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Little Town, Big Idea: Rome’s Cancer Navigators
The organization does more than support patients through a medial crisis. They steer clients through the emotional, financial, physical, and logistical challenges of coping with the deadly disease.
Rome is a small town in northwest Georgia. In small towns, if someone thinks you are marching to a different drummer, they don’t mind telling you so. One day an older doctor confronted young radiation oncologist Matt Mumber and said, “What in the world are you doing? Other physicians are coming to me and complaining that you are preaching stuff like the importance of nutrition and stress management in the treatment of cancer.”
That was 2002, several years before Dr. Mehmet Oz’s television show gave Americans a general understanding of the term “integrative medicine.” Mumber showed his colleague a chapter he was writing about multidisciplinary approaches to disease—which appeared in a textbook with contributions by doctors from Harvard, Wake Forest, and the University of Arizona. Then Mumber took his convictions a step further. Georgia’s Cancer Coalition was searching for innovative ways to treat a disease that carries a lifetime risk of one out of every two men and one out of every three women. With that organization’s encouragement, Mumber formed a self-funded nonprofit organization to test his holistic approach in a series of patient retreats. He named the organization Many Streams Healing Systems, symbolic of his conviction that healing can flow from multiple disciplines, both traditional and nontraditional. Twelve years and a name change later, Rome’s nonprofit Cancer Navigators is the heralded grown-up version of that infant idea.
“Cancer Navigators,” says Mumber, “represents a natural evolution of medicine, an understanding that fixing is not the same as healing. That is, we must be unafraid to apply every possible tool, both old and new, in the quest for healing. We must address every participant in the process, including the physicians, healthcare workers, patients, and families. Caring relationships between people are the most healing tool in the world.”
Executive director Charlotte Atkins is careful to point out that Cancer Navigators’ services are not an alternative, but rather a complement to the medical expertise of primary cancer care providers. Working cooperatively with area healthcare partners—primarily Harbin Clinic, Floyd Medical Center, and Redmond Regional Medical Center—the agency’s education, service, and nurse “navigators” act as guides, helping patients understand their diagnoses and prescribed treatments, then connecting them with relevant resources. The staff includes four licensed nurses and social workers, and this year will expand to include trained volunteers who are survivors themselves.
Since cancer happens on top of whatever else is going on in people’s lives, it creates a daunting array of needs beyond medical care. Patients may require transportation to treatments, aesthetic help with wigs and prostheses, or assistance with insurance and paperwork. Some 87 percent of patients in Harbin’s Integrative Oncology Program use Cancer Navigators. Surveys from that clinic indicate that at least a third of cancer patients suffer significant distress in at least one of six determinants of well-being: financial, emotional, social, physical, nutritional, and medical.
Mumber says, “We were shocked to discover that the needs of some patients went beyond financial resources, that simply getting enough to eat or having heat and clean clothes was beyond them. I don’t know of any other nonprofit that addresses so many aspects of patient disparity and at no cost to them. One patient stunned us when he said the most caring he has ever experienced has come after getting cancer.”
As Mumber’s example illustrates, sometimes what clients crave most isn’t medical advice or financial aid, but emotional support. Brenda Budlong, a primary care physician, certainly had a clinical understanding of breast cancer, but found she needed coping skills and fellowship when faced with the disease herself. She attended the eight-week Sustainable Wellness Program and Renewal Retreat, where she forged a life-affirming bond with the six other women who participated. She says as a result, she can now “concentrate on wellness instead of disease.”
Often patients have a combination of emotional and physical needs. Wilma Ochoa, fifty-one, was working at a Dollar General in Rome when she was diagnosed with breast cancer. She tapped the full range of Cancer Navigators’ nursing, service, education, and counseling assistance. “The day I was diagnosed with stage 3 breast cancer, I didn’t have insurance,” she says. “By the following morning, [service navigator] Angela James had already set up an appointment for me to get on Medicaid that same day. The Navigators team made sure I had food and clothing and helped me pay some of my bills by connecting me with the right organizations to handle those things.
“Having [nurse navigator] Lena Crooker with me at my doctor appointments and being there the day of my surgery meant everything. She is more than just my nurse; she’s a companion who is also very knowledgeable. She made sure I understood everything that was about to happen as my journey began, then throughout and all the way to the end. Sometimes she would call me just to say, ‘Hello, how are you feeling? If you need me, I’m here for you.’”
