A Day of Metastatic Awareness
Published in the Fall 2013 issue of Insights on Metastatic Breast Cancer
Every October, items on shelves and in the aisles of retail stores abound with pink ribbon logos. Charities host events and programs to fundraise and raise awareness. For these 31 days, the spotlight shines on women and their experiences with breast cancer.
Though Breast Cancer Awareness Month draws public attention to the disease, Dikla Benzeevi, 43, of Los Angeles, Calif., feels as if the pink ribbon-saturated month slants toward bringing awareness to early-stage breast cancer and detection. She has lived with metastatic disease for more than 10 years.
“Events, promotions and commercials in October act as if we’ve overcome breast cancer, but we haven’t,” Dikla says. “It makes anyone with metastatic breast cancer feel like a failure of the campaign.”
Debra Strauss, 61, of Melrose Park, Pa., who has lived with metastatic breast cancer for 21 years, shares similar frustrations.
“Breast cancer awareness is wonderful and we are living longer, but we’re still getting it and still dying from it,” Debra says.
To help women like Dikla and Debra feel included in Breast Cancer Awareness Month,and to bring much needed awareness to metastatic disease, advocates campaigned to establish October 13 as Metastatic Breast Cancer Awareness Day.
Awareness Day Beginnings
According to the American Cancer Society, nearly 40,000 Americans will die from breast cancer in 2013. Experts estimate that about 30 percent of early-stage breast cancers will metastasize and that the average life expectancy of those affected by metastatic disease is 2 – 3 years.
Kelly Lange, president of METAvivor, an organization that raises funds for metastatic breast cancer research, thinks more education is needed throughout the month.
“Everyone is aware of breast cancer,” Kelly says. “What people don’t know, or choose not to know, are the uncomfortable facts about breast cancer.”
Metastatic Breast Cancer Network (MBCN), an advocacy organization for those affected by the disease, spearheaded Metastatic Breast Cancer Awareness Day to shed light on these facts.
In 2007, MBCN asked its supporters to contact their local government officials to request they dedicate October 13 Metastatic Breast Cancer Awareness Day.
By 2008, officials in 25 cities and seven states signed proclamations designating Metastatic Breast Cancer Awareness Day.
Living Beyond Breast Cancer made sure Philadelphia, Pa., was among those cities.
“We saw the importance of acknowledging metastatic breast cancer during Breast Cancer Awareness Month so that would bring more visibility to those diagnosed and living with metastatic disease,”says Elyse Spatz Caplan, MA, LBBC’s director of programs and partnerships. “We thought it made sense to appeal to Mayor Michael Nutter, so we did and he signed the proclamation.”
In 2009, The number of cities and states designating MBC Awareness Day grew, but the major development that year was the national proclamation introduced by Rep. Rosa DeLauro (D-Connecticut) and Sen. Evan Bayh (D-Indiana). Both congresspersons were approached by MBCN leaders, such as Shirley Mertz, the organization’s president.
“We had a significant number of supporters in both chambers until finally, in October, we received notice that both the Senate and the House had unanimously passed the resolutions,” Shirley says. “We felt like we accomplished a lot.”
Silent Voices and Beyond
Long before Metastatic Breast Cancer Awareness Day, LBBC offered an annual October webinar series, conference workshops and a helpline matching service for women with metastatic disease. In 2005, LBBC created a 64-question needs assessment survey with the goal of expanding our resources for women with metastatic breast cancer.
“LBBC feels it is important to raise public awareness that not all breast cancers are alike, and stage 4 breast cancer is a serious diagnosis that requires tailored information and support,” Elyse says.
The survey results were published in Silent Voices, a report written by LBBC consultants Musa Mayer, MS, MFA and Susan E. Grober, PhD. The data obtained from the 618 respondents covered topics ranging from the role of information and support in the lives of women living with metastatic disease to the availability of services and resources.
Musa, an author, breast cancer advocate and founder of the website AdvancedBC.org, says it was the first ever large-scale needs assessment of the metastatic breast cancer population.
“In the years since, Silent Voices served as a basis and inspiration for much subsequent research, which is very gratifying,” Musa says. “The information it gave LBBC about the kinds of services women were interested in and could benefit from was extremely useful.”
Silent Voices generated such high interest that it was selected as one of two best abstract oral presentations for the first Advanced Breast Cancer International Consensus Conference (ABC1), in Lisbon, Portugal in 2011.
It was also instrumental in the development of several programs and resources at LBBC, among them the Metastatic Breast Cancer Series Guides to Understanding Breast Cancer and the Annual Conference for Women Living With Metastatic Breast Cancer. Held in Philadelphia, Pa., each spring, the conference is one of two annual conferences for metastatic breast cancer in the United States.
Since its inception, Pat Biedermann, 56,of Warminister, Pa., thinks LBBC’s conference has built more awareness and helped women with metastatic disease find a sense of community and hope.
“At this past conference, the audience members were asked how long we’ve been living with metastatic disease,” says Pat, who has had metastatic breast cancer since 2006. “One woman said she’d been living with her metastases for about 20 years. Everyone in the room was in awe.”
Caryn Kaplan, 53, of Holland, Pa., diagnosed with advanced disease in 2004, shared similar feelings.
“When you go to those conferences and look around,you see yourself in everybody,” Caryn says.
Dikla,whose first LBBC event was the 2004 Conference for Young Women (C4YW), is so impressed with LBBC’s programming that she promotes content and organizes large groups of 20 – 40 women from California to go together to C4YW and LBBC’s conference for women living with metastatic breast cancer.
“The organization is warm and inviting and takes a well-rounded approach to providing support and awareness for the metastatic breast cancer community,” Dikla says.
Furthering Awareness: October 13 and Year-Round
Dian (CJ) Corneliussen-James, founder and director of advocacy at METAvivor,says the organization observes and celebrates MBC Awareness Day through blog and social media promotion, and by getting media coverage in the Annapolis, Md. area.
LBBC has no formal program for the day, but it does promote October 13 and awareness of metastatic disease through its online channels, in addition to offering a two-part metastatic breast cancer webinar series that month.
Shirley says MBCN offers resources for supporting MBC Awareness Day activities and events on mbcn.org. Their goal is to bring national broadcast and print media attention to this day. She says people can participate in MBC Awareness Day by contacting their local government leaders about proclamations and encouraging their local breast cancer centers and organizations to hold events.
Though most women with metastatic disease see Metastatic Breast Cancer Awareness Day favorably, some women either don’t know about the day or think awareness must go beyond one day.
“There’s still a big void in awareness, resources and support for metastatic breast cancer,” Caryn says. “I searched for a support group for years until I discovered LBBC.”
The purpose of MBC Awareness Day is to include the experiences of women with metastatic disease in Breast Cancer Awareness Month, but metastasis needs to be discussed every day, Shirley stresses. “We still don’t know what causes metastasis to occur and until we answer that question, we’re not going to be able to prevent it or keep women from dying of the disease.”
Dikla points out that women with metastatic breast cancer have come a long way in making their voices heard since she was first diagnosed. This is partially due to increased awareness of the disease through the observance of October 13 and through other messaging and programs.
“I’m very happy with all the increased resources out there for women with metastatic disease, and I just want the nation as a whole to know that although it’s still a serious illness, it can still be lived well,” Dikla says. “We must continue to show that we are also survivors, thrivers and doing our best to live a full life.”
Get more information and resources on metastatic breast cancer. Visit lbbc.org/events to download our Metastatic Breast Cancer Series guides at lbbc.org/guides.