In April 2005, while working out at her college gym in Rhode Island, 22-year-old Glenna Kohl detected a hard, golf ball-size lump near her groin. She left the gym and went home to put ice on what seemed like a sports injury.
When her roommate, Courtney Caulfield, now 25, returned to their apartment that evening, Glenna asked her to feel the lump. "I told Glenna she probably pulled a muscle," recalls Courtney. "She wasn't overly worried; she seemed more upset about cutting short her workout."
But the lump hadn't gone away by the time she graduated from Salve Regina University the next month. So Glenna, then living at her parents' home in Massachusetts, visited her family doctor. Puzzled, she referred Glenna to a surgeon, who scheduled a biopsy.
A few days later, the surgeon handed Glenna and her family a terrifying diagnosis: The lump was melanoma, the deadliest of the three forms of skin cancer. When caught at an earlier stage, melanoma—which typically begins as an irregular-shaped mole or a bump on the skin—is highly curable. But by the time it reaches stage III, as Glenna's had, the cancer has spread beyond the skin and into the lymph nodes (that's why the lump she felt was in her groin, where there's a cluster of lymph nodes). Only about half the people with her level of stage III melanoma survive for 10 years.
The news came as a total shock. "No one in our family knew what melanoma was," recalls Glenna's mother, Colleen Kohl. "We did a lot of crying."
Mystified about how the cancer had reached stage III without Glenna spotting any suspicious moles on her body, the surgeon eventually pored over her medical records. He found something disturbing: In high school, Glenna did have an irregular mole removed from her leg. A pathology report identified it as benign, but the surgeon tested it again. The lab had made an error: The mole was an early stage melanoma.
"We can't know for sure, but her odds of beating melanoma would have been greater had it been diagnosed earlier," says Donald Lawrence, Glenna's oncologist and clinical director of the Center for Melanoma at Massachusetts General Hospital (MGH) Cancer Center, in Boston.
The misdiagnosis infuriated Glenna's parents. But she didn't share their anger, says her mother. Even when the Kohls' lawyer confirmed they had a case of medical negligence, Glenna—positive thinking and not one to dwell on the what-ifs—agreed to let the lab settle out of court. "She wasn't resentful; she focused on getting better," says her father, Bob. "Back when we all first got the news, it wasn't a matter of if but how soon she'd be cancer-free."
A Deadly Habit
It's hard to imagine a less likely cancer victim than Glenna. Growing up on Cape Cod, she'd always been a stickler for health. A vegetarian, she did yoga, hiked, jogged, and rowed regularly. She was just 5-foot-3 and 105 pounds, yet she was strong enough to work as a beach lifeguard five summers in a row. Health interested her so much that she applied for jobs in nutrition before graduating from college, despite having majored in finance.
But Glenna did indulge in one unhealthy practice: tanning. Like millions of young women, she believed that a bronzed look made her more attractive. While life-guarding, she exposed her naturally pale skin to the sun's rays for 40 hours each week, protected only by sunscreen with an SPF of 4, says her friend and fellow lifeguard Jillian Blumberg. (Dermatologists say that sunscreen with an SPF of 15 is the minimum needed to safeguard skin.)
To maintain that copper glow, Glenna booked time at tanning salons. She began at age 16 and continued through college, baking under a sunlamp as often as once a week.
Though she knew that all that outdoor sun and indoor-tanning time were bad for her skin, she didn't think there was a serious risk. "As health-conscious as Glenna was, she didn't connect tanning with skin cancer," says Colleen.
Yet tanning is connected to skin cancer. Studies have shown that exposure to UV rays can trigger changes to the DNA in skin cells that may lead to cancerous growths. The two most common types of skin cancer, basal cell carcinoma and squamous cell carcinoma, are almost always linked to UV exposure. And 90 percent of cases of the less common but more deadly form, melanoma, also are attributed to UV exposure, says Darrell S. Rigel, M.D., a professor of clinical dermatology at New York University.
Sun exposure sans sunscreen is a big culprit. But indoor-tanning beds also can result in cancer. A major report released this past August reclassified tanning beds as "carcinogenic to humans." And a person's melanoma risk rises 75 percent if he or she started using a tanning bed before age 30.
