What it’s really like to have melanoma
Nobody wants to hear they have skin cancer. Here’s how the experience plays out, according to people who’ve had it. Plus: How to protect yourself now.
Ryan McKinstry had a small cancerous mole removed at age 20. Afterward, his doctor recommended he receive a computed tomography (CT) scan every 5 months. Two years later, the cancer was back. He was diagnosed with Stage 3 melanoma.
Rates of melanoma, a form of skin cancer, have gone up in recent years. New invasive cases have increased 44% since 2011, according to the Skin Cancer Foundation. This year, the group expects more than 200,000 people to be diagnosed.
One explanation for the increase dates back to a time before we understood the risk. “Not too long ago, baby oil and reflectors were all the rage,” says Ross Radusky, MD, a board-certified dermatologist in Dallas. “Thankfully, that has mostly stopped — but the skin cancers from this type of damage haven’t, and we continue to see increasing melanoma diagnoses in those 40 and above.”
But while older adults are most vulnerable, melanoma affects adults of all ages, according to the American Cancer Society. The disease can be deadly. But it doesn’t have to be. “When detected early, the 5-year survival rate for melanoma is 99%,” says Dr. Radusky.
The odds weren’t quite as good for McKinstry. His Stage 3 diagnosis indicated that the melanoma had already spread to his lymph nodes.
“I felt a painful lump behind my ear and was sent to a specialist for a biopsy,” he says. The doctor used an ultrasound to guide a needle toward the tumor and collect a sample. The procedure lasted only a few minutes, but McKinstry recalls it as “very painful.” As a personal trainer, he was prepared to tough it out. “I was scared but knew I was in great hands and ready to fight,” he says.
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How to spot skin cancer
Early detection is key for survival. The Skin Cancer Foundation recommends that most people get checked by a dermatologist once a year — more often if you have risk factors such as a personal or family history of skin cancer. And during the time in between appointments, you should pay attention to any moles or spots that look unusual, says Dr. Radusky.
If you’re doing a self-check, you can follow the same rules as a dermatologist: Look for the ABCDEs of skin cancer.
- A for asymmetry. “Round is regular,” says Dr. Radusky. “A mole that is concerning for melanoma will be irregularly shaped.”
- B for border. “You should be able to clearly see where the mole starts and stops in the skin,” says Dr. Radusky. “It shouldn’t blend in with the surrounding skin or dive into deeper areas of the skin.”
- C for color. “Think of browns and tans as benign colors,” he says. “Speak to your dermatologist if you notice multiple colors, or the colors pink, black, blue and gray.”
- D for diameter. “We like to catch melanomas when they are small,” says Dr. Radusky. “A spot larger than a pencil eraser should raise concern.”
- E for evolving. This is probably the most important of them all, says Dr. Radusky. “A new or changing mole is the most important reason to see a dermatologist,” he says. “In fact, 80% of melanomas arise from new spots, not existing ones.”
Basal and squamous cell carcinomas are the 2 other common skin cancers. You can learn more about them here.
Treatment and recovery for melanoma
Leah Alexis Adams, 28, went in for her first-ever skin check in 2019. The doctor found an unusual mole on her chest.
She didn’t immediately know the severity of the melanoma, and she wouldn’t for weeks. It was a stressful time. “After 4 appointments, 1 surgery and 1 sentinel lymph node biopsy, I found out the cancer hadn’t spread to my organs,” says Adams, who’s from Cleveland.
Her cancer was identified as a Stage 1A malignant melanoma: “I am one of the lucky ones who received good news, and the cancer was caught early.”
But after 1 melanoma, she’s considered high risk. “As of today, I may be cancer-free, but I am not free from it,” she says. “I have to go to a routine skin check every 3 months. At every check, there has been at least 1 mole removed for additional testing. These skin checks are anxiety-inducing, and I relive the fear and worry every single time.”
She also regularly sees a melanoma specialist who “performs mole mapping to keep track of the hundreds of moles on my body to make sure they are not evolving, changing shape, color, etc.”
McKinstry, who had the Stage 3 diagnosis, had a rougher recovery. First, he underwent surgery to have the cancer removed. “They ended up taking 22 lymph nodes from my neck, and 3 were cancerous,” he says. And afterward, he began immunotherapy.
Unlike chemotherapy, which targets the cancer directly, immunotherapy uses medication to empower the immune system to identify and attack the cancer. “I did IV immunotherapy treatments once a month for a year,” he says. “I didn’t have many side effects other than being very tired the rest of the day after treatment.”
At 24, he’s now cancer-free. But he sees a dermatologist, specialist and oncologist regularly. “I also still get CT scans about every 5 months,” he says.
How to prevent melanoma
Adams and McKinstry now both wear hats and sunscreen when they’re outdoors. They wear long sleeves and pants whenever they can. They’re cautious about the sun, because they know it can cause damage.
Regardless of whether you’ve had melanoma, you should follow their lead to prevent it. Here’s what Dr. Radusky recommends:
1. Cover your exposed skin with SPF 30
Sunscreen is measured by its sun protection factor, or SPF. You want 30 or above, and you want to see the words “broad spectrum” on the label. “That means it protects against both UVA and UVB ultraviolet rays, which lead to premature skin aging and skin cancer,” says Dr. Radusky.
How much sunscreen is enough? You need about an ounce to cover most exposed areas of the skin, says Dr. Radusky, who also created a sunscreen measuring cup called Sunshotz. And remember to reapply your sunscreen every 2 hours, and more frequently if you’re swimming or sweating. (At the Optum Store, you can use your HSA or FSA to buy sunscreen bundles.)
2. Stay in the shade
If you’ve had more than 5 sunburns in your lifetime, your risk of melanoma doubles, according to researchers in Germany.
“By practicing sun-smart behavior, such as using sun-protective clothing, umbrellas and sunblock, and by avoiding the sun during peak midday hours, you can minimize the harmful effects of the sun,” says Dr. Radusky. (We asked a dermatologist: How much sunlight do you really need for health?)
3. Save photos of your moles
Monitoring your moles is an important step in detecting the evolution of skin cancer.
“Moles on the palms and soles are more likely to turn into melanoma than the moles on other parts of our body,” says Dr. Radusky. “I suggest patients take a photo of the mole on their phone, save it to their favorites and compare it every 6 months. If you notice any change, let your dermatologist know.”
4. Come prepared for a full skin examination
Consider skipping makeup and removing nail polish the day of your exam, says Dr. Radusky. That will help your dermatologist get a better look at your skin, including the surface under your nails.
Any time you visit the doctor, there’s a chance you’ll be swinging by the pharmacy afterward. So carry the Optum Perks Discount Card in your wallet. Then you can present it at checkout to see if you may be able to save money on medication.
Skin cancer overview and stats: Skin Cancer Foundation
Melanoma overview and stats: Skin Cancer Foundation
Melanoma strikes at all ages: American Cancer Society
Five blistering sunburns doubles the risk of melanoma: British Journal of Dermatology (2001). “Timing of excessive ultraviolet radiation and melanoma: epidemiology does not support the existence of a critical period of high susceptibility to solar ultraviolet radiation-induced melanoma”