Cate Edwards was 22 when her mom Elizabeth was diagnosed with early-stage breast cancer in 2004. Three years following treatment, the cancer returned and had spread to the bone, putting the Edwards' into a community joined by thousands of other families: the advanced breast cancer community.
"My mom didn't know if she was going to live a few months or 20 years" Cate Edwards told CBSNews.com. "It becomes about not becoming a survivor, but surviving."
About 232,000 women and 2,200 men are expected to be diagnosed with breast cancer in 2013. Those diagnosed with the disease early have treatment options including surgery, radiation and chemotherapy. But about 30 percent of those women may have their cancer return and spread, what's known as metastatic breast cancer.
They face a unique set of challenges and much uncertainty, according to Edwards.
And isolation. October's National Breast Cancer Awareness Month turns the world pink while raising awareness for breast cancer. But, a recent survey of women in the advanced breast cancer community found two-thirds of responders felt left out of the pink movement due to the differences between themselves and early-stage survivors.
"They just feel like no one understand them," Edwards said.
When her mother was diagnosed with early-stage cancer, there was a short-term focus on getting through the treatment course. When she had been diagnosed with advanced breast cancer, the mentality shifted from thinking about the disease to making every day count, she said.
"It was difficult at times, no question," said Edwards. "But my mom was a source of strength herself."
Elizabeth Edwards passed away on Dec. 7, 2010.
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Living with advanced breast cancer is not well-understood outside of families, and loved ones who often act as caregivers need support systems too, according to Edwards.
To raise awareness and connect those in the advanced breast cancer community, she joined the "Count Us, Know Us, Join Us" campaign at www.advancedbreastcancercommunity.org. She urges people with advanced breast cancer and their families, friends and supporters to sign up and see they are not alone. The campaign is sponsored by Novartis Oncology.