OHSU starts registry to learn why rates are fifth-highest in U.S.

by: TRIBUNE FILE PHOTO: CHRIS ONSTOTT - Sunny days such as this one may seem rare, but that doesnt mean Portlanders dont have to worry about skin cancer. OHSU is asking melanoma patients to enter a registry so they can begin studies to explain Oregons melanoma rate, which is particularly high among young women.Dr. Sancy Leachman has been studying an Oregon problem that makes no sense. Oregon has the nation’s fifth-highest rate of melanoma — the most serious kind of skin cancer — in the country.

Texas? California? Florida? None of those states rank even in the top 10. But Washington and Idaho do.

Clearly, something is occurring in the Pacific Northwest that is leading to this dreaded disease, and it isn’t a proliferation of sunlight. Leachman, chairman of the Oregon Health & Science University department of dermatology, has for awhile had more than a few hypotheses to explain the puzzle. Now, she potentially has a means for producing answers — the OHSU Community Melanoma Registry.

Leachman needs a few thousand Oregon melanoma victims to register to participate in future research — filling out forms, having their skin occasionally examined, maybe producing a blood sample. This week the Oregon State Cancer Registry sent out letters to almost all of the state’s 30,000 or so melanoma victims asking them to join Leachman’s registry. No other state has ever tried contacting all its melanoma victims in order to use them collectively for research, according to Leachman.

But Leachman needs volunteers, 2,000 at least for basic studies, 20,000 or so for detailed research that could help unlock the keys to Oregon’s high incidence of melanoma and maybe provide insight into how the disease progresses.

“If I can make (the registry) wildly successful, one of my major goals to to find out what we can do to identify the melanomas earlier so we can cut them out so they don’t kill you,” Leachman says.

Every year about 2,200 Oregonians are diagnosed with melanomas. Every year about 150 Oregonians die from the skin cancers. Leachman says the disease is “epidemic” among the state’s young women. She’s guessing that might be because young women aren’t wearing enough sunscreen or because they overuse tanning beds. That’s why OHSU lobbied for a bill passed by the Legislature last year that makes it illegal for young men and women under 18 to use a tanning bed without a physician’s permission.

As for Oregon’s overall high rate of melanoma, Leachman has a few hypotheses. Maybe, she says, Oregonians are fooled by the cloudy weather into thinking they don’t need sunscreen. Or perhaps, she says, when the long months of rain finally yield to sunny days, sun-starved Oregonians rush out and get a quick burn to start the summer, which can lead to later melanoma. Genetically, Oregon’s predominantly light-skinned population probably pre-disposes residents to skin cancer.

Another possibility, according to Leachman, is that the Oregon cloud cover is changing the proportion of UVA to UVB rays, which may be a factor in melanoma development.

For awhile, Leachman theorized that Oregon’s high melanoma rate was disproportionally due to residents east of the Cascades contracting the disease. But it turns out, she says, that most of the cases being reported are west of the mountains.

Leachman calls melanoma “the poster child for early detection.” Caught early, melanoma, the most dangerous of three types of skin cancer, is almost never fatal. “But if you catch it late, it’s almost always deadly,” she says.

Currently, 60 to 70 percent of melanomas in Oregon are caught in early stages, according to Leachman, and only about 10 percent are caught after they have significantly spread beneath the skin. Among young woman in Oregon, melanoma is the most common of all cancers.

With letters having just gone out to Oregon melanoma victims, OHSU is hoping to attract registrants at the annual melanoma fundraising walk organized by nonprofit AIM at Melanoma. Leachman says if she can get 20,000 melanoma victims participating in the registry, she can learn why so many are not diagnosed early, and devise processes so that late detection becomes a thing of the past.

The event is coordinated by 27-year-old OHSU employee Katie Wilkes, who says she wonders why Oregon’s skin cancer rate is so high, and also why she was diagnosed with melanoma four years ago. As for the latter, she thinks she knows the answer.

“The first thing a lot of doctors have asked me is the tanning bed question,” says Wilkes, who says she started visiting tanning salons at 16 and continued through college, sometimes as frequently as twice a week. She has naturally fair skin, but no family history of melanoma. Her disease was caught early and treated, and she has been cancer-free since 2010.

The melanoma walk and health fair is scheduled for 8:30 a.m. Saturday, May 31, at Wallace Park in Northwest Portland. A dermatologist will be on hand to perform free skin checks.

People also can volunteer for the melanoma registry at

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