When Perry had surgery in September, she knew better than most patients how valuable the deadly cells in her tumor might be someday.
A frequent participant in brain-cancer message boards and an aficionado of new research, Perry knew she might want to enter a European cancer vaccine clinical trial or seek genetic testing that would require frozen pieces of her tumor. She said she asked her surgeon at Thomas Jefferson University Hospital to freeze some just in case.
Freezing tumor cells in a form that can be used for vaccines or advanced genetic testing is unusual. Doctors always put some of the tumor, preserved in formalin and embedded in wax, in slides and small blocks for diagnosis and later testing. Perry knew she would want that, too.
When in March she requested the frozen tissue and her slides, Perry said she ran into weeks of red tape and a Catch-22. She says Jefferson balked at sending slides to another hospital until she was officially in a trial there. But she needed the tissue to enter the trial. Jefferson finally mailed the slides at the end of May and she picked up the tissue blocks herself at the hospital. To her dismay, she learned there was no frozen tissue.
The 37-year-old South Philadelphia woman, who has had speech problems since the surgery and now communicates more easily by e-mail, wrote that she felt "helpless" and "enraged" as she fought for the tissue. She felt the hospital, which has said it will not comment on her individual case, got "in the way of my trying to save my own life."
Cancer surgeons at Jefferson usually do not freeze tumor tissue, and Peter McCue, who runs Jefferson's anatomic pathology laboratory, said he did not receive instructions to save frozen cells. He said Perry should not have had trouble getting slides.
Perry's experience is unusual, but she says she's seeing more complaints on message boards from patients having trouble getting tissue sent from one hospital to another.
