Tue, Jul 31, 2007 - Page 13 News List

The cancer maze

As if suffering from cancer were not enough, the complexity of the disease often means patients have to face difficult and complex decisions about what medical advice they should trust

By DENISE GRADY  /  NY Times News Service, New York

The first doctor gave her six months to live. The second and third said chemotherapy would buy more time, but surgery would not. A fourth offered to operate.

Karen Pasqualetto had just given birth to her first child last July when doctors discovered she had colon cancer. She was only 35, and the disease had already spread to her liver. For the past year, she and her relatives have felt lost, fending for themselves in a daunting medical landscape in which they struggle to make sense of conflicting advice as they race against time.

"It's patchwork, and frustrating that there's not one person taking care of me who I can look to as my champion," Pasqualetto said recently in a telephone interview from her home near Seattle. "I don't feel I have a doctor who is looking out for my care. My oncologist is terrific, but he's an oncologist. The surgeon seems terrific, but I found him through my own diligence. I have no confidence in the system."

It was a sudden immersion in the scalding realities of life with cancer. This year, there will be more than 1.4 million new cases of cancer in the United States, and 559,650 deaths. Only heart disease kills more people.

Cancer, more than almost any other disease, can be overwhelmingly complicated to treat. Patients are often stunned to learn that they will need not just one doctor, but at least three: a surgeon and specialists in radiation and chemotherapy. Doctors do not always agree, and patients may find that at the worst time in their lives, when they are ill, frightened and most vulnerable, they also have to seek second opinions on biopsies and therapy, fight with insurers and sort out complex treatment options.

The decisions can be agonizing, in part because the quality of cancer care varies among doctors and hospitals, and it is difficult for even the most educated patients to be sure they are receiving the best treatment.

"Let the buyer beware" is harsh advice to give a cancer patient, but it often applies. Excellent care is out there, but people are often on their own to find it. Patients are told they must be their own advocates, but few know where to begin.

"Here it is, a country with such a great health system, with so many different breakthroughs in treatment, but even though we know things that work, not everybody who could benefit gets them," said Nina A. Bickell, an associate professor of health policy and medicine at the Mount Sinai medical school in Manhattan.

Death rates from cancer have been dropping for about 15 years in the US, but experts say far too many patients receive inferior care. Mistakes in care can be fatal with this disease, and yet some people do not receive enough treatment, while others receive too much or the wrong kind.

"It's quite surprising, but the quality of cancer care in America varies dramatically," said Stephen B. Edge, the chairman of surgery at the Roswell Park Cancer Institute in Buffalo, New York. "It's scary how much variation there is."

Government and medical groups acknowledge that the quality of care is uneven. In 1999, a report by the Institute of Medicine in Washington said, "For many Americans with cancer, there is a wide gulf between what could be construed as the ideal and the reality of their experience with cancer care." The institute noted that there was no national system to provide consistent quality.

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