Stage 4 breast cancer patients seek to manage terminal condition
Annapolis nonprofit says the disease is overlooked, raises thousands to research it
Dian "CJ" Corneliussen-James, president of METAvivor, left, chats with Cecilia "CC" Curry. (Algerina Perna, Baltimore Sun / June 25, 2012)
"One that you don't want to join," answered 55-year-old Sally Ring, setting off another wave of giggles.
Moments earlier, Ring had told the group her cancer had spread to her bones and she'd had another stint on a ventilator. Her colorful storytelling had the women doubled over.
"My motto for through this whole thing is that somebody has it much worse," Ring said.
The members of METAvivor swapped battle stories and traded tips for icing away pain, rolling their eyes at the indignities of a cancer that keeps eating into new parts of their bodies.
Each woman has Stage 4 breast cancer, also called metastatic breast cancer. Each expects it to kill them, a realization that colors their perspective on everything from high school reunions to whether to renew a magazine subscription for one year or three.
"With primary breast cancer, you get sick, you deal with it, you move on," said Kay Campbell, 64, the group's vice president. "With metastatic breast cancer, you get it, you've got it. You die."
What began as a support group in 2007 — the name is an amalgam of metastatic and survivor — quickly morphed into advocacy as news reports convinced the women that metastatic cancer gets short-changed in research. While billions are spent on cancer studies each year, they said, only 2 percent is dedicated to exclusively metastatic cancer.
The members aren't searching for a cure. They're searching for a way to manage their cancer in the same way insulin makes it possible to manage with diabetes.
In the past three years, the Annapolis nonprofit has awarded more than $275,000 in research grants to scientists investigating metastasis, the process when cancer cells travel through the body and take root someplace new. Experts say most breast cancer research is done on metastatic patients but most of the results benefit early stage cancers and prevention efforts.
The METAvivor women see the funding gap as more maddening during Breast Cancer Awareness month, when the world seems awash in pink but talk of "the cure" doesn't apply to them.
"To me, it's turned very shallow," Campbell said. "That's the beginning of the disease. They don't ever talk about the end. They don't ever talk about us."
Their current online fundraising campaign is called "Elephant in the Pink Room" and a pharmaceutical company is giving $1 for every Facebook like or tweet of their website mbcaware.org.
Breast cancer represents a third of all cancers diagnosed in women — more than any other type, according to the American Cancer Society. The organization estimates about 4,700 women will be diagnosed in Maryland this year. The earlier stage in which it is detected, the higher the survival rate.
Women whose cancer is initially diagnosed as metastatic have a 23 percent chance of surviving the next five years. While breast cancer is often diagnosed early, about a third of all women diagnosed will eventually develop metastatic cancer, which is terminal in nearly all cases, experts said.
Many of the METAvivor women thought they had beaten the disease before the cancer cells hiding in their bodies began an encore performance. In each case, their conversations with doctors changed.
"With early-stage cancer, doctors work toward a cure, toward eradicating the cancer," said Dr. Ben Ho Park, associate professor of oncology who works at the Sidney Kimmel Cancer Center at Johns Hopkins. "In metastatic breast cancer, the goal is very different. We don't feel, at least in 2012, that is a curable disease."
Dr. Jeanine L. Werner of Annapolis Oncology Center said she asks one question when treating metastatic patients: "How can we keep them as comfortable as possible as long as possible?"
Dian "C.J." Corneliussen-James, one of METAvivor's founders, said she was still reeling from the diagnosis in 2007 when she heard a television report about the slim percentage of funding dedicated solely to her condition.
Corneliussen-James, 61, had worked for quarter-century as an U.S. Air Force intelligence officer. Her cancer diagnosis put her into analyst mode, and she poured over reports and statistics in search of an explanation.
She called 20 cancer groups to ask to donate exclusively to treating metastatic cancer but was rebuffed at each request. Incensed, she called Dr. Danny Welch, then president of the Metastatic Research Society.
Corneliussen-James attended the society's next conference to investigate. She sold all the ribbons she brought with her as the logo for METAvivor: a loop of green and teal to symbolize immortality and healing, superimposed with thin strip a pink, which she debated leaving out.
"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."