic thyroid hormone replacement daily to treat my hypothyroidism, and each pill was a constant reminder of my present and what would become my future. With all of this new information, I felt confused and overwhelmed. I knew I needed surgery, but should I get a second opinion? How do I find a good surgeon? Should I have a second biopsy? It was then that I began to understand the endocrinologist’s warning.
As I began gathering names of surgeons, another question arose. Did I want to have surgery near home on Long Island, or did I want to see a doctor in New York City? After meeting with a surgeon on Long Island, I decided to get a second opinion from a doctor who came highly recommended in New York City. During my consultation he reviewed my results and told me something new. I had Hashimoto’s Thyroiditis, an inflammation of the thyroid gland that diminishes its ability to function properly. He recommended removing the entire thyroid and any surrounding lymph nodes to reduce the risk of recurrence. I felt confident with the surgeon and his proposed treatment and scheduled my surgery for May 3, 2013.

However, when I returned home and thought it over, I realized that I needed more time to process everything; I wasn’t ready to have surgery the following month. Again, the endocrinologist’s words haunted me. By this time I was torn, and allowed myself to indulge in the “what ifs.” What if the biopsy were wrong and it was nothing more serious than an under-active, enlarged thyroid? What if I underwent a thyroidectomy for nothing and had a scar on my neck as a permanent reminder? I needed more answers before I could feel certain that surgery was my only option. As a last resort, I sought the advice of a third surgeon, who was referred by my Ear, Nose, and Throat specialist. The surgeon, after reviewing my extensive test results, came to the same conclusion as the surgeons before him had: I had thyroid cancer and needed a total thyroidectomy. He was so sure of the results, and his confidence finally forced me to face the reality I had been so desperate to avoid.

On June 17, 2013 I underwent a total thyroidectomy with central neck dissection and lymph node removal. I was no longer someone with a diagnosis of thyroid cancer, but rather a cancer survivor. After I spent a night in the hospital and had symptoms no worse than a sore throat, I deemed my surgery a success and I was ready to start the next chapter—recovery.

I saw my surgeon for a post-operative appointment about a week later. The pathology results had come back. Of the six lymph nodes that were removed, one showed signs that the cancer had spread. I had done little reading about radioactive iodine as a cumulative follow-up procedure during my research phase, but I was sure that was going to be the next step. To my great surprise, my surgeon had a different plan. Since my most recent blood work indicated that my anti-thyroglobulin level was trending downwards, he felt comfortable in adopting a wait-and-see protocol. Should my levels plateau or increase, we would do a course of radioactive iodine. I left his office that day elated, and it marked the first time that I was able to think of something other than cancer.

It is now six years after my thyroid cancer diagnosis and surgery. My scar is virtually undetectable, but its' remnants serve as an important reminder of how fragile life can be. I was blessed to have the support of family, good friends, and an amazing team of doctors by my side throughout my diagnosis and treatment. The thorough examination conducted by my gynecologist is what led to early detection and my diagnosis. To him, I am forever indebted.

- Vanessa S.

A broken clavicle from an unrelated injury required a scan done of my shoulder and neck area to see what type of break I had. The results of the scan came back with more than just a broken bone, it came back that I had a hefty nodule on my thyroid. My primary care physician sent me for an ultrasound, and told me not to worry because “nodules on the thyroid are extremely common.” A few days after the ultrasound was completed, I received my results in my MyChart account which stated that they had found additional nodules, lesions, and swollen lymph nodes on the left side of my neck. I was sent for a biopsy right away. I knew something wasn’t right during the biopsy. Working in the medical field myself, I could tell by the demeanor of the staff that they knew something wasn’t right. I knew when I walked out of the hospital that day after the biopsy that I had cancer, I could feel it in my gut.

After the cancer was confirmed, my primary care physician referred me to my oncologist who recommended egg freezing (which I completed). We then scheduled my total thyroidectomy, with a complete central and left neck dissection of the lymph nodes which was completed successfully on Halloween of this year! They removed 38 lymph nodes in total.

Recovery was difficult and I am still swollen and tender to the touch. With over a month post op under my belt, each day seems to get easier. I am planning to complete the radioactive iodine treatment in middle to late January, and I’m looking forward to officially kicking this cancer right in the butt!

