Caitlin Jones wasn’t paying much attention to the atypical mole on her scalp, but her husband had a better vantage point of the growing spot.
She’s 5 feet, 5 inches tall. He stands exactly one foot taller. Gazing down at the top of her head last spring, he became concerned.
“He said, ‘I think this mole is changing. It looks kind of funny,’” Jones, a physician assistant who lives in Wooster, Ohio, told TODAY.
“It went from the size of the end of a pencil to the size of a dime in probably a month-and-a-half… maybe a hairdresser might have known, but I wasn't getting haircuts. So if he hadn't noticed, I think things would have turned out very differently quickly.”
It was April of 2020 and with the country in coronavirus lockdown, Jones was reluctant to visit her dermatologist. The spot on her scalp had already been biopsied four years before and was nothing to worry about at the time.
Still, she went at her husband’s urging and the second biopsy results were much different: melanoma that required surgery to get clear margins. Doctors also needed to biopsy her lymph nodes to make sure the deadliest form of skin cancer hadn't spread.
“When I received the call, it was really heart stopping,” Jones, 30, recalled. “You always assume that it's all going to be fine, and then you get news that kind of derails the whole path. I'm a medical provider — I take care of patients and I live a healthy lifestyle.”
But Jones had had a fair amount of sun exposure. She spent summers working as a lifeguard during her teens and used a tanning bed “more times than I’d care to admit” until her early 20s. In a recent survey, almost a third of U.S. adults, 31%, were unaware that tanning causes skin cancer, the American Academy of Dermatology found.
Jones was treated at the Cleveland Clinic, where doctors removed an area from her scalp almost the size of a tennis ball and used skin from her groin for a graft to close the wound. A biopsy of 13 lymph nodes showed they were negative for cancer.
Dr. Brian Gastman, surgical director of the Melanoma & High-Risk Skin Cancer Program at the Cleveland Clinic, called Jones’ story “a great outcome.” He estimated he sees a case of scalp melanoma almost once a week.
Studies have found scalp melanomas are more aggressive, can more easily spread to the brain and have mortality rates more than twice that of melanoma located elsewhere on the body.
One of the reasons is a late diagnosis since the spot is often hidden by hair.
Another reason head and neck melanoma — which makes up about 25% of all melanomas — is more concerning is that the lymphatic drainage in this area of the body is much more variable and broad, so the cancer can go to multiple different sites and not be picked up until later on, Gastman said.
Sun exposure absolutely plays a role in scalp skin cancer, he added.
“Not only is our hair not necessarily protective, but our clothing, our hats, our windows, our cars are not UV protective, so a lot of people falsely think they are protected,” Gastman noted.
“Understanding your risk profile and being safe from the sun are the two most important ways to prevent melanoma from occurring.”
People who’ve had multiple sunburns in childhood, have 50 or more moles, are fair-skinned with blue eyes and have a family history of melanoma are at extremely high risk of melanoma and should get regular skin checks, he said. The cancer is sneaky and can lurk in seldom-checked places like the scalp, the ear canal, on the buttocks or on the toenail.
Wearing sunscreen and reapplying it is important, with Gastman praising the viral photo of Facebook co-founder Mark Zuckerberg slathered in sunscreen last summer as an example of “proper placement” of the product: “I'm not laughing at all,” he noted. “He’s doing the right thing.”
It’s also key to seek shade and avoid the sun during the midday when its rays are the strongest.
Jones, who is now pregnant with her first child, said life is good after what she described as "quite a year."
After her surgery, Jones had to wear a pressure dressing sewn to her head for a week to promote blood circulation and for the skin graft to take. She’s since had another surgery to reduce the graft and scar.
A possible third procedure is on hold until she gives birth in August. Jones is doing fantastic, Gastman said.
There’s a small bald spot on that part of her head, but she’s gotten creative with hats and her long hair to cover it up.
“It was a little bit of a shock at first, but perspective is everything. I'll take a bald spot over chemotherapy or worse,” Jones said, expressing relief her lymph nodes were clear.
“Colors are brighter and life is unpaused… it’s important it is to enjoy the time we have, look out for our loved ones and look out for ourselves. You can't take anything for granted.”
This story first appeared on TODAY.com. More from TODAY: