Twice a year, I strip down to my underwear, don a paper gown and subject myself to a full-body examination at the dermatologist’s office. These are done twice as often as most other patients—and for good reason. Not only am I freckly and fair-skinned, I’ve had an unhealthy relationship with the sun, which makes me more susceptible to skin cancer.
During my teens and 20s, when I was a lifeguard and camp counselor, I spent the majority of my summers outdoors. Like my peers, I’d wanted to achieve the perfect tan. I’d worn sunscreen, but it was SPF 4—barely any protection, compared with what doctors recommend today.
Now, I’m paying the price. This past decade, I’ve had a handful of suspicious-looking moles removed. Recently, my dermatologist sent me to a medical photographer for a full-body photo session to document my moles, in case they change.
My situation isn’t unique. Countless people worldwide didn’t protect themselves adequately from the sun’s ultraviolet rays during their youth. Decades ago, doctors didn’t preach about sun protection, and researchers didn’t realize that the sun’s ultraviolet rays could cause skin changes that can lead to melanoma, the deadliest form of skin cancer.
“The most important reason for the increase in melanomas is thought to be due to increased exposure to ultraviolet radiation from sun and artificial tanning sources,” says John J. DiGiovanna, staff clinician in the dermatology branch of the National Cancer Institute’s Center for Cancer Research in Bethesda, Maryland.
Melanoma is only the ninth most commonly diagnosed cancer across Europe, but its rates have been rising sharply since the 1980s, six-fold among some groups.
“Every year, 100,000 new cases of melanoma are diagnosed in Europe,” says John Haanen, head of medical oncology at the Netherlands Cancer Institute in Amsterdam. Caucasians are at greatest risk, especially those with fair skin, red hair and freckles. Risk rises after age 40–especially sun worshippers. Many experts refer to the increased prevalence as an epidemic.
“I would not call it a melanoma epidemic but a skin cancer epidemic,” says Reinhard Dummer, director of the Skin Cancer Centre at University Hospital Zürich. “We expect in Switzerland that one out of five persons will develop skin cancers once in their lives.”
Cultural changes over several decades are likely to blame. Bathing suits have gotten skimpier, and seaside vacations have become more common, exposing pale office workers to intense sunlight for short periods.
“In Europe, low-cost air travel has increased the ability for people to travel to sunny, warmer climates for a week here and there,” says Alex Menzies, medical oncologist at Melanoma Institute Australia, the country with the highest melanoma rates in the world. “Intermittent exposure to the sun with burning is a major risk for melanoma.”
Even if you’ve endured decades’ worth of sun exposure, there is hope.
The earlier you notice melanoma, the greater your chances are of being cured. Surgery is the primary treatment.
“If you picked up an early-changing mole, you could have a virtually normal life expectancy,” says Girish Patel, lead investigator for the Skin Cancer Stem Cell Research Program at Cardiff University.
Regular skin checks and meaningful lifestyle changes to limit further damage from the sun help improve the odds. Since Imogen Cheese, 37, of Gloucestershire, England, was diagnosed with stage II melanoma in 2013, she’s screened by her medical team every three months. “I cover up to avoid the midday sun,” says Imogen. “I wear high factor SPF, I am active and eat a healthy balanced diet.” So far, her cancer has not progressed.
Researchers have made great strides in the treatment of advanced melanoma. One option: Targeted therapy, which can be given to stage IV patients with specific genetic mutations.
Melanoma researchers in Australia have been involved with targeted therapy research since the beginning, about seven years ago. “We do testing on their tumors to look if there are any mutations in certain genes in the tumor,” says Menzies. “We have targeted therapy that can attack the BRAF mutation, which is found in about 50 percent of tumors from patients. If we give tablets for BRAF-mutant melanoma, almost every patient will have shrinkage of the tumor. On average, it will keep things under control for one year, and the one-year survival rate has improved to 70 percent, from 30 percent five years ago.”
Five years after John Ambrose, 67, of New South Wales, Australia, had a grade IV skin melanoma removed he began coughing up blood. His disease had spread to both lungs and his prognosis was poor. He joined a targeted therapy clinical trial in 2013, and within three months, his tumors shrank by 70 percent. After 18 months, he had clear scans. Today, John travels, plays golf and spends time with his grandchildren.
“My situation has not stopped me living a normal life,” he says.
Texas native Jesse Thomas, 57, also benefited from targeted therapy after being diagnosed with stage IV melanoma in 2013, with tumors on his neck, liver and spine. Genomic testing revealed Jesse had an uncommon V600K BRAF mutation, and his oncologist was able to pinpoint a targeted therapy for him.
“They expected the cancer to stop growing, but it actually shrank,” Jesse says. “There’s no way to cure it, but I am controllable.”
Targeted therapy is only for stage IV patients, but researchers are studying its effects on stage III patients. “We should know within a couple of years whether these treatments are beneficial,” says John Haanen.
Researchers have been able to stimulate the T-cells in some melanoma patients’ immune systems to fight cancer, with astounding results.
“T-cells kill off viruses and other things,” Menzies says, “but with cancer, they’re sitting there around the tumor, asleep. They know that the tumor is ‘foreign,’ but the tumor has turned them off, stopping them from killing it. Immunology drugs turn on the T-cells and they kill the tumor.”
