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Ron Obenauf’s journey, like that of other cancer survivors, has been full of physical and emotional shocks, setbacks and breakthroughs. No one said being a survivor would be easy.
“I was devastated and went through an emotional roller coaster ride for about 60 days,” Obenauf said. “I was analyzing my entire life, the good and the bad and looking for blame.”
It was just as difficult for his wife, Ardeth. “Ron has always been incredibly healthy, so to have something really major like this go wrong was like getting the rug pulled out from under us.”
Within days, the cancerous section of Obenauf’s colon had been surgically removed. Ardeth had been doing research, and the couple decided Ron should have the rest of his treatment at Vanderbilt-Ingram Cancer Center because of its NCI designation as a Comprehensive Cancer Center. His oncologist was Jordan Berlin, M.D., clinical director of Gastrointestinal Oncology at Vanderbilt-Ingram.
“Dr. Berlin told me my chance of long-term survival was 50-50, which wasn’t very good odds,” said Obenauf. “But he spent a lot of time with me explaining the pathology report and how many lymph nodes were involved and mapping out a treatment plan.”
That treatment plan involved months of intensive chemotherapy. For more than a year, Ron appeared to be cancer free. But in January 2005, a lesion appeared in his liver, and he underwent more surgery to remove part of that organ.
That was the last time cancer appeared. Today, Ron gets regular checkups, which show no trace of a cancer recurrence, and he and Ardeth have added healthy food and exercise to their daily regimen.
“It’s hard to describe, after what I’ve been through, how it feels to know that I’m here every day and I feel absolutely spectacular,” said Obenauf. “There are a few lingering things that I’m probably going to deal with the rest of my life, like fatigue, but my life is good.”
Still, when it’s time for those regular checkups, Ardeth has episodes of anxiety – one of the hallmarks of life after cancer for survivors and their families.
“Being a cancer survivor is challenging,” said Julie Means-Powell, M.D., an assistant professor of Medicine and breast cancer specialist at Vanderbilt-Ingram. “Even if their tumor was tiny, my patients tell me they are always waiting for the other shoe to drop. At any time in their life, while life is going really well, they are waiting for that cancer recurrence. So patients need to find ways to manage that stress and those of us in the medical community are finding better ways to support them.”
Finding their way
The need for new and enhanced survivorship programs is clear. Amazing advances in childhood cancer treatments have created a new generation of adults who are cancer survivors. The NCI estimates that 14 percent of survivors were diagnosed 20 or more years ago.
Some treatment regimens are keeping patients alive years longer than before, creating a patient population for whom cancer is managed like a chronic disease.
Whether they have been cured of their cancer or they are keeping the disease in check, patients have a range of physical, social and emotional challenges that need to be addressed by the medical community.
To help cancer patients and their families navigate life as a survivor, Vanderbilt-Ingram Cancer Center, the Department of Pediatrics and the Monroe Carell Jr. Children’s Hospital at Vanderbilt have launched the REACH for Survivorship Program,
a community resource to meet the unique needs of children and adults who have received a cancer diagnosis. Debra L. Friedman, M.D., is the director of the REACH for Survivorship Program.
“The goal of the survivorship clinic is to provide dedicated care focused on the survivor and not simply their cancer diagnosis,” said Friedman, E. Bronson Ingram Chair in Pediatric Oncology. “We look at their medical needs with respect to both cancer and the effect of cancer treatment on other organ systems, as well as their psychosocial, functional and social needs.”
The Survivorship Program – open to any patient regardless of where initial cancer treatment was received – is the only clinical program in the country that treats both adult and pediatric cancer survivors. The clinic is located outside of the Cancer Center, so survivors aren’t thrust back into a hospital setting.
“We wanted the focus to be on wellness, not illness,” Friedman explained.
The REACH for Survivorship Program recently added a
second clinic at Nashville General Hospital at Meharry to serve even more patients.
Before patients ever walk in the door to one of the survivorship clinics, a multi-disciplinary team of health professionals reviews the patient’s cancer and its treatment, health problems
that may be related to the cancer, and issues of concern to the patient. This is accomplished through patient surveys and a
careful review of medical records. A visit is then arranged. During the visit, patients meet with a social worker followed by a
physician or nurse practitioner who takes a detailed history of their cancer diagnosis and treatment and performs a thorough physical examination. Patients may be referred to other subspecialists, based on their treatment history, and they will be counseled about their medical risk factors and what they can do to keep themselves healthy.
Friedman says this kind of program is crucial because all too often a cancer patient leaves treatment without a roadmap for the rest of their life as a cancer survivor.