Dr. Carolyn Fein-Levy


Pediatric Hematologist/Oncologist at the Cohen Children’s Medical Center of NY

About Dr. Carolyn Fein-Levy:

As the Head of the Pediatric Oncology Rare Tumor and Sarcoma (PORTS) Program at the Cohen Children’s Medical Center of New York (CCMC) my time is divided between clinical care (70%), clinical research (20%) and administrative responsibilities (10%.) My primary role is the diagnosis and formulation of individualized treatment plans for patients with sarcomas, rare tumors, and histiocytic disorders. Working with these rare cancers prompted my interest in hereditary cancer predisposition.

I have achieved a regional as well as national reputation of excellence on a clinical level. I provide state of the art clinical care for our patients and foster research alliances. I am the local principal investigator on numerous national Children’s Oncology Group (COG) clinical trials which range from bone and soft tissue sarcoma to germ cell tumors and liver tumors. I opened a local rare tumor registry at CCMC. I collaborate closely with national and international colleagues who also care for children with rare diagnoses. I have enrolled multiple patients in rare disease registries, which has facilitated in the discovery of finding new mutations that may be involved in the pathogenesis of these tumors.

As a member of the North American Consortium for Histiocytosis (NACHO), I am the local principal investigator for international clinical trials for patients with histiocytic disorders, including a therapeutic trial and a trial researching the molecular basis of histiocytosis. Our site was selected as the new therapeutic site for the NACHO hemophagocytic lymphohistiocytosis (HLH) Ruxolitinib trial. We have published our experience using anakinra in primary and secondary HLH. I am on the membership subcommittee for NACHO.

The rare tumor and sarcoma patient population is the ideal framework for looking at cancer risk. I am the principal investigator in the study Healthy Futures, a Genomics Risk Evaluation for Patients with Cancer. This study incorporates family and personal history of cancer with genomic profiling in order to understand how genetics may contribute to the development of cancer for each child. I am the co-chair of the pediatric tumor board and the chair of the Pediatric Molecular Tumor Board here at CCMC where we review the somatic alterations in our patient’s tumors which leads to treatment options as well as works to help further our germline genetic testing.

I care for a substantial number of patients with Bloom Syndrome. One of my special interests is in developing better chemotherapy treatment options for pediatric and adult patients with Bloom Syndrome who develop cancer. Further, I am on the medical advisory board for the International Bloom Syndrome registry and provide ongoing medical support for the physicians and families around the world. Our experience with endocrinopathies and treatment related toxicities has recently been published.

In addition to my clinical practice since 1998, I have volunteered as a camp doctor for Chai Lifeline’s Camp Simcha and, since 2009, have served as the associate director of the Camp Simcha Girls Medical Staff. As a cancer survivor, I bring a unique combination of medical expertise and personal experience, as well as and serving as a role model and living illustration of some of the intriguing possibilities of life after cancer.