Life as a Thyroid Cancer Survivor: One Millennial, Vanessa Steil’s Story

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By: Melissa Schenkman, MPH, MSJ

What Is the Thyroid Cancer Survival Rate?

Vanessa Steil

When 26-year-old Vanessa Steil was diagnosed with thyroid cancer, the one thing she heard when she told people was: “Well, at least you got the good cancer.”

In terms of survival rates compared to some other cancers, and depending on the type of thyroid cancer and its stage, they would be right.  

According to the National Cancer Institute, there is a 98.4% relative survival rate of thyroid cancer for patients at five years after they have been diagnosed and treated for thyroid cancer—meaning that percentage of patients were estimated to be able to survive the effects of their cancer. The rate is similar for cancers that spread to lymph nodes, but decreases to a 53% survival rate for those whose cancer spreads to other organs.

Overall these survival estimates provide much optimism, but the public may have a misconception of what the quality of life after thyroid cancer looks like and, worse yet, what it actually feels like to be a thyroid cancer survivor.

“There is nothing ‘good’ about thyroid cancer. The ‘good’ cancer is the one you don’t get,” said Steil, who was healthy and symptom-free at the time of her diagnosis in 2013. So how did she get diagnosed?

A Gynecologist Diagnoses Thyroid Cancer

Always health conscious, Steil was a figure skater turned avid equestrian growing up and actively worked out as an adult. Like so many young women, she was very mindful of preventive health regarding early detection of disease, especially since she is a caregiver to her grandmother, who is a two-time breast cancer survivor.   

But a neck check never made it onto Steil’s radar. It was not until she made an appointment with a new gynecologist for her annual exam that, that it all changed.

He asked if he could perform a neck check, which surprised her, as she had been under the care of an Ear, Nose, and Throat specialist for a decade, who never examined her neck. Afterwards, she was left speechless when the gynecologist said, “Has anyone ever told you that you have a nodule on the right side of your thyroid?” Of course, the answer was “No.” Before Steil knew it she was scheduling appointments for blood work, a neck ultrasound, and researching endocrinologists.

When she went to Head and Neck Surgeons for consultations, she thought they would be surprised that a gynecologist found her nodule. They were not.

“This seemed like a routine occurrence in their world. One nurse even mentioned to me that since many young adults do not see a primary care physician, but tend to see a gynecologist on an annual basis, that these doctors perform neck checks more often as part of the exam,” Steil said.

A good thing to hear, and something we hope means that more types of physicians will have thyroid nodules and cancer on their radar. Doctors who are often the initial points of contact in the healthcare system (internists, family medicine physicians, and gynecologists), are more likely to catch such cancers, even in young people. This type of screening is so important since thyroid cancer is commonly diagnosed at a younger age than most other adult cancers, according to the American Cancer Society.

Steil successfully underwent a total thyroidectomy with central neck dissection and lymph node removal in June 2017. Her entire thyroid cancer experience led her to a career as a Board-Certified Patient Advocate, one who advises all newly diagnosed patients to do their research.

Steil, a Board-Certified Patient Advocate is also the Founder & Creative Director of Living in Steil.

Paging Dr. Google for Thyroid Cancer Resources

While Steil’s endocrinologist warned her not to turn her diagnosis into a research project, that’s precisely what she did. After all, at diagnosis, she knew absolutely nothing about thyroid cancer, let alone what her thyroid did and how important its function was.

How did her search turn out?

“Not only was I unable to find resources geared toward millennials, but it seemed like every resource I found was flooded with horror stories about the procedure, the daily synthetic thyroid hormone replacement that I would need to take, or just how the patient’s life was never the same post-surgery,” said Steil, now 35, and nine years into cancer survivorship.

Everything she read really terrified her about what the rest of her life would be like. It took a long time before she could connect with any other millennial-aged thyroid cancer survivors who could actually shed light on the diagnosis and treatment.

That’s why she advises patients to find reputable sites—academic institutions, disease-specific non-profits, and of course, YMyHealth!—as a first step in their journey.

Quality of Life After Thyroid Cancer

A cancer diagnosis is scary at any age, Steil said, but especially when you are in your 20s, 30s, or early 40s, and have so much of your life ahead of you.

Steil making her health a priority despite a hectic millennial schedule.

One thing that people do not realize is that thyroid cancer treatment and thyroid cancer survival go well beyond surgically removing your cancer. It’s a new way of living that will now affect your life every day.

For almost every patient, the thyroid gland is removed or disabled. After that, you typically take a pill every day to replace the thyroid hormone that would have been made by the thyroid gland. Some patients need to undergo radioactive iodine treatment following surgery. The treatment starts with a special low-iodine diet, then injections of thyroglobulin to stimulate the system, and finally a radioactive iodine treatment to irradiate any remaining thyroid cancer cells, followed by a full body scan to determine if there are any hidden pockets of disease.  

That’s why during her diagnosis when she was told she had a “good cancer,” it truly knocked the wind out of her lungs.

“If I do nothing else as a patient advocate, I would at least like to dispel the myth that thyroid cancer is a ‘good’ cancer. It is not only insensitive to a newly diagnosed patient, but it also makes light of their situation,” Steil said. “Your life is changed with a cancer diagnosis, and as a thyroid cancer survivor you will forever be dependent on a small, round daily pill to function—a permanent reminder of what you went through.”

For the rest of your life after thyroid cancer, you will have to be routinely monitored by an endocrinologist, a head and neck surgeon, and possibly even a radiation oncologist. You must get blood work on a regular basis to optimize or maintain the dose of synthetic thyroid hormone and undergo bi-annual or annual thyroid ultrasounds.

Advice for Fellow Millennials

It’s easy to get consumed by worse-case scenarios when you’re diagnosed, Steil told me. Her advice: Be your own advocate! You know your body best, so it’s in your own interest to actively be a part of the conversation with your care team when it comes to your health.

Also, take advantage of support groups and don’t be afraid to reach out to other advocates. There are so many people who share their stories on Instagram and Twitter, including Steil (she says, hit her up, if you like!)

“Remember, thyroid cancer is a chapter of your life, not the whole story, and you get to write the ending,” Steil said. “Your life will be different after your diagnosis, but there is still a whole world out there for you to experience.”

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