Advocates for Women with Breast Cancer

In any big fight it helps to have someone in your corner and when it comes to breast cancer you want someone like Elyse Spatz Caplan and the people at Living Beyond Breast Cancer.

Elyse, who herself was diagnosed and treated for breast cancer in 1991, oversees educational programming for Living Beyond Breast Cancer, a nonprofit, that assists women newly diagnosed with, in treatment for, or recovering from breast cancer.

The organization’s purpose is to advocate and support women with breast cancer to ensure they have the best quality of life they can have while battling the disease. Living Beyond Breast Cancer sponsors three large national conferences each year. They organize teleconferences, put out targeted publications on treatment and diagnosis and have programs for women of color.

For women facing the daunting diagnosis of metastatic breast cancer, however – where the future is so unsure – it can be difficult simply dealing with the fear, anxiety, anger and guilt that often accompany a diagnosis and it can be hard to figure out the best treatment, said Elsye.
This is where Living Beyond Breast Cancer can help.
“All of us here try to help women become better self-advocates so that they get the care they need,” she said. “A big part of what I do is get the information they need from their health care provider so they can make informed decisions for their wellbeing.”

Because metastatic breast cancer isn’t curable, women with the diagnosis sometimes feel distanced from the broader breast cancer community.

“We’ve surveyed hundreds and hundreds of women over the years asking them what they need and want, and it’s pretty accurate that they sometimes feel marginalized because they represent a smaller subset of all women with breast cancer.”

For the majority of women with breast cancer, the diagnosis is made early, they receive some sort of treatment and they move into recovery. Breast cancer doesn’t define their everyday life.

For women with metastatic breast cancer, their narrative is different. They have to come to terms with the idea that they’ll be undergoing some sort of treatment for the rest of their lives. Living Beyond Breast Cancer tries to help them with the personal side of the diagnosis – how to tell family and friends, figuring out health insurance issues or whether to keep working – as well as treatment options.

“The women newly diagnosed with metastatic breast cancer who come to our organization tend to be information seekers,” said Elyse. “They are hungry for information and want to learn as much as possible. We want them to feel armed with the information they need so they can ask the right questions and get the best possible treatment with the least amount of side effects.”

Sometimes that also includes information about new treatments in the pipeline or promising clinical trials. Earlier this year 23andMe and Genentech launched an online study of metastatic breast cancer to learn more about how genes influence a person’s response to treatment with bevacizumab, also known as Avastin ®. Living Beyond Breast Cancer is helping with the study as are our other partners including the Avon Foundation for Women, BreastCancer.Org, the Metastatic Breast Cancer Network, the Triple Negative Breast Cancer Foundation, and Cancer Support.

“Many, many, many women want to know as much as they can about their cancer,” said Elyse. “It’s not just about themselves – they (also) worry about their family members – and if there is any genetic component that can be learned, these women … want to know. It might not be useful for them but it could be useful for other women in the future.”