Glenna's diagnosis was, sadly, part of a trend: Melanoma is the second most frequently reported cancer in women in their 20s, and it's third only to breast and thyroid cancers for women in their 30s, reports the National Cancer Institute. "Melanoma is one of the few forms of cancer that's on the rise," says Dr. Rigel. The tan look so desired by young women may explain why twenty- and thirtysomethings are diagnosed with the disease at alarming rates, he adds.
Focused to Fight
At first, Glenna didn't reflect on what might have caused her cancer. She was determined to beat the disease and then get on with her life.
In August 2005, treatment began. MGH oncologists removed 13 lymph nodes from Glenna's groin, including the one with the golf ball-size lump. Then she began six weeks of radiation and six months of injections of interferon alfa-2b, a drug believed to help the immune system fight melanoma.
It was a grueling summer for Glenna, who endured extreme side effects, like fatigue and flu symptoms. But she told her parents, "Whatever I have to do to fight cancer, I'll do," recalls Bob.
Glenna also tried to maintain a normal life, leaning on friends Courtney and Jillian for support and attending Red Sox games with her new boyfriend, Will Robinson, now 28.
As the effects of the treatments took their toll, Glenna's long blond hair thinned out, and she started wearing a wig. Her strong facade was beginning to show cracks, especially after a night out with Will, during which an acquaintance told Glenna about a friend who was dying of melanoma.
"Up until then, Glenna had never accepted that she might not get well," says Colleen. "Hearing about this other person blew her out of the water. She came home that night, crawled into bed with us, and sobbed."
By spring, Glenna faced fresh setbacks. Will, a sergeant in the Army Reserve, got orders to go to Iraq for 18 months. Glenna wrote him daily, and they chatted online often.
Then more devastating news arrived: In May 2006, Glenna detected a pea-size lump on her abdomen. A biopsy confirmed the melanoma had returned—now at stage IV, the worst possible stage. But instead of pitying herself, Glenna announced she was going to fight harder.
To battle the tumors that were spreading throughout her body, doctors put her on a different treatment to try to boost her immune system and gave her another round of radiation when they found that the cancer had spread to her brain. Glenna did what she could at home: She drew strength by reading memoirs by cancer patients and books on holistic treatments.
Glenna also began to speak out publicly about the dangers of sun exposure and indoor tanning. She'd come to realize that even though the misdiagnosis by the lab let the cancer develop unchecked, it was her tanning habit—which she gave up the day she was diagnosed—that likely triggered her melanoma in the first place.
One Last Chance
Despite the treatments, Glenna's condition worsened in 2007. But Glenna, ever hopeful, decided to sign up for clinical trials at the National Institutes of Health (NIH), in Maryland.
Glenna lived on the NIH campus for weeks at a time, enduring harsh side effects like crippling nausea and a 20-pound weight gain. During one stay, she dropped her brave front and opened up to Courtney online. "I asked how she was feeling, and she wrote, 'So sick. I can't stop crying,'" recalls Courtney.
When Will returned home from Iraq, the two agreed to just be friends. "Glenna said she didn't want to drag me through her illness," says Will. Adds Courtney: "She was upset, but she didn't have time to mope. She was fighting for her life."
A Legacy of Hope
In January 2008, doctors announced that some of Glenna's tumors were shrinking. But three months later came news that the tumors were growing again. There was nothing doctors could do to stabilize or cure her.
Back home, Glenna's condition went downhill. Lesions in her brain triggered by the cancer slurred her speech, and she wasted away to about 80 pounds. In November, Glenna hit her head in the shower, resulting in brain trauma. A month later, she died of melanoma at home. She was 26.
Her devastated parents launched the Glenna Kohl Fund for Hope, which raises awareness about melanoma and the importance of cancer screenings and UV protection. "Glenna's not here to inform people of the dangers," says Colleen, "so we're going to continue her work for her."
A bill currently before the Massachusetts State Senate aims to ban indoor tanning for those under 16 and require parents to sign a strict consent form for 16- and 17-year-olds. Before she died, Glenna urged lawmakers to pass the bill.
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