My 23-year-old cousin, Tarlie Townsend, first noticed a new mole on her right cheek while she was traveling in Cambodia during a fellowship in February 2014. She was in a countryside bus stop bathroom when she saw her reflection in a tiny mirror for the first time in days, and was shocked that there was new growth. It looked like a skin tag or pimple.
“I just remember looking in the mirror," she says, "and being like, ‘huh, where did that come from?”
Skin cancer runs on her mother’s side of the family, so she had been taught from childhood how to check herself. Once she returned to Vietnam, where she was based during the fellowship, she looked up signs of melanoma and examined the mole using a common self-check system, the ABCDEs. The acronym stands for asymmetrical shape, irregular borders, multiple or uneven colors, a diameter larger than the size of a pencil eraser, and evolving shape, size, color, or other characteristic.
Tarlie’s new growth didn’t meet those criteria. It was dome-shaped, mostly skin-toned with a little pink, and had clean borders. It didn’t look like her other moles.
When she looked at charts comparing photos of benign and malignant moles, she was relieved that the photo of the benign mole on the first page looked like the new spot.
It would take 10 months and multiple doctors in three countries before the growth was correctly diagnosed as a nodular melanoma—an invasive, aggressive form of skin cancer that grows quickly, but can look like a mole or pimple.
Completely removing melanomas before they grow deeper into the skin is a cure, but due to the challenges of diagnosing nodular melanoma, insufficient testing, and bureaucratic delays in the US healthcare system, Tarlie’s melanoma had reached her lymph nodes by the time she was diagnosed in December 2014. She had third-stage melanoma, with a five-year survival rate between 59 and 78 percent—meaning she had a 59 to 78 percent change of still being alive five years after being diagnosed. She was in her early twenties, and had no previous major health issues.
Melanoma cases have been rising in the US for the past 20 years. An estimated 1 in 54 Americans are at risk of developing the aggressive skin cancer in their lifetime. The increase in melanoma has hit young people particularly hard. In 2009, the melanoma incidence among women ages 18 to 39 was eight times higher than it was in 1970, due in part to indoor tanning, and four times higher for men in the same age group.
Even though only 15 percent of melanomas are nodular, they account for 50 percent of melanoma deaths because they penetrate the skin faster to reach the lymph nodes than other skin cancers. From 1978 to 2007, the number of nodular melanoma cases and survival rate remained unchanged.
Nodular melanomas are also harder to diagnose because they don’t fit the traditional ABCDEs of skin-cancer detection. They’re often symmetrical, small in diameter, and only one color. Many are blue-black, but five percent are pink or red so they look like infections or pimples.
In 1998, French dermatologist Jean-Jacques Grob proposed a new system to identify melanomas that slip past the ABCDEs. Grob observed that people typically produce moles that look similar to each other, so a lesion that doesn’t conform to the body’s usual pattern for moles may be pre-cancerous or cancerous, even if it doesn’t bear the classic signs of skin cancer. Grob called it the “ugly duckling sign.”
Ashfaq A. Marghoob, director of clinical dermatology at the Memorial Sloan Kettering Skin Cancer Center Hauppauge in New York, is now working to include the ugly duckling sign in self-skin check guidelines. He and other researchers have created new detection criteria that combine the classic ABCDEs and the ugly duckling sign. They call the new criteria DUC, or “Do U C Melanoma?” It stands for Different from other moles, Uneven in any way (which includes the ABCDEs mentioned above), and Change over time.
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“What we felt is that the ABCDEs don’t completely address all the features necessary to find melanoma, so we wanted to figure out: Is there a simpler method we could use?” Marghoob says.
Under the ABCDEs, Tarlie’s growth didn’t raise any concerns. Under the DUC criteria, it might have. Instead, Tarlie’s melanoma was first misdiagnosed as an infection. When it didn’t clear up within a few weeks, she went to see a dermatologist in Hanoi, who prescribed antibiotics. “She voiced no concerns,” Tarlie says.
