July 26, 2013 — -- Brenda Royer said the spot looked like someone had taken a red pen and dotted her daughter's cheek. But instead of washing off with some soap and water, the small, red dot started to grow.
"It was a like a pencil eraser, only larger," Royer, of Tomball, Texas, said about the spot on her then-2-year-old daughter, Kadynce Royer.
Laura Howard, of Huntsville, Ala., said she thought her 6-year-old son, John Randall Howard, merely had a wart on his leg.
"[The doctor] froze it off [and] told him what to expect," said Howard. "[But] it did not do what it was supposed to do."
The small spots on Kadynce and John Randall were not minor skin conditions but the first physical sign that they had developed melanoma, a dangerous and rare skin cancer that is increasingly affecting children.
Melanoma makes up 5 percent of skin cancer diagnosis but a majority of skin cancer deaths.
In 2013, the American Cancer Society estimated, 76,690 new melanomas will be diagnosed and 9,480 people are expected to die from the disease.
Children make up a tiny fraction of these cases, but a study recently published in the journal Pediatrics found that cases of pediatric melanoma are increasing. Between 1973 and 2009, the study found, cases of pediatric skin cancer rose, on average, 2 percent each year.
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Melanoma is also the second most common form of cancer for adolescents and young adults between 15 and 29 years old, according to a 2007 study from the National Cancer Foundation.
Unfortunately, pediatric melanoma can be very difficult to diagnose because the warning signs are often very different than those for adult melanoma. In addition, experts say, testing biopsies in a pathology lab can be inconclusive and occasionally these cancers are only definitively diagnosed after they've grown or spread.
'It's No Big Deal'
A major factor in surviving a cancer diagnosis is early detection, but the early signs of pediatric melanoma often masquerade as inconsequential skin problems.
Howard said that after she noticed the small wart on her son's leg, she scheduled a dermatologist visit. Initially, the appointment was scheduled for a few months later, but her husband convinced her to get John Randall to a specialist sooner.
"My husband had a weird sense that something was different," said Howard.
After a biopsy and lab tests, doctors determined that John Randall likely had a benign spitz nevus, a small lesion or mole that is ultimately harmless.
Relieved, Howard and her family assumed everything was fine. Four months later, in January 2013, Howard noticed and an enlarged lymph node on John Randall. Again she was concerned and took her son to her pediatrician, who said it was "likely nothing," but referred Howard to another dermatologist.
Yet another biopsy was done on the squirming 6-year-old and sent off to the lab.
According to Howard, the dermatologist cautioned her against overreacting.
"There's a 99 percent chance that it's nothing," Howard recalled her doctor saying. "He doesn't have any risk factors [but] there's a 1 percent chance that it could be something."
The next day, Howard got a call to come in immediately. Her doctor sat her down and said John Randall had melanoma in his lymph nodes.
"[He] never showed one symptom," said Howard. "I think that's why it so hard to come to terms with once you get the diagnosis, because ... he was never tired, nothing."
In Texas, a biopsy taken from Kadynce was sent to three pathology labs before she was diagnosed with melanoma. In total, it took appropriately six weeks from when Royer first took her daughter to her pediatrician for Kadynce to receive her diagnosis.
Royer said she saw a pediatrician, dermatologist and plastic surgeon, all of whom first believed the spot was nothing to worry about and just a minor growth.
However, Royer said the plastic surgeon was the most concerned and biopsied her tumor. According to Royer, the initial lab test came back positive for melanoma, but the doctor wanted a second opinion. The second lab test came back with the recommendation that Kadynce be treated for a benign spitz nevus, the original diagnosis for John Randall. But Royer said Kadynce's plastic surgeon was concerned and sent the biopsy to a third lab, which finally confirmed that Kadynce had cancer.
"There is that immediate sense of relief that, 'Now we have an answer,'" said Royer. "You have 10 seconds to be sad and then you go to kick-butt-warrior mode."
'If You See Horses, You're Not Looking for Zebras'
Experts say that both Kadynce and John Randall's experiences of spending weeks to months of being misdiagnosed is fairly common. Melanoma in children often looks very different than melanoma in adults, often lacking the telltale irregularly pigmented moles. Even lab tests, like Kadynce's, can be inconclusive.
Dr. Ashfaq Marghoob, director of Memorial Sloan-Kettering's regional skin cancer clinic in Hauppauge, N.Y., and spokesman for the Skin Cancer Foundation, said melanoma presents very differently in children versus adults.
