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. The months she had hoped to spend getting to know her new daughter were hijacked by illness, fear and a desperate quest to survive. 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 in hopes of saving her life.

“It’s patchwork, and frustrating that there’s not one person taking care of me who I can look to as my champion,” Ms. 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. Diagnosis and treatment require a seemingly endless stream of appointments. 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 Dr. 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 United States, 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 Dr. Stephen B. Edge, the chairman of surgery at the Roswell Park Cancer Institute in Buffalo. “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.

In March, cancer organizations tried to address the problem by issuing the first set of quality measures that can be used to judge whether hospitals are giving patients up-to-date care for breast and colon tumors, two of the most common cancers.

The list of measures calls for treatments that seem so basic even to a layperson that it is shocking to think any hospital would skip them. For instance, it says that women under 70 who have lumpectomies for breast cancer should also have radiation, and that doctors should consider chemotherapy for people with colon cancer that has spread to their lymph nodes.

Dr. Edge, who worked on the measures, said, “While they’re fairly simple and straightforward, and they seem very basic, it’s quite surprising how many people do not get the care that’s recommended.”

Treatment guidelines approved by experts already exist for 70 to 80 types of cancer (http://www.nccn.org/), but the new measures are the first to be formally endorsed by cancer organizations to assess whether hospitals are performing up to par. The measures were developed by the American College of Surgeons’ Commission on Cancer, the American Society of Clinical Oncology and the National Comprehensive Cancer Network, and are available online at www.facs.org/cancer/qualitymeasures.html.

It took more than two years, Dr. Edge said, before experts even agreed on these basic principles. The first goal is to give doctors and hospitals a chance to see how they stack up to national standards. Eventually, the measures may be used by regulators and payers, including Medicare, he said.

First Sign of Trouble

Karen Pasqualetto is slight and dark-haired, with a soft voice that belies how tough she is. After giving birth by Caesarean section last July, she noticed a lump under her ribs. It was the size and shape of a banana. Doctors noticed it but did nothing. She was sent home and was told it was probably a bruise. Within a week she was back in the hospital, terribly ill — swollen with fluid, vomiting, so anemic she needed a transfusion and suffering from severe abdominal pain. Tests found colon cancer that had already spread, or metastasized, to her liver — stage 4, the final chapter of the disease.

“The doctor came in with a tear in his eye,” she recalled. “ ‘It’s bad.’ Those were his exact words. ‘You have maybe six months.’ ”

Surgery was not recommended because the liver tumors were too extensive. She was referred to an oncologist, who offered “palliative” chemotherapy, given strictly to ease symptoms, not to try for a cure.

“His attitude was that it wouldn’t really make a difference,” Ms. Pasqualetto said.

Palliative treatment was all her health plan would cover. But she had read enough about the disease to know that the proposed regimen did not include the full program of drugs typically recommended for stage 4.

Look for other opinions, her family urged. Her husband had a new job that provided better health coverage, and they switched to a different insurer.

“I think I’d be dead if I’d stayed with the first provider,” she said.

Ms. Pasqualetto, a self-described Type A go-getter, knew better than most how to find information. She has a law degree and worked for several technology start-ups. She had made enough money to quit that career and do something she loved, teaching sixth grade at a Catholic school in Seattle.

She rejected the first oncologist after one visit and consulted the well regarded Seattle Cancer Care Alliance and Swedish Cancer Institute. Both recommended aggressive chemotherapy. Surgery might be possible, they said, if the drugs would shrink the tumors enough. She chose an oncologist at the Swedish institute Dr. Philip Gold, who brushed aside her six-month death sentence and assured her that people with stage 4 colon cancer could live three to four times that long.

“His message to me as a patient was, ‘I have a lot of tricks up my sleeve, this is what we start with, and if it doesn’t work I have this, and then I have a clinical study,’ ” Ms. Pasqualetto said. “The feeling I got was, there was hope, and a plan of attack.”

Eleven months later, after 22 courses of treatment, she gave Dr. Gold credit for keeping her alive and giving her extra time with her daughter, Isabel.
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When Charlie Weis decided he had to have gastric bypass surgery in 2002, he first shared the decision with his then-quarterback, Tom Brady.

Only in the final stages before surgery did he divulge his plans to his wife, Maura.

Football first, family second.

That’s among the nuggets that became public knowledge during Weis’ medical malpractice lawsuit filed against two Boston doctors — a battle he lost Tuesday when the jury ruled Dr. Charles Ferguson (Massachusetts General Hospital Weight Center) and Dr. Richard Hodin (Harvard Medical School) to be “not negligent.”

Weis admitted Wednesday in a statement that, “I realized victory was a longshot but was still surprised with the verdict.”

Why? Because football coaches always think things should go their way?

Here’s another testimonial nugget that reminds everyone why football czars rank among the most controlling people on the planet.

After the 350-pound Weis consulted with Ferguson and decided to undergo a gastric bypass — a risky procedure by any measurement — he demanded the standard six-week pre-op prep period be waived.

It was summertime, you see, and the then-New England Patriots offensive coordinator couldn’t waste time because he wanted to be back on the field for training camp.
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BOSTON — A jury found against Notre Dame football coach Charlie Weis on Tuesday in his malpractice lawsuit against two doctors he claimed botched his care after he had gastric bypass surgery five years ago.

The jury deliberated for less than half a day before finding Massachusetts General Hospital surgeons Charles Ferguson and Richard Hodin were not negligent.

Weis, 51, who won three Super Bowls as the offensive coordinator for the New England Patriots, accused the surgeons of negligence, saying they allowed him to bleed internally for 30 hours before performing a second surgery to correct the complication.

Weis nearly died after the 2002 surgery. He testified that he still has numbness and pain in his feet and sometimes has to use a motorized cart.

Weis was stoic as the verdict was read and left the courtroom without comment. His lawyer, Michael Mone, did not immediately return a call seeking comment.

The doctors declined to comment as they left the courtroom, referring questions to their attorney, William Dailey Jr.

“They and all of the staff down at the Mass. General wished Coach Weis well,” Dailey said.
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The probationary sentences handed to three Purdue Pharma executives last week seem almost trivial in light of the suffering caused by their blockbuster drug, OxyContin.

The over-hyped painkiller cut a whirlwind’s path through Southwest Virginia, leaving behind addiction, death and ruined lives. At the same time, sales of the drug enriched the executives and fattened their company’s bottom line.

Profit trumped the public good. It must not do so again.

The OxyContin saga should prompt Congress and federal regulators to re-examine the incestuous relationship between drug companies and doctors. The pitfalls of the present situation aren’t limited to OxyContin. Pharmaceutical representatives aren’t acting on altruistic impulses when they promote the latest, most expensive drug to doctors; they’re motivated by profit – pure and simple.
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July 25 (Bloomberg) — Australia health officials may want to encourage greater use of circumcision for infant boys as research shows the procedure can help prevent the spread of HIV, the country’s top AIDS expert said.

The surgical procedure performed on adult men in Africa reduced their chances of getting HIV through heterosexual intercourse by as much as 60 percent, according to the World Health Organization. The finding is encouraging doctors in Australia to rethink their opposition to the practice, David Cooper, director of the National Centre in HIV Epidemiology and Clinical Research in Sydney, said in an interview yesterday.

“I think the stance will be softened and that pediatricians and obstetricians will explain to parents a more balanced view of the advantages and disadvantages” of circumcision, Cooper said. Doctors are “looking at it with less disdain than they did several years ago.”
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