Nurse navigators guide patients through their cancer journeys

 

The softball-sized tumor pinched his ureter like a vise, blocking his kidney from its normal business of filtering waste and generally keeping the body going. There were few signs something was wrong with 40-year-old Tom James — stomach twinges and minor back pain, namely. But a routine physical, where blood work revealed elevated levels of a bodily byproduct called creatinine, led doctors to the desmoid tumor lurking in his abdomen.

After his mother met UF Shands Cancer Center director Paul Okunieff, M.D., at a speaking engagement, Tom and his wife, Heather, decided to turn to the UF Shands Cancer Center for his care. The problem? UF&Shands was out of network under the Fort Myers couple’s insurance plan, and his case was complex, requiring a bevy of different specialists. Not to mention, the couple was still reeling from the news that Tom had a tumor and the recent losses of two family members.

“From a physician standpoint, it is an incredibly valuable asset to the team; the nurse navigator is the glue that holds the team together.”
— Thomas J. George, M.D., director of the Gastrointestinal Oncology Program and an assistant professor of medicine in the UF College of Medicine.

Enter Amanda Sandlin, R.N., a nurse navigator for the Gastrointestinal Oncology Program. Sandlin called the Jameses, set up their first appointments and gave them an idea of what to expect. She also began working to help the couple deal with their insurance issues.

Heather and Tom James

“Our heads were spinning with the news, and we were not sure what to expect and what the journey would entail,” Heather said. “She walked us through everything. She was by our side through it all.”

For cancer patients, complex medical situations like what the Jameses faced are common. Cancer is a scary diagnosis, by itself. Add in the need for appointments with surgeons, medical oncologists, radiation oncologists, social workers, genetics counselors and other specialists plus a slew of tests and the mind boggles. To help ensure patients get what they need efficiently and to speed up the time between diagnosis and treatment, nurse navigators have become a key part of many UF Shands Cancer Center multidisciplinary teams.

“From a physician standpoint, it is an incredibly valuable asset to the team; the nurse navigator is the glue that holds the team together,” said Thomas J. George, M.D., director of the Gastrointestinal Oncology Program and an assistant professor of medicine in the UF College of Medicine. “At a large institution with lots of moving parts, there is always the potential for patients to fall through the cracks. It is hard for them to know what the next steps are. Escorting patients through the system and getting care organized expedites delivery of care and helps us provide the care we want all patients to have.”

A study published in the Journal of Urban Health in 2008 showed that patient navigation helped speed up the time between an abnormal mammogram and cancer diagnosis in women and also reduced patient anxiety. The National Cancer Institute also has listed patient navigation as a priority and established a research initiative to study the effectiveness of such programs.

“If your patients are happy, they are more apt to follow the plan of care and listen to what you have to say,” Sandlin said. “You have to treat the whole person and their families. Physicians save the patient’s life and nurses help them live.”

Currently, there are navigators in several UF Shands Cancer Center multidisciplinary programs, including those for breast, lung, gastrointestinal and urological cancers. Administrators are currently working to assess whether more navigators can be added to other multidisciplinary programs, too.

“I try to meet people at their very first encounter,” said Andrea McFarling Penley, R.N., a nurse navigator for the Lung Cancer Center. “The patients deserve a person, someone they can reach out to all the time.”

And it’s not just about getting patients in the door, but about following up, too. As with other UF&Shands cancer programs, after patients are seen in the Lung Cancer Center’s multidisciplinary clinic, doctors discuss cases the next day at a tumor board conference. Afterward, Penley calls all the patients who were discussed to tell them what was said and whether any changes were made to their plan of care. She also makes sure they had a good experience at the multidisciplinary clinic, which brings all the specialists to the patients one day a week.

Sandlin and the other navigators follow their patients even after their treatment is over, too.

“She has become a friend through this,” says Heather, whose husband had surgery to remove his tumor in December and is now doing well. “She supports us. There were times when I had some breakdown moments, and she was right there. She made a very scary and very critical situation more seamless and less stressful.

“I cannot imagine what it would have been without her.” — April Frawley Birdwell

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Summer 2012

From the director’s desk

They’re our patients’ bridge over troubled water … when you’re feeling weary and there’s darkness all around, they will comfort you.

Audrey’s journey across the world

Six-year-old from Australia comes to UF Proton Therapy Center for brain tumor treatment. “More happiness came out of the center than pain,” Anderson said.

Helping them live

Cancer is a scary diagnosis, by itself. Add in the need for appointments with surgeons, medical oncologists, genetics counselors and other specialists plus a slew of tests and the mind boggles. Nurse navigators guide patients through their cancer journeys.

Targeting tumors

Cancer that has spread from the site of an original tumor to other places in the body is often viewed as a death sentence. But if there are just a few of those secondary tumors, called metastases, some patients have a good chance of survival.

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