Janis Lanning doesn't have time for illness.
The mother of 3, grandmother of 9 and great-grandmother of 1 leads a busy life as a part-time elementary school teacher, freelance writer for Urban Ministries and partner to her husband of 35 years.
When ear pain and discomfort sent Janis to her physician in September 2015, little did she imagine the complex and frightening diagnosis she would eventually receive. But first, an 8-month investigation would unfold. Once her general practitioner and family ENT exhausted the routine potential causes of ear stuffiness, pressure and ringing – applying antibiotics, steroids, a tube and other medications to rule out ear infection or other disease – Janis was advised to consult an oncologist.
Navigating a complex journey
An MRI revealed a benign meningioma behind her ear. The tumor appeared to be resting against a transverse sinus in Janis' brain, spurring 2 surgeons to separately characterize the tumor as inoperable. Believing it was her only option, Janis prepared for and scheduled a 5-day course of radiation therapy.
But then her good friend Gail – whose husband had battled brain cancer for years – recommended a phone call that would dramatically alter Janis' choices, care process and – quite possibly – her long-term outcome.
"'I don't mean to interfere,'" Janis recalls Gail commenting, "'but I really think you need to call Emily Connor.'"
Connor is a nurse navigator with The University of Kansas Cancer Center. Her focus – and her passion – is to provide every patient with a path to efficient, individualized and compassionate neurosurgical and cancer care.
"I help patients get their foot in the door, whether they need a new appointment, a second opinion or just someone to talk to," says Connor. "I collect patients' records and images and present their cases to our physicians so we can get them what they need as fast as they need it."
Nurse navigators at the cancer center each focus on a specific disease. As such, they are highly knowledgeable about the appointments and treatments patients will require, as well as the way physicians communicate and collaborate. Nurse navigators bridge the gaps between traditional health system policies and patients' needed resources and timelines.
"Having been a patient myself, I'm very interested in better understanding the way our system works so that we can always improve it," Connor says. "It's frustrating when a nonclinical, front-desk person – who is simply working as he or she was trained – tells a patient they can't be seen for months because the computer and the calendar are telling them that. I want to give patients the reassurance that someone who knows their needs is advocating for them."
A change of direction
Janis' radiation therapy was scheduled for a mid-May Friday. She made her first call to Connor the prior Tuesday. After speaking with Janis, Connor collected her records and presented them to neurosurgeon Roukoz Chamoun, MD, who specializes in the type and location of the tumor Janis had. He suspected the tumor could be surgically removed.
"Emily called and said Dr. Chamoun wanted to meet with me on Thursday," Janis says. "My radiation was scheduled to begin that Friday. I was worried about all the doctors involved. It can take 6 months to get in to see a specialist, and here we were reconsidering our approach the week of. How would we get this done? Emily said, 'Don't worry. This is my job.'"
Connor organized an additional test and a cerebral angiogram. Thursday afternoon, Dr. Chamoun confirmed that the tumor had closed off the blood supply to the transverse sinus, rendering it operable after all. While Janis was concerned about inconveniencing the physicians who had planned to provide her radiation treatment, Dr. Chamoun personally obtained the agreement of radiation oncologist Fen Wang, MD, PhD, that surgery presented a more permanent, positive outcome for Janis. Connor canceled the radiation and began to plan for Janis' surgery.
"Patients are often overwhelmed to receive a new and complex diagnosis," Dr. Chamoun says. "They need options, and they need help as they take many steps throughout a large health system to pursue the treatment they need. Navigators like Emily allow the patient to establish a single point of contact, ready to guide them through a confusing process. She creates efficiency and convenience for both patients and physicians."