Ochoa has also taken advantage of MyJourney Compass, an educational effort provided through a federally funded pilot program. Under the auspices of the Georgia Department of Community Health and the Office of the National Coordinator for Health Information Technology, the tool was implemented in collaboration with Georgia Tech, the Northwest Georgia Regional Cancer Coalition, Harbin Clinic, Floyd Medical Center, Redmond Regional Medical Center, and Cancer Navigators. Breast cancer patients receive Nexus 7 tablet computers that enable them to access health information as well as educational materials related to their diagnosis. During the 2013–2014 grant period, some seventy patients were trained by education navigator Katie Weisbecker in a model that is likely to be replicated around the country in years to come.
Ochoa calls her “compass” a blessing: “Not only am I able to have my medical records with me all the time and securely accessible on my tablet, but as my medications change, I am able to look them up and see the possible side effects and other details. And I can get my test results faster. I can also chart my pain and send it to my doctor. My favorite feature is that I can put my upcoming appointments in my tablet and get an alert when it is time for me to go. And be on time!”
“Before my diagnosis,” she continues, “I knew of breast cancer, but I didn’t know much about breast cancer. Knowledge gained through Cancer Navigators has made me more aware of and less scared of the disease. Knowledge is power. I believe that wholeheartedly. I have less stress, and I want to spread the word to others that you can get through this; you will get through this. I am more aware now to not only do the self breast exam, but to also watch my diet and get some exercise.”
What to say (and what
not to say) to those with cancer. Read more
Cancer Navigators provides small-group sessions and retreats focusing on a full range of positive behaviors that may affect clinical outcomes. The aim is to equip patients with tools and information that empower them to help with their own healing. Quarterly eight-week Sustainable Wellness sessions designed by Mumber allow patients like Budlong to explore the physical, mental, emotional, and spiritual dimensions of dealing with cancer. The newest educational offering is called Cancer to Health. It is a twenty-six-week intervention designed to reduce the stresses of diagnosis and treatment for stage 2 and stage 3 breast cancer patients. Cancer Navigators is the first in Georgia to offer this specific program. Additionally, Cancer Navigators offers classes designed to promote cancer prevention through a healthy lifestyle and diet, which are available to patients, family members, healthcare providers, and the general public.
Although Cancer Navigators originally proved a haven primarily for those with breast cancer, in recent years physicians have referred a wider range of patients. Crooker and fellow nurse navigator Julie Brown also help non–breast cancer patients, which now make up two-thirds of the nonprofit’s clientele.
John Quincy Adams of Rockmart was recently diagnosed with colorectal cancer. As a point of pride he will tell you that he is a direct descendant of the sixth president of the United States; as a point of thankfulness, however, he will identify nurse navigator Lena Crooker as his “guardian angel.” His praise echoes Ochoa’s experience with Crooker: “She has accompanied me to every meeting with doctors,” he says. “On her own she has called my niece and my daughter to keep them informed. I have surgery scheduled at Emory University and I wouldn’t even be surprised to see her there, too. After surgery I will have five or six weeks of healing followed by chemo and a liver operation on top of that. I know I can count on Lena from start to finish.”
Although Adams will have surgery in Atlanta, many local residents facing similar diagnoses have chosen to experience the full range of care in Rome. Cancer Navigators is an important factor in those decisions. Harbin Clinic’s Tony E. Warren, MD Cancer Center has twice been named Cancer Practice of the Year by the Georgia Society of Clinical Oncology.
Although Cancer Navigators’ service area primarily encompasses Floyd, Chattooga, and Polk counties, word of its good work has spread, and more metro Atlanta oncologists are referring patients. Last year Cancer Navigators helped 689 newly diagnosed cancer patients and their loved ones because, as its motto proclaims, “people shouldn’t have to journey alone.”
About cancer navigators
Cancer Navigators is a 501(c)(3) nonprofit organization totally funded by donations, which are tax-deductible. Donations may be mailed to Cancer Navigators, 3 Central Plaza, Suite 415, Rome, GA 30161, or made online at cancernavigatorsga.org.
About the author
Lee Walburn served as editor in chief of Atlanta magazine for fifteen years. A cancer survivor himself, he recently released his first book, Just My Type, with proceeds donated to Cancer Navigators. The book is a compilation of Walburn’s work dating back to the 1970s, from his early days at the Atlanta Journal-Constitution to his current weekly column for the Rome News-Tribune. Order Walburn’s book at cancernavigatorsga.org/walburn-book or call 706-295-4119.
This article originally appeared in our 2014 Health issue.