Due to the Metastatic component of my cancer and the fact that it has already spread into my lymph nodes, my chance for reoccurrence is very high...but we’ll cross that bridge when and if we ever get to it! I have cancer, I had zero symptoms, perfect blood-work, and no complications what so ever. Had I not gone in for that unrelated injury, I would have never known that my body was fighting this disease. Please check your neck, go to your annual physicals, and always stay one step ahead when it comes to being your own advocate for your health.

- Brooke J.

 

I was diagnosed with both follicular and papillary thyroid cancer 6 years ago at age 58. I would not have known I had any thyroid issues or cancer except for a pain in my shoulder that I thought might be a pulled muscle. I went in for an MRI for my shoulder and they saw nodules on my thyroid that looked suspicious. It turned out I had 5 cancerous nodules. (Meanwhile my shoulder was fine!)

I had a complete thyroidectomy followed by radioactive iodine treatment. The recovery process for both were difficult. The Thyroid Cancer Survivors Association (ThyCa, Inc.) was a great support organization during this time, and I still attend conferences and support group programs. I was also diagnosed with Rheumatoid Arthritis (RA) at about the same time. The balancing act between RA and Thyroid issues has been a learning experience, and I am still learning what things work, what meds help, and how keeping positive and strong helps! 

Last year, I was looking for something special to celebrate and mark my 5 year cancer survival, when I saw Annie James jewelry on my Instagram feed. I read about her jewelry designs, and about her cancer, and how she donates a portion of her proceeds to CancerCare, helping thyroid cancer patients’ mange the cost of long term treatment. I was so moved by that. I purchased one of her necklaces as a special treat to myself and as a donation for CancerCare. I wear the necklace all the time. It is beautiful and I love the butterfly clasp (shape of thyroid gland). It helps me remember all I went through and also keeps me grounded in knowing how well I am doing now. I feel blessed and am doing well at 6 years out!

I encourage everyone to get a neck check. Follow up with your endocrinologist, blood tests, etc. Join a support group. Thyroid cancer is on the rise and is often caught by “accident”.

Thank you to Annie James for all her work in bringing light to this and also to the ThyCa, Inc., and CancerCare.

- Jann S. 

Even though my scar is slowly fading away, it still reminds me of that terrifying cold February morning. That morning has changed my life forever, but it was for the better. Who knew that a small butterfly shaped organ hiding away in the neck could be so important. I didn't. I always knew I was different, but never knew why or how.

As a child I loved the outdoors. I loved going out playing in the dirt, grass and the rain. But my favorite thing to do was to capture the beauty of the delicate two winged insects called butterflies. Their elegance and poise made me wish I could sometimes fly with them. My favorite was the orange monarch butterfly. It always has and always will be.

When I turned sixteen, I expected to be getting my learners permit, then my license, never anything else. I was at my dentist appointment for a basic teeth cleaning, when the dental assistant came over to do a neck check. She said it was a new procedure to help find abnormalities that are not supposed to be there. She was feeling around and felt around the right side and paused. She called Dr. Crowley into the room to have a second opinion. After feeling my neck for what felt like forever she got up, left the room and called my mom. She told her that I need to have my neck checked out by a specialist because one side was not normal. A few weeks later I visited a few doctors and they took some tests. They all said the same thing. The mass that was in the right side of my neck was just called a goiter and there was nothing to worry about. I was kept on watch, until December of 2012 when things changed.

My primary doctor noticed that my goiter had grown larger and it was now a concern. I was referred to Dr. Goller, an endocrine specialist. She took a few ultrasounds of my thyroid and noticed that it had calcifications inside. Dr. Goller requested that I have a biopsy done on it to determine if my "goiter" was anything worse. On January 6, 2013, I had my biopsy and on January 10, 2013 at 10:32 in the morning I received a call from Dr. Goller. My greatest fear was becoming my reality. The results of my biopsy had come back and it was not good news.

I had Stage 2 Papillary Carcinoma Thyroid Cancer.

I was so convinced that there was nothing wrong with me; I thought I was perfectly healthy. I spent the rest of the day locked in my room. I could hear my mom and dad sobbing outside of my door, wondering how this could happen to their little girl. Later on, that day, we went to Dr. Goller's office. We talked for a bit. She eventually connected us to the best endocrine surgeon in New England, Dr. Phytayakorn.

