Susan Colletti provided far more than moral support. Susan also made endless phone calls in search of her husband's latest test results, which often failed to reach his doctor in time for his next appointment. Susan — who quit her job as an oncology nurse at the National Institutes of Health to care for Andrew — started bringing copies of her husband's medical records to appointments, because she never knew whether doctors would have everything they needed.

"I wanted to concentrate on Andrew's care, not chasing paper trails and filling people in on what was going on because his chart wasn't there," says Susan, 41.

The Collettis say coordinating cancer therapy shouldn't require an advanced degree in nursing. Yet half of cancer patients and their households have problems coordinating care, according to a new USA TODAY/Kaiser Family Foundation/Harvard School of Public Health poll.

Many cancer patients were confused about prescriptions. One in five patients were sent for a duplicate test and one in four respondents received conflicting information, according to the telephone survey, which included 930 adults who had survived cancer in the past five years or who share a household with someone diagnosed with cancer. Gigi McMillan, 45, of Manhattan Beach, Calif., says a technician almost performed the wrong test on her son. The technician had been told to perform a CT scan of her son's stomach, even though her son had a brain tumor. Fortunately, McMillan says, she had the original prescription with her.

"It was my first lesson in being an advocate for my child," McMillan says. "Nobody else takes up that burden of casework."

Experts across the country say choreographing care is one of the most important challenges in cancer. Problems like those uncovered by the survey could even hurt a patient's chance of recovery, says Lawrence Shulman, chief medical officer at Boston's Dana-Farber Cancer Institute.

There are many reasons it's difficult to organize cancer care.

A generation ago, cancer patients spent weeks or months in hospitals. Today, they spend more time at home, often visiting hospitals or doctors' offices for only a few hours at a time, says Diane Blum, executive director at CancerCare, which provides financial help and social services. That leaves patients and their families to manage much of their care on their own.

Cancer care also has grown more complex, Shulman says.

While patients may need a wide array of doctors — radiologists, pathologists, radiation oncologists, cancer surgeons, reconstructive surgeons, medical oncologists — each may handle only one aspect of care. Patients often travel to different offices for each specialist or procedure. Sections of their records may be stored at each location.

Yet none of these doctors may step forward to serve as quarterback, says Gabriel Hortobagyi, president of the American Society of Clinical Oncology, or ASCO. "Patients say, 'I have five or six doctors, but no one is in charge of the show,' " says Hortobagyi, chair of breast medical oncology at Houston's M.D. Anderson Cancer Center. "This is the perfect scenario for disrupted and piecemeal care."

Patients fortunate enough to attend comprehensive cancer centers may fare better, Hortobagyi says, because these hospitals typically offer a variety of care under one roof. These patients also may be able to meet with all of their doctors at once. Only about 10% of cancer patients are seen at this kind of large center, he says.

The Collettis, who live in Springfield, Va., chose to go to Seattle's Fred Hutchinson Cancer Research Center for his bone-marrow transplant. The hospital has expertise in the procedure that Andrew, now 45, needed. As a bonus, its staff coordinated all of Andrew's care, which allowed Susan to spend less time on the phone and more at her husband's side.

Searching for solutions

Health professionals need to communicate more easily, says former ASCO president Sandra Horning, a professor at Stanford School of Medicine.

Too often, however, doctors are stuck in "electronic gridlock," Horning says. Doctors in one building may be unable to access records at another office, which may be stored on incompatible computer systems or paper charts.

While coordinating cancer care may never be easy, advocates say that a few key changes could help.

All patients should have easily accessible electronic medical records, says Ellen Stovall, president and chief executive officer at the National Coalition for Cancer Survivorship. Hortobagyi says ASCO, the country's largest organization of cancer doctors, hopes to lead the way. The organization next year will meet with companies to talk about developing products that all cancer caregivers could access.

Some health systems are experimenting with other ways to keep patients informed.

The Virginia Commonwealth University Massey Cancer Center hopes to start a pilot program that would store medical records on USB flash drives — small, portable devices that hold large amounts of information. Patients could plug the drives into computers at home or at their doctor's office, says Thomas Smith, co-leader of the center's cancer prevention and control research program.

The Massey Cancer Center already offers a program to coordinate the care of rural patients, who in the past often showed up in Richmond without key results. Doctors and nurses with specialized training began visiting small-town hospitals about twice a week, allowing patients to be treated closer to home. Patients get better care, with fewer mix-ups or misplaced tests results, Smith says. The program saves enough money to pay for itself.

Keeping patients informed

Cancer patients often suffer from a lack of information, Stovall says. Many long-term survivors — who commonly suffer side effects years after treatment — have trouble reconstructing exactly what was done to them. Over time, doctors may relocate or even pass away.

That's why Stovall says every cancer patient deserves three key documents:

•A care plan, written shortly after diagnosis, outlining how doctors plan to treat their cancer.

•A treatment summary given to the patient at the end of their therapy, outlining all their surgeries, radiation and drugs, including specific dosages.

•A plan for ongoing care, describing how survivors should monitor their health, including guidance on screening tests, follow-up visits and potential long-term side effects.

ASCO is working on a series of care models. The group hopes to make them available to doctors in time for ASCO's annual meeting next spring, Hortobagyi says.

While the society's first care plan will focus on colorectal cancer, the group eventually hopes to produce guides for breast, lung, prostate and other tumors.

Even with ASCO's guidance, however, many doctors may feel hard-pressed to develop plans for each of their cancer patients, Hortobagyi says. He notes that insurance plans don't typically pay doctors to coordinate care.

Patient advocates such as Stovall would like to change that.

She supports the Comprehensive Cancer Care Improvement Act, sponsored by Rep. Lois Capps, D-Calif., and Rep. Tom Davis, R-Va., which would allow Medicare to pay doctors for developing care plans, treatment summaries and follow-up plans. Although Congress did not act on the bill this year, Capps plans to reintroduce the bill in 2007, says her spokeswoman, Emily Kryder.

Coordinating care can help patients and families feel less overwhelmed, Stovall says.

"A lot of anxiety comes from not knowing what comes next," Stovall says. "People armed with good information tend to make better decisions."