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.”
The Molecular Barcode of Cancer — Targeting Treatment to Patient• Incorporating Technology and DNA Testing into Clinical Trials• Participating in Genetic Research• An Active Participant in Breast Cancer Research and in Life• Participating in Metastatic Breast Cancer Research
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.”