Storing fibrolamellar cancer cells (tissue) for future research is crucial for finding a cure and treatment for FLC. It is one of the first questions asked by researchers before they are willing to delve into the fibrolamellar world…”Is there tissue?” It is also critically important that each patient reserve some of his own tissue for personal treatment. This is best accomplished at the time or a surgery or procedure as it can be difficult to access tissue after the fact. Genetic testing of tissue and treatment plans tailored to a patient’s cancer profile are becoming an important part of cancer therapy for individual patients. Therefore, any patient undergoing surgery, biopsy or other procedures where cancer cells are being removed (for example draining fluid, ascites) should have tissue saved.
The Foundation works with StoreMyTumor to bank tissue for research and for patient use. They have kits which surgeons are familiar with so the tissue is taken live from the operating room and transported safely into storage. StoreMyTumor has an FAQ page which covers both the reasons to bank tissue and goes over their procedures and routines. Patients interested in banking tissue with StoreMyTumor should contact the FCF as the Foundation covers many of the initial costs involved.
A fibrolamellar tissue repository has been created at Rockefeller University in New York and is being managed by Dr. Sandy Simon. This repository is in the Tucker Davis Fibrolamellar Research facility. This tissue bank is primarily for fibrolamellar research, and not for individual patient therapeutic purposes.
Note that a patient can have tissue stored in multiple tissue banks – with StoreMyTumor for personal use and with Rockefeller University for research purposes. Both labs will help you with the process.
Meet two young patient scientists who explain the urgent need for fibrolamellar tissue.