Empowering Patients and Advocates Through Breast Cancer Education

Brielle Urciuoli

When Dale Eastman was diagnosed with breast cancer 27 years ago, needless to say, she was overwhelmed. And living in the age before smartphones and widespread Internet use – where information is literally at people’s fingertips on a moment’s notice – she was making treatment decisions without a comprehensive understanding.

“I had to make decisions about my life in three days, and didn't even know what was going on,” she said in an interview with CURE at the 2017 San Antonio Breast Cancer Symposium (SABCS).

Hoping that other women did not have to go through what she went through, in 1993 she co-founded the Alamo Breast Cancer Foundation (ABCF), a grassroots organization that helps patient advocates become educated on the disease – ultimately leading to more informed treatment decisions.

For the past two decades, the ABCF has been funding patient advocates from around the nation to attend the annual SABCS conference. Doing so allows individuals from different constituencies and advocacy organizations to bring back important information on the latest research, trends and FDA approvals in the breast cancer space.

To apply for a scholarship to attend SABCS, the ABCF prefers that advocates go through the National Breast Cancer Coalition’s “Project LEAD” courses, which provide scientific training on the basics of breast cancer. Or, as a substitute, advocates can also have an educational or career background in science.

The SABCS scholarship program started in 1998 with only 14 advocates. This year, the ABCF doubled that number, sending 30 advocates to SABCS. Once at the conference, the advocates must attend presentations on breast cancer “hot topics” assigned by the ABCF, and then write an article about them. Hot topics include breakthrough research and new treatment strategies for all different types of breast cancer.

Advocates are also invited to join an evening panel, where recent breakthroughs are discussed with oncologists, researchers and other oncology professionals.

At the end of the day, SABCS attendees can head home armed with the knowledge that can help them – and the patients they work with – make informed and quality decisions regarding their care. This is especially important considering that most patients do not get much time with their oncologists at appointments, during which they may have questions.

“What I’m hearing from patients is that the doctors are not spending much time with them explaining things,” Eastman said. “Patients may be nervous and afraid to ask questions.”

But thanks to the ABCF and their SABCS scholarship program, many patients no longer need to feel nervous or apprehensive about their decisions. Looking forward, Eastman hopes that the ABCF can continue to help patients and advocates be empowered.
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