Pediatric Hematology/Oncology

Long-Term Cancer Survivors Program

The Long-Term Survivors Program, established in 1987 within the Division of Pediatric Hematology/Oncology at Golisano Children's Hospital, is one of the longest running clinics in the United States. Patients are usually transferred to the Long-Term Survivors Clinic when they have been disease free and off therapy for two years.

Currently, there are approximately 450 patients enrolled in the clinic with an influx of about 30-40 new patients a year. Patients are generally seen on a yearly basis. Exceptions include:

  • Older patients who are further from the completion of therapy may be seen every 2-3 years.
  • Patients newly enrolled in the clinic may be seen every six months.
  • Children approaching puberty may be seen more frequently in order to closely monitor growth.

We follow our patients into adulthood with no upper age limit.

The goal of the program is to provide monitoring and counseling regarding late effects of therapy. It is not designed to be a primary care clinic, but to complement care delivered by primary care providers. In addition to providing patient care and follow-up, the clinic is an educational and advocacy resource for patients, families, and other health care providers.

Our Specialists

  • O.J. Sahler, M.D. is the medical director responsible for overseeing the care delivered and the functioning of the clinic.
  • Louis Constine, M.D. is the pediatric radiation oncologist who provides medical direction and care for patients who have received radiation therapy.
  • Pediatric Psychosocial Team provides educational liaison services including periodic education screening within the clinic and advocating for services within schools and the community. Social work and parent advocacy are also available resources for patients and their families.

What to Expect

During a visit to the clinic, patients can expect:

  • An interval history
  • Complete physical exam
  • Appropriate lab work and imaging studies

Other periodic evaluations, such as an electrocardiogram (EKG), echocardiogram (ECHO) and pulmonary function tests (PFTs) may be ordered to monitor health status or to evaluate symptoms. Referrals to other sub specialists, such as cardiologists and endocrinologists, are based on assessments made during the clinical visits in coordination with the primary care physician.

Resources

A long term survivors’ handbook, Voyages: A Map to Survivorhood, was written in conjunction with CURE Childhood Cancer Association and is available to all clinic patients.

The handbook provides each survivor with an individual summary of his/her clinical course including presentation, diagnosis, and treatment summary, including any complications. The handbook also provides information regarding a survivor's specific diagnosis with individualized references to the treatment given and the associated potential late effects. In addition, the handbook provides general information regarding insurance and employment issues and a comprehensive listing of local and national resources.

More Information

If you would like more information about the Long-Term Survivors Clinic at Golisano Children's Hospital, contact us at (585) 275-2981.

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Contact Us

Pediatric Hematology/
Oncology

Golisano Children's Hospital
601 Elmwood Avenue
Rochester, NY 14642
Phone: (585) 275-2981
Fax: (585) 273-1039

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