Melanoma researchers consider immunology the biggest breakthrough in decades.
“This is our ‘penicillin moment’ in oncology,” Menzies says. “Melanoma can be turned into a chronic disease, and many people will not die from it in the near future if we continue to go the way we’re going.”
Immunotherapy doesn’t work for everyone, but it can be quite effective. Cardiff University’s Patel says, “In the 45 or so percent of people who respond, they can respond for very long periods of time.”
In 2013, Cardiff resident Vicky Brown, 62, was shocked to learn that a lump in her breast was actually melanoma, not breast cancer. She’d had early-stage melanoma in 2006, which returned in her breast and lungs.
Through a clinical trial, Brown received intravenous doses of two immunotherapy drugs. Within weeks, her tumors shrank. She discontinued the drugs due to side effects, but it kept the melanoma in check for a year. In 2015, after new lung tumors appeared, she received more immunology treatments. The drugs again shrank her tumors.
“I am hoping this couple of doses will give me more time again,” Vicky says. “My grandson is now nine months old. I want to be able to make memories for him, as well as my four-year-old granddaughter.”
Researchers are working to get more patients to have a positive response to the treatment. “The notion is that clearly, if we can do it in a few, we should be able to do it in the majority,” says Patel.
For years, researchers tried creating a melanoma vaccine, to no avail. Now, researchers are combining the success of immunotherapy with the concept of vaccines, leading to personalized melanoma treatments.
“As we better understand how the immune system recognizes the melanoma cells, we are developing so-called personalized vaccines,” Haanen says. “We are starting now in metastatic patients and if this concept works we’ll move to earlier stages.”
Hein Jambroers, 50, of Roermond, Netherlands, has benefited from a personalized treatment called adoptive cell therapy (ACT). He was diagnosed with stage II melanoma in 2009, but a year later, he had stage IV disease, with tumors on his right leg and liver, and was told that he had less than six months to live.
After getting some short-term benefit from targeted therapy, Hein was referred to an ACT clinical trial in 2011. Doctors at the Netherlands Cancer Institute harvested some of his white blood cells, then monitored them in a laboratory to identify the healthiest T-cells to fight melanoma. They were replicated in large numbers. Hein received chemotherapy to kill his existing T-cells, then got an infusion of the laboratory-created T-cells, which basically gave him a new immune system that shrank his tumors within three months.
He’s what doctors call a “complete responder.” He’s had clean scans ever since; no trace of melanoma.
“Complete responders have an excellent prognosis,” says Haanen, who treated Hein. “‘Cure’ is always difficult to say, but very long-term remissions —which could be cure—are seen in the majority of complete responders and in some partial responders.”
Hein, who expected to die, is cautiously optimistic. “I’m very positive about my future, but I’m always on a state of alert,” he says. “I sit in the shade. I cream up with sunscreen. I even do it for my child and my wife. I don’t want to tempt the fates.”
Soon, doctors may defeat cancer by attacking stem cells.
Skin stem cells make thousands of healthy skin cells. Melanoma stem cells work similarly, except they make thousands of malignant melanoma cells. Researchers are targeting melanoma stem cells to stop tumors from spreading.
“It’s like killing off the queen bee,” Patel says. “The whole hive then dies away, because you’ve gotten to the cell that’s giving rise to everything.”
This is vastly different from chemotherapy, which aims to kill as much cancer as possible. Stem cells make up only one to three per cent of some skin cancers.
“If you got rid of the cancer stem cell population, the whole tumor could not proliferate,” Patel says. “If you take the bulk of a tumor and regrow it in a mouse without stem cells, it can’t form. But if you take a small part of the cancer stem cell population, it grows back fully.”
Researchers have begun clinical trials, and treatments could be available in a decade.
Despite sun damage that I endured during my youth, I’m optimistic that I’m doing everything that I can to stay ahead of any problems that may crop up. I’ve got photos of all of my moles and freckles now, which I use for monthly self-exams. I’ll bring them to my dermatologist for my next full-body examination. I’ve also been raising my children with 21st century values for sun exposure—plenty of high-SPF sunscreen, hats and time in the shade—so hopefully the next generation won’t have the melanoma worries that my generation does.
After a Diagnosis
If you’ve been diagnosed with advanced melanoma, here’s what patient advocates recommend:
See a specialist
Seek a facility where doctors specialize in melanoma. “Our recommendation for patients is to get into a melanoma center of excellence,” says Bettina Ryll, founder of Melanoma Patient Network Europe in Uppsala, Sweden. “The new immunotherapies have very different side effects from anything we’ve ever had before, so you don’t want to have a physician who has never seen this.”
Consider a clinical trial
Availability of immunotherapy and targeted therapy varies in Europe. Cost is a factor in many countries. Many patients enter clinical trials to receive these drugs. A promising clinical trial may be farther from home than you’d prefer, but the extra drive could be worth it. Rory Bernard, 47, of Clermont-Ferrand, France, travels four hours to Paris for targeted therapy treatments, which have shrunk his tumors and extended his life. “The dermatologist said, ‘If you stay here, you’re dead in six months,’” says Rory’s wife, Gilly Spurrier-Bernard, founder of Melanoma France. “My aim is to inform patients that if they want to get the best treatment, they may need to move around.” Translation translation transl translation translation transl translation translation.