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.
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.
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, 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.
LOCATION, LOCATION, LOCATION
Where patients are treated can make all the difference. Some doctors and hospitals may not see enough cases to stay sharp in an area in which studies have shown that experience counts. This may leave people in rural areas or smaller cities, and poor people, at a distinct disadvantage.
Communication also plays a crucial part: Some patients may not understand that surgery alone is not enough, and that they also need chemotherapy or radiation or both.
When patients consult John H. Glick of the Abramson Cancer Center at the University of Pennsylvania for second opinions or to transfer their care to his center, Glick estimated that he and his colleagues concur completely with the original doctor in about 30 percent of cases.
But in another 30 percent to 40 percent of cases, they recommend major changes in the treatment plan, like a totally different chemotherapy regimen or the addition of radiation. Sometimes his team makes a completely different diagnosis.
In about another 30 percent of cases, his team recommends minor changes in chemotherapy, or additional tests.
"We interpret things differently, maybe because we have more experience," Glick said. "We see hundreds of patients with Hodgkin's disease. A community oncologist may see only a couple."
DETECTION AND THE RIGHT TREATMENT
The sad paradox of colon cancer is that it is often preventable - but not prevented. It is one of only two cancers (the other is cervical) for which screening tests can find cancers or precancerous growths early enough to cure the disease or even prevent it with surgery alone.
Only 39 percent of colon cancers are detected early. The disease is still the second-leading cause of cancer death in the US (lung cancer is first), with about 154,000 new cases and 52,000 deaths expected this year.
Doctors say the main reason the death toll remains so high is that not enough people are screened. Screening is unpleasant: It requires stool tests or scopes inserted into the rectum. But many people refuse the tests or put them off. Some cannot afford colonoscopy, which costs US$2,000 to US$4,000; not all insurers cover it, even for people over 50.
Whatever the reason, only about half of those who should be tested actually are. Deaths could be cut in half, experts say - meaning 26,000 lives a year could be saved - if all those who need screening were to receive it.
It is possible that screening tests have saved President Bush from developing cancer. He has had colon polyps removed on several occasions, including most recently, when five were snipped out. Most polyps do not become malignant, but they are removed when found because nearly every colon cancer starts out as a polyp.
Studies suggest that significant numbers of patients miss out on cancer treatments that could prevent recurrence, prolong survival or save their lives.
Among women with breast cancer, 15 percent to 25 percent who should have radiation do not receive it, and 20 percent to 30 percent do not take the anti-estrogen drugs that are a mainstay for most patients, Edge said.
Women miss out for various reasons.
Race and ethnicity come into play in ways that are not understood. A study published last year in the Journal of Clinical Oncology by Bickell and other researchers assessed how likely a woman who had surgery for breast cancer was to miss out on other needed treatments - drugs or radiation - at several high-quality teaching hospitals.
A second study published last month by the same group suggested that breakdowns in communication played a part: A third who did not receive the recommended treatment had refused it, and another third missed out because of "system failures," meaning it was recommended but, for some reason, never happened, and in another third, doctors ruled out the treatment for medical reasons.
With pancreatic cancer, one of the deadliest types, people at early stages have a chance of surviving only if they have surgery. But a study released in June by the American College of Surgeons found that 38 percent of patients who were eligible for surgery were not even offered it.
With ovarian cancer, a deadly disease for which inadequate surgery has been proved to shorten a woman's life, many do not receive the correct operation, which may require the removal of tumors from the intestine, diaphragm, liver, spleen and bladder.
"A third of the women in the United States are not getting the right surgery, not even close," said Barbara Goff, a gynecologic oncologist at the University of Washington in Seattle.
For complex operations, numerous studies have shown higher success rates if the hospital and doctor have a lot of experience. But Goff and other researchers have found that 25 percent of ovarian cancer patients are operated on by surgeons who see only one case a year, and 33 percent in hospitals that treat fewer than 10 cases a year. Too many women are operated on by gynecologists or general surgeons, Goff said, adding that ovarian cancer operations should be performed by gynecologic oncologists, who train specifically in cancer surgery.
In addition, although a major study in 2006 showed that pumping chemotherapy directly into the abdomen, instead of dripping it into a vein, added an average of 16 months to women's lives and the National Cancer Institute endorsed the technique, some oncologists still do not offer it.
Uneven quality persists even in colon cancer, one of the most common types. Jane Weeks, a professor of medicine at Harvard, said half a dozen studies had found that in stage 3, when tumor cells have spread to lymph nodes, only about 65 percent of patients are given chemotherapy - even though it has been proved beneficial and is recommended for about 80 percent of patients.
Numerous studies have suggested that men with prostate cancer face the opposite problem polyp too much treatment, which wastes resources and money and needlessly subjects men to the pain and risks of surgery or radiation.
Prostate cancer often grows so slowly that men can be treated with "watchful waiting," which means monitoring the cancer and treating it only if it starts to grow rapidly or turns more aggressive.
The surgeon's expertise is crucial in prostate cancer. A study published this month in The Journal of the National Cancer Institute found that the cancer was less likely to come back in patients whose doctors had performed 250 or more operations. Their recurrence rate was 10.7 percent, compared with 17.9 percent in men whose doctors had performed the operation only 10 times.
FAR FROM TYPICAL
"They got them all," Pasqualetto's husband, Chris Hartinger, said shortly after her operation ended on June 21. "It turned out to be five tumors."
A few days after surgery, Pasqualetto was walking laps around the hospital corridors.
"I can't believe it," she said. "This is pretty exciting."
But weeks later, at home again, she found herself back in the trenches, unsure of what the next step in her care would be. "It's like I'm flapping in the wind," she said.
Pasqualetto is exceptional not only for her determination and confidence in dealing with problems that would intimidate many other people, but also for her financial wherewithal. So far her treatment has cost more than US$400,000, almost all of it covered by health insurance from Starbucks, where her husband works in disaster-response planning.
When she joined a cancer support group, she recalled, "It was amazing to me the different experiences people were having based on what they could afford or who their provider was. I was able to say, 'If the provider won't pay, my family will. I don't care, I'm going for a second opinion.'"
In the support group, Pasqualetto said it saddened her to hear other patients with advanced disease take the word of a single oncologist, because she believes that if she had done that, she would already be dead. She has come to think that survival may depend on money and access, and, she said, on "your own drive and motivation, your education and your ability to sort through the medical world and the insurance world terminology."
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