Beyond cure: Rochester has a long history of focusing on survivorship

For all but five months of her life, Ginny Hurley has been a cancer survivor.

She was born in the late spring of 1957. By November of that year, she was not eating well and had a general malaise that prompted her mother to check in with the family doctor. He felt a mass in her abdomen and sent the young family to Strong Memorial Hospital.

Today, the doctor would send them for an MRI or CT scan, but in 1957, the only option was exploratory surgery. The surgeons found a tumor — neuroblastoma — that stemmed from the adrenal gland and wrapped around the aorta. They attempted to remove the tumor, but because the baby was doing poorly during the procedure, they were forced to close the incision, leaving much of the cancer behind.

The only option for addressing the cancer that remained was radiation. Under the supervision of Philip Rubin, M.D., now professor emeritus of Radiation Oncology, Hurley underwent six weeks of daily treatments in an effort to cure her cancer.

The prognosis was grim, with uncertainty about whether the treatment would eradicate the disease.

“There was a high likelihood that I would not survive childhood,” Hurley says. “But I’m still here.”

Now 57, Hurley is the happily married mother of a healthy 28-year-old daughter and a 24-year-old son. She works as a nurse practitioner in oncology.

Hurley is remarkable among the more than 14 million cancer survivors in the United States today. As late as the 1970s, only about one in two people diagnosed with cancer would survive at least five years. Today, more than two out of three will survive that long, according to the American Cancer Society. The progress in cancer prevention, diagnosis and treatment has fueled the growing numbers of survivors, and the survivors have drawn more attention to the long-term effects of cancer treatment.

“As oncologists caring for our patients, we clearly recognize that cure is not enough,” says Louis “Sandy” Constine, M.D., professor of radiation oncology who came to the University of Rochester Cancer Center in 1981. “But unfortunately, for many years, cure had to be enough. We are now faced with what we call the Agony of Victory, working with our patients to help them live the best possible life that they can.”

For much of the past 40 years, clinicians and researchers at Wilmot Cancer Institute have been looking beyond cure in cancer. The early work in survivorship was led by Hurley’s doctor — Philip Rubin, who was the medical center’s first chair of Radiation Oncology and a giant in the field of clinical oncology and radiation pathology. He was a national leader and pioneer in the study of radiation’s effects on normal tissue. Today, Wilmot Cancer Institute carries on his legacy both in research and in clinical services for survivors.

Lois Travis, M.D., Sc.D., leads the survivorship research efforts as director of the Rubin Center for Cancer Survivorship in the Department of Radiation Oncology at Wilmot. Among her current projects is a multimillion-dollar, multi-center study to identify which patients are genetically more susceptible to side effects from cisplatin-based chemotherapy.

Constine, who worked with Rubin, leads a multidisciplinary team of specialists with the Judy DiMarzo Cancer Survivorship Program at Wilmot. The clinical program, launched in 2013, is designed to help cancer survivors understand what to expect once their treatment is completed and to prepare them to address the hurdles that can come with living beyond cancer. It is also working to educate primary care providers about the special needs of patients who have undergone cancer treatment.

“For someone who survives cancer, there is no free lunch,” Hurley says. “Things are never the same. You have to find a new normal, whatever that is.”

Long-lasting side effects can occur months or years after cancer treatment. Known as late effects, they can include lymphedema, cardiovascular problems, infertility, secondary cancers and lung damage.

For Hurley, that included scoliosis resulting from the radiation, which caused muscle weakness and atrophy in the area where it was delivered. At age 11, she required surgery that included a spinal fusion and placement in a body cast for healing.

“I spent six months in a cast from my chin to my knees and another six months in a cast from my chin to my hips, all at such a vulnerable age,” Hurley says. 

In addition, she has had to endure recurrent bowel obstructions felt to be related to previous treatment, and in 2006, she was diagnosed with breast cancer. She recently sought out Constine for his expertise in late effects.

Although cancer survivorship has presented her with many challenges, Hurley also has found that it has given her great gifts — a life with a wonderful husband and children, and a career that allows her to make a difference.

“Ginny makes each of her days a passionate statement, instead of just marking time,” Constine says. “She teaches me to appreciate each day, to understand the preciousness of life.”

“I never wanted to be anything but a nurse,” Hurley says. “Having experienced hospitals, doctors and nurses from an early age, I always knew that I wanted to give back what had been given to me. “Being involved with a patient during their cancer journey is a privilege beyond comparison.”

Hurley earned undergraduate and graduate degrees from the University of Rochester School of Nursing.  Having had her previous medical care at Strong Memorial Hospital, she felt strongly that UR was where she wanted to study. She spent the early part of her nursing career at the University of Rochester Cancer Center. Since becoming a nurse practitioner, she has worked primarily in a private oncology practice in outpatient care.

 “I’ve had an incredible life,” Hurley says. “And I’m grateful for every second of it.”