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AFTER THE DIAGNOSIS
THE SHOCK OF LEARNING YOU HAVE CANCER CAN BE PARALYZING. BUT MANY PEOPLE DECIDE TO TAKE CONTROL OF THEIR LIVES AND THEIR TREATMENTS BY COMBING THE INTERNET AND OTHER CONSUMER-FRIENDLY RESOURCES TO GET THE INFORMATION THEY NEED

Lorie Duquin recalls her immediate reaction, in early March, to the life-altering news: You have cancer.

"I thought about what music I'd want for my funeral Mass," said Duquin, 50.

On the same day she heard the news, Duquin was one of more than 2,000 people in this country who got the same diagnosis; 2,000 people who would react with disbelief, tears, rage, numbness, disorientation.

And then what?

Nothing, at first.

"First, take a deep breath," advises Joanne E. Janicki, director of the Western New York Breast Resource Program at Roswell Park Cancer Institute. It will take 48 to 72 hours, typically, to start processing the news.

"Initially, at least, the brain turns to cotton candy," she said.

Though equating cancer with death is common and understandable, Duquin didn't wallow there for long. "Really, I'm so far away from making that choice," said the vivacious Williamsville author, whose most recent book is "When A Loved One Leaves the Church."

She did what many do when they have a concern about health: she clicked on to the Internet. In fact, in early January when she noticed bleeding from a nipple, she went to her computer keyboard before she even called her doctor.

"I waited for two days before I called for an appointment," she said.

A just-released study shows that almost 100 million Americans go online in search of health information and 70 percent of them say that what they learn influences their treatment decisions, according to the findings of the California HealthCare Foundation.

Internet research has become so commonplace that Roswell provides "Surfing for Survivorship," a sheet listing more than two dozen recommended Web sites. There are clearinghouse sites that will e-mail the latest clinical trials involving specific cancers, allowing patients, sometimes, to get this news before their doctors do. There are sites that show a skin-saving form of breast reconstruction.

Janicki raises a note of caution, though, advising consumers to be aware of who is maintaining the site and why.

"If they are a dot-com, it means commercial and they want to sell you something," she said. Her advice is to stick to the "gov," "edu" and "org" sites for credible information.

After her cancer was identified, Duquin started her intense quest to learn about ductile carcinoma in situ as she awaited biopsy results. She pored over clinical studies, investigated experimental trials, and read through her medical "bible," "Dr. Susan Love's Breast Book."

"It was therapeutic to do this," she said, as she plunks onto her kitchen table a small version of an oval laundry basket that overflows with clippings, printouts, letters and doctors' reports.

"It gave me a sense of control over what would happen," said Duquin. "I was on a mission to get information. I focused only on cutting-edge research. I didn't want testimonies from other people."

Mostly, she wanted a frame of reference -- success rates, side effects, options, her pathology report -- to better understand the "cancer culture" so that she could intelligently discuss margins, centimeters, systemic therapy.

"I really think doctors are more open if they know that you understand what's going on," she said.

Making the final decision

Besides her cyberspace search, Duquin was seen by her gynecologist, a general surgeon, a medical oncologist, a plastic surgeon, a radiation oncologist and a breast surgeon. She also talked with a woman who had a prophylactic double mastectomy and she visited a shop to see what it would be like to use a prosthesis in case she had a mastectomy.

Then, something happened that she didn't expect: There was a difference of opinion between two groups of doctors about treatment, which in the past would have led to an "automatic mastectomy," she said.

One team suggested mastectomy. The second suggested radiation. She decided to go with a course of radiation, influenced by recent studies that show that less radical surgery and radiation, along with taking Tamoxifen for five years, is as effective as a mastectomy for her particular form of cancer.

"You know how you just get a gut feeling," said Duquin, who started therapy on June 5.

"I made this decision based on information that I have. If it turns out that in two years or five years I have a recurrence, I know I'll be tempted to think that I should have had a mastectomy. If I do have a recurrence, then I'll have the mastectomy.

"Fairly quickly I realized I had to stay in the moment. Fears and regrets just distract you from what you have to do."

Janicki said that when patients get conflicting opinions, they should ask the original doctor: "Why are you saying this treatment makes sense for me?"

"People like to think treatment options are cut and dry, but they aren't," Janicki said. "At some point it might boil down to your intuition. I don't ever discredit it when someone says a certain treatment makes sense for them."

Duquin said that as she did her research, she always clung to the idea that she would make the ultimate decision in consultation with her family.

"In the back of my mind, I know this is not an exact science. It's scary, but I know there are no guarantees.

"I don't look at medical people as gods," she said. "I see them as an incredibly dedicated team, but I have my God in the right place."

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