Becoming Your Own Best Advocate and Building a Dream Team to Thrive

Patients with breast cancer must be their own best advocates, building their own personal dream team to thrive throughout their journey, Stephanie Seban said in her keynote address at CURE’s Educated Patient Breast Cancer Summit.

“So what does being your own advocate entail? Let me start by saying this: You're already doing it,” she said. “The fact that you're here today, sitting in this very room means you're already playing an active role and being your own advocate.”

Seban gave an example of the statistics she was often told when diagnosed with metastatic breast cancer, including:

• One in five women with their diagnosis will live to see five years.
• A woman with a metastatic breast cancer diagnosis lives on average for 36 months
• “We'll keep you alive as long as we can with the drugs that we have.”

“If you or anyone you know has been diagnosed with metastatic breast cancer, then these daunting statements and statistics may sound all too familiar,” she said to the crowd of patients, caregivers, health care professionals and advocates. “I wasn't buying into the numbers or the death sentence that was staring me down. And I certainly wasn't going to take a backseat when it came to my cancer care. I made an oath to myself from the very start that I would be a very active participant on my healing journey, and I would do anything and everything in my power to defy the odds. That was over nine years ago, and as of last February, I celebrated my 40th birthday.”

After receiving the wrong results from her original pathology report, Seban was being treated for years on the wrong therapies for her subtype of breast cancer. As a result, her first piece of advice for others is to get familiar with their diagnosis, like the various treatment options for specific subtypes of the disease, the drugs a patient is receiving and their specific function, as well as what drugs are on the horizon in the pipeline.

“The more you know, the more you will feel a bit more in control and most importantly, empowered,” Seban said.

To become more familiar with one’s diagnosis, she recommends for other patients to join online support communities, find support groups and meetups and attend conferences or online courses.

Next, she reminded the audience that it is key to ask questions at appointments. Moreover, it is helpful to bring a partner, take notes or record the conversation.

“I have been a non-stop advocate on my long journey, always asking questions, researching anything and everything I can get my hands,” Seban said. I sought second, third, sometimes even fourth opinions, seeking outside resources and help…It is so crucial to jump into the driver's seat when it comes to treating your cancer.”

As her own advocate, Seban urged the audience to get a second opinion when necessary.

“While having two options may seem even more confusing and overwhelming, having the choice to decide which feels right and which doctor's opinion and treatment plan resonates with you is so empowering and can be life changing, and even in my case, lifesaving,” she said.

Seban ended with a quote she likes: “You are the CEO of your life. Hire and fire accordingly.”

“I encourage you to become the CEO of your health and create your own personal, unique dream team. Being your own advocate means finding the right people you can trust to help you heal and thrive,” she added. “It means speaking up for yourself when something doesn't feel right. It's about taking the time to ask yourself what you need to heal and above all else, believing in your outcome and potential to heal, regardless of statistics, regardless of what anyone says, because I believe and know that anything is possible.”