Decades of Warning Signs: One Woman’s Path to an Acral Melanoma Diagnosis

Acral melanoma is a rare form of melanoma that appears in places people don’t usually check, such as the palms, the soles of the feet and under the nails. Unlike most skin melanomas, it isn’t linked to sun exposure. For Trena Brown, an acral melanoma survivor and member of the Melanoma Research Alliance (MRA) Leadership Council, getting that diagnosis took decades.

A Change Under the Nail

In the 1980s, Brown noticed the nail on her right big toe was turning tan. Thinking it was a fungus, she saw a dermatologist.

“It’s not in the nail. It’s under the nail,” he told her. But he also told her not to worry about it.

Over the years, the area kept getting darker. A biopsy by a second dermatologist came back negative. By the time she moved to Baltimore, her toe was black, and she had her nails painted heavily during pedicures to hide it.

Brown had to convince a third dermatologist to do a biopsy. The results led her to the plastic surgery department at Johns Hopkins, where a biopsy found precancerous cells that were removed. Two years later, another biopsy found melanoma, and her big toe was amputated two days later.

An Unexpected Diagnosis in the Lungs

While Brown was rebuilding her balance after surgery, her trainer noticed she was more out of breath than usual and urged her to tell her doctor. An X-ray led to a CT scan, then a lung biopsy. The next day, Brown saw the words “metastatic melanoma” in her online patient portal.

“I went to Doctor Google, and Doctor Google told me I had about six months to live,” she said.

Her doctor explained that new therapies were available and started her on treatment. Her diagnosis was finalized in 2015.

Learning She Had a Rare Subtype

Brown didn’t learn she had acral melanoma until a year later, after a former co-worker connected her with MRA and she attended the organization’s national conference.

She said she hadn’t known Black people could get melanoma, “and I certainly did not know there was a subtype that did not come from the sun.”

Learning that acral melanoma affects people of color more often than White people inspired her to get involved and raise awareness.

The Hidden Toll of Treatment

Brown said many people don’t understand how serious melanoma can be.

“When people found out that I had a toe amputated, they just assumed I was diabetic,” she said.

Two years of infusions took an emotional and physical toll. She developed vitiligo on her face, lost her hair and had damage to her adrenal glands and thyroid that still requires daily medication. She also lost friends along the way.

“It’s been almost 10 years now, and I still have what we call scanxiety, which is anxiety about having CAT scans and MRIs,” she said.

Advice for Anyone Noticing a Change

Today, Brown shares her story wherever she can, including an impromptu lesson in a hospital waiting room, using photos on her phone to show what melanoma under a nail can look like.

For anyone newly diagnosed, her advice is simple: “But I think the No. 1 thing is don’t ask Doctor Google.”

She encourages everyone to know the ABCDEs of melanoma (asymmetry, border, color, diameter and evolving), but said the most important step is acting on any change.

“I just tell people if you see something on your skin that looks different, make an appointment with a dermatologist and get it checked out,” Brown said.

Above all, she urges people to enjoy every day, “be vigilant and advocate for yourself.”