Finding Each Other
Metastatic Breast Cancer Support Group
They call themselves members of “the lost group” of breast cancer patients. They often find themselves alone, with few who understand their dire circumstances. They are women living with advanced or metastatic breast cancer.
Dian “CJ” Corneliussen-James of Annapolis was diagnosed with metastatic breast cancer in 2006, about two years after her initial breast cancer diagnosis. A dynamic, ebullient woman of 56, she had attended support groups for breast cancer survivors.
But when her cancer spread, she saw the need for special support for those dealing with metastases to the bones, lung, liver, brain, and other areas of the body. “Our needs are different from women diagnosed with localized breast cancer,” she said. “We are not going to be cured of this disease. We must battle metastatic breast cancer every day for the rest of our lives.”
According to National Cancer Institute statistics, of the nearly 180,000 women and 1,800 men diagnosed annually with breast cancer, approximately six percent are diagnosed with metastatic cancer, classified as stage IV. Despite the highly touted increase in breast cancer survival rates, stage IV patients are described in medical terms as having “terminal disease,” a fact that grates on the nerves of these individuals.
CJ, a retired Air Force lieutenant colonel, looked to AAMC’s Survivors Offering Support breast cancer support group for start-up advice and then spent close to a year planning a support group called Compass specifically for women with stage IV breast cancer. She teamed up with patient Pam Ellinghausen, whom she credits with creating the “great name and logo.”
With the help of the AAMC Breast Center and the encouragement of director Barbara Easterling and breast surgeon and medical director Lorraine Tafra, M.D., “Compass” was born. The women (men with stage IV breast cancer are also welcome) meet bi-monthly at the Sajak Pavilion to hear prominent guest speakers. Recently, Leisha A. Emens, M.D., Ph.D., a breast cancer researcher from The Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, discussed her work developing and testing vaccination strategies for breast cancer treatment.
The women meet casually at local coffee shops and have monthly outings “just for fun.” CJ, as she prefers to be called, describes Compass as “a unique support group designed to help women adapt, face the challenges ahead, and continue to find enjoyment in life.”
These women know that, barring a medical breakthrough, the disease is expected one day to take their lives. They take courage from one another and support one another through debilitating treatments, and they face this terrible disease with stoicism, determination, and a good amount of wry humor. They also talk about books, movies, recipes, and their families.
“There is nothing like being with a circle of new friends who know exactly what you’re going through,” CJ said.
For more information about the AAMC Compass Support Group and a schedule of events, contact Dian “CJ” Corneliussen-James at 443-481-5357 or firstname.lastname@example.org. To receive a brochure on the AAMC Breast Center, call 443-481-4000.