"You're asking these doctors to look for zebras," said Marghoob. "If you usually see horses you're not looking for zebras. Their mind is not in tune with looking for these melanomas. The morphology of melanoma in kids is different from adults."
A 2011 study presented at the Pediatric Dermatology Annual Meeting found that 60 percent of children between the ages of 0 and 10 in the study with melanoma did not meet the common melanoma-detection criteria. The criteria is broken down by the "ABCDE warning signs," which stands for Asymmetry, Border irregularity, Color variation and Diameter over six millimeters, and Evolution of the lesion.
For children between the ages of 10 and 20, approximately 40 percent did not strictly meet the ABCDE criteria.
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Instead, many children in the study had tumors that were symmetrical and amelanosis (lacking pigment). The differences were so significant that the study's authors proposed creating alternative ABCD criteria for pediatric patients, where A is for amelanosis, B for bumps or bleeding, C for uniform Color, and D for various Diameters or de novo (or new) Development.
Marghoob cautioned that even when doctors look for the right warning signs, they can still have difficulty making the correct diagnosis. One problem is that in young children melanoma can be nearly difficult to distinguish from a benign spitz nevus, a kind of harmless mole.
"The clinical [and] the subclinical morphology, they overlap," said Marghoob. "There are features more commonly seen in melanoma in spitz nevus [and the other way around. Sometimes] one cannot, with 100 percent assurance, know if it's a spitz [nevus] or melanoma."
Marghoob said the overlap between the two conditions is how Kadynce can end up with different labs studying the same biopsy and having different results. In certain situations, Marghoob said, the cancer can only be definitively diagnosed after it's grown or spread to other areas of the body.
"You find out the correct diagnosis by hindsight," said Marghoob. "You get something that's a diagnosed as a bug bite, [but] it's cancerous."
'Once You're a Melanoma Patient, You're Always a Melanoma Patient'
Melanoma is a vicious disease that leaves its host at an increased risk for reoccurrence for the rest of their lives, even if there's no sign of disease after treatment. As a result, doctors do not use the term "cured" when they speak about recovering from melanoma. Instead they aim for "no evidence of disease" (NED.)
John Randall is only a few months into his treatment. He will spend a year receiving chemotherapy on and off. However, Howard said, the 6-year-old has dealt with the drugs "like a champ" without suffering from too many side effects.
He has been able to remain active this summer and even joined the swim team. Howard said he has only missed a few practices because he hasn't felt up to it.
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Howard said occasionally her worries about John Randall have come from unexpected scenarios, such as the time another child innocently asked John Randall why he had to wear a large hat with flaps on the side.
"I was always been afraid of the time when he doesn't want to wear [the hat]," said Howard. "He [told the other child], 'My cancer is triggered by the sun ... so if I wear a hat and sunscreen, it will help.' The other child said, 'Oh, I like it.'"
Howard said she felt a significant relief that John Randall could already comprehend a disease he will have to deal with for the rest of his life.
"That was a defining moment for me," said Howard. "He understands, and he's good and I can trust him."
For Kadynce, now 8, reaching the NED stage involved at a year of chemotherapy and eight surgeries over the last five years.
As a result of the chemotherapy, Kadynce suffered fever, chills and nausea from the medication. It also affected the nerves in her feet, causing pain.
"[One person] who took it as an adult [told me], 'It was like walking on broken glass,'" said Royer.
At one point, the medication made Kadynce so sick they had to temporarily suspend treatment so she could recover. Royer added that Kadynce's eyesight had been affected by her year of chemotherapy.
The 8-year-old was also left with a scar on her cheek the size of a silver dollar that has made her the subject of taunts and bullying, according to Royer.
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Although, currently, Kadynce has "no evidence of disease," Royer takes her regularly to the doctor to monitor for any signs of the cancer's reoccurrence.
"Once you're a melanoma patient, you're always a melanoma patient," said Royer.
Now that Kadynce has spent nearly five years as an NED patient, Royer has focused on helping other parents who have children with melanoma. She has become involved with the Melanoma Research Foundation and, last year, Kadynce testified before Congress about the disease.
All of the time spent among doctors and in the hospital has left Kadynce with a passion for anything medical, according to Royer.
"She does virtual surgery [on a video game]," said Royer. "She asked for a cadaver for Christmas. I'm still trying to figure that one out."