CARLY’S STORY

Three years ago, when I was 27 years old, I was feeling really tired. I had recently started graduate school to study health communication at Boston University and I thought that my tiredness was normal for a college student who was also working full-time. During a routine physical check-up my primary care doctor felt a lump in my throat. They ordered an ultrasound and they found a tumor in my thyroid, which was biopsied by laboratory staff and the immediate result from the pathologist was cancer, more specifically: Stage 1 Papillary Thyroid Cancer, Classical Variant.

Cancer is one of the most feared diseases. Everyone is affected by it in some way, but no one really imagines getting it themselves. So imagine hearing that you got the “good” cancer, a commonly used term for thyroid cancer. When I was diagnosed, I felt aloof and I numbly accepted my cancer diagnosis as part of my life. I was ready to do what I had to do to manage my cancer. Fast forward to today and I am cancer free! I do still depend heavily on the lab in my follow up care to make sure that the cancer does not come back. If I don’t have labs done, I don’t know if my body is responding properly to treatment. That is why I encourage other patients and caregivers to understand and ask questions about their labs, including what they are, what they’re for, and what the results mean as far as survivorship goes.

Since her diagnosis, Carly has become an active patient advocate for adolescents and young adults with cancer. She is also a scientific data analyst who examines clinical trial protocols and translates the information into lay-friendly language that patients can understand to help them find clinical trials that are right for them. She lives and breathes patient advocacy, both in her work and by sharing her cancer story with others. Carly’s advice to other patients is to ask questions and find a doctor that understands you. She also emphasizes the importance of having a caregiver by your side and to never be ashamed to ask questions about your diagnosis to educate yourself.

If you’re a thyroid cancer patient, whether newly-diagnosed, in treatment, no evidence of disease (NED), or anywhere in between, educate and advocate for yourselves. Find doctors who take the time to understand your wants and needs as an individual human being. Never think that your cancer is “less than,” because it matters”

CAROLINE’S STORY

“As a clinical laboratory scientist, I know how impactful the work of laboratory professionals and pathologists is.”

Caroline was diagnosed with Stage 3 Papillary Thyroid Carcinoma and Hyperparathyroidism. When she received her diagnosis, she was working as a point of care coordinator in the clinical laboratory of a community hospital, and she is a licensed clinical laboratory scientist. Her familiarity with the lab helped her navigate her diagnosis and treatment.

Prior to being diagnosed, she was often tired, had trouble concentrating, some difficulty swallowing, and she noticed her voice had grown weaker. She went to the doctor to investigate, and they ordered a series of blood tests that showed elevated levels of calcium. Her doctor ordered an ultrasound of her thyroid and referred her to an endocrinologist. She was diagnosed with hyperparathyroidism, but the doctors said that her ultrasound showed nothing out of the ordinary and she should just continue to monitor her symptoms.

Even though the doctors were reassuring, Caroline was still concerned about her symptoms and felt that something else was off. She had to wait several months for an appointment with a highly respected endocrinologist, a doctor specializing in hormone-related health issues, but was very glad she did. She got a second ultrasound, which showed a suspicious nodule on her thyroid. The endocrinologist ordered a biopsy on the nodule as well as another round of lab tests to make sure that her elevated calcium levels were not caused by her blood pressure medication.

“I felt like this doctor was listening to me, working with me, walking me through all the lab test results and ensuring I had all the lab information needed to make informed decisions about my body.”

Pathologists and laboratory professional analyzed her blood and biopsy and they diagnosed Caroline with papillary thyroid cancer in addition to her previously diagnosed hyperparathyroidism. The tumor on her thyroid was growing against Caroline’s vocal cords, causing her voice to weaken. Based on her diagnosis, Caroline decided to have surgery to remove both her parathyroid and her thyroid, followed by a round of Radioactive Iodine Therapy (RAI). She completed a second round of RAI a year later to fully eradicate the cancer.

“Without timely and accurate results to guide my endocrinologist and me, I would not have had the successful outcome that I had. I am so thankful to my thorough endocrinologist, my surgeon, and the laboratory professionals and pathologists who had a role in my diagnosis and treatment. I thank God for them!”

In January 2022, Caroline received a No Evidence of Disease (NED) report from her pathologist but is still being monitored through regular blood tests, ultrasounds, and full body scans. She encourages others to learn about their lab tests and to be their own champion by getting second opinions and advocating for your own health and health care.

“As long as I have lab results to guide my doctors and me, I’m confident that I will have the best possible outcomes.”