The purpose of this Priority Report is to raise awareness of metastatic breast cancer (MBC), identify some of the obstacles women living with this disease face, and understand how we as a community can address the unique informational and support needs of these women. The narrative is told primarily by individuals involved with the support of women with MBC.
Little did former First Lady Betty Ford, wife of the late President Gerald Ford, know she would start a revolution of sorts by discussing breast cancer so openly and frankly in public back in 1974.
By speaking forthrightly about her disease and her subsequent radical mastectomy, Mrs. Ford, who turned 90 in April, hoped to raise awareness about the disease and the importance of breast exams, and put a face on what was once a woman’s disease, spoken about in hushed, embarrassed tones. Seventeen years later, Mrs. Ford’s efforts had evolved into one of the most successful brand symbols of all time: the pink ribbon. Although many ribbons of various shapes and sizes had existed before—from yellow ribbons tied on trees in support of soldiers overseas to red ribbons on the lapels of celebrities against AIDS in the late 1990s— pink ribbons replaced pink visors at the 1991 annual Susan G. Komen “Race for the Cure,” and a movement began. Today, the pink ribbon’s symbol and color are still a successful representation of the fi ght against breast cancer.
After more than one-quarter century of the pink ribbon movement, however, some wish the pink ribbon would lengthen its reach and wrap itself around more women and families whose lives have been changed by breast cancer, namely, those with MBC.
Breast cancer remains the leading cause of cancer death among women worldwide—close to 500,000 women will die of the disease annually, and an estimated 1.3 million new cases will be diagnosed internationally.1
In the US, an estimated 182,460 new cases of breast cancer are expected to occur among women in 2008,2 and 30% of these cases will eventually develop into metastatic disease.3
Yet despite these numbers, some women with MBC say they feel invisible compared to women with less advanced forms of breast cancer.
“When we are remembered, we are recognized as losing the battle,” one patient with MBC poignantly says. “We are what the pink ribbon crowd wants to forget, because we are the painful reminders of what can happen.”
Feelings of isolation can become particularly intense in October (Breast Cancer Awareness Month in some countries). Women with MBC say the media prefers to cover “happy endings,” stories of women detecting breast cancer early, having the tumor removed, and going on their way. They may be right.
“Every October, the pink ribbons come out, and every October, women with metastatic disease are not spoken about in a very tailored or personalized manner,” said Elyse Caplan, MA, Education Director of Living Beyond Breast Cancer (LBBC),
a patient advocacy organization headquartered in Haverford, Pennsylvania. Women with MBC want information and resources that speak to the challenges of their stage of disease. Why is it so hard, they wonder, to find survival statistics? What are their clinical trial options? How do they navigate an often confusing and confl icting sea of information?
Breast cancer professionals from all disciplines are trying to answer these questions, starting with the basics: identifying the needs and wants of women with MBC; developing ways for those most closely involved with these women (doctors, nurses, caregivers) to meet those needs and wants; conveying information more cohesively to both medical professionals and patients; and changing the perception of clinical trials—from one of a “last chance” to one of an additional tool in living with the disease.Women with Metastatic Breast Cancer
In 2006, LBBC conducted a U.S.-based “Needs Assessment Survey,” which concentrated on learning the needs of women with MBC with a focus on how the women gathered information and how they applied it to their lives.4
Ms. Caplan expressed surprise at the number of women who responded to the survey and believes it spoke volumes about the subject.
“Much to our surprise, even though we did pare it down to only 64 questions, it still took about 40 minutes to complete,” said Ms. Caplan. “We had expected about 200 respondents; we had well over 600 (online). So that proved my personal point that, if you ask women with MBC what they want, they will take the time to tell you.” The responses, according to Ms. Caplan, are testaments to “isolation, feeling alone, and the need to have their voices heard.”