Where to go for treatment

GIST is a rare type of cancer. Pediatric GIST is even rarer. A review of 350 GIST cases at Memorial Sloan-Kettering Cancer Center (MSKCC) found 5 cases under age 18 (1.4%) and 10 (2.9%) cases in young adults (18yrs to 29yrs old)1.

Because it is so rare, it is difficult for doctors to develop expertise because few doctors see more than one or two Pediatric GIST patients. Doing research on Pediatric GIST is also difficult because it is hard for one institution to accumulate enough tissue. Whenever possible, it is recommended to see a doctor with as much Pediatric GIST experience as possible.

In cooperation with several leading Pediatric and GIST centers, the Life Raft Group is establishing both physical centers of excellence and a virtual center of excellence.

The National Institutes of Health holds a biannual Pediatric and Wildtype GIST clinic with a mission to:

• Bring together all patients with Pediatric or wildtype GIST with expert health care providers in the field
• Utilize the resources of the NIH to bridge shortcomings in basic and clinical research
• Provide storage of tumor samples, that can then be accessed by researchers throughout the world 
• Disseminate new information in the field of Wildtype and Pediatric GIST
• Develop innovative treatment protocols

Additionally, in the US, two institutions are initially participating as physical centers of excellence. Doctors from these same teams and other doctors as needed will also participate in a virtual center of excellence. Patients not able to travel to the physical centers can have their records reviewed by a multidisciplinary team of Pediatric GIST experts. These experts will review the case and then meet by teleconference (or video conference) and discuss the case. For further information on how to have a case reviewed by the virtual center, contact the Life Raft Group at 973-837-9092 or at liferaft@liferaftgroup.org.

Memorial Sloan-Kettering Cancer Center
New York, NY
Michael LaQuaglia, M.D. Pediatric Surgeon
Cristina Antonescu, M.D., Pathologist and Head of the Pediatric GIST research project as well as the Pediatric GIST tumor bank.

Texas Children's Hospital
Houston, TX
Alberto Pappo, M.D. Pediatric Oncologist
Jed Nuchtern, M.D. Pediatric Surgeon

 

1. Gastrointestinal Stromal Tumors in Children and Young Adults.
A Clinicopathologic, Molecular, and Genomic Study of 15 Cases and Review of the Literature. J Pediatr Hematol Oncol  Volume 27, Number 4, April 2005. Sonam Prakash, MD, Lisa Sarran, MS, Nicholas Socci, PhD, Ronald P. DeMatteo, MD, Jonathan Eisenstat, MD, Alba M. Greco, MD,
Robert G. Maki, MD, PhD,{ Leonard H. Wexler, MD,k Michael P. LaQuaglia, MD, Peter Besmer, PhD, and Cristina R. Antonescu, MD