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New ways to care for people living lager with cancer: as survival rates climb for chronic forms of the disease, hospitals strive to make the experience easier on patients.


For Terry Chamberlain, cancer treatment never ends. The 57-year-old nurse was diagnosed with breast cancer 18 months ago, and has made many trips to the Lacks Cancer Center, part of Saint Mary's Health Care, Grand Rapids, Mich. "I have lab work every month, chemotherapy every other month and daily hormonal therapy," she says. "It's part of my life."

New treatments are helping many people with metastatic or recurring cancer to live longer. Five-year survival rates are increasing for three of the most common types of the disease: breast, prostate and colorectal (see figure, page 37).

For these survivors, cancer has become a chronic condition. Hospitals and doctors are responding with more coordinated care and new philosophies of treatment.

New Treatments and Hew Attitudes

Over the last 10 years, researchers have been able to explore ever more closely the molecular structure of various cancers. That has led to a number of new medications that give doctors second and third lines of treatment to combat spreading and recurring cancers.

"Through advances in molecular biology and understanding the genome, we are learning what switches are making cancer cells grow, such as the production of abnormal proteins or the lack of proteins," explains Michael Fisch M.D., interim chairman of the department of oncology at the University of Texas M.D. Anderson Cancer Center in Houston. "And we are learning how to turn the switches on and off."

A decade ago, the Food and Drug Administration approved the antibody Herceptin, allowing doctors to target cancer cells that overproduce the Her2 proteins. Patients with metastatic breast cancer generally have a survival rate of two years, notes Francisco Esteva, M.D., an associate professor in the department of breast medical oncology at M.D. Anderson. "I've had some patients on Herceptin for seven or eight years," he says. "It's a new paradigm. The treatments aren't so damaging and they can better manage the side effects." Herceptin and hormonal therapies--both targeted at specific cancer cells--don't cause the side effects of chemotherapy, such as numbness from nerve damage and hair loss.

Managing cancer as a chronic disease requires a different philosophy. For early-stage cancer, oncologists usually use several chemotherapies immediately in an effort to eradicate the disease. But for metastatic cancer, they are more likely to use chemotherapy as single agents.

Patients are often willing to put up with acute toxicity and its side effects if there is the possibility to be cured. "But in the case of metastatic cancer, you want to delay the disease and minimize the symptoms," says Clifford Hudis, M.D., chair of the breast cancer medicine service at New York Memorial Sloan-Kettering Cancer Center. "You don't want the treatment to be worse than the disease."

Radiation therapy also has become so precise that it hits only the cancerous cells. In addition, more chemotherapies have become available in the last 10 years, as well as more effective treatments for their side effects--all of which allow cancer patients to tolerate treatments longer and enjoy a better quality of life.

Fisch sometimes uses what he calls the "hitchhiker model" for chronic cancer patients, using various types of treatments in succession. "We want to be sure the treatment is safe, comfortable and heading in the right direction," he says. The hitchhiker method can include a pause in treatment if the cancer is not aggressive. As doctors buy patients' time, more effective medicines could be discovered, perhaps even a cure.

The sheer number of treatments is creating its own questions. "We don't have research that tells us exactly how to sequence them, although we have rules of thumb," Fisch says. "How do you use the bigger toolbox?"

For instance in 1998, colorectal cancer had one line of treatment chemotherapy, with a median survival time of nine to 10 months. Now, new chemotherapies, targeted antibody therapies and advances in surgical techniques have increased the median survival time to 20 to 25 months. A decade ago, Fisch says the question was, "Is this treatment worth doing--would it add quality time, considering the side effects?" Now it's: "Which of the several treatments available will best meet the patient's goals?"

Making Things Easier for the Patient

While M.D. Anderson, Memorial Sloan-Kettering, Dana-Farber and a handful of other organizations have long been recognized for outstanding cancer care, a number of other hospitals across the country have recently opened or are building comprehensive cancer centers. The Lacks Cancer Center opened in 2005. Froedtert & The Medical College of Wisconsin, Milwaukee, opened a 446,000-square-foot facility last year to house all 13 of its cancer service lines.

"In our customer surveys, we found that people were overwhelmed by distances," says Bruce Campbell, M.D., an oncology head and neck surgeon who served on a design committee for the facility. "Before patients were going to one [hospital] floor for a procedure and somewhere else for an appointment. Now they have a single location for everything."

Froedtert cancer patients also have a "journey coordinator" who has access to all the physicians' schedules and makes sure that procedures are in the right order and that physicians have relevant patient records for an appointment "It shortens the amount of time between first contact and an appointment, an important issue for patients," Campbell says. "Doctors like knowing their lime is being used efficiently."

Ed Wagner, M.D., a researcher at the Center for Health Studies, Group Health Cooperative in Seattle, says hospitals with comprehensive cancer care need to form partnerships with primary care physicians, who often are the ones to first diagnose the disease. His center is studying the effectiveness of using oncology nurses outside the hospital--probably in doctors' offices--who can provide information and emotional support, so that patients don't feel overwhelmed and lost in the system.


Wagner, who has worked extensively on chronic care delivery models, says that when patients are diagnosed with cancer and begin to be treated, their care is often disjointed. "You've heard of a medical home?" he says. "These patients are homeless." Patients may be diagnosed at one location, have their cancer staged in another, and undergo surgery and further treatments at two other locations--all with different clinicians. "Our ability to coordinate between institutions and sometimes within institutions is not very good," Wagner says. "[Patients] don't know where to turn."

