Researching your disease

When Faye Plant of Calgary was diagnosed with skin cancer four years ago, not only did she have to figure out her disease, she wanted to find out about the latest treatments.

"The hospital gave us handouts but they were depressing. Then we went to the library, but printed materials are often dated."

It's a situation many people diagnosed with serious illnesses find themselves in these days. One day they've never heard of an ailment, the next they want to arm themselves with as much information as possible so they can fight it more effectively. Finding good information fast becomes a priority.

Faye and her husband hit the computer. "It was cathartic to go on the internet. I questioned some sites but it didn't stop me from going to a lot of them. My husband printed off a lot of stuff. The internet is a fabulous thing; it's like having a library in your house. However, it's like anything else — you have to approach it with a healthy cynicism."

"Doctors and hospitals can often give you a reliable site and that's what you want, reliability," said Dr. Robert Buckman, an oncologist at Toronto's Princess Margaret Hospital and professor in the department of medicine at the University of Toronto. "What you don't want is someone in a basement in Vancouver who says they've found the cure. The important thing is not the information you see on your screen but who tells it to you."

'The important thing is not the information you see on your screen but who tells it to you.' Dr. Robert Buckman, oncologist

The best places to start are the websites of hospitals and universities, as well as reputable health organizations. Many of these are on top of the latest research being done by the medical community as well as clinical trials.

Medical journals, pharmaceutical companies and disease foundations or associations also have websites that dispense helpful and reliable information.

"We've provided definitions of diseases — like the difference between congenital heart disease and congestive heart disease, for instance," explained June Rogers, national editor of the website and publications for the Heart and Stroke Foundation. "Then there are the treatments as well as the medications that go with the conditions. There's also international news and Heart and Stroke-funded studies. Medical experts have reviewed all our information. It's one stop-shopping."

Check more than the internet

Prostate cancer patient Jamie Godfrey hit the internet when he was diagnosed several years ago. "I must have visited 50 or 60 websites. There was so much information."

However, he found it more helpful to speak with other patients. When he was receiving a treatment at a health-care facility outside Canada (which he discovered through a newspaper article), another patient informed him of a new treatment for prostate cancer being performed right in his home city of Toronto.

"I went to a support group," he added. "One guy beside me told me about pharmaceutical companies and the types of drugs they were testing. I learned more about a nutrition seminar at one of the hospitals, then discovered a nutritionist and a naturopath."

Researching breakthroughs in complementary medicine can sometimes be more challenging, Calgary naturopath Eric Arrata said.

"Because most of the therapies are natural or derived from a natural substance, you are not able to patent or retain rights to a particular treatment," Arrata said. "So there's not a lot of money put into research by larger entities. The research done is more independent. Some therapies have an organization behind them and there is a lot of information on those. For others, it's just based on the work of one individual."

Arrata suggests taking personal research to a naturopath. "It's good to work with a health professional who has experience in the area, someone who knows and can be a guide."

Naturopaths are quite open to working in co-operation with their patients to treat their diseases, he added.

What Plant did to help her understand information she'd culled from the internet was consult other health care professionals. She didn't want her own doctor to feel threatened, but at the same time, she needed answers to what she was discovering.

'You get the spiel in the doctors office, but it's a lot of information to take in at the time.' Faye Plant

Plant also did her own research on the results of clinical trials of the drug being used to treat her. "You get the spiel in the doctor's office, but it's a lot of information to take in at the time. We printed out information from clinical trials that had been done on the drug."

For both Plant and Godfrey, it's a continuing learning experience. While there are different ways to go about researching health information, they both figure that the more they know, the better equipped they'll be to fight their diseases.