Voices Across America

There is no “good” cancer


State: New York
Congressional District: NY03


Cancer, Endocrine Disease

Issues and Challenges

Vanessa has encountered: Copay Issues, Caregiving

My Story

In 2013, at the age of 26, I heard the words no one ever wants to hear: You have cancer. Thyroid cancer, to be precise. I didn’t have any symptoms or indications that something was wrong, nor was there any history of thyroid disease or cancer in my family. Instead, my diagnosis was discovered due to a thorough gynecologist who asked if he could perform a neck check as part of my annual visit. That quick check revealed a nodule on the right side of my thyroid and the beginning of my journey with thyroid cancer.

What began with a visit to my gynecologist, quickly morphed into trips for blood work, a neck ultrasound, a visit to an endocrinologist, and eventually, a fine needle aspiration biopsy. In the days and weeks that followed my diagnosis, I scoured websites for information, joined online groups for support, and tried to make a plan for surgery, all while deciphering how I went from a healthy 26-year-old one minute to a cancer patient the next.

As I struggled to make sense of my new reality, a word of caution came from the endocrinologist: Don’t turn this diagnosis into a research project, he said. But the more information I found coupled with the horror stories I came across from other patients, made the reality that I was so desperate to make disappear harder to ignore.

Weeks passed as I assembled my questions for head and neck surgeons and one by one had consultations with the three likely operators of my future. The endocrinologist’s words seemed like a haunting reminder of my reality, but one that I felt that I was in control of. With each consultation, I grew stronger in my ability to advocate for myself and speak up if something didn’t sound right.

But then came decision time—which surgeon would I choose? After weighing my options, I decided to move forward with a head and neck surgeon at Weill Cornell in New York City, an hour away from my home on Long Island. His calm and reassuring demeanor, combined with his willingness to listen to my concerns as the patient, won me over.

On June 17, 2013, I underwent a total thyroidectomy with central neck dissection and lymph node removal at Weill Cornell. I was met with many emotions as the doors to the operating room ushered me inside, but mostly, I was looking forward to closing the chapter and beginning the next.

After a successful surgery and recovery, I met with my surgeon for a post-operative exam. It was there I learned that of the six lymph nodes removed, one showed signs that the cancer had spread. Together, with my surgeon by my side, we decided to adopt a wait-and-watch approach. If my blood work indicated a potential recurrence at any time, we would do a course of radioactive iodine treatment to ablate any remaining thyroid tissue and kill the cancer cells.

By the end of June 2013, I was officially a cancer survivor. But, now what? I learned so much valuable information during my thyroid cancer journey and grew as a person. I knew I wanted to give back and help others who may be facing a similar experience, so I decided to start a lifestyle and wellness blog where I could tell my story and provide others with resources to help them on their journey. I launched Living in Steil (pronounced ‘style’) in February 2014, and what started as a cathartic outlet for myself turned into a career. Eventually, readers reached out to me on social media to ask for advice or to share their own stories with me. I knew that I had found my calling in patient advocacy.

While my story had a happy ending, I’m still reminded of the journey every morning when I wake up and take a small synthetic thyroid hormone replacement pill that I will be on for the rest of my life. I still have scanxiety (the very real fear cancer patients and survivors face when they have to go for a scan). And, I’m still thankful for my status as a survivor and know that it can be taken away in an instant. I’ve faced potential recurrences over the years, which resurface old wounds, and I’ve had to educate others about why thyroid cancer should not be considered the “good cancer.”

My experience with thyroid cancer in my 20s didn’t just shape me personally, it shaped me professionally, too. My introduction to the world of advocacy began when I became a patient and later a caregiver to my grandmother. Those experiences led me to dedicate my life to this work and become a Board-Certified Patient Advocate to help others be their own advocates in a healthcare setting. After a decade of being both a patient and a caregiver, I co-founded a new venture called The Hospital Bar, a community that’s raising the bar for healthcare advocacy to benefit caregivers of all kinds, because eventually, everyone will either need care or become a caregiver.

In June 2023, I will be a ten year thyroid cancer survivor. It’s hard to believe that a decade has gone by, yet in some ways, it feels like it all just happened yesterday. Being able to share my story and interact with other patients and survivors continues to be a fulfilling and rewarding experience, and one that I hope makes a difference in many people's lives for years to come.

My Motivation and Inspiration

When I was first diagnosed with thyroid cancer, those both in and out of the medical community often would say to me, "Well, at least you got the 'good' cancer." This line often gave me pause, as to me, the 'good' cancer is the one you don't get. In my work as a patient advocate, I am motivated to dispel this myth that there is such a thing as a 'good' cancer, as it diminishes the patient's experience and reality. My goal through sharing my story has always been to provide hope and resources for other patients, and to offer perspective on what life is like after thyroid cancer.

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