Members of our Annie James thyroid cancer community open up and share stories of their diagnosis, treatments and so much more...
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!
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!
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.
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 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.
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.