By Dan Pacheco 
Denver Post Staff Writer 
Dec. 6, 1994 

When kidney cancer first pranced uninvited through Boulder computer programmer Steve Dunn's door in 1989, he wasn't ready to hear his dismal odds for survival: 

He had a 4 percent chance of living three years if he wasn't treated. 

Learning the disease had spread to his lungs - even after surgery to have his spleen and a kidney removed - didn't lighten his spirits, either. 

But something else gave him a glimmer of hope. 

Something the computer programmer knew all about ... 
 

"The Internet is like a mega-brain that you can pick. That's what makes it so powerful."  -Steve Dunn

 
 

After seeing that his radiologist and chemotherapist couldn't agree on the best treatment, Dunn put his nose to the books. He began searching through medical libraries, photocopying reviews of clinical trials that even his doctor was unaware of. And eventually he began hunting through on-line computer data bases. 

"I have a biology degree - I figured I could understand at least some of this stuff," Dunn said. What he discovered was a then-little-known treatment involving very high doses of Interleukin 2, a synthetic protein normally produced by the body to help regulate the immune system. He sought that aggressive treatment and, five years later, the cancer is in stable remission. 

People researching their own illnesses isn't new, but the way they're doing it is. With the digital equivalent of tomes of information available through the computer, those who won't or aren't able to physically dig through libraries now are able to uncover life-saving data in a fraction of the time. 

"I think patients, compared to the 1960s, are much more actively involved in seeking as much information as they can get from a whole variety of sources, including electronic," said CU Health Sciences Center oncologist Michael Glode. "My patients are extremely sophisticated now in being able to get (medical) information through fax machines and by telephone." 

But Dunn, who also used the old-fashioned method, says computers are revolutionizing the way people dig for data. 

He recently discovered on-line medical data bases that he says are faster and more diverse than paper searches. Some of them, like MedLine, can be accessed through public data bases like CARL, something many Colorado libraries now use in place of card catalogs. 

MedLine is the most powerful medical data base in the world and holds in excess of 8 million abstracts and references to medical journals. The cost of access can be high, as much as $23 an hour, but that's nothing compared to a life, Dunn says. 

"When I was going through the difficult process of life-and-death decisions, I didn't know about the on-line world, despite being a computer programmer. I'm in remission now, but by monitoring the Internet, I keep up with what I need to know if I ever relapse," he said. 

Worldwide hookup 

The Internet is a global network directly linking 3.2 million computers. It allows people to read and send personal mail, search through data bases and - like a community bulletin board - post messages in public places. Depending on which expert you ask, anywhere from 5 million to 20 million individuals are buzzing around the virtual world, commonly called "cyberspace." 

In addition to reading up on specific treatments, patients can quickly hook up with people who have been there. In a community of several million, you're bound to find at least one person who has been down the same dark path you have, Dunn said. 

"The Internet is like a mega-brain that you can pick. That's what makes it so powerful," he said. 

Every day, Dunn hooks up like an electric Samaritan on his home computer and reads through Usenet News "newsgroups" to find people in need of help. Newsgroups are like computerized bulletin boards on which anyone using the Internet can post comments. There are dozens of health-related newsgroups covering everything from diabetes to support groups for terminally ill patients. 

"It's a way to get emotional support," Dunn said. "A lot of people will write in asking if anyone has gone through what they're experiencing." 
 
 

"There's no guarantee that you will even find hope."  -Steve Dunn

 
 

Last month, an Arizona Internetter named "Greg" sent this plea to members of the newsgroup: "alt.support.cancer:". 

"My wife is going to the Arizona Cancer Center in Tucson next week to have her stem T-cells harvested and then frozen ... Is it painful? Does it cause fatigue, headaches, nausea ... ?" 

Another man showered several newsgroups with gratitude. 

"I just wanted to say thanks to everybody who e-mailed me recently regarding my last posting about my ill mom," he wrote. "It helps me to cope knowing that there are others out there in support of me." 

But there's also a trace of caveat emptor. In addition to emotional support, a patient's hopes can sometimes be shattered by digging too far. 

"Finding out the actual truth of a serious illness can be very difficult. ... When you go looking for information, the information you receive could be devastating," Dunn said. 

"There's no guarantee that you will even find hope." 

And oncologist Glode said a patient will never get far without working closely with a doctor. 

Too much information 

He sees three potential problems for cure-hunters, those on-line and off. For one, the sheer amount of conflicting opinions can put the patient in a never-ending information glut. 

"The patient can become overly interested in data gathering and never become involved in making certain decisions," he said. 

"Nowadays, you can pick up the phone and call four or five experts around the country and not make a decision because there might be disagreements about the solution to your problem. ... You can become an information addict." 

The second pitfall is the layman's inability to bring into the equation the quirks caused by multiple illnesses and other medications. 

"Those of us who went to medical school did so for four years, and after college for about eight years. A lot of that training involved experience with patients who had complex diseases that interacted with each other. A patient can't possibly comprehend that kind of knowledge base," Glode said. 

Lastly, some doctors might feel threatened by patients who question or seek different opinions, though more are becoming used to inquiring minds. 

"In the old days, you might pay the doctor for his or her knowledge base. These days, the knowledge base is easily accessible," Glode said. 

"What you're paying for is wisdom in choosing among separate diagnostic options. That wisdom includes knowledge of side effects, cost-effectiveness and weighing individual aspects holistically." 

Glode also looks disfavorably upon the increasing number of self-proclaimed medical experts, especially those without medical degrees, who lurk electronically in newsgroups. 

"From the very small amount that I've looked at, I've quickly found that there's a great deal of unorthodox, fringe recommendations. 

"That has to do with a very deep-seeded desire of human beings to be reductionist," he said. 

Dunn couldn't agree more, and has an easy solution. 

"Never go out to the 'net and say that you have alarming symptoms and then ask people for a diagnosis. You should not be doing that; you should go see a doctor," he said. "If you are seeing a doctor and the doctors aren't getting anywhere, then that's another situation."