Not Your Normal Thyroid Cancer Diagnosis Story – Diagnosis Part 2

“My endocrinologist told me I had Thyroid Cancer after doing an ultrasound, and although her diagnosis turned out to be correct, I want to be clear that it’s not normal for a doctor to look at your neck and then tell you that you have cancer.”

My case was unique. I had 21 malignant nodules in my neck. There was cancer on my thyroid, in my vocal chords, and in my lymph nodes. By the time I saw an Endocrinologist, my neck was so filled with lumps it was hard to find a comfortable sleeping position at night. So when my experienced Endo saw multiple nodules in my neck, my guess is she figured, “if it looks like a duck…and quacks like a duck…it’s cancer.”

I can feel you judging me…I can feel you thinking, “Well why the hell did you walk around for years with lumps in your neck, you damn idiot! How could you not know you had cancer!?!?” And I can see why you’re thinking that, but hold on, because that’s not what happened.

I had been feeling tired for years, and I had actively seen multiple doctors. I was misdiagnosed with all kinds of things – Celiac Disease, Generalized Anxiety Disorder, Lactose Intolerance, Fructose Malabsorption, Allergies, and more – I tried a gluten-free diet, yoga, a lactose free diet, a paleo diet, acupuncture, and all kinds of different medications from herbal remedies, to sleeping pills, to anti-anxiety meds, to birth control pills. But my blood tests always came by normal, my BMI was normal, cholesterol, blood pressure, everything pointed to my being healthy. I didn’t drink, I didn’t smoke, I didn’t do drugs. On paper I was super healthy…except I knew I wasn’t.

I even started seeing a psychiatrist because I thought I might be crazy – all the data pointed to me being perfectly fit, and yet I felt sick and tired all the time. “Was this a mental disorder?”, I wondered. My psychiatrist confirmed my sanity – aside from a touch of the worry-monster and overachiever syndrome (I just made that up).

Thyroid cancer is a very slow-growing cancer, and the symptoms of thyroid disease are non-specific, meaning your thyroid disease symptom could lead your doctor to diagnose you with many other ailments before it occurs to them to test your thyroid. For example, fatigue – hundreds of things could cause fatigue – stress, poor diet, lack of sleep, anxiety, depression, viral infections, jet lag, etc., etc., etc. I was walking around with fatigue, but no one thought to check my thyroid levels. The most specific symptom of Thyroid Cancer is a lump in your neck. But even that can be hard to find because there are so many muscles in your neck that can hide the cancerous nodules.

My lumps appeared suddenly, and all at once. This is my experience. It’s hard to believe, but it’s true in my case. You see, I had been feeling tired and getting sick a lot so I had started living like a nun. I went to work, after work I went to sleep – and that was my life. I didn’t drink alcohol – that made me sick. I didn’t stay out late – that made me sick. I didn’t eat junk food – that made me sick. It was like I was living in a self-inflicted bubble as a way to protect myself from infections.

Until one day, my best friend invited me to accompany her on an all-expenses paid trip to South Africa! Um…yes please! And suddenly I was living like my old self again! I stayed up all night, I drank, I pet baby lions (okay that was new), I hooked-up with a cute guy, I went full force…I was like a child who had just left the home of her over protective parents, and went bat-shit crazy party animal! I had a blast! But when I got home, the fun suddenly ended.

I was so exhausted I could barely get out of bed in the morning. It was like I had been shot by a tranquilizer gun, and was fighting through fatigue and brain fog to get to work every day. And suddenly there were these lumps in my neck. No one could see them, but I could feel them.

My doctor explained that it’s either one of two things. Thyroid cancer tends to be very slow-growing, so I’ve likely had it for many years, and it finally passed a threshold where I could feel the cancer nodules in my neck. Alternatively, I could have a very aggressive form of Thyroid Cancer that is rare, but spreads quickly. The not knowing is annoying!

According to my doctors it is unlikely that my travel induced overexertion’s had anything to do with the onset of my “lumpy neck” and “sudden stupor”. Who knows.

For me, it felt like I had been sick for a long time, I pushed myself over the edge (while having tons of fun – I hope to get back to South Africa again!), and the disease took advantage.

No, simply doing an ultrasound is not the proper way to diagnosis Thyroid Cancer. Your doctor needs to take a biopsy of the suspicious nodule (or nodules) using ultrasound guided fine needle aspiration. The biopsy is then sent to a lab, where it is examined under a microscope to determine if the cells are cancerous.

You want to stick needles in my neck? Sure, why not? So I returned the next day with a friend by my side to have my nodules biopsied. Cancer is not a solo sport – do not go through it alone. Bring your friends to your appointments! It’s the only way to do cancer!

To be continued…

Symptoms of a Thyroid Nodule:
– Thyroid nodules are very common. Most are benign (not cancerous).
– Less than 5% of thyroid nodules in adults are cancerous.  In children, 20% to 30% of thyroid nodules are proven to be cancerous.
– Thyroid cancer is usually painless and without symptoms in its early stages.
– Unless there is an obvious neck mass that can be seen, most nodules are detected by chance during a routine physical examination or during a doctor visit for an unrelated purpose.

Some symptoms that may appear include:
Hoarseness that has no known cause and does not go away
Difficulty breathing or shortness of breath
Difficulty swallowing or an unusual sensation (a “lump”) when swallowing
Nodule (lump) or growth in the neck
An abnormally large lymph node (a “swollen gland”) that fails to spontaneously shrink over a few months’ time

Steps in evaluating a thyroid nodule may include:
– Physical examination. This should include a laryngeal exam (checking the vocal cords).
– Neck ultrasound
– Fine needle aspiration (FNA) biopsy, often under ultrasound guidance
– Thyroid function lab tests—blood tests
– Chest X-ray
– CT (computerized tomography) without iodine contrast—or other imaging techniques
– Thyroid scan with low-dose radioactive iodine or technetium
– Other blood testing involving molecular markers, for patients with indeterminate thyroid nodules

Points to keep in mind:
– Your doctor will determine the diagnostic tools to use for you. Don’t hesitate to ask questions about the merits of each tool.
– The fine needle aspiration (FNA) is the most reliable way to determine whether a nodule is benign, definitely cancerous, or possibly cancerous.
– The FNA cannot always determine whether cancer is definitely present. In this situation, the tissue analysis after thyroid surgery is used to determine the diagnosis.


What is endocrinology and what types of conditions do Endocrinologists treat?
Endocrinology is the complex study of hormones and their actions and disorders in the body. Hormones and the glands that produce them control activities in the body like metabolism, reproduction, food absorption and utilization, growth and development etc.

Hormones also control the way an organism responds to their surroundings and help by providing adequate energy for various functions. The glands that make up the endocrine system include the pineal, hypothalamus, pituitary, thyroid, parathyroid, thymus, adrenals, pancreas, ovaries and testes.

Some conditions treated by Endocrinologists include:
– Menopause
– Diabetes
– Metabolic disorders
– Lack of growth
– Osteoporosis
– Thyroid diseases
– Cancers of the endocrine glands
– Over or under production of hormones
– Cholesterol disorders
– Hypertension
– Infertility

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