We’ve all been taught melanoma — the deadliest form of skin cancer — sends warning signals before it invades deeper and spreads. The key is to monitor moles that are growing, changing color or otherwise evolving.
But what if there is no mole to signal the threat?
That’s what happened to Amanda Hunt, an attorney who was stunned to find out the lump in her breast turned out to be a melanoma tumor that had also spread to her lungs and many other parts of her body.
Yet she’s never had a spot on her skin that’s been diagnosed as a melanoma — a rare, but possible scenario, doctors said.
“I had no idea this was even possible until it happened to me,” Hunt, 39, who lives in Titusville, Florida, told TODAY.
“(I thought) you have a mole or something on your skin that changes, you go to the dermatologist, hopefully they catch it early enough and remove it all, and then you're safe … So it took me a little bit to wrap my head around what that truly meant, and once it sunk in, I was terrified.”
About 3% of melanomas are considered of “melanomas of unknown primary” — where doctors don’t know where on the body they originally started, said Dr. Zeynep Eroglu, Hunt’s oncologist at the Moffitt Cancer Center in Tampa, Florida.
The melanoma is only found after it has already spread to lymph nodes, subcutaneous tissue or to organs such as lungs or liver, Eroglu added.
UV exposure takes toll
As a fair-skinned child growing up in Florida and spending summers poolside and at the beach, Hunt recalled being sunburned many times as a girl. She remembered using sunscreen but not reapplying it.
Then, at around age 18, Hunt started using tanning beds and continued that practice on and off into her early 30s, sometimes going in four times a week for years, she said.
Her first brush with skin cancer came in 2011 when she noticed a spot that looked like a mosquito bite on her upper arm. When it didn’t go away, became scaly and started bleeding, she visited her dermatologist. The diagnosis: basal cell carcinoma, a very common skin cancer that’s usually not life threatening.
It was removed and Hunt began going to annual skin checks from that point on.
In May 2020, she was in bed getting ready to go to sleep, when she reached for the covers and her hand happened to brush her right breast. She felt a lump.
Hunt has a history of breast cysts, so she gets mammograms and ultrasounds every year. She wasn’t too concerned about the new bump, but showed it to her doctor, who removed it.
The diagnosis: melanoma.
“Of course, everybody panicked at that point because it was already inside my body,” Hunt said. “Honestly, I didn't know there was anything going on in my body, which is insane to think about.”
CT scans revealed tumors on both her lungs, left kidney, left adrenal gland and in the orbit of each eye. Within weeks, she also started noticing several palpable tumors that were growing under the surface of her skin, including some on her back and neck.
Responding to immunotherapy
The origin of these melanomas without a spot on the skin is still in question, noted Eroglu, Hunt’s oncologist. One hypothesis is that they sometimes happen because the original melanoma spreads to other parts of the body, but regresses back under the skin before the sites of the metastases are diagnosed — so the primary melanoma is no longer visible and can’t be found, Eroglu said.
Hunt began immunotherapy in July 2020 and has been responding to it, with many of the tumors shrinking and vanishing. But the treatment, which revs up the immune system to fight cancer, can also act against healthy cells and create toxicities. Hunt developed Type 1 diabetes as a complication of her immunotherapy.
“I’m permanently insulin dependent because my immune system attacked my pancreas on its way to try to find and kill cancer,” she said.
Hunt is also recovering from meningitis after the treatment recently created a dangerously high level of immune cells in her spinal fluid. She’s far from returning back to a normal life and hasn’t asked her doctors for a prognosis, but is focusing on being grateful and spreading awareness through her blog, Love & Sunblock.
“The biggest thing for me, if I could go back, would be to just embrace my pale skin and protect my skin,” Hunt said. As a mom of a 14-year-old girl, she’s alarmed by social media posts she’s seen where young people glorify tanning beds and show others how to get a tan faster.
“I also want people to know that time is so precious,” she noted. “We never truly know when our time will end here, and so I just encourage everyone not to wait until they're facing a life-threatening illness to get it right.”