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Ms. Stettler and her husband, a truck driver, began searching the Internet. She found Dr. Charles Nutting, an interventional radiologist at Swedish Medical Center in Englewood, Colo., who was just beginning to study a treatment that involves injecting tiny beads that emit small amounts of radiation. That appeared to help for about 18 months.
When her disease progressed again, Ms. Stettler searched for clinical trials of treatments for advanced ocular melanoma, and found a National Institutes of Health study of “isolated hepatic perfusion,” which delivers concentrated chemotherapy to patients with liver metastases. After the first treatment, Ms. Stettler’s tumors had shrunk by half.
“I don’t like statistics,” she said. “If this study stops working for me, I’ll go find another study. Each type of treatment I have is stretching out my life. It gives me more time, and it gives more time to the people who are working really hard to come up with a treatment for this cancer.”
Don’t limit yourself to the Web
There’s more to decoding your health than the Web. Along with your doctor, your family, other patients and support groups can be resources. So can the library. When she found out she had Type 2 diabetes in 2006, Barbara Johnson, 53, of Chanhassen, Minn., spent time on the Internet, but also took nutrition classes and read books to study up on the disease.
“I was blindsided — I didn’t know anybody who had it,” said Ms. Johnson, who told her story on the American Heart Association’s Web site, IKnowDiabetes.org. “But this is a disease you have to manage yourself.”
Tell your doctor about your research
Often patients begin a health search because their own doctors don’t seem to have the right answers. All her life, Lynne Kaiser, 44, of Plano, Texas, suffered from leg pain and poor sleep; her gynecologist told her she had “extreme PMS.” But by searching the medical literature for “adult growing pains,” she learned about restless legs syndrome and a doctor who had studied it.
“I had gone to the doctors too many times and gotten no help and no results,” said Ms. Kaiser, who is now a volunteer patient advocate for the Web site WhatIsRLS.org. The new doctor she found “really pushed me to educate myself further and pushed me to look for support.”
Although some doctors may discourage patients from doing their own research, many say they want to be included in the process.
Dr. Fisch of M. D. Anderson recalls a patient with advanced pancreatic cancer who decided against conventional chemotherapy, opting for clinical trials and alternative treatments. But instead of sending her away, Dr. Fisch said he kept her in the “loop of care.” He even had his colleagues use a mass spectroscopy machine to evaluate a blue scorpion venom treatment the patient had stumbled on. It turned out to be just blue water.
“We monitored no therapy like we would anything else, by watching her and staying open to her choices,” Dr. Fisch said. “She lived about a year from the time of diagnosis, and she had a high quality of life.”
Dr. Shalom Kalnicki, chairman of Radiation Oncology at the Montefiore-Einstein Cancer Center, says he tries to guide his patients, explaining the importance of peer-reviewed information to help them filter out less reliable advice. He also encourages them to call or e-mail him with questions as they “study their own case.”
“We need to help them sort through it, not discourage the use of information,” he said. “We have to acknowledge that patients do this research. It’s important that instead of fighting against it, that we join them and become their coaches in the process.”
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