That was the situation in which Terry Chamberlain found herself. "First you have a lump and you are sent somewhere for X-rays and a sonograph, and somewhere else to have surgery," she says. "Plus, I was getting second opinions. I was running all over town." After two months of care and one operation, she left a large provider network, opting for Lacks. "I can now get second opinions right here," she says. "All the physicians working on your case sit down together twice a week, and later, you're presented with options and information."

Doctors need to learn what matters to patients, but it's difficult, says Thomas Gribbin, M.D., Lack's medical director. "[Patients] are afraid we are going to give up on them, so anything that can be seen as a lack of enthusiasm or a sign of weakness, they don't want to show us."

The Lacks Cancer Center employs five cancer research specialists who meet with patients at every step of their treatment, helping them sort through the information and make critical decisions. They also strive to learn patients' true preferences and meet with doctors to alert them to patient issues. "We assume patients want to live as long as possible as long as we don't make them too sick," Gribbin says. "But most patients have a much more complicated agenda."

For example, if a patient wants to feel relatively well in four months for his daughter's wedding, he may not want to start a yearlong chemotherapy regimen that will only add four months to his life.

The cancer resource specialist performs an initial interview to find out significant issues and how they can best be addressed. "These are uncharted waters for people," says Alina Chourrot, cancer resource specialist. "They don't get an instruction booklet On our first contact, we let them know this is a lifetime relationship."

Chourrot, a social worker, does everything from setting up meetings with clinicians if patients and families are confused about treatment options to helping patients with drug company assistance to pay for medicines.

"The cancer resource specialists just make it easier, they are your cheerleaders and they care about you," says Chamberlain, who is upbeat about her medical prospects. She's used a number of Lacks' support services, such as acupuncture for nausea, exercise classes to build stamina and meditation classes to keep stress at bay.

"Time is a healer and I've got more time," she says. "It's comforting to me that I'm in a comprehensive system and have a team of specialists guiding my care."

Full Steam Ahead Finally for Patient Navigators?

Patient navigators--workers who help patients find resources and information to improve their access to care--have gotten a boost thanks to a trio of initiatives: a program that trains navigators, a federal grant to fund navigator positions at six sites nationwide, and a program that sends trained navigators to hospitals and cancer treatment centers.

Although navigators have been around for nearly two decades, they are not widely employed by hospitals. Harold Freeman, M.D., the cancer surgeon who first developed the position, estimates only 600 sites nationwide use navigators.

The concept grew out of his experience as chief of surgery at the Ralph Lauren Center for Cancer Care and Prevention in Harlem in New York City. "The idea was to remove barriers," Freeman says. The center has four full-time navigators who help patients with financial and other barriers to getting care. If a patient is uninsured, navigators help find state health care programs or help fill out paperwork to get aid from pharmaceutical companies. They also help patients with everything from transportation to better understanding their conditions and treatments.

The Harold P. Freeman Navigation Institute, also in Harlem, launched a training and certification program for navigators last January. As of October, the three-day program graduated 95 individuals from 22 states, a U.S. territory and a foreign country.


Further south, in Hollywood, Fla., Memorial Healthcare System in October was named one of six sites receiving a portion of $2.4 million in grants from the Health Resources and Services Administration to fund navigator programs. With nearly $300,000, Memorial hopes to take the model beyond cancer patients, helping others with chronic diseases such as diabetes and congestive heart failure. Amy Pont, director of health and clinical services at Memorial, a district hospital system, expects to serve some 2,200 patients annually.

Navigators will be stationed at the system's flagship hospital to help with inpatient stays, at the largest outpatient clinic to help patients who are newly diagnosed, and at Hispanic Unity--Memorial's grant partner--a community organization that provides services to recent immigrants. That navigator will work on outreach to encourage residents to come in for screening exams and find a medical home at Memorial facilities, Pont says. A registered nurse will lead the navigators and assist with disease management.

"We've never had a navigator at a clinic, and we hope to impact populations that have health disparities, especially Hispanics, African-Americans and Caribbeans," Pont says. "The navigator is someone to help them pull it all together."

Exempla Lutheran Medical Center in Wheat Ridge, Colo., in June tapped into an American Cancer Society program that's provided navigators to cancer centers since 2005. ACS wholly or in part funds 130 navigators nationwide. The program got a $10 million boost last year from AstraZeneca, the London-based pharmaceutical company.

In a facility that has 1,200 to 1,300 cancer diagnoses annually, the navigator was a welcome addition, says Denise Black-Anderson, director of the Exempla Lutheran's cancer service line. "It really helps to have someone right here with us, to connect patients to the hospital and American Cancer Society resources," she says.--TERESE HUDSON THRALL
M.D. Anderson Cancer
Center Study

As more cancer treatments have been
approved, five-year survival rates have
improved for recurrent breast cancer
patients in a study of more than 800 patients
at M.D. Anderson Cancer Center, Houston.

Five-year overall survival rates
from time of recurrence

1974-1978 10%
1980-1984 14%
1985-1989 22%
1990-1994 29%
1995-2000 44%

Source: "Is Breast Cancer Survival improving? Trends in Survival
for Patients with Recurrent Breast Cancer Diagnosed from
1974 through 2000," Oncology, January 2004

Note: Table made from bar graph.
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Title Annotation:SERVICE LINES
Author:Thrall, Terese Hudson
Publication:H&HN Hospitals & Health Networks
Date:Jan 1, 2009
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