When Pam Ellinghausen received her breast cancer diagnosis last summer, the devastating news didn't end there. Doctors said her disease was incurable: It had seeped into her bloodstream and had spread to her neck bones, liver, spine and one of her lungs.
Ellinghausen, 51, of Annapolis struggled with her prognosis as a stage IV cancer patient. Only 29 percent of those in that catergory live more than five years.
Then she walked into the Breast Center at Anne Arundel Medical Center one day and met Dian "CJ" Corneliussen-James, a volunteer and fellow stage IV patient, who was planning a support group for women like themselves.
By November, Ellinghausen had developed a name for the group, Compass, and a logo, and the two started advertising for members. The group, which now has 19 members, will celebrate its six-month anniversary on Corneliussen-James' boat.
The name crystallizes where the members are. They don't know in which direction their cancer will spread, and they are still navigating uncharted waters.
Ellinghausen said Compass was the only place she could turn when she learned about three weeks ago that her cancer had spread to her brain. Her group could instantly read the pain and panic in her eyes.
"It's just knowing that someone else knows," she said. "They're there with empathy and understanding and tenderness."
Compass' mission is not only to shore up women who are coping with the disease, but also to help fund research into drugs that will help late-stage breast cancer patients. The women hope metastatic breast cancer, the kind that has metastasized or spread to other organs, will be treated as a chronic condition that can be controlled by a cocktail of drugs, much the way those who are HIV-positive are treated, Corneliussen-James said.
Compass has developed a tri-color ribbon pin - teal, light green and pink - that it hopes will be distributed nationwide to raise awareness and money for a metastatic cancer research fund. About 40,000 women and men die each year of metastatic breast cancer, according to the National Cancer Institute.
Support groups for women with late-stage breast cancer are rare. A handful exist nationwide, said Corneliussen-James, a 57-year-old retired Air Force lieutenant colonel. A primary reason is that few of the members survive to run them, she said.
Another reason is that many don't realize that late-stage patients feel shut out by many breast cancer support groups, Corneliussen-James said.