The antibiotics had no effect, so in June, Tarlie had it checked again. Before traveling to Shanghai, she identified a dermatologist in Shanghai who received his medical education in the United States and was recommended for treating Western ex-pats. He didn’t think it was an infection, but a cluster of burst blood vessels. He wasn’t worried about it, and offered to laser it off for cosmetic reasons and biopsy just the top layers, known as a shave biopsy. Although shave biopsies have high accuracy rates, they can fail to collect enough tissue to reveal how deeply a cancer has grown into the skin and don’t completely remove a growth.
“If he had taken a more complete biopsy, they might have known earlier on what was going on,” she says.
The results of Tarlie’s shave biopsy found that it was low- to moderate-risk. The dermatologist said it wasn’t urgent, but told her to keep an eye on it. Based on his advice, she decided to have the growth examined a third time when she returned home to the States in September. There, she says the dermatologist was dismissive and frustrated by her case.
“They were very upset and didn’t know what to do with the fact that some of the information was in Chinese and said, basically, we can’t help you because we can’t understand this,” she says.
They referred her to a plastic surgeon to cut out the growth, but she struggled to get in touch with his office and set up an appointment. “I tried to call repeatedly,” she says. “It was a really messy and inefficient process.”
It took three months to see the plastic surgeon, schedule, and complete the removal. During those three months, the melanoma slowly reappeared. This time, it was flat and amorphous, like an amoeba. Still, Tarlie wasn’t worried. She had seen three dermatologists in three countries, none of whom thought it was dangerous. She’d undergone a shave biopsy, which didn’t find that the growth required urgent attention.
“One time after another, I kept getting the reassurance of physicians, so following those reassurances, I didn’t feel concerned,” Tarlie says. “It wasn’t until October that I knew something was up, but I wasn’t terrified yet because I had trust in the system. I had seen doctors who were well-trained in both China and US. I thought if this was something that was evolving, they’d demonstrate urgency.”
A plastic surgeon removed the melanoma on December 11, ten months after it first appeared in the bathroom mirror at a bus stop in Cambodia. A week later, Tarlie received a voicemail from a plastic surgeon, who told her to call him back. When she dialed the number, she was surprised that he had given her his personal cell phone number.
“He seemed kind of flustered when I said who I was and what I was calling about,” Tarlie says. “He was clearly at the airport, and it was all frazzled. He said, ‘oh yeah, right, you. Unfortunately, your test results came back that this was a melanoma. I have to go, but I want you to go online to cancer.gov and see what the prognosis is.’”
When the hung up the phone, she typed in cancer.gov, but couldn’t bring herself to look at the results. She was home alone, and began frantically trying to call her mom, who was at work, and texting her friends. Once she got in touch with her mom, she broke down.
“I said ‘it’s melanoma,’” she says. “She asked, ‘what are you talking about?’ I said, ‘it’s melanoma. It’s melanoma.’”
From December 2014 to February 2015, Tarlie underwent three surgeries to remove lymph nodes in her face and neck that might have contained cancer. Between her three surgeries, she had more than 20 nodes removed, and the melanoma had reached two.
“Every minute feels like a day when you’re waiting for the surgery, when you’re waiting for the results of that surgery,” she says. “It was like somebody had cast a blanket over the sun. It felt like one of those dreams where you’re trying to run through molasses. It was slow-moving, a little hopeless, and a little dark.”
The surgeries removed all signs of the melanoma, and Tarlie hasn’t had any symptoms in three years. Unfortunately, melanoma has a high recurrence rate, so she undergoes regular scans and is vigilant about using sunscreen and taking care of her health.
Tarlie is now a PhD student in health policy and sociology, and is considering the next steps in her career. She’s also spending this summer traveling in Europe and the US. She now encourages people to learn about their family’s melanoma history if possible, and educate themselves about nodular melanoma and the ugly duckling sign. Melanoma is preventable. Protecting one’s skin from UV rays and staying up-to-date on detection methods can help people save their own lives.
“The probability of recurrence goes down with every year, but it’s not miniscule,” she says. “I’m far from out of the woods.”
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