NEW ORLEANS -- They are women who say they have been forgotten in the fight to beat breast cancer. And now they want others with advanced breast cancer to know they have support by sharing their perspective.
When you think of breast cancer advocates, you think of pink ribbons, walks and fundraisers for research. You see survivors reminding you to get yearly mammograms and do self exams, so you can find it early and beat it too. But a new survey finds there's another side, women living with advanced breast cancer (ABC), cancer that has spread to other parts of the body and they feel alone.
"It's an ongoing disease where you are in treatment for the remainder of your life. Your life is considerably shortened and it's a story that is not viewed very positively," said CJ Corneliussen-James, an advanced breast cancer patient and advocate. "The breast cancer community likes to show a lot of survivors and happy, cheerful people who are doing very well, and we simply don't fit that profile. And I think in this country where everything is focused on the positive, we're just not the story they want to portray."
A new global survey of women with advance breast cancer finds that more than half say it's hurt their marriage, and that it's hard to find support groups. Nearly half say support from loved ones wanes over time, and it's hard to find helpful information. And more than three-quarters say they are actively looking for information on their own.
But now there is a new resources for these women.
"To help the community, the metastatic community, actually have a voice out there, they are giving us the opportunity to speak out, to say where our issues are, where our problems are, to put that out in the public," said Corneliussen-James.
Survivors, now advocates, say they should ask questions about their needs and stay supportive long term.
"They need to be present. They need to ask people living with advanced breast cancer, 'What would be helpful to you? What would be meaningful?' You know, one day it might be helping with errands, you know, buying groceries, providing a meal. Another day it could be something else," said Elyse Spatz Caplan, a survivor and Advocate.
For more on the global survey and resources, click here
More About Elyse Spatz Caplan, Advocate:
Elyse joined Living Beyond Breast Cancer (LBBC) in 2000 and currently oversees LBBC’s educational programming for breast cancer information and awareness, including large-scale conferences and teleconferences, the Survivors’ Helpline, written and online publications, networking programs and workshops and trainings for healthcare professionals. She also works with other organizations to form partnerships that will extend the reach and depth of LBBC’s services. Previously Elyse served as program coordinator for breast cancer clinical trials at Albert Einstein Medical Center in Philadelphia and as a consumer reviewer for the Department of Defense Breast Cancer Research Program several times. Elyse was diagnosed and treated for breast cancer in 1991 and is well known for her compassion and advocacy on behalf of all women and families affected by breast cancer. In 2009, she received LBBC’s Founder’s Award for her outstanding professional contributions to educating and supporting women affected by breast cancer.
More About Dian “CJ” M. Corneliussen-James, Patient and Advocate:
Diagnosed with metastatic breast cancer to the lung in 2006, "CJ” retired from the Air Force in 2003 after serving 24 years as an intelligence officer. She then continued to work for the federal government in a civilian capacity until 2007 when complications from metastatic breast cancer cut her career short. CJ’s positions included, amongst others, monitoring and analyzing Soviet satellite activity during the Cold War, supporting airlift operations for Operation JUST CAUSE in Panama and Operation DESERT STORM in Iraq, serving as the intelligence lead on the Joint Chiefs of Staff for the Somalia Conflict, and coordinating intelligence activities of 11 nations for NATO crisis intervention. CJ and her husband Rob, a retired Air Force pilot and Vietnam War veteran (OV-10 forward air controller), live in Annapolis, Maryland.