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 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 go to www.advancedbreastcancercommunity.com