"I feel nothing in common with the breast cancer community," Corneliussen-James said. "You'll never go back to your old normal. When you're a primary breast cancer patient, you're worried about being on drugs for a year. The metastatic cancer patient is worried about running of out drug options. If you're out of drugs, that means you're dead."
By the end of the meeting, Corneliusen-James resolved that her best solution was to finance promising, early-stage projects. METAvivor's grants aren't enough to push a drug to clinic trials or generate a breakthrough. But the group hopes that it can help push forward research projects far enough to apply for larger funding through national and government research projects.
Welch, who is now at the University of Kansas Cancer Center, helps METAvivor pick groups to fund. He said its analysis of spending is correct, though it may not appear that way at first glance.
"In theory, every drug that goes into a clinical trial focuses on metastatic patients," Welch said, but the results of the studies often show which drugs are good at preventing the disease from further metastasizing.
"This is the only group that focuses on every dollar going to metastatic cancer research," he said.
Welch said metastatic research is both particularly expensive and complicated. A single experiment cost his lab $65,000, and it took his team 15 years to get to the point they could perform it.
"For the longest time, people thought that a tumor cell is a tumor cell is a tumor cell," Welch said. "They didn't realize that the cell that make metastases is different than the cell that makes the tumor in the first place."
Park, from Hopkins, agreed recent discoveries have revealed why the battle can be more daunting against cancer cells that find a new place to live.
Each cancer cell can have a slightly different genetic composition, which Park called "genetic instability" or "genetic slipperiness." Considering even a very small spot of cancer can have billion cells, Park said, the variation makes it difficult to determine how to treat it. Park said the goal is to develop a treament that turns metastatic cancer, now an incurable disease, into a chronic condition that can be managed.
About 40 women are members of METAvivor at any given moment, and about 10 members die each year. Two founders died within the first 12 months, and they've lost at least 30 since they began.Each death is met with both sadness and relief.
"They're done, and thank goodness," Campbell said. "Because there's only so much the human spirit can take."