Kayla's thyroid story
Kayla has kindly written this week's blog to share her thyroid cancer healing story with us. She has such a brave spirit and shows us the importance of advocating for our health - if something feels off, we should speak up! Read her inspirational story below.
My name is Kayla, at the young age of 19 years old, I was diagnosed with Thyroid cancer. The cancer was found early, and I have my self to thank. I persisted to advocate for myself knowing that something was not right. I took it upon my self to find a new doctor outside of the pediatrician’s office I had been used to. I found a new family nurse practitioner and I went to her office with the compliant of general malaise and fatigue. She ordered blood work, everything looked ok. She told me to get more rest, exercise and eat better. I followed her advice, nothing changed, I went back. This next time I ensured her, something is not right, and now I have ear pain on the left, and sometimes neck pain, still while feeling generally unwell, and fatigued. Could it be lupus? I asked, as this is something one of my parents has. At this point, she was not taking me seriously, she began to give me the advice of finding someone to talk to. She thought I was depressed. She did not believe I was sick. She finally felt my neck and noticed it felt enlarged. I asked her if we could have someone look at my neck more closely. She then ordered an ultrasound. During the ultrasound, a nodule was noted on the thyroid bed. I then went for a needle biopsy; the pathologists viewed the biopsy and noted the nodule to be “suspicious” of papillary thyroid cancer. The nurse practitioner called me with these results and provided me with the names of Endocrine doctors in my area. I saw an endocrinologist and surgery was recommended to remove the suspicious nodule. I ended up switching institutions to a hospital who had a surgeon who specialized in thyroid cancer surgery. The nurse practitioner who did not believe the way I was feeling called to follow up, left voicemails apologizing, and attempted to wish me well. I never called back, I held a grudge, I was an angry young adult.
Fast forward to June of 2014, I was scheduled for my surgery. We drove to the city the hospital was in the night before due to the 2-hour difference from home. I was the first surgery the next day. I received a phone call from the surgeon the morning of the surgery and he stated, “my pathologists have reviewed the biopsy sample, and they believe the chance of cancer is less than 10%”. While that would have been an amazing situation, I disagreed. He suggested that we wait 6 months and complete an ultrasound in 6 months. He felt that if we went in for the surgery that morning and it was not necessary, it would be highly invasive and unnecessary. I disagreed and said I wanted to go through with the surgery. I was a freshman in nursing school. Waiting 6 months would have put me right in the middle of the hardest semester of nursing school. I wanted to get it taken care of now while I was on my summer break. The surgeon agreed to move forward stating that he would just be removing the left side of the thyroid as this is where the nodule was located and it would be too invasive and unnecessary to remove the entire thyroid. Following the surgery, it was noted that papillary thyroid cancer was present throughout both the right and left sides of the thyroid bed as well in lymph nodes. Had I waited the 6 months, who knows how far it would have spread or how much worse it could have been. One month after the surgery to remove the thyroid and the cancer, I completed a round of RAI. RAI requires self-isolation for a total of 4 days. Once this was completed, I had a whole-body uptake scan to ensure the surgery in combination with the RAI was effective. For now, it worked. I was essentially cancer free by the time my junior year of nursing school began. I graduated nursing school with perfect attendance receiving the attendance award from the school’s administrators despite the challenges that had come my way.
In November of 2016, while working my first RN job, I was diagnosed with recurrent thyroid cancer in the lymph nodes of my neck. In November of 2016, I underwent surgery a second time, this time it was for a left radical neck dissection. Following surgery this time, I opted out of the RAI treatment. Given that RAI is excreted through urine and saliva, I was scared this was going to affect my ability to have kids in the future. So far, since my last surgery in 2016, I have not received any recurrence diagnoses. I have reactive lymph nodes on the left side that do not ever go away, we monitor these nodes by ultrasound every year and I have blood work regularly. I am currently taking Levothyroxine for T4 replacement. It was not until this year, that it was brought to my attention that my thyroid levels reflect those of an 80-year-old. I was placed on a T3 replacement called Liothyronine made by a compound pharmacy to help regulate my levels to get them to where I should be as a 26-year-old female. It was never brought to my attention until now that when your thyroid is removed, and doctors place you on Synthroid (Levothyroxine) this only replaces the T4 and it is with hope that it will trick your body to produce the T3 hormone, however, this was not the case for me. The thyroid is complex and there are many factors that aid in allowing your body to function properly with and without a thyroid. We should be able to rely on medical professionals to provide us with the necessary information to stay healthy and be well. Unfortunately, it is not always the case, we must do our own homework, and speak up to advocate for ourselves. May this serve as motivation to always ask as many questions necessary until you feel comfortable moving forward with your care and daily life!
My current thyroid doctor in Charleston, SC is incredible. The way she provides care to me just makes sense. I get my blood work done at least a week prior to appointments with her. At each visit we discuss my thyroid levels. She draws pictures on her tablet to make things easy to understand, and she gives me options with very through explanations. She completes ultrasounds right in her office and talks to me throughout and explains what she sees. We also continue to monitor my thyroglobulin level which would be elevated in the presence of cancerous thyroid cells.
To stay healthy, I follow the medication regimen daily. I make sure to take both thyroid medications in the morning with plenty of water on an empty stomach. I do not eat for at least one hour after taking the medications. I also use essential oils daily to stay well and feel healthy. I also take a capsule called inner defense which helps the immune system to stay strong. I drink a lot of water daily, usually with a lemon, and take a women’s multivitamin. If I have any neck pain from the swollen reactive lymph nodes, I used a CBD ointment on that portion of my neck to soothe the ache.
5 quick questions from Dani:
1. If you could go back to yourself at the time you got diagnosed - knowing what you know now - what is one thing you would say to yourself?
If I could go back to myself at the time I was diagnoses with thyroid cancer, I would tell myself that I am extremely proud of my 19-year-old self for speaking up when my body did not feel right.
2. Tell me one thing you have learnt out of this experience which has helped you to grow?
Being a Registered Nurse myself, and a current Nurse Practitioner student, I have learned how not to treat patients seeking care because they believe they are unwell. Another thing I have learned throughout my thyroid cancer journey which has helped me to grow is that, no one, not anyone, can tell you how you feel. Only YOU know your body best. YOU must speak up and advocate for changes for the things that are making you feel unwell. You are your voice, your strength, and your purpose. If you are a mother, father, wife, husband, sister, brother, friend etc., do all the individuals in your life a favor and speak up when you feel off! Those around you will be ok with you taking time away from them so you can get better to be around them longer!
3. Who has been your biggest support throughout this journey?
My parents, and my sister have been there through it all. My mother made it to every appointment I had for the first 2 years of my journey. No matter when or why I call her, she is always there to lift my spirits back up. She has been there for every milestone, biopsies, surgeries, treatments, scans, lab work, recurrence, remission, everything. I owe her the world.
4. What are your top three books or podcasts (or other resources) that especially helped you in your healing journey?
Top three books or podcasts that have helped me in my healing journey are, The Thyroid Connection by Amy Myers, Medical Medium Thyroid Healing by Anthony William, and the Daily wellness station on Spotify.
5. What is your favourite healing mantra / affirmation?
My favorite healing mantra/affirmation is “Time heals nothing unless we as individuals also move forward with the passing time”
Kayla Chevalier, 26. BSN, RN. FNP-Student
Aspiring to make a difference and to be your motivation for change and growth.