Stage 4 Breast Cancer Survivor Created Group to Fill Void
Dian Corneliussen-James, one of the founding members of METAvivor, said the nonprofit group is working to bolster research on metastasized breast cancer and raise awareness of the fatal disease.
Dian Corneliussen-James clearly remembers heading into surgery for her breast cancer.
She met with a mentor from SOS, Survivors Offering Sympathy. A member of the support group sat with her before the procedure, comforting her, calming her, letting her know what to expect.
They were there as she recuperated. She left the hospital with a big bag of gifts and get-well wishes. They were there to help with follow-up procedures, assuring her that everything was going to be OK.
Unfortunately, CJ, as she’s known to friends and others who have met her through METAvivor, the Stage 4 breast cancer support and research nonprofit group she helped form, she also remembers the day she went in for surgery to have a metastasized breast cancer tumor removed from her right lung.
She was alone. There were no gifts. No mentors.
“I remember thinking, ‘I have fallen off the pink pedestal and landed in a leper colony,’” she said. “They had nothing for Stage 4 patients.”
After her experience, she was inspired to start a support group in Greater Annapolis for those living with Stage 4 breast cancer that would grow into the larger nonprofit group it is today.
She said 30 percent of breast cancer patients see the disease metastasize, becoming fatal. Only 20 percent of Stage 4 patients survive to five years—the median is two to three years, Corneliussen, 60, said.
But the Air Force and government retiree is a bit of an anomaly.
She finished treatment in July 2005 (she still receives injections every four weeks.) And she's beyond her 20 percent shot at five years. And she doesn’t dwell on what could have been.
The bulk of her time is now spent as president of METAvivor. Corneliussen founded the nonprofit group with fellow Stage 4 breast cancer patients Avis Halberstadt, Karen Presswood and Rhonda Rhodes.
Presswood and Rhodes have passed in the past two years.
From its simple beginning as a support group with eight people, METAvivor has grown into a premier organization that has become internationally recognized for its advocacy for and education on Stage 4 breast cancer.
The group also is one of the only in the country that Corneliussen said she’s aware of that provides grant funding for research into Stage 4 breast cancer.
Last year—the first for its grant program—METAvivor provided a $55,000 grant and is preparing to announce the recipient of another $50,000 grant, along with another one for $25,000.
“Our hope is that we can provide two full grants next year,” she said.
She said some researchers have shown some success in making Stage 4 cancer cells dormant, allowing patients to manage the disease.
“But less than 1 percent of the $5 billion raised for cancer research goes to Stage 4,” Corneliussen said.
She said the bulk of the donations to METAvivor have come from donors across the country and even from other countries.
She’s addressed the New York state legislature, prompting talks of designating more funding for Stage 4 research. Corneliussen has traveled to Madrid to present information about METAvivor’s work to a breast cancer conference. She has a similar engagement in November in Lisbon, Portugal.
She also is the driving force behind various fundraisers throughout Greater Annapolis, such as a triathlon in Hillsmere featuring a kayak leg instead of the swim, a local home tour at Christmas, and an upcoming fashion show with David Alexander Spa.
“Trying to get the attention (for Stage 4) is very, very hard,” she said. “The focus for breast cancer is prevention, but prevention is only for people who have never had breast cancer in their lives.”
She said METAvivor is working to shift the culture of breast cancer research and the general conception that those with Stage 4, metastasized breast cancer are a lost cause.
“There is a paranoia about death,” she said. “If you take death away from it and you show that the disease is manageable, it wouldn’t be the scary disease it is today.”