We’re kicking off our series with a blog by Danielle Nicosia who has been battling thyroid cancer since 2012. She is a passionate volunteer for Thyroid Cancer Survivors’ Association (www.thyca.org) and raises awareness about thyroid cancer on social media. Contact her on Twitter @ThycaSurvivor09
Q: What is a neck check? (download the thyca.org neck check card here for further details)
A (Danielle Nicosia): A neck check is a simple procedure that can be done anywhere to detect abnormalities in your thyroid. All you need is a glass of water and a handheld mirror. Here are step-by-step directions:
1: Hold the mirror in your hand, focusing on the lower front end of your neck, above the collarbone, and below your voice box (larynx). Your thyroid gland is located in this area of your neck.
2: Continue focusing on this area in the mirror, and tip your head backwards.
3: Drink water and swallow.
4: As you swallow, be sure to look at your neck. Check for any bulges or lumps. Please remember to not confuse the Adam’s apple with your thyroid gland. Your thyroid gland is a butterfly-shaped gland that sits low in the front of your neck.
5: If you see something, contact your physician immediately. Please don’t wait months or years. Early detection is key.
Keep up the fight and get those necks checked. If you need any support in any way please don’t hesitate to contact me on Twitter. I would love to help you. I urge you to please spread the word and get your necks checked! Early detection is important.
So that you understand how easy it is for thyroid cancer to be misdiagnosed, I’d like to share my personal story with you here … In my late 20s, while at college, I started having trouble walking. A rheumatologist diagnosed me with peripheral neuropathy in both legs. For many years, I struggled with weight loss and concentration. Every day, I fought to get out of bed to go to college. Every little chore was very difficult for me to complete. To this day, I continue to have severe fatigue.
In 2012, at the age of 26, I started experiencing severe neck pain. At first I thought I was getting a cold because I was always sick. The pain in my neck persisted for three months. Painkillers like Tylenol were no help. I went to a different rheumatologist as my regular doctor was on vacation. This doctor got a ton of labs drawn the next day. At this point, I couldn’t walk at all – I was in a motorized wheelchair. Two days later, I got a call from this rheumatologist who told me, “Danielle, your thyroid panel is extremely high. You might have cancer. Please see an oncologist right away.”
Weeks went by and I still wasn’t getting better. The pain started to increase. Finally, I went to an oncologist (cancer specialist) for the first time in my life. I remember sitting in that room, staring at the wall. Petrified to be in that office. I met the oncologist and he said, “You have thyroid disease.” I asked him what this was as I had never heard of it before. He instructed me to see an endocrinologist right away and referred me to the Chief of Endocrinology at his local hospital.
Finally, in summer of 2012, I saw a local endocrinologist. This doctor diagnosed me with Hashimoto’s thyroiditis, autoimmune hypothyroidism. Just by looking at my labs. I was so confused. I asked questions and he refused to answer them. He explained the neck pain was just a “cold”. I told him the pain had been getting worse, and all he did was look at my labs. He also gave me medication and told me to stay on this for just six months.
I was on Levothyroxine (T4-only medication) for the first time in my life. The doctor said the weight gain would disappear within eight weeks, and to come for a follow-up in eight months. I walked out of his office so confused and scared. I started taking this medication the next day.
After a week, I was feeling worse than ever and began coughing up blood. I demanded to see the doctor, even though his secretary gave me a hard time. This time my father came with me. Once again, he assured me I was perfectly fine, but this time all he did was touch my neck for a second. I asked what he was doing and he said, “I am just feeling your thyroid. You just have a bad cold. Go to your regular MD and get medication.” I explained I had already seen him and antibiotics were not working.
"You have to fight for yourself, my friends! Get your necks checked!!! This can save your life ... this can happen to anyone."
To cut a long story short: my cousin works for a breast cancer imaging center. She told me to get a script to have a thyroid ultrasound done. My regular MD gave me the script immediately. For the first time in my life, I was petrified to walk into this office. I had no idea what to expect. The appointment took hours. The tech kept calling the doctor who checked my neck – at least five times. Then he said, “You have a lot of nodules on your thyroid, I have to do biopsies immediately.” Tears were streaming down my face. The doctor ended up getting my cousin and my mother to come in with me during the biopsy. I screamed like a baby. Boy did it hurt!
Two days later, on July 3, 2014, I got the call:
“Danielle, I am not allowed to say this over the phone, but you need urgent care immediately. You have metastatic thyroid cancer.” Tears streaming down my face, I had thought I was fine because the endocrinologist had told me I was! I was petrified.
If I hadn’t have listened to my gut and my cousin’s pleas, I wouldn’t be here today. I was told I had had thyroid cancer for 10 years!!! I had a total thyroidectomy weeks later at Sloan Kettering Cancer Center in New York City. My entire thyroid had so many nodules as well as many lymph nodes that were cancerous too!
What a lesson I learned!! I knew something was wrong all along. Especially when I started to bleed. I wish I had listened to my cousin and gone to her office sooner. The same day, the endocrinologist who insisted it was “just a cold” was informed I had thyroid cancer and called me to apologize for his oversight: “I am so sorry I misdiagnosed you, Danielle. If there is anything I can do, please do not hesitate to contact me.” I hung up on him. I will never go back to him.
I’ve experienced the craziest, scariest, most horrifying journey of my life. Somehow, through all this pain and exhaustion, I continue to fight hard. I have no idea where all this strength comes from. Now this journey is far from over, but I can tell you that I know someday I will beat the big “C” word and I will make sure our voices are heard.
You have to fight for yourself, my friends! Get your necks checked!!! This can save your life. I continue to fight this battle daily. I am undergoing treatment at the moment. Most of my days are tough for me, but I have a great support system and the proper care. My goal is to make sure you are all aware that this can happen to anyone. Even though most of my days are so tough because of the damage from radioactive iodine treatments, I continue to fight for not only myself but for you all. Advocating everyday on Facebook or Twitter keeps me going. I love spreading awareness.
September is Thyroid Cancer Awareness month. We need change. We need our voices to be heard. You need to step up and be the best advocate for yourself. If you feel your doctor is not treating you properly, please find another one as soon as possible. If your doctor tells you you’re “fine”, “I only prescribe Synthroid” or “your thyroid labs are normal”, fire them and get a new one immediately. I am on my 11th endocrinologist in two years. We need the best care possible. Yet I find that so many endocrinologists these days are not so knowledgeable after all. I won’t give up and neither should you!