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Patients turn to Internet to battle illness Being informed helps them become partners in care

When a blood test in 2000 showed he had chronic myelogenous leukemia, Bryce Morgan first called a doctor friend.

Next, he went online.

Morgan used the Internet to check out his oncologist's qualifications, to decide where to undergo his bone-marrow transplant and to learn what to expect during his recovery.

"It took the fear out," said Morgan, 51, a computer consultant from Buffalo. "I felt like I was in control of my destiny, as much as I could be."

Morgan is one of a growing number of people in Western New York and across the country using the Internet to research diseases, alternative treatments and new drugs.

Patients say this online research makes them feel like a partner with their doctor.

"It helps me have a conversation with an educated partner, even if some of that information is a little askew," said Dr. Thomas C. Rosenthal, chairman of the family medicine department at the University at Buffalo School of Medicine and Biomedical Sciences.

Internet surfing replaced the digging that patients had to do in libraries 10 or 20 years ago.

Those not able to devote the time to search a library's shelves had to rely on anecdotal information from a relative or co-worker. But people back then were more reluctant to talk about an illness such as cancer, doctors noted.

For the most part, only doctors had access to journal articles or data from clinical trials, so the doctor-patient relationship tended to be paternalistic.

That has changed, in large part as a result of the Internet.

Seventy-nine percent of Internet users say they have gone online to research at least one health topic, according to a 2005 survey by the Pew Internet & American Life Project.

Researchers in UB's School of Nursing surveyed 20 female cancer patients about how they used the Internet.

"[Internet research] changes it from a death sentence to an idea that it's a chronic illness, something to be dealt with," said Suzanne S. Dickerson, a UB associate professor of nursing and principal investigator on the study, published in the Oncology Nursing Forum.

Dr. Irene S. Snow, medical director of the Buffalo Medical Group, said that, five years ago, only one of the 20 patients she saw each day in her Williamsville office would ask a question based on online research. Today, it's at least one in four, she said.

>Doctors' reluctance

Not every doctor is thrilled when patients bring up a second opinion from a Web site.

"Some doctors resent the patients coming in with this information. We see that," said Bill McLaughlin, 77, a Clarence resident and leader of the Buffalo metro area chapter of Us TOO, a prostate cancer education and support network.

Marcia Heaney, diagnosed with breast cancer in 2001, said the first oncologist she consulted simply told her what to do.

She sought a second opinion from another oncologist, who urged her to take her time in researching and considering all the possible treatments.

"There are a number of different options for treatment, and you need to be an educated consumer," said Heaney, president of the Breast Cancer Network of Western New York.

Patients tend to ask more and better questions after online searches, said Dr. Judy L. Smith, a surgical oncologist and medical director at Roswell Park.

"It makes the physician's job easier," she said.

With thousands of medical Web sites, how reliable is the information available online?

Physicians and medical experts said the Web sites vary considerably, so patients need to consider the source of the information on each site.

Those experts said reputable sites include WebMD.com,Family-Doctor.org and MedLinePlus.gov, as well as the disease-specific sites of groups like the American Diabetes Association.

One feature on the WebMD site allows visitors to indicate their symptoms -- using a model of a human body -- and to get a possible diagnosis in response. But, a note cautions: "This information is not intended to replace the advice of a doctor."

Dr. James G. Corasanti said the Internet is useful as long as patients don't use it to self-diagnose their ailment.

"[Patients] know what's being done at [the Mayo Clinic], Cleveland Clinic. They demand excellence, which is good," said Corasanti, medical director of the gastrointestinal laboratory at Buffalo General Hospital.

>Caution urged

Morgan, the computer consultant, said his search showed that his oncologist had published 15 papers in the previous nine years.

"I read them all," Morgan said.

Joan Morrissey moved to Snyder two years ago from Atlanta, where she worked as a health communicator for the Centers for Disease Control. Her job involved steering callers to credible online sources of information.

On Easter Sunday 2004, Morrissey awoke to find her right breast red and painfully swollen. She soon learned she had inflammatory breast cancer, a rare form of the illness.

Her cancer is now at the advanced stage 4, and further options for treatment are limited.

At the online recommendation of another patient, Morrissey is taking Avastin, a drug that limits the growth of cancer cells by stopping the production of new blood vessels, and Taxol, a traditional chemotherapy drug.

She said she uses the Internet judiciously.

"Sometimes I get on there, and it gives me encouragement. And sometimes you get trapped, just by reading [patient diaries], and I get depressed," said Morrissey, 42.

Nancy Kelly also said she avoided reading patient diaries, preferring to get hard information that will help her with her own fight against melanoma.

"The Internet is incredibly frank, not that you need all that information every day," said Kelly, 57, a South Buffalo resident and retired county worker who volunteers at Roswell Park.

A number of well-meaning sites also might have inaccurate information.

Patients also need to be cautious with sites that have a financial motivation, all agreed.

Rosenthal, the chairman of UB's family medicine department, recalled a pediatric patient whose mother initially wanted to treat her son's condition with a natural supplement instead of prescription medicine. The same site recommended and sold the supplements, Rosenthal said.

The digital divide between those who can afford access to the Internet and those who can't also remains an issue.

Doctors with primarily suburban practices said their patients regularly use the Internet.

Dr. Chester H. Fox, a physician with the Jefferson Family Medicine Clinic in Buffalo, said his patients largely do not, and he is unable to recommend Web sites where they can do research.

Other doctors note patients have access to computers in area public libraries. And Roswell Park, for example, offers Internet access at a cancer resource center and on laptops that patients can take to their rooms.

The hospital also has set up three computer kiosks where patients can look up and print out information provided by the National Cancer Institute.

e-mail: swatson@buffnews.com

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