Cancer treatment's new focus: survivors

UNC center to help patients face the challenge of living

UNC Hospitals' cancer program will join an invitation-only group of cancer centers dedicated to meeting the singular needs of the growing number of patients who have beaten the disease but face myriad ongoing issues.

UNC's Lineberger Comprehensive Cancer Center is the eighth member of the national network, which was established by the Lance Armstrong Foundation. Other members include such noted cancer programs as Harvard University's Dana-Farber Cancer Institute in Boston and Memorial Sloan-Kettering Cancer Center in New York City. UNC is the only participating cancer center in the Southeast.

Cancer survivorship has become a buzz word in oncologic care in recent years amid steadily rising survival rates across most types of cancer. Thanks to better treatments, the National Cancer Institute estimates, about two-thirds of all adult cancer patients survive at least five years, and close to 80 percent of all pediatric patients do. In all, there are about 11 million cancer survivors nationwide, according to the cancer institute.

Yet, until recently, the health care system has done little to address those patients' medical and emotional needs, said Marci Campbell, a professor of nutrition at UNC-Chapel Hill and co-director of the new Lance Armstrong Foundation LIVESTRONG Survivorship Center of Excellence.

"The end of active treatment, we think, is a time of celebration -- you've finished chemotherapy, you've beaten your cancer," Campbell said. "But for many patients, that's the scariest time. While they're in treatment, they feel like they're doing something. Then, they're suddenly cut off."

Cancer support groups abound, but they often cater to patients coping with diagnoses or in the throes of treatment.

Last week, the Chapel Hill cancer center announced it will use a five-year, $1.5 million grant from the Lance Armstrong Foundation to develop tools and programs for survivors of breast, prostate and colon cancers. Those three cancers account for the largest number of survivors, Campbell said.

UNC-CH already has a survivorship clinic for testicular cancer, the disease that struck cycling great Lance Armstrong, and it is launching one for survivors who underwent bone marrow transplants. Campbell said UNC-CH's goal is to have some type of survivorship program available to all cancer patients treated at Lineberger, which treats patients from all over the state.

Duke University Medical Center in Durham is also developing programs for cancer survivors, beginning with breast cancer and what may be the nation's only clinic dedicated to brain tumor survivors.

Many efforts to target survivors focus primarily on ensuring that they get appropriate follow-up care and are aware of the side effects of treatment, as well as signs of possible recurrence. The American Society of Clinical Oncology, a professional group for cancer specialists, has developed templates that help doctors prepare such treatment summaries for breast and colorectal cancer survivors and is readying a checklist for lung cancer.

Campbell said UNC-CH's survivorship clinics will take a more holistic approach, tackling both medical and psychosocial needs such as anxiety about recurrence and difficulty returning to work and life responsibilities. One specific program that UNC-CH will cultivate is a statewide peer counseling program to train cancer survivors to talk with others who have beaten the disease.

"Often, cancer survivors say that what they most want is to talk to someone who has been through cancer themselves," Campbell said.

Valerie Jones of Carrboro, who was diagnosed with malignant melanoma in 1998 and survived a recurrence in 2000, remembers feeling lost and alone after completing each round of treatment.

"You've had your life totally turned upside down, and you have to put it back together again," said Jones, a registered nurse who works at UNC Hospitals. "You have to figure out what works and what doesn't."

Sometimes survivors struggle for years, said Jones, who is on the community advisory board for the new UNC-CH survivorship center of excellence. Nearly eight years out from her recurrence, she is still trying to find the right work situation. Jones cannot be on her feet all day because she developed lymphedema, which causes fluid to build up in the extremities, as a side effect of having lymph nodes removed. For the moment, she is picking up hours on an as-needed basis in a UNC Hospitals psychiatric unit.

"You can't do things the way you did before," Jones said.