With surgery and chemotherapy, Roberta Bash, 67, of Downingtown beat advanced-stage ovarian cancer in 2010.
Then, it came back.
"Cancer can go dormant, and I didn't know that," she said.
The second time, Bash wanted to explore all her options - including an experimental treatment at Penn Medicine that manipulates a patient's tumor cells to trigger an immune response.
So, during her surgery last March, instead of allowing her tumor to be tossed out or donated for research, she saved it.
The company StoreMyTumor, which markets itself as a concierge service for tumors, negotiated the tissue's harvest, processing, and cryopreservation.
The start-up, launched in 2011 by local entrepreneur Michel Sadaka, is among just a few private, for-profit tumor-storage firms in the world.
Most patients, like Bash, use the service to get into clinical trials that require tumor tissue. Stored tumor can also be used for diagnostics, or to assess a cancer's responsiveness to various drug regimens.
Given the fast-changing nature of personalized medicine, storage amounts to an expensive gamble. "Right now, if [patients] have the money - and that's the problem - it's probably worth storing. This is a very dynamic time in cancer therapy," said Penn's chief of gynecologic oncology, Mark Morgan. "Of course, you may pay that, and store it, and never use it."
Most hospitals already store a sliver of every tumor in paraffin. But patients' right to access those samples can be problematic. Private banking sidesteps that issue, and adds a full menu of storage formats, including paraffin, frozen, and cryopreserved, or "viable."
StoreMyTumor contracts with Penn to process and store the tissue.
So far, Sadaka said, about 600 people have used the service, which typically costs $4,000, plus $38 a month for storage.
Bash felt the service was worth it. "I was a bit taken back by the price," she said. "But how do you put money on a life?"
She said she's hoping to get into Penn's immune therapy trial. Though Penn offers free tumor storage to ovarian-cancer patients who get surgery there, Bash wanted to stick with her surgeon at Lankenau Medical Center.
As Sadaka tells it, giving patients access to clinical trials, even if they're not undergoing surgery at a research hub, is a major benefit of tumor storage.
It could aid researchers, too. "We're helping them accrue more patients from all over the United States," he said. "And, in terms of community hospitals and private practices, they're not academic institutions . . . we offer them a bridge to innovation."
Pawel Kalinski, a professor of surgery at the University of Pittsburgh, sees the value in that. He has done cancer immunotherapy trials, some using a patient's own (autologous) tumor cells, others using tumor cells from other donors. The donated cells don't always target the cancer effectively, but the patient's own cells are always a match. "When we are using autologous tumor cells, we know that we will be able to treat that patient," he said.
He said StoreMyTumor might help him treat patients who are no longer candidates for surgery, or who don't have easily identifiable tumor mass.
"Maybe five or 10 years from now, most of the high-risk patients' tumors will be banked, one way or another," he said. "Whether it will be private or done by the institutions that are treating them with the standard treatments, I don't know. "
There is at least one other private tumor bank. HealthBank is run by Northwest Biotherapeutics, a publicly traded cancer immunotherapy company based in Bethesda, Md. It charges $2,000 for processing and a year of storage, plus $195 for each subsequent year (about $16 a month).
Chief executive Linda Powers said demand has been steadily rising, though the company has not marketed the service.
But cancer care is evolving quickly. So there's a chance that such tumor storage could be unnecessary in the future, said Art Caplan, head of medical ethics at New York University.
"You'd hate to be in a position where you spent $10,000 to store your tumor for four years," he said, "and then you find you can't afford the co-pay on the drugs that would cure you."
Some doctors and hospitals have resisted or refused requests to submit tissue to StoreMyTumor.
Jennifer Dunn, 47, of Berkeley, Calif., had a tense talk with her surgeon when she asked him to use the StoreMyTumor kit to save her tumor.
Dunn had recurrent soft-tissue sarcoma, and wanted to keep her options open by banking her tumor.
She said the doctor eventually gave in, but sent only a sliver of tissue. "He complied, but barely," she said. When the sample arrived at Penn, it had no living cells to cryopreserve. "It's your tissue and you have every right to do this," she said. "But sometimes you have to fight for that, and it's pretty disturbing."
But interest is growing, said Leah Troiano, who works for StoreMyTumor and had her father's tumor stored. She said the company recently contracted to add a lab in the United Kingdom, fpr European clients.
Troiano spends most of her time walking patients through the process, dealing with logistics, and persuading doctors to participate. Those battles are becoming slightly less frequent, she said, but they're nowhere near over.
"We're growing, but not at the rate that we'd like to," Sadaka said. "Health care is a conservative industry."