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.