Navigating breast cancer care

"Am I going to die?" "Will I lose my hair?" "Will I ever be really well again?"

These are among the questions that people newly diagnosed with breast cancer typically ask. To answer them and to smooth the intense emotional experience and complex medical path they face, area health systems all now employ patient navigators.

The not-quite-defined specialty, a mix of social work, medical advice, cheerleader and nurse, was initiated in 1990 by a Harlem doctor, Harold Freeman, who saw indigent patients getting lost n the system. The navigator service is free. "Otherwise people wouldn't use us," says Wendi Johnson, RN, OCN ( oncology certified nurse), CBCN (certified breast care nurse), who is marking her third anniversary as a patient navigator for the Sentara Williamsburg Regional Medical Center.

Radiologist Melinda "Lindy" Dunn describes her as "the star of all navigators" for her strong oncology nursing background, her drive for ongoing education — she just finished a lymphedema course in order to institute a patient lymphedema education program — and an "innate gift in how she reacts with patients."

Though their qualifications vary dramatically, navigators essentially are patient advocates, doing whatever's in a patient's interest to both speed and ease the process of receiving care from many different sources. They're a consistent caring presence and readily accessible resource through an often lengthy, complicated recovery process.

"She was there for my every question, every tear," says Lynn Kallus, 59, who was diagnosed with an aggressive form of breast cancer two years ago and suffered a series of complications before recovery. "The doctor is so busy. Wendi came up with all sorts of information for me and made sure that the records got to the doctors on time."

Because of her medical training, Johnson can also order certain tests, such as the oncotypeDX which determines the potential efficacy of chemotherapy, and ensure that she has the results before a patient sees the doctor so as to avoid a wasted appointment. She helps get appointments and results quicker and also ensures that patients see all the specialists that they should. "Some patients are good at talking their way out of things," she says. "It's a great opportunity to educate."

For Kallus, a Lancaster County resident whose oncologist is in Gloucester, surgeon in Richmond, and films at the Women's Imaging Center in Williamsburg, having Johnson to coordinate everything was a lifesaver. "She accommodated me in terms of location, got my appointments, sent my records. The skids were greased," says Kallus, whose husband, "Bing," calls Johnson "in the category of being a national treasure."

He explains that she could always be reached, and her calmness and knowledge were supremely comforting. "It's a little bit of magic, the peace of mind she gave me," Bing says. "She was so in tune with what was going on. She could put her finger on it when things weren't going right."

Navigators, in general, provide that sense of well-being, says Leslie Smith, RN, who holds a master's degree in nursing administration and coordinates Bon Secours Breast Program. Two years into her job as a navigator, she says the hardest part is seeing the fear and anxiety that women go through. "They're going to have a year or so of life that's not normal, but afterwards they're reborn with a new spirit, a new life … Our job is to decrease anxiety and share information. It's highly treatable," she says, citing the current 85 percent breast cancer survival rate. Like Johnson, she makes herself available to attend doctors' appointments, answer questions by e-mail, by phone or in person, and to work with families. Smith organizes an annual retreat for survivors and runs support groups that keep her actively involved with 100 patients at a time.

At Riverside, patient navigator Yvonne Pike comes from a counseling, rather than nursing, background but does essentially the same work. She was integral to the start of the comprehensive breast health program organized by medical oncologist Kimberly Schlesinger and surgical oncologist Mike Peyser, in 2005. Like the others, she meets patients at the diagnostic stage. Connie Batchelor, 60, a Gloucester patient recalls that meeting. When the radiologist delivered the diagnosis, "I was on the floor. The whole world just stopped for us," she says of the reaction she and her husband, Lew, had to the unexpected news. "Yvonne came in and sat with us. We call her 'our angel.' She picked us up and explained everything, that it wasn't a death sentence. I bet she spent 1 1/2 hours with us. She's probably the best tool they have."

Her initial consultation provides decompression time for the patient and family, says Pike. "I don't think anyone remembers anything from that day to be honest." Johnson concurs. "There's a lot that they might not remember. They might hesitate to call the doctor back because they don't want to bother them, but they can call me back many times and ask the same questions over and over." Overall, though, Johnson's impressed by the level of knowledge patients display, even under duress, and notes that there's a real thirst for information in the community. "Information empowers our patients," says surgeon Terryl Times. "Wendi makes my job easier because the patients come in understanding the disease process. They know what's going on."

Batchelor was so impressed by her care that when her mother in Florida was subsequently diagnosed, she had her come to Riverside and asked Pike to guide her through treatment. Likewise, Kallus pointed her best friend to Sentara and Johnson's care.

The navigators, who meet in an informal group statewide, also work with each other across health systems to accommodate patients, and even other family members and friends who need help and advice. "It's a community service available to anyone diagnosed. We don't turn people away," says Pike.

All emphasize the benefits of a team approach to breast cancer care and treasure the opportunity to work with patients throughout the continuum of care, from explaining the initial diagnosis and following up with individual advice to conducting support groups and retreats when they can reconnect with those they've helped. "It's like family," says Johnson who has been surprised to find her coordination of the annual retreat one of the most rewarding aspects of her job.

What is a patient navigator?

Navigators essentially are advocates, acting to speed and ease the process of receiving care from many different sources. They help patients coordinate appointments, get test results faster and gain access to specialists, all the while acting as a caring presence and accessible resource through the recovery process. Local navigators say they also explain diagnoses, offer advice and conduct support groups and retreats. Qualifications vary widely.

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