Researchers will tell you it is the primary tumor that holds the entire genetic code.  Studying primary tumor tissue — when it has been fresh-frozen and the DNA and RNA are preserved, and when there is comprehensive patient data accompanying it — is key to understanding how a cancer spreads and why. 

A unique circumstance

In so many cancers, this process of removing and freezing primary tumor tissue, collecting data, and then studying both has been relatively straightforward: The patient comes to the hospital for inpatient or outpatient surgery; data and consent are collected; the tumor is removed, frozen and studied.  Breakthroughs in understanding and treating breast cancer and prostate cancer, particularly, can be traced to studying fresh-frozen primary tissue.

But melanoma is vexing in so many ways, beginning with a problem not present in other cancers: Melanoma tumors are usually removed in a dermatologist’s office, not in a hospital surgery setting.  Because of this locational circumstance, the tumors are not frozen, critical patient data is not recorded, and the chance to study that primary tissue is forever lost.

Enter Valerie Guild. She lost her 26 year-old daughter to melanoma and made it the foundation’s goal to help find the cure.  She asked leading researchers what was missing in that fight—what they needed—and they all told her the same thing: We need fresh frozen primary tumor tissue; we need a critical mass of it, from a variety of patients; we need the patient data; and we need to collaborate on the research.  But they also told her it was nearly impossible to do, from the relatively small number of melanoma tumors removed in hospital settings, to the need for freezers and protocol in those settings, to the complicated process of getting individual research institutions to work with each other on the tissue research.

Don’t tell Valerie Guild something is impossible.

The first site of the Melanoma Tissue Bank Consortium will soon open at University of Pittsburgh Medical Center under the watchful eye of Dr. John Kirkwood.  Three other institutions and researchers are part of the consortium: Dr. Mohammed Kashani-Sabet and California Pacific Medical Center in San Francisco; Dr. Sancy Leachman and Oregon Health and Sciences University in Portland; and Dr. Jeff Wayne and Northwestern University Medical Center in Chicago.  Opening the other three branches is next on AIM’s “to do” list.

The tissue will be available to these four research institutions, as well as others who apply to use the tissue or data for their own research. A giant step forward, indeed.