After the meeting with Dr. Phytayakorn, I felt the first moment of security since being diagnosed. He made me feel calm, gave me confidence, and treated me like I was family. I went back to Becker College where I spoke to the dean of students explaining to her why I have to withdraw. She told me I had twenty-four hours to remove everything from my room, turn in my housing keys, and my electronic fob. I had twenty-four hours to remove a part of my life, to leave my friends, and say goodbye to my current life. While cleaning out my room I completely lost it. I screamed until I had no air in my lungs, "Why me!? Why me!? I am so young!?" I was so angry, but that's all I could say. I was petrified for my life. After leaving Becker, I went into a deep place. I didn't want to do anything. I lost all touch with my friends from school; no one but my parents and my brothers knew about my cancer. I couldn't and didn't want to tell people. I didn't want sympathy, I just wanted to be cancer free.

The day before my surgery I decided that I was not going to sit around my house and be scared. So, I went out. I ate all the food I loved, and had fun but the last twenty-four hours went by too fast. On February 20, I woke up at 6:30am before anyone was awake. I questioned if I really wanted to continue with this. If I ran away, how long I could stay hidden? It eventually came to me that I have to be brave and I would be fine.

Going into Boston, I spent the entire drive staring at the sky watching the airplanes, wishing I was on one flying away from my reality. We arrived at Mass General Hospital around 7:00am and by 8:00am I was dressed and saying ‘see you later’ to my big brothers. I told them that they are the best older brothers a little sister could ask for and that I loved them. At 8:10am the nurse came in to bring me to the operating room. My mom and dad walked down the frigid and lonely halls with me. Before entering the operating room, I hugged and kissed my parents, I told them that I love them more than anything in the world, I will be ok and I will see them soon.

I woke up eight hours later in the recovery room. The nurses explained the doctor had to also remove twenty-nine lymph nodes. I couldn’t talk louder that a soft whisper. The nurses said that it was normal because they had to use a tube and my voice should return within a few days; it didn't. When I was finally allowed to have guests, my parents came in first and the smile on their face still brings tears to my eyes. Soon after my two brothers came into my room and for the first time in my life I saw my big brothers crying – happy tears.

I spent one terrible night in the hospital and I was released the next day. I felt useless, powerless and unneeded. I couldn't even take a sip of water without aspirating on it. About a week after my surgery I went to my doctor’s office to remove the dressing. It looked great but I had a problem, I still was voiceless. I was frightened that it would never come back. I use to be able to hit higher than the highest note on the piano. My voice was my sanity, I would sing whenever I was happy, sad, angry or bored, but my voice was just gone. My voice eventually came back, but it wasn't the same as it was before, and I couldn't sing like I used to.

In May of 2013, I found out that I needed to go through a procedure called Radioactive Iodine (RAI) because there was a cancerous lymph node that was left behind. I was put on a special diet where I couldn't eat any soy, salt, processed foods, and dairy. After I was done, I was never so happy to drink a glass of ice cold two percent low fat hood milk. Life seemed to be getting back to normal. I was in Boston every month for check-ups, blood tests, and additional scans all to make sure that the RAI was successful. It had become a tradition of mine with my mother to visit the North End after each doctor visit. This made the drive and all the needles almost worth it. Unfortunately, the RAI was unsuccessful. The lymph node did not change in size and was still deemed a potential threat. This meant another round of RAI, another strict diet, and another moment in my life I just wanted to be over with. After my second round of RAI was over in July of 2014, the doctors noticed that the lymph node had begun to shrink! Finally, the good news I had been hoping for. I was finally in remission! 

Now 6 years later, I am cancer free. It was the scariest years of my life, but without them, I wouldn’t be who I am today. I wouldn’t have met my amazing fiancée, met my amazing best friend, and I wouldn’t be a mom to the little boy who is sleeping in the next room. Because of cancer, I gained more than I lost. All I have left to remind me of my cancer is a scar, the memories, and custom made necklace with a little butterfly hanging on the back. Who knew that a small butterfly shaped gland hiding away in the neck could be so important. I do, now.

- Celina B.