Since tissue banking began a few months ago, two hospitals have refused to participate.
"Their policy was that it was their material to use," Powers said. "Once it comes out of the patient in their institution, it belongs to them, not to the patient."
While some cancer experts think private banks might help, others were critical.
"These things are not regulated. There are no standards. It's the Wild West," Compton said. "Until this is all standardized and regulated, I'd say you're just throwing your money away."
There's another Catch-22. Pathologists, who are required to keep tumor samples for several years, are increasingly worried about releasing tissue that might be needed later for new treatments, Compton said. Meanwhile, development of those treatments hinges on tissue.
Jefferson's McCue thinks researchers hungry for tissue increasingly are asking for samples as the "ticket" into clinical trials, even though they're not really essential.
Patients don't realize how small the samples are. Years from now, when a more promising trial starts, McCue doesn't want to have to say there's nothing left. Then "we've blown our stake at the poker table," he said.
Should cancer patients consider all this when they have surgery? Most doctors think that's unrealistic.
"Hopefully, as we move more toward personalized medicine, the medical community will think about it so patients don't have to," said Linda Liau, a neurosurgeon who directs UCLA's brain-tumor program.
Perry is still steaming over avenues now blocked because there is no frozen tissue.
"I am utterly crushed by not having access to what I truly believe is the best, most amazing trial ever," she said, referring to a vaccine trial in Belgium. The trial that needed her slides rejected her because her cancer had spread.
She's weighing less-appealing alternatives now.
"I'm totally freaking out day after day," she said, "desperately digging for something that holds promise."
Contact staff writer Stacey Burling at 215-854-4944 or sburling@phillynews.com.
