Carol A. Rosenberg, ’80 MD, has more than three decades’ experience as an internist, clinical researcher and medical educator, but it was an unexpected medical crisis within her own family that profoundly changed the course of her career.
Dr. Rosenberg, now director of preventive health initiatives at NorthShore University HealthSystem and clinical associate professor at the University of Chicago Pritzker School of Medicine, directs NorthShore’s Living in the Future (LIFE) cancer survivorship program, which she also founded. She credits her experience both as a physician and parent of a cancer survivor for her passion and commitment to advancing cancer survivorship care.
A New Perspective
Rosenberg and her husband, Gordon Derman, MD, a plastic and reconstructive surgeon, are the proud parents of Ari (31), Ben (27), and Yael “Yali”(24) Derman. In 2000, their daughter Yali suffered a recurrence of acute lymphocytic leukemia, a cancer of the blood and bone marrow. The relapse―extremely uncommon in her circumstances―meant a second course of treatment and potentially a worse prognosis. Luckily, her brother Ben was a perfect match and donated his bone marrow for a transplant performed at Ann & Robert H. Lurie Children’s Hospital of Chicago. Yali recovered fully and has been cancer-free ever since, but that personal experience gave Rosenberg a new perspective on the continuum of care for cancer survivors.
“Dealing with the things that happened afterward, and putting my daughter and my family in the best position to ‘carry on’ after a traumatic experience like that, I learned what the essential ingredients are to care for cancer survivors,” explains Rosenberg, previously one of the principal investigators for the landmark Women’s Health Initiative, a study from the 1990s examining the risks of hormone replacement therapy.
Although not an oncologist, in 2006 she was tapped to establish NorthShore’s cancer survivorship program. With initial funding from a Lance Armstrong Foundation community education grant, Rosenberg founded the LIFE program. It was the first of its kind in the Chicago area, weaving together community-based efforts to empower and support cancer survivors, with individualized health care, self-management tools and clinical support after treatment completion.
“The LIFE program was a way to merge my clinical savvy, my clinical research experience, and my personal life, being the mom of a cancer survivor,” she says. “I think I was selected because the institution needed somebody who was thoughtful, who had experience from both ends of the stethoscope.”
Managing the Transition
For patients, the LIFE program focuses on cancer survivorship as a distinct phase of health care, emphasizing the transition to a “new normal.”
“There are specific kinds of resources and medical attention that are necessary to enhance the lives of cancer survivors,” Rosenberg says. To that end, she dedicates a fair amount of time coaching other physicians on how to provide primary care to long-term survivors.
At the core of the LIFE program is a tailored, risk-adapted consultation with an oncology nurse. Over the course of the meeting, a personalized survivorship care plan is developed, which includes a cancer treatment summary, guidelines for monitoring for recurrence, and the long-term clinical consequences of their treatment, as well as suggested resources, services and providers with expertise in cancer survivorship issues.
The care plan isn’t just a tool for the patient: the detailed information is given to the patient’s primary care provider (and incorporated into their electronic medical record). Rosenberg believes it is essential to educate physicians about the serious health consequences of cancer treatment that can crop up years after the disease is “cured.”
The plan is only the beginning of the LIFE program, however, a series of free Survivorship 101 seminars address the common concerns and unique needs of recent cancer survivors. Topics include nutrition, exercise, sexual intimacy after treatment, and dealing with the insurance and employment consequences of lengthy treatments.
A Family of Survivors
For Rosenberg’s daughter, art therapy was an essential part of recovery. She channeled that passion into the creation of a line of designer handbags, sold through Sak’s Fifth Avenue, with all proceeds going to support family services at Lurie Children’s. Yali went on to graduate from the University of Pennsylvania with a degree in nursing and is now a pediatric oncology nurse at Lurie Children’s.
Dr. Rosenberg credits her upbringing for her unique approach to medicine: she was raised in an observant Jewish household in the Rogers Park neighborhood of Chicago and both her parents were Holocaust survivors.
“My parents were very, very dedicated to the idea of medicine, the idea of healing, and the idea of rebirth of the next generation,” explains Rosenberg, whose brother, Michael J. Rosenberg, ’77 MD, ’79 GME, her nephew, Jonathan Rosenberg, ’11 MD, and her son, Ben Derman, ’13 MD, all graduated from the medical school at Northwestern. “The things that I’ve done―whether it’s primary care practice, clinical research, or being a mom and grandmother― have been accomplishments that were derived from looking at the sanctity of life, and wanting to make the world a healthier place.”
Rosenberg is even philosophical about her own family’s struggle with cancer. “I’ll always think that perhaps the situation with my daughter happened to our family because we have the fortitude and the emotional and intellectual resources to make life better for other survivors based on our experiences.”