In Her Words: Vanessa Steil

Thyroid cancer is the most common endocrine cancer and one of the few that has increased in incidence rates in recent years, in people ranging from children to seniors. That’s why we’re starting September, also known as Thyroid Cancer Awareness Month — a time dedicated to spreading education about early detection, treatment and lifelong monitoring —  with a story about a young thriver whose gynecologist discovered a malignant thyroid nodule during a routine neck exam. 

Vanessa Steil was a driven, healthy 26-year old woman, who was well on her way professionally, when doctors spoke those life-changing words, “You have cancer.” In that moment, life interrupted her plans and directed her towards something bigger…her purpose. Vanessa said, “If I could go back in time and visit that scared girl who thought her life was over, I would tell her that, ‘it was just the beginning.’” She now dedicates her energy, in both her personal and work lives, to helping others on a similar journey and shares her story and health resources on her blog, Living in Steil (pronounced “style”) and on InstagramTo learn more about Vanessa's course of treatment, how she found the best care, what having cancer ultimately taught her and more, read our latest In Her Words interview below.

Photo by: Diana Davis Creative

Name: Vanessa Steil

Age: 34

Location: Long Island, NY

Current Health StatusNo evidence of disease, but routinely monitored

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Tell us about yourself.

I grew up (and still reside) on Long Island, about an hour outside of New York City. As a child, I was very active and loved being outdoors. When I was five years old, I started figure skating, and was instantly a natural on the ice. My parents quickly nurtured my talent and enrolled me in skating lessons, private ice time and competitions. Then, after a day at summer camp, I came home and announced to my parents that I wanted a pony – and that launched me into a decades-long love affair with horses. From the age of eight on, every spare moment I had was spent down at the barn. There was something about the sport – and being surrounded by these majestic creatures – that gave me a sense of peace in my own life. I credit my years as an equestrian with my work ethic, dedication and in some ways, my ability to survive and thrive after receiving a thyroid cancer diagnosis in my mid-20’s.

When I initially went off to The American University in Washington, DC, I had every intention of becoming a lawyer. But life has a way of interrupting your plans sometimes. Eight years after hearing those fateful words, “You have cancer,” I’ve dedicated my personal and professional life to advocating for others. I’ve sat across from doctors and have felt lost and confused and thought, “What’s next?” Now, I share my story through my blog, Living in Steil (pronounced “style”), as a way to offer hope and resources to other patients who find themselves in a similar situation.

Professionally, my diagnosis has been somewhat of a silver lining. It transformed me from someone who was navigating my career options and trying to find my niche in my 20’s, into a person on a mission who is passionate about advocating for others in my 30’s.

Today, I am a Board Certified Patient Advocate and health coach who seeks to empower wellness warriors to learn, grow and heal one post at a time through my blog and social media platforms.

When were you diagnosed with cancer?

I was diagnosed with thyroid cancer in 2013 at the age of 26. It was a complete accidental finding made by the new gynecologist I was seeing. In March, I had gone in for what I thought would be my routine annual exam (fun fact: I almost canceled the appointment because I had a scheduling conflict). Since this was the first time I was seeing this doctor, he asked me a bunch of questions, including, “Do you mind if I perform a neck check?” The question caught me completely off guard, but I agreed. That’s when he discovered that I had a nodule on the right side of my thyroid. I was in disbelief, but not immediately alarmed. In that instant, I remembered that my grandmother’s doctor had discovered a benign nodule on her thyroid that was routinely monitored and I knew of other people who had a similar case. It wasn’t until the gynecologist started rattling off a litany of next steps that I began to grow concerned. Among them, I was to go for blood work, a neck ultrasound and make an appointment for a consultation with an endocrinologist.

A few days went by before I made all of the recommended appointments. Afterward, my gynecologist called me to let me know that my blood work revealed that I had sub-clinical hypothyroidism (meaning, that eventually I would begin to suffer the effects of having an underactive thyroid and would need to take a daily synthetic thyroid hormone replacement medication to help the gland function properly). He also noted that the neck ultrasound detected a nodule greater than 1cm and he recommended I talk to the endocrinologist about undergoing a Fine Needle Aspiration (FNA) biopsy.

A couple of weeks later, I found myself sitting in front of my new endocrinologist. He was polite, thorough and made me feel as comfortable as one could have at that moment. After answering my questions, he sent me on my way for an FNA biopsy and I was off to the next appointment.

What were your first thoughts when you were diagnosed?

I can still remember the moment the endocrinologist, in his monotone voice, told me that I had Papillary Thyroid Carcinoma, the most common type of thyroid cancer. I will never forget what popped into my head next. As I sat across from him, I silently thought, “Well, at least it’s not thyroid cancer.”

But, that was exactly what it was….

A month after the initial appointment with the gynecologist, my worst fears were confirmed. On April 2, 2013, I – along with about 60,220 other Americans that year – was diagnosed with thyroid cancer. Despite the seemingly large number, I felt like a party of one.

How did your friends and family take the news?

I secretly knew that the FNA biopsy was going to confirm a thyroid cancer diagnosis. I can’t quite explain why I felt that way, but I wasn’t not expecting this diagnosis. Still, hearing the words come out of the doctor’s mouth was jarring.

In the early days after my diagnosis (and perhaps for months following), I was only able to tell people that, “It” was thyroid cancer. Putting the words “I have” before the diagnosis made it too personal, too real. To me, it was this mythical thing, not an entity worthy of being named.

