Charting path beyond cancer

Seeing a need for it, late-stage patients form support group

June 04, 2008|By Susan Gvozdas | Susan Gvozdas,Special to The Sun

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.

Women with incurable cancer often hold back at meetings because they don't want to depress or frighten other women who are newly diagnosed, Corneliussen-James said. Some groups have gone further, she said, asking late-stage breast cancer patients not to attend their meetings.

She said the Breast Center at the Annapolis hospital assigned her a mentor and gave her a gift bag of information when she was diagnosed with stage III breast cancer in 2004. After a lumpectomy, chemotherapy and radiation, she went into remission. When she was diagnosed with stage IV breast cancer in 2006, there was no mentor or bag waiting for her. Stage IV cancer patients understandably don't have mentors.

"It really jumped out at me," Corneliussen-James said.

The Breast Center was unaware that its late-stage patients needed a specialized support group until Corneliussen-James brought it up, said Barbara Easterling, a registered nurse and executive director of the Breast Center. Easterling said that metastatic breast cancer patients often fall through the cracks because they no longer are dealing with just cancer in the breast. Many times, those patients are seeking out specialists at other medical centers.

"They are kind of out there, without direction," Easterling said.

Easterling said the center is happy that it can now steer late-stage breast cancer patients toward Compass. The medical center has given Corneliussen-James her own direct line, and she handles all the group's donations.

While the group shares information on research and treatments, members try to focus on getting together for coffee, shopping and sightseeing trips. Next week, they are planning to take a trolley through Annapolis.

"We're not a morbid bunch of women by any stretch," said Avis Halberstadt, a Compass member who lives in Annapolis. "We get together, and we laugh, we talk."

Rhonda Rhodes, 50, was diagnosed with stage IV breast cancer in February when doctors found her breast cancer had returned and spread to her brain, lungs, chest wall and kidneys. Now in her second round of chemotherapy, she looks forward to sharing tips and research with other Compass members. They help her cope with maintaining her job and a household that includes two young children.

"It's not a group that feels sorry for itself," Rhodes said. "We seize the day."

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