While on the couch, Amy Jardon, then 40, felt an intense itching sensation between her toes. After scratching did little to ease the feeling, she pulled her sock off and look at her foot. There was a tiny spot, which was the size of a pinhead with rings around it like a miniature Saturn with rough edges.
“I thought, ‘That’s interesting. I’ve never noticed that before,” Jardon, 48, from Cedar Falls, Iowa, tells TODAY.com. “I had an appointment the following week with my primary doctor for something else. I talked to her about this. She said, ‘That’s nothing. Don’t worry about it.’”
Still, her doctor advised her to return for a biopsy just to be safe.
“I received a phone call from the nurse to tell me I had melanoma,” she says.
Itchy spot reveals rare diagnosis
When Jardon’s left foot itched so much between her two leftmost toes, she looked at it and asked her husband what he thought before she decided if it was worrisome. Even though her doctor didn’t think it was anything to worry about, she performed a biopsy and got a second opinion from the Mayo Clinic immediately. That’s how they learned Jardon had the rare acral melanoma, a type of skin cancer that develops on the hands, feet, fingernails or toenails. Jardon was stunned by the diagnosis.
“I was shocked,” she says. “I quickly sat down … I was diagnosed in 2015 January, February. My mom had died December 12 from one cancer. My sister was diagnosed six months before with a different cancer.”
She called her dad who tried joking that “at least it’s not your big toe and you’ll still be able to run,” but that scared her even more. Still, she met with a general surgeon and then an oncologist for a treatment plan.
“I had a wide lesion excision,” she says. “The surgeon explained that he would take basically a centimeter around all the sides of the lesion.”
She had planned to run a race and asked if she could wait until after for the surgery and the doctor agreed.
“Looking back, I would not recommend that people do that,” she says. “I think he thought this was an early stage and he was going to ruin my world by telling me I couldn’t run anymore. He was letting me have one last hurrah.”
Recovery felt difficult. For a month, Jardon had to keep her foot elevated without putting weight on it, and she reluctantly listened.
“I sat on the couch for a month,” she says.
After the doctor removed the sutures, she gradually began putting weight on her foot.
“It was just building up the ability to stand on my foot again. I could stand for 10 minutes without it hurting,” Jardon explains. “Then I could stand for a half hour without it hurting.”
She slowly was able to run again — first attempting a race a few months after surgery before running 13.1 miles and then completing two half marathons.
It wasn’t until a year after her surgery that Jardon learned she had acral melanoma, specifically.
“Nobody explained to me that this was a different type of melanoma,” she says. “It occurs on hands and feet, and it’s not sun related.”
For the first five years, Jardon underwent screening every few months to make sure she didn’t develop other skin cancers. She now goes in once a year for skin checks.
“This has been my only skin cancer of any type,” Jardon says. “I have other areas that have itched, which made me very (nervous).”
“Acral melanoma is a rare subtype that occurs on the palms of the hands, the soles of the feet and under the nail bed, so under fingernails or toenails,” says Marc Hurlbert, PhD, chief executive officer of the Melanoma Research Alliance, tells TODAY.com.
He notes that about 100,000 people are diagnosed with melanoma annually in the United States and about 3,000 to 5,000 of those cases are acral melanoma, which makes it a “rare disease.” When it comes to skin cancer, the American Academy of Dermatology Association recommends that people think of their ABCDEs.
- A: Asymmetrical
- B: Unusual, scalloped or undefined borders
- C: Different hues of colors, including tans, browns blacks or dots of white, red or blue
- D: Diameter that is greater than a pencil eraser
- E: The spot changes or evolves in size, shaper or color
“You can use the same (when) looking for spots on your hands or feet,” Hurlbert says. “Just be aware of your body.”
But acral melanomas might not follow these same rules when it comes to those that develop in the nail bed, for example.
“It can be an unexplained streak in the nail. They can literally look like someone took a pencil or a pen and drew a perfect column,” he says. “This unexplained streak, a lot of people confuse it. They’re like ‘Oh I stubbed my toe,' or ‘I must have injured my finger.’”
If someone hurt their fingernails or toenails, those injuries would start healing in several days, he adds. But streaks that remain can be a sign of a problem.
“It sometimes can be sort of gray or tannish looking,” he says.
Most skin cancers, about 90%, occur on “sun exposed areas,” including the head, neck, arms and back. Acral melanomas occur on body parts that do not often receive a lot of sun. Experts believe that something different causes them.
“We don’t believe they’re caused by sun exposure,” Hurlbert says. “You don’t get a lot of ultraviolet radiation on the bottom of your feet.”
Yet, the exact mechanisms behind acral melanoma remain unknown. The Melanoma Research alliance started a registry of rare melanoma that offers support to people with the cancer and helps them access clinical trials.
“The point of the rare melanoma registry is to enroll hundreds of patients over time and follow them and try to understand better what the causes were, what treatments they were offered and how did they respond to the treatments,” Hurlbert says. “So that we can better understand the disease and hopefully better prevent it in the future as well as better treat it.”
Like other skin cancers, surgery is often the first line treatment, but in some cases this is more complicated. Some people need to have part of their fingers or toes amputated so doctors can make sure there are clear margins.
“Sometimes you lose part of your foot, part of your hand, a finger,” Hurlbert says.
People of color seem to be at greater risk for acral melanoma for reasons that remain unclear.
“If you look in the medical literature, the largest studies of acral melanoma have only looked at 30 to 50 patients,” Hurlbert says. “It’s really hard to really tease out risk factors in such small studies.”
He says the organization hopes to learn if perhaps immunosuppressive medications or genetic risk factors, such as an unknown mutation, might contribute to acral melanoma, for example.
“More research is needed to really understand what causes it and the risk factors,” he says.
Becoming an advocate
Since her diagnosis and treatment for acral melanoma, Jardon has become outspoken about skin cancer.
“I like to stress that melanoma can occur anywhere,” she says. “I’ve learned that there are other rare subtypes, including ocular and mucosal.”
She says many believe it only occurs on the skin you can see but she knows how untrue this is.
“This type of melanoma is often overlooked,” she says.