Cancer Navigators: Guiding You to Good Care

Staying busy is the M.O. for Patricia Vitelli, 57, chief financial officer at a Yonkers, New York-based nonprofit. In October, Vitelli learned she had breast cancer. Accustomed to being healthy and in control, in some ways the sheer disruption of cancer care was nearly as upsetting for her as the diagnosis itself.

Vitelli's lumpectomy surgery was the beginning. "You go from finding out you have a cancerous tumor that has to be removed, and you're thrown into the million things you have to do to get treated," she says. "When should I see the oncologist? When should I see the radiologist?"

Her surgeon at White Plains Hospital introduced her to Danielle Gagner, the clinical navigator for the hospital's breast program. At that point, the practicality of the navigation service -- the help with coordinating appointments and treatments -- appealed to Vitelli. Now, three months later, in the midst of chemotherapy, she realizes that's just a facet of what cancer navigators offer.

Diagnostic Journey

"When somebody gets diagnosed with cancer, it's overwhelming and people need support," Gagner says. "Especially in the beginning, because it's uncharted ground. They need somebody to navigate them through their diagnostic journey, which includes the initial diagnosis, the treatment and then on to survivorship."

Gagner's office is in the women's imaging department at White Plains. This is where patients are told they need breast biopsies because of abnormal findings on a mammogram or ultrasound. It's the point when Gagner first meets patients, and she's there when they get their results.

"That process is difficult for many women, especially if they have a family history," Gagner says. "Or if they're just nervous or scared." Fortunately, "85 or 90 percent of people don't need me after biopsy," she says. "But for the small percentage of women who do get told they have breast cancer, I am here from day one."

Emotional Support

As treatment concerns arose, Vitelli turned to Gagner. "She was able to answer my questions in a way that the doctors ... you know, doctors are busy," she says. Vitelli would email at night or whenever was most convenient, and receive a response first thing in the morning.

Vitelli had hoped lumpectomy surgery would be enough, so learning she needed chemotherapy "was another pretty traumatic experience," she recalls. "Danielle was the first person I called after I found out. I was pretty upset because of the repercussions of it, and she understood. And she was listening and basically telling me exactly what I should expect."

As patients make treatment choices, Gagner notes that "the navigator is there, not to foster or help them make decisions, but just to help reinforce the options and answer questions patients may have." Navigators don't give medical advice, she emphasizes. "The final decision is with the patient and the physician."

Insider Help

Gagner, with a background as a physician assistant, was originally based in the hospital's emergency room. She was invited to be the navigator for the breast program, went through additional training and started in 2011. Gagner brings an added dimension to the job: She is a breast cancer survivor. Diagnosed at 36, she underwent treatment at White Plains. "I can both sympathize and empathize with my patients," she says.

Her insider status in the health care system works to her patients' advantage. If there's a significant wait for an appointment, Gagner may step in. "When I call, I can say, 'Hey, this lady really needs to get seen -- can we get her in tomorrow?' And that actually works," she notes. "I help expedite them through the process. I serve as a point of contact for the patient and their family with the multidisciplinary team."

Vulnerable Patients

Breast cancer centers seeking accreditation from the National Accreditation Program for Breast Centers face a new requirement: Patients must have access to a patient navigator.

Navigation can help for other types of cancer as well. Ludmila Svoboda is part of the Cancer Care Equity Program at Dana-Farber Cancer Institute in Boston. Navigation is offered to patients in specific programs -- such as for breast, cervical and colorectal cancer at Dana-Farber, Brigham and Women's Hospital and affiliated community health centers.

Svoboda, a registered nurse, took on the navigator role in 2011. Patients often come to her attention through community outreach clinics. While some patients have supportive families that include "somebody that's very knowledgeable and confident and assertive and can grasp exactly what is needed," she says, others are alone, with fewer resources.

"Oftentimes I get cabs to pick up patients and bring them to Dana-Farber," Svoboda says. Once there, she adds, "they're really well taken care of. They have the nurses; they have disease-specific navigators, social work and financial-needs folks."

Vulnerable patients are Svoboda's major focus. These patients "may have a language barrier, or possibly come from a different social background or may not have the highest level of health literacy," she says. So they need a navigator to "help them try to find their way." Patients often work two or more jobs, she says. "They don't have paid time off, so to make them understand which appointment in the most important, and sort of triage that, and to get them from point A to point B, is really a challenge."

For patients with a non-English first language, rather than rely on family or staff members to translate, the navigators hire professional medical interpreters. Spanish is the predominant language encountered in the clinic, she says, followed by Somali and Haitian Creole.

Cancer care involves so many steps -- from screening to diagnostic tests to biopsies to consultations, not to mention treatment and follow-up care to monitor side effects throughout survivorship. "Any of those bridges to the next level of care is a possibility that somebody just falls off if they have any vulnerability," Svoboda says. Having that connection to a navigator can keep people on track. And "patients love it," she says. For those daunted by the thought of setting foot in a major cancer center for the first time, "it's just such a sigh of relief to see a familiar face."

Next Phases

Vitelli is one-quarter of the way through chemotherapy, with her last treatment due in March. "The chemo's like the shocker," she says, in terms of feeling sick and fatigued. Cancer "has been a huge interruption in whatever my life was, and that's been a big adjustment, accepting that." She's feeling better now, able to work full-time some days, although she she's not really back to exercising. And now she knows what to expect for the next round of chemo.

Of the radiation phase to follow, she says, "that seems less traumatic, other than the fact you have to go in every day." But radiation treatments at the cancer center take just 15 minutes, she adds, "so you can run in, do your thing and go." Through each phase, she'll keep in contact with Gagner. Navigation is "a wonderful service," and patients entering treatment should ask about it, Vitelli says: "I'm so grateful it was available to me."

Lisa Esposito is a Patient Advice reporter at U.S. News. You can follow her on Twitter, connect with her on LinkedIn or email her at lesposito@usnews.com.