Even though I couldn’t quite verbalize my diagnosis, friends and family were supportive and asked what they could do to help. I, like many others, found cancer to be an isolating experience. While I appreciated the good wishes and the concern from those around me, at the end of the day this disease was growing inside my body. I was the one who had to go for tests and to see doctors and ultimately, it would be me on the operating table. There were days where I allowed myself to feel optimistic and then there were the days where my diagnosis was more difficult to endure. And then there were those one-off days where I was sure the diagnosis was somehow a mistake.

Describe your treatment and how you arrived at that course of action.

In June of 2013, I underwent a total thyroidectomy with central neck dissection and lymph node removal at Weill Cornell Medicine in New York City. I always knew that that procedure would be my course of treatment, but it took me some time to feel comfortable with a head and neck surgeon and to find the right treatment facility. It also took me a minute to come to grips with that little nagging voice inside my head that said, “What if this diagnosis isn’t correct?” Denial can be a tricky thing and it takes many forms…but, I digress.

After seeking not one, second opinion, but two, I finally decided to schedule my surgery at Weill Cornell and was ready to close this chapter of my life.

Were you able to work through treatment?

I was fortunate to need little downtime after my thyroidectomy. I was in the process of changing jobs when I was diagnosed and landed a new position mere weeks after my surgery.

Where and how have you found the best care?

Finding the right care team can be tricky and there are a lot of questions patients will need to navigate on their own. That was the part of the cancer journey that I was not prepared for and what led me to become a patient advocate for others. It’s one thing to receive the diagnosis and then you realize that that’s only half of the equation. Questions like, “How do I find a reputable surgeon?” “Where can I turn for support?” and “What will my life look like after surgery?” were all things I had to find answers to.

In the days after my diagnosis, I joined an online support group for patients where I could ask questions and feel connected to others who were going through a similar diagnosis. I was also fortunate to have knowledgeable friends who were able to point me in the right direction. Ultimately, I knew I found the right care team at Weill Cornell the moment I stepped foot inside and everyone from the staff to the surgeon helped to put my mind at ease…and offered me something that hadn’t been so easy to come by – hope.

Have you received any additional support or alternative therapies? If so, what kind, and have they been they beneficial?

My thyroid cancer diagnosis led me to pursue a more holistic lifestyle and to learn about nutrition and functional medicine. After my diagnosis, I enrolled in the Holistic Health Coach Training Program at the Institute for Integrative Nutrition.  As a survivor, I want to give back and work one-on-one with people who are struggling with an ailment and looking to embark on healthier lifestyle habits.

What or who have been your biggest supports? Who makes up your cancer tribe?

My tribe has been, and continues to be, in one word: amazing. From friends who took time off from work to accompany me to doctor’s visits in the City to those who made weekly lunch plans with me to divert my mind from my diagnosis, they all offered me support in their own special way. And then there are those people I’ve met through my social media platforms – most of whom I’ve never encountered in real life. But, they, too, have become a part of my community. From messaging me to ask how I was feeling or following up to see how my last doctor’s appointment went, it’s the people who owe me nothing, but in the end mean everything, who always put a smile on my face.

I was blessed to have the support of family, good friends and an amazing team of doctors at Weill Cornell. But it was the thorough examination conducted by my gynecologist that led to early detection and my diagnosis. To him, I am forever indebted.

What has been one of the most challenging aspects of the experience for you?

For me, the most challenging part of being diagnosed with cancer was feeling  incapable of making a decision that would affect my health and the rest of my life. Everything felt like such a monumental choice, and it was easy to become “paralyzed” in the moment. The “what-ifs,” as I liked to call them, played a large role in my decision-making process, but realizing that I was strong enough to make this decision and could advocate for myself was empowering. 

What is one thing you wish you knew before you were diagnosed?

If I could go back in time and visit that scared 26-year-old girl who thought her life was over, I would tell her that it’s just beginning. Even though she wouldn’t believe it, I would whisper, “You’re going to get through this, and you’re going to be a much stronger person for it.” And when she does get through it, she will finally understand her presence and her purpose.

Is there a particular mantra or inspiration that helps you?

After my thyroid cancer diagnosis, I adopted the mantra: You’re stronger than anything in this world that could impede your path.

If you could offer a woman, who has been newly diagnosed, some words of wisdom for her journey, what would you tell her?

I would advise her to find a community. A community where she can be real and raw and valued and vulnerable. A community that will get her and will take care of her. That community doesn’t need to be local, they just need to be like-minded. That community will become her most important asset as she goes through her cancer journey.

What are you most proud of in your cancer journey?

I’m proud that I didn’t let cancer define me.

I’m proud that I advocated for myself.

I’m proud of my strength (the strength that cancer showed me was already inside of me).

I’m proud of starting my blog and of the community I’ve built.

I’m proud that I’ve become a Board Certified Patient Advocate and health coach, and that I’m making a difference.

Most importantly, I’m proud that I’ve let my cancer diagnosis lead me to find my true purpose in life.

How has cancer affected your outlook on life? On illness?

To know that your health can be taken away at a moment’s notice has a way of putting life in perspective for you in an instant. One minute, I was a healthy 26-year-old, and the next, I was a thyroid cancer patient. My diagnosis taught me not to sweat the little things (which for someone prone to anxiety, isn’t easy) and to start each day with a grateful heart. None of us know how long we have on this Earth or what can happen day-to-day. We should all strive to keep those we love close, tell them often and enjoy each day to its fullest.

How have you changed?

Cancer made me redefine my priorities and reframe what success looks like. To me, life is about, How can I make a difference? How can my story resonate with and inspire someone? That mindset is what led me to become an advocate and it’s what continues to drive me as an eight-year thyroid cancer survivor.