In 1993, I was 18, I did not have a pediatrician growing up nor did I visit the doctor for much of my first 18 years of life. This was about to change.
At my first doctor’s visit as an adult, I was inquiring on why I had only had 1 menstrual cycle in a 12 month span; the doctor revealed to me that my thyroid lab results were abnormal.
My heart sank. My throw tightened.
“As a result of these levels, this is why you have not had a menstrual cycle and it is more than likely you will have a hard time conceiving when you are ready to have children. You are scheduled to have a Thyroid Scan and Uptake, and follow up with this doctor, she’s an endocrinologist.” He wrote her name on his notepad, tore the note from the top and handed it to me and said, “she’s a specialist and she will be able to help you”.
My thought process went something like: Help me? What does he mean by that? What is a thyroid? I have never heard of this body part. Am I going to die? At the time, it was probably a good thing I did not have access to what we then called, the World Wide Web (Internet), because my future self Googled every little test result increasing my already anxiety ridden mind.
I went to the Thyroid Scan & Uptake appointment, swallowed a radiotracer pill and they performed the test. My endocrinologist explained the results to me, basically my thyroid was 4 times the size of a normal thyroid and it was not functioning properly; I had Hashimoto’s disease (an autoimmune disease that damages the thyroid gland). I would have to take thyroid medication for the rest of my life. She requested that I schedule a biopsy and informed me that I need to take my medication daily and return for lab work in 6 weeks. The doctor suggested that I let my mom and any sisters know of my diagnosis, so that they can have lab work done to check their levels, as the disease / condition can be hereditary.
My mom was diagnosed with hypothyroidism shortly after.
Though I did not schedule the biopsy, I did take the medication. At my return 6 weeks later, my levels were abnormal; the doctor made a dose adjustment and asked me to return in 6 weeks for labs. This cycle continued...
During my first 2 pregnancies, I took my thyroid medication, and had lab work done every 6 weeks to be sure my levels remained in tact. It seemed my levels were the most normal during my pregnancies.
After my second child was born, I grew tired of monitoring my thyroid; I stopped going for labs, taking the thyroid medication, and I stopped going to the doctor. I was chasing a 4 year old and caring for a newborn, I was far from taking care of myself at this stage. [Hindsight, why do women do this to themselves? It was then that I needed the most care.]
My health began to decline. Since high school, I always wore a size 10 or 12, but at this point, I was down to a size 5. The thinnest I had ever been.
After struggling with “thick curviness” my whole life … I was loving my new size! But family and friends were commenting negatively on my new look… and most wondered if I was ill. After hearing this a few times, I went to the doctor, and because I always saw a different endocrinologist, the doctor did not have a chart to compare results to.
This doctor ordered lab work, and discovered my levels indicated Graves (autoimmune), hyperthyroidism. I explained I was originally diagnosed with Hashimoto’s and my levels usually indicated hypothyroidism. He brushed this off, stating either I was mistaken, or the original diagnosis was a mistake. He went on to explain that it is quite unusual to flip between the two.
During my neck exam, he found an abnormality and ordered an ultrasound. The ultrasound indicated a nodule. A biopsy was ordered, and I did not return. Yes, you read that right, I did not return to have the biopsy.
After my 3rd pregnancy, I had several abdominal / vaginal surgeries including a hysterectomy. I was back in hypothyroidism mode, and back on the medication.
By 2009, I was struggling with depression, weight gain, and not feeling well. I went to another endocrinologist to have the infamous biopsy. I had a reaction during the procedure and as a result, the biopsy was not successful. After what felt like a nightmare, I decided I was going to ignore my symptoms.
But of course, my symptoms persisted, so this time, I went to visit the endocrinology department at Emory Hospital, requesting the head of the endocrinology clinic as my doctor.
He ordered lab work, and after reading the unsuccessful biopsy report, he ordered an MRI. An MRI of the neck consists of wearing what they call a head coil. (Imagine locking a football helmet over your head and neck…oh and you cannot take it off alone… you need an extra pair of hands to remove it! Once it is locked, they slip you into an MRI tunnel.) My mom was with me for this test. It was a struggle. This 45 minute procedure seemed like 3 hours.
The results were shared with the clinic board. My doctor’s response: he did not like the look of one of the many nodules, and the board concurred. He went on to explain, that because of the reaction from the biopsy, and the results of this MRI, he felt it was important to have the right side of my thyroid removed. He recommended a surgeon and we scheduled the surgery.
The day of the surgery, my surgeon explained that the scar from the partial thyroidectomy would produce a 1” scar.
In recovery, I woke up nervous to look in the mirror. I raised the mirror to view my reflection, and discovered my scar was 3” long. I felt embarrassed, ashamed and I wanted to go back in time, to decline this surgery.
Image below is my neck scar.
An example of 1mm: This magnetic cube is 1mm in size.
A week later the doctor explained the results; a 1mm (tiny) papillary carcinoma was found.
