Julie Pope has a useful analogy to describe her role as a cancer nurse navigator in Winston-Salem.

“Imagine a drawstring bag, and the bag is full of different providers, tests, treatments and office visits,” she tells patients. “Navigators are the drawstring; we collaborate with the team to pull everything together.”

Shelby Carpenter, who until recently was Pope’s colleague in colon and rectal cancer navigation, likens the job to caulk or cement. “We try to seal any cracks as much as humanly possible,” said Carpenter, who is now a breast cancer navigator. It’s not always easy for patients to reach a physician right away, but she said, “Navigators work hard to be available.”

They each have their own reasons for choosing this career. Pope’s reasons are deeply personal. Her father, Bud Hardison, was diagnosed with rectal cancer in 2002. He lived for just eight months after his diagnosis. “I navigate to honor my dad,” she said.

For many years, Pope and Carpenter facilitated a monthly GI Wellness Support Group for patients with gastrointestinal (GI) cancers. They meet in person at the Novant Health Cancer Institute in Winston-Salem. It’s open to anyone in the community impacted by GI cancer, and that includes patients, families and caregivers.

Everyone has a story

“It’s like a family,” Pope said of the support group. “They really rely on each other. A lot of them are in treatment; some are out of treatment, but continue to come. They bond through the diagnosis of cancer.”

The support group’s mission states that it’s “a safe place to tell your story.” Pope said, “Understanding a person’s story helps us navigate them. Being willing to actively listen helps us understand what someone needs, not what we think they need.”

Some newly diagnosed patients say they don’t want treatment. Their reasons vary; it could be due to cost concerns, lack of insurance or because the patient watched a family member die after undergoing treatment. (Another reason knowing someone’s story helps.)

Navigators occasionally encounter a patient whose parent died 20 or 30 years ago from cancer. They might remember a grueling treatment that was ultimately unsuccessful and be understandably reluctant to head down the same path. Navigators want those patients to know how much treatments have improved. A parent’s fate isn’t going to necessarily be their fate.

But, after hearing that, if the patient still chooses not to undergo treatment, “we’re never going to pressure them,” Carpenter said. “We will collaborate with their care team to assure they have the information they need to make an educated decision and offer resources to ensure they live their best life, regardless of their decision.”

If patients pursue treatment, they are free to stop treatment anytime. Navigators let them know the choice is theirs. One of Carpenter’s recent patients wasn’t happy with her quality of life while on an oral chemotherapy regimen.

“We reminded her: ‘You're not doing this for us; you’re doing this for you,’” Carpenter said. “And if you don't want to do this anymore, you can stop. You’re not letting anybody down. This is your journey.’ She was a different person after she stopped everything.”

The Swiss Army knives of cancer treatment

All the nurse navigators in Novant Health’s network, from Winston-Salem to Charlotte to Wilmington, are oncology nurses. They can, of course, answer questions about treatment, but they do much more. They can help, directly or with a referral, with financial concerns, scheduling, insurance matters. And they’re cheerleaders each step of the way.

Oncology navigators are like Swiss Army knives — versatile, reliable, able to handle multiple complex tasks. Whatever they can do to ease a patient’s burden, they will.

And as long as some of them have been in this role — Pope has been with Novant Health for 34 years — they still frequently encounter new issues, and they use creativity and teamwork to find solutions.

They’re also staunch allies for each patient they navigate. Camille Utter, who manages the 12 nurse navigators in Novant Health’s Coastal Region, said navigators a quality that the team has in common is confidence. It’s part of an ethos strongly encouraged for Novant Health team members: practice with a questioning attitude.

“Because they are so passionate about what they do, they’re not going to just fall in line because somebody said that’s what they’re supposed to do,” she explained. “They’re going to fight for what they believe is the best thing for their patient.”

Whatever it takes

One navigator is always guiding multiple patients through different stages of treatment. Some patients are newly diagnosed and understandably overwhelmed. Others have experienced a recurrence. Navigators often switch gears. They might hug one patient after she’s rung the bell to celebrate her last treatment and then immediately need to hug another patient who just found out her cancer has spread.

On any given day, a navigator might help one patient fill out insurance forms, help another adjust to an ostomy bag and help a third, someone new to the area, find a church or a ride.

Cancer isn’t the only challenge many patients have to face. It complicates whatever issues someone was already having — financial hardship, job insecurity, food insecurity, lack of transportation.

Navigators know — or can find out — the right resources to assist with all those challenges.

Carpenter was at work after hours recently to facilitate the GI support group when she noticed a patient still there. When she approached him to offer help, she learned he hadn’t eaten all day. She said, “I got him some food, and we waited together until he got picked up.”

She was speaking about this particular case, but she could’ve been speaking on behalf of all the Novant Health nurse navigators. They all have countless examples of times they’ve gone above and beyond for patients. Going above and beyond is their norm.

When a patient needs extra support, navigators are happy to provide it.