Here’s an example of how the internet and social media are changing healthcare: There’s a small subset of viral social media posts in which a person recently diagnosed with a disease posts before and after diagnosis photos. And in that photo, a signature symptom is obvious for all to see — just not to the person in question at the time.
Recently, in one such post, a glamour shot of British actress Lorna Nickson Brown, now 26, shows a subtle lump at the base of her throat — a symptom of thyroid cancer, which features few hallmarks. Brown is in remission now, but her post drives home an important public health message: You can be sick and not know it, especially when it comes to thyroid cancer.
The thyroid is a butterfly-shaped gland, roughly 3 centimeters wide, located at the base of the throat below the Adam’s apple. Most people are unaware it’s even there, but it’s a vital organ responsible for regulating metabolism.
It’s not uncommon for small nodes or lumps to grow on the gland, and many such growths are benign. But for more than 56,000 Americans a year — mostly women — the growths are cancerous. That’s not to say that every thyroid cancer diagnosis is dire. It remains, by comparison, one of the more treatable cancers. While new diagnoses are skyrocketing, tripling in the last three decades, the rate of death from the disease remains, remarkably, unchanged.
“With most thyroid cancers, we tend to find it on the early side, and the mortality rate is quite low,” explains Ryan H. Sobel, M.D., a surgeon at Johns Hopkins Head and Neck Surgery, located at the Greater Baltimore Medical Center (GBMC) Milton J. Dance Jr. Head and Neck Center. Dr. Sobel specializes in benign and malignant tumors of the head and neck. One reason thyroid cancer is so survivable, he explains, is that the most common types grow slowly.
But because of this, they also can be difficult to detect.
“It’s very subtle,” explains Dr. Sobel. “In the most common presentation, there are no symptoms at all.”
Such is the case for many thyroid cancer survivors. When Shelley Etzine, now 59, was diagnosed in 2008, she simply felt out of sorts. Etzine’s shoulder had been bothering her, but she figured the pain was due to the large bag she lugged across campus each day as director of Towson University’s English Language Center. “I couldn’t really sleep,” she explains. “I was uncomfortable.” When she finally saw a doctor, “he noticed a bump [in the neck] that I had not noticed,” she says. The doctor sent Etzine for a sonogram. “Within a matter of 24 hours, they biopsied it and I was diagnosed immediately.”
For 43-year-old Keri Jowers, a statistician at a Maryland state agency, thyroid cancer was detected almost as a fluke, amid testing and scans related to another critical medical issue: blood clots in her carotid artery. Concerns about her newly diagnosed blood-clotting disease quickly morphed into scans and plans to surgically remove one gland that had two types of thyroid cancer present.
Brittany Avin, who is pursuing a doctorate in biochemistry, cellular and molecular biology at Johns Hopkins Medicine, was just 13 when diagnosed with thyroid cancer nearly 10 years ago. An avid basketball player, she had lost her voice and most people in her life wrote it off as the result of too much enthusiastic yelling on the court. A doctor’s appointment later showed her vocal cords were paralyzed, and further tests revealed the cause was thyroid cancer that had spread to the vocal nerve and into dozens of lymph nodes — astonishing for someone so young and with so few risk factors.
The constellation of symptoms associated with thyroid cancer — small lumps, fatigue, aches and pains, a hoarse voice, trouble swallowing — are easily explained away, if they appear at all. And that’s the problem.
“We try to tell our patients to have a low threshold to seek medical advice,” says Dr. Sobel.
Once thyroid cancer is detected, more tests are done to determine how far it has progressed. The stage determines the course of treatment. However, age has become a determining factor as well.
Recent research shows that cancers behave less aggressively in patients under age 55. Therefore, next year, Dr. Sobel says, the criteria for each stage will be updated.
“This is still a fluid process,” he explains. “On the flipside, if a patient is over 55 years old, there’s a more conventional staging criteria — four stages, depending on the size of tumor, whether it has spread to the lymph nodes.”
“Surgery is the No. 1 treatment for thyroid cancers,” says Dr. Sobel. In most cases, removing one or both sides of the thyroid gland does the trick.
After the thyroidectomy, a pathologist will look for aggressive features, he explains. “If those are present, that’s when we consider adjuvant radioactive iodine therapy.” More aggressive cases may require chemotherapy or other options under clinical trial.
Typically, though, surgery is successful on its own.
Where Johns Hopkins Head and Neck Surgery excels, then, is in experience with thyroid cancer. “The more you do, the better you do. The more you do, the less complications you have,” says Dr. Sobel. “We are a high volume center.”
For thyroid cancer, it’s the difference between a low volume practice treating 5 to 10 cases a year versus 10 to 20 a month, which is what they see at GBMC.
According to Dr. Sobel, the risk of common complications like voice changes or vocal cord problems drops to 4 to 5 percent in a high volume practice, compared to 8 to 10 percent in the literature. Reducing complications matters, he says, especially since the head and neck are vital and complex parts of the body.
Modern technology is on a surgeon’s side.
“The ‘old days’ is still just 10 or 20 years ago for head and neck surgery,” says Dr. Sobel. Back then, protocols called for chemotherapy and radiation up front, surgery required breaking the jaw, and tracheostomy and scars were larger and more pervasive. With thyroid cancer in particular, better technology allows for smaller incisions, less internal and external scarring and quicker recovery. The goal, he says, is to be as minimally invasive as possible in order to preserve functional and cosmetic outcomes. “We try not to do too much — to preserve functional and cosmetic outcomes.”
After the operation, thyroid cancer survivors may or may not receive adjuvant radioactive iodine therapy, with its particular low-iodine diet. Patients often must make their own almond milk and ketchup, for example, to avoid iodine in processed foods. They also experience a period of isolation due to the radiation. Survivors take thyroid replacement hormones for the rest of their lives to continue the fine art of managing their metabolism. And they return for checkups and scans regularly — every three to four months in the first two years, and less often after that — to be sure the cancer has not returned.
For the vast majority who survive thyroid cancer, this is recovery.
“There’s a stigma that surrounds it as a ‘good cancer,’” explains Avin, who now, at 23, has embarked on a career devoted to studying the cancer she was diagnosed with in her teens. Indeed, thyroid cancer has been referred to, flippantly, as a “nuisance cancer.”
“A lot of us go through struggles; they’re just different struggles,” says Avin. “We may not go through chemo or radiation, but we are still cancer survivors.”
—Laura Lambert for Greater Baltimore Medical Center