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When most people think of skin cancer, they picture a dark, irregular mole, the classic warning sign for melanoma. But one of the most dangerous forms of skin cancer rarely looks like that at all. It can appear as a small pink bump, a reddish lump or something easily mistaken for a harmless cyst or pimple. That’s exactly what makes Merkel cell carcinoma so easy to miss.

Merkel cell carcinoma is rare, but it’s more invasive and more deadly than melanoma. And while it remains far less familiar to the public, the number of cases is climbing. Not just around the region, but around the world.

To raise awareness of a rare condition that few people know about, Chantel Hillestad, MSN, DCNP, FNP-C, Dermatology, recently published a case report in a national journal titled “Challenges of Treating Recurrent Merkel Cell Carcinoma in the Rural US.” The case was published in the Journal of Clinical and Aesthetic Dermatology.

Chantel’s push for awareness grew out of a real case where Chantel cared for a patient with recurrent Merkel cell carcinoma. Publication wasn’t the original goal. Chantel hadn’t set out to write up the case, but she came to see it as a chance to raise awareness and ultimately pursued publication to help educate others about Merkel cell carcinoma.

“My goal, and still my goal, is to increase awareness. Number one among the public, number two in dermatology and number three in primary care as well,” said Chantel.

That motivation has carried the work well beyond a single clinic. In addition to being published in a national journal, the case was presented at a national roundtable conference, a notable recognition for work rooted in a North Dakota practice. But education remains the real driver. When the case report was shared with colleagues, many had never heard of Merkel cell carcinoma.

Unlike melanoma, Merkel cell carcinoma doesn’t have a single, obvious appearance. It can present as a rapidly growing lesion that is pink, red or violet in color. Sometimes it has a scaly surface or is tender to the touch. Other times, it’s completely symptom-free and can even resemble a small cyst.

The common thread is change. Anything new, changing or growing quickly is worth evaluating. Because Merkel cell carcinoma doesn’t fit the mental picture most people have of skin cancer, it’s easy to adopt a “let’s watch it and see” approach, and that delay can matter.

“Because there is so much awareness of melanoma, people move faster. People get a biopsy faster, get referred faster,” said Chantel. “But when it’s something that maybe isn’t so scary-looking, the instinct is to wait.”

Merkel cell carcinoma is most frequently found in older men, and sun exposure is a major driver, with most cases linked to UV exposure. That risk puts a large share of North Dakota’s population squarely in its path.

Farmers, construction workers and oil field workers all spend long hours outdoors, often in sustained sun exposure, which increases the risk. For a region built on agriculture and energy, that’s a population worth paying attention to.

Additionally, rural patients often face worse outcomes, and the reasons go beyond the biology of the disease. Access to specialized care, the distance to dermatology and radiation services, and the difficulty of taking time off work all add up. For many, traveling for an appointment isn’t just inconvenient; it may not be possible at all.

The answer, Chantel said, is to meet patients where they are. “You have to advocate for your patient. You have to listen to your patient. What are they willing to do? How far are they willing to travel? You might have to get creative with care coordination to ensure patients receive the care they need.”

She added, “Telemedicine is one practical tool for patients, especially in rural areas. It can’t replace every visit, but it can get the ball rolling by helping determine whether a lesion needs a biopsy and how soon a patient should be seen for an in-person visit.”

Still, care can only begin once something is noticed, and there’s no routine screening test for Merkel cell carcinoma, so everyday vigilance is important. Keep an eye on your skin and ask a spouse or family member to help check areas you can’t easily see, such as your scalp and back. Any new or concerning spot should be flagged to your primary care provider or evaluated by a dermatologist.

Chantel emphasizes that the value lies in early evaluation, catching a new or rapidly growing lesion before it can progress. And when an evaluation comes back benign or a biopsy is negative, that peace of mind is its own reward. “The sooner, the better,” said Chantel. “At the end of the day, if it’s nothing, it’s nothing, but there’s reassurance in knowing that.”

While the disease has been on the rise, there is real hope on the treatment side. Emerging drug therapies are expanding the options available, and ongoing clinical trials promise more to come. Pathology testing has also advanced, improving the ability to recognize Merkel cell carcinoma from a biopsy.

The science is moving in the right direction, but early detection still does the heaviest lifting. That’s why Chantel keeps coming back to the same idea: “Stay alert to anything new, changing or growing on your skin and don’t wait to get it looked at. In a rare disease that thrives on being overlooked, awareness remains the best defense.”