This year, over 162,000 American women of all ages, races, and ethnicities, are living with metastatic breast cancer—cancer that has spread beyond the breast to other parts of the body, such as bones and the brain. While the five-year survival rate for many of these women is less than 25%, new, aggressive treatment can extend some women’s lives by as many as 8 to 10 years. As a result, metastatic breast cancer (also referred to as stage IV breast cancer or cancer “with mets”) has become as much a chronic illness as it is an end-stage illness. Thus, women with metastatic breast cancer are as much survivors as those millions whose early stage disease has been altogether eliminated. And, according to Johns Hopkins University School of Nursing (JHUSON) associate professor Lillie D. Shockney, RN, BS, MAS; recently retired assistant professor Sharon Olsen, PhD, RN, AOCN, doctoral candidate Mary Paterno, MS, RN, and Johns Hopkins Hospital’s Deborah Stewart, RN, CBCN, BPNC-IC, that is how these thousands of “forgotten survivors” need to be treated and supported [“The forgotten survivor: Supporting women with metastatic breast cancer and their spouses” Journal of Oncology Navigation and Survivorship, July 2011].
Accomplished nurses, Shockney and Stewart—respectively administrative director and nurse navigator at the Johns Hopkins Avon Foundation Breast Center and breast cancer survivors themselves—work one-on-one to improve the quality of life for women with breast cancer. They’ve conducted retreats since 2001 to help early-stage, breast cancer survivors get back to life, work, and love. So, in 2009, when women with metastatic disease asked when they would have a retreat, the response was “Why not?” Shockney and Stewart got to work, creating, convening, and studying specialized two and half day retreats for these patients, an activity they describe as one of the most “exhausting and exhilarating journeys” they have ever taken with their patients.
Participants at the retreats —called Journeys of Courage and Hope—ranged in age from 30s to 80s, across races and ethnicities, and varied educational attainment and income. Despite the difference, the common bond of late stage, metastatic cancer, coupled with a safe, relaxed environment, enabled participants together to share both hopes and fears, to learn from each other and from professionals about coping and survival, to look forward and to be in the presence of others facing the same challenges. Sessions spanned physical activity (e.g. massage, yoga, meditation), discussions of one’s greatest fears, as well as of hope and spirituality. Humor, too, played a role. Following a lighthearted rendition of the “not-so-newly-wed” game,” one retreat participant observed that “for two hours, nobody had cancer.”
The retreats engaged spouses in other ways too. In men-only discussions, husbands gave voice to their distress, worries, and questions: “I wish I could fix her pain” “How will I raise the children alone?” “Will I ever be able to laugh again without feeling guilty?” They got answers from each other and from men who had walked in their shoes; they also learned that there are things caregivers simply cannot fix.
According to Shockney, the “outpouring of emotions at the retreats is particularly potent. Survivors or spouses may arrive very angry; they are able to share that anger or fear in a nonjudgmental environment. And many ultimately come away mellowed, feeling they have new solutions, insights, and encouragement.” Stewart adds that “Participants come away with an understanding that they need to continue to engage in life and with a new appreciation of their own strengths and abilities and those of their spouses.” Both agree that a single word captures the experience: Hope
But the retreats didn’t just benefit participants. They also made clear that the health care community needs to be more responsive to the voices of women with metastatic breast cancer. Stewart says, “As clinicians, we need to understand that these women have the right to define their own quality of life. It’s one thing that cancer shouldn’t take from them. For example, we need to hear and heed a patient when she says that she doesn’t want to trade losing her hair yet again for an extra few weeks or months of life or that it’s time to stop active treatment.”
Shockney recalls the words of a Breast Center volunteer named Rosemary who told other women with metastatic breast cancer “You need to make a choice—you can be living each day with cancer or you can be dying each day with cancer.” The retreats brought that message home to participants. It is a message that Shockney shares with other women facing metastatic breast cancer and their families, reminding them “Stay involved in life. Don’t be afraid to make plans; go out and make memories.” She and Stewart have just convened another retreat which they taped to help educate nurses and doctors about the needs of this special patient and family population.