The doctor went on to say if he were to have cancer, this is the one he would want. He proceeded to ask me if I would like to have the other side of my thyroid removed-- the board and my doctor agreed with him, that the second surgery would be up to me.
The following week, I was back in the hospital having the other side removed.
This side, benign.
I was very lucky that they did not have to make my 3” scar any larger with the second surgery, and I did not require radiation.
Prior to these surgeries, I had left the company I was working with. As a result I did not have health insurance for myself. My new goal after these surgeries was to receive a clean bill of health so I could purchase affordable health insurance. I diligently followed doctor’s orders, to receive this clean bill.
My follow up care after the surgeries included ultrasounds and lab work every 3-6 months. It was a roller coaster full of emotions including anxiety and fear, as several of the ultrasounds required my doctor to share them with the board to be sure that what he was seeing did not require additional treatment.
This cycle continued for 5 years.
As my oldest daughter approached her 11th birthday, I had her pediatrician check her thyroid levels. The results were abnormal and she began her thyroid medication. Because of my history, she was also seen by a pediatric endocrinologist, her diagnosis: hypothyroidism & Hashimoto’s Disease as well. We followed up with the pediatric endocrinologist every 6 months through her 16th birthday.
I advocated my daughter's care. See how I did that? What I should have done my own health for so many years!
Meanwhile after one of my follow up visits, the doctor called, indicating something more concerning than usual. He wanted a neck MRI; remember the football helmet?
I had the MRI done, and the doctor called with the results, “The MRI looks good… No need to come back for anymore tests, you’re out of the woods.”
And after all of these years, you would think I would have been ecstatic to hear this. I should have been so happy. However, I felt like I could not believe him or the board. I am not sure what I expected from them. He had been my doctor for 5 consistent years. This statement was not enough for me. I needed someone else to tell me I was okay.
My husband suggested a second opinion, but with this facility being Emory, I did not know where to go from there.
A few months went by, then one evening, while at a charity event with my husband, I am introduced to a friend of his from college, she’s a doctor at MD Anderson. While we were chatting, her husband noticed my thyroid scar. With hesitation, he asked me about it. His occupation? He just happens to be the top endocrinologist in the world, also with MD Anderson! We chat about my 5 years of more lows then I care to count. He says, “come see us”.
I schedule a flight, and a hotel, coordinate to see our niece (who lives in the area), meet with the endocrinology department at MD Anderson in Houston and I am back home within 48 hours.
Two weeks later I receive a certificate in the mail from MD Anderson: “Congratulations! You are 5 years cancer free!”
Since that initial cancer diagnosis, I didn’t feel I could relate to others that have had to undergo chemotherapy or radiation, I never truly suffered, so how could I claim to be a cancer survivor? For me, it was cut out and gone. My surgeon said, “it was so tiny”; “it’s the best cancer to get”; “if I had to get one, this is the one I would want.”
I was always offended by his perspective. I was ashamed by his statements.
What I wanted to hear from him: “in the big picture, it could be so much worse; you’ve got this, and we will be sure you are cancer free!”
But if you take a moment to dissect what he said vs what I thought I needed to hear from him, he did in fact say the same thing in his own way. My interpretation was skewed because my emotional bubble was infiltrated reacting in victim mode. My feelings, my lifetime of trauma, this victim role I played, did not allow myself to hear the true meaning behind his sentences.
I can tell you, I was a terrified girl trapped in a woman’s body struggling from trauma that I did not seek help for, suffering from rotten relationships that added to the trauma. Raising my kids and not taking care of myself: physically or emotionally.
Today, I stand with a new point of view, a different perspective, then that girl from over a decade ago. I have confidence, a new strength, self-worth and self-esteem that I did not have back then.
I did have cancer, it was a very treatable cancer, and today I am cancer free.
I AM A cancer SURVIVOR.
September is Thyroid Cancer Awareness Month
- Check your neck: https://www.thyca.org/download/document/287/NeckCheck
- Newly Diagnosed: https://www.thyca.org/newly-diagnosed/
- Support Groups: https://www.thyca.org/sg/
Glossary of terms fromwww.lexico.com/en/definition…. :
- Thyroid: a large ductless gland in the neck which secretes hormones regulating growth and development through the rate of metabolism
- Hypothyroidism: Abnormally low activity of the thyroid gland, resulting in retardation of growth and mental development in children and adults
- Hyperthyroidism: Overactivity of the thyroid gland, resulting in a rapid heartbeat and an increased rate of metabolism.
- Goiter: A swelling of the neck resulting from enlargement of the thyroid gland.
- Nodule: A small swelling or aggregation of cells in the body, especially an abnormal one.
- Graves’ Disease: A swelling of the neck and protrusion of the eyes resulting from an overactive thyroid gland.
- Hashimoto’s Disease: An autoimmune disease causing chronic inflammation and consequential failure of the thyroid gland.
head coil image from: https://myonebigfight.wordpress.com/2011/09/20/mri/