Diagnosis.com

Story by Alexis Tahiri // Photos by Michael Leese

For Dixey, who at the time had a business producing interactive media with his wife, it was not a good time for this ominous sign to appear. Sept. 11 had occurred just 41 days earlier, and the implications of the attack had already begun to compromise their business. At the time, nothing seemed to be going well for Dixey.

"When I saw the seat, I just felt that something wasn't right," Dixey says. "My wife noticed that my mood had recently changed and I would get sleepy easily."

But despite the tryptophan in the turkey, Dixey was not able to sleep that night. Forty-year-old Dixey was admitted to the emergency room that night because of the little pink dot. Doctors took CT scans, but the only result of the emergency room visit was a recommendation to see an urologist.

Dixey took this advice and went to see urologist Dr. Erik Torgerson at Swedish Medical Center in Seattle, who implemented a series of tests, trying to find the source of the blood.

Dixey says the last test he underwent was a cystoscopy-a camera designed to measure the health of the bladder. As the cystoscope entered the urethra and traveled through Dixey's urinary tract, Torgerson closely examined the dark pathway to his bladder. It was only when the camera entered the cavernous organ that Torgerson saw what he feared-six cancerous tumors lining the walls of Dixey's bladder.

On the eve of 2002, when most are thinking of the fresh start the new year will bring, Torgerson called Dixey to give his prognosis. He said the most effective treatment was to remove Dixey's bladder, prostate and all the lymph nodes in his hips. Along with the painful side effects of the drugs, which were included in the prognosis, Dixey would have to wear a bag on the side of his hip for the rest of his life and would lose any chance of having children.

"I was shocked at first and then kind of angry because I felt that no other options were given to me," Dixey says. "I think it was that anger that drove me to find out more."

He and his wife began to gather as much information as they could about bladder cancer, including successful treatments and which doctors had the most experience dealing with his disease.

"I made it my mission to get educated about it," Dixey says, scratching his salt and pepper beard and adjusting the frame of his thick-rimmed glasses. "Because my wife and I had been in new media, we knew about effectively searching online to get the information we needed."

Dr. Jim Hopper, medical staff director and family physician at St. Joseph Hospital in Bellingham, says many of his patients go online to educate themselves about their diagnosis.

"When patients are in the [doctor's] office at the time of diagnosis, the information sometimes goes right past them," Hopper says. "They can get valuable information from the Internet."

According to a study by the Pew Internet & American Life Project, 80 percent of American adult Internet users search for healthcare information online.

"There are a lot of credible sites out there," Hopper says. "[Looking online] is helpful because it gives patients a little more voice to ask about their illness."

These Web sites are creating new opportunities for patients facing serious illnesses to have a say in the course of action that is taken to treat them.

Dixey says he found a Web site where a man, whose case was similar to Dixey's, was discussing his experiences. He recommended an oncologist in Massachusetts, but Dixey wanted to be treated in Seattle, as his wife was still trying to keep their business afloat.

However, the man from the site did give Dixey some helpful advice. He told Dixey he used a team of doctors to fight his illness, including a surgeon and oncologist, who practiced traditional Western medicine, a naturopathist and a doctor, who practiced traditional Chinese medicine. The man from the site said this team was able to save his bladder, giving Dixey a glimmer of hope.

Dixey's case was also posted to an online tumor board where doctors discuss difficult or strange cases. There he was introduced to Dr. Ben Chue of Seattle. Dixey says he became interested in Chue's opinion on his disease, and thought it would be worthwhile to schedule an appointment.

"[Chue] scratched his head and said, 'This is a really strange situation. I don't usually take new patients, but I saw your case on the tumor board,'" Dixey says about his initial appointment with Chue.

Chue thought Dixey's organs could be saved.

Dixey says he and his wife did not stop researching the disease once his team of doctors was assembled. When it was time to start battling his disease, Dixey went online and found a new treatment for bladder cancer that mixes the traditional drug used to treat the disease, Bacillus Calmette-Guerin, with Interferon, a drug that helps raise the body's immune system. Dixey presented this information to his doctor, who then began treating him with the regimen.

"By using the Internet, I got as many points of view as possible, and we were able to make informed decisions," Dixey says. "I've lost three or four friends in the past five years because they didn't ask questions and just went with what the doctor told them."

Dr. David Lynch, president of the Whatcom County Medical Society and vice president of the Family Care Network, created FamilyCareNetwork.com in 1996 with the mission of providing patients with credible information from doctors in the network, as well as offering links to other credible Web sites.

"By working together with other doctors in the network, we can do a better job of treating our patients," Lynch says.

He finds it helpful when patients bring information they find online to appointments, as it focuses on the needs and concerns of the patient, Lynch says.

Whatcom County residents are taking advantage of the information FamilyCareNetwork.com offers. The site receives about 4,000 hits daily, Lynch says.

MayoClinic.com is a Web site that compiles information on nearly every aspect of healthcare, including disease conditions, symptoms, drugs, tests and even lifestyle choices. More than 3,000 doctors and researchers share their expertise on the site and a team of editors, who, according to the site, also have doctor of medicine degrees, screens all the information.

In 2007, 47-year-old Gayle McCall was diagnosed with aggressive breast cancer. After the initial shock of her diagnosis, she looked to the Internet for information and support from others who were having the same experience.

"There is no way to emotionally prepare for something like that, so I prepared myself mentally," McCall says.

During the course of McCall's treatment, she developed neuropathy in her face. According to WebMD.com, neuropathy occurs when the brain stops recognizing nerves. McCall lost sensation from her knees down, as well as around her eyes and mouth. Her nerves were starting to deteriorate.

But, McCall did not give up. She read about the benefits of antioxidants on a blog and found they not only acted as a natural pain reliever, but also could help to reverse neuropathy.

She began eating red apples as a source of antioxidants. Red-skinned apples contain the most antioxidants out of any type of apple, McCall says. Before long, the feeling in her legs started to return. She also found eating red apples suppressed her pain more than the medicine her doctors prescribed to her.

"I would take four to six Vicodin each day for pain," McCall says. "After I started continuously eating apples, I found I didn't need to take as many. Some days I took none at all."

McCall says looking to blogs for others' experiences helped her to be more observant of her environment and what went into her body. She says instead of blaming every symptom on the cancer and chemotherapy, she would research what others were saying about the symptoms.

Millions of health related Web sites discussing just as many opinions are posted from sources worldwide, which Dixey says is a benefit of researching online.

"[My wife and I] wouldn't have been able to learn as much as we did without the information we found online," he says.

Dixey says his oncologist was initially skeptical about the team of doctors Dixey heard about online, but when he saw the positive outcome of Dixey's treatment, he started recommending the same treatment for other cancer patients.

Both Dixey and McCall battled their diseases with information, and doctors today are beginning to refer patients to Web sites to help them learn about what they are facing. Looking online may soon become doctor's orders.