The Call to be a Voice of Advocacy

I attended the American Society of Breast Surgeons (ASBrS) conference as a patient advocate for the first time in 2019. This year, for the first time, I will be attending as a patient advocate and nonprofit exhibitor. Most often, when surgeons attend conferences, the exhibitor floor means products, services, and tools they can explore to assist with their breast surgery. My attendance as an exhibitor is for the purpose of collaborating with the breast surgeons to provide patient education.

My call to advocacy was answered because I was privileged, unlike some breast cancer patients facing mastectomy. I began my work in advocacy in early 2015 after my successful DIEP flap breast reconstruction. But it began with the consultation at my breast surgeon’s office. She was a strong proponent of the shared decision-making model. The hope is that shared decision-making is standard practice. The reality is it is not always the case. Yes, I was privileged.

My breast surgeon gave me all my options for reconstructive surgery since the best breast cancer surgical choice for me was a double mastectomy after having been diagnosed for a second time, this time in both breasts. She used terms with me like “survival” and “recurrence,” two powerful words breast cancer patients often think about at the time of diagnosis. She backed her statements with evidence-based studies to substantiate the information she provided for me.

The voice to be an advocate for others was fostered by the reconstructive surgeon who performed my breast reconstruction, another strong proponent of the shared decision-making model in health care. His encouragement to open my nonprofit organization in 2016 was a pivotal moment in my career as a long-time educator. I embrace the ongoing opportunity to learn from the surgical and advocacy community. The combined influence of my breast surgeon and plastic reconstructive surgeon emboldens me to continue the work and voice of advocacy for patients on behalf of those who serve the breast cancer community.

I have witnessed the progression of ideas and surgical techniques evolve in the years I have been working as a voice of advocacy. In healthcare, there is a term used called “working in silos.” Simply put, it refers to departments or entities not sharing information. This is far from the intention of any of us, patient advocates or surgeons, who are engaged in assisting those affected by breast cancer. In fact, our intent is to help patients make fully informed decisions that minimize decisional regret over surgical choice during survivorship.

These decisions can include oncoplastic mammoplasty, lumpectomy, mastectomy with or without reconstruction and aesthetic flat closure. I am delighted to be exhibiting next to a representative and strong advocate voice, Kimberly Bowles, from Not Putting on a Shirt, another nonprofit organization and advocate voice in breast surgery options. We are not just the patient advocates. We are the advocate to the surgeon, bringing education back to the patients from the surgeons. I strongly believe that sharing evidence-based information with patients can give them the tools they need to make informed decisions about their surgical care in breast cancer.

I look forward to engaging and vibrant discussions on the exhibit floor and in the halls of the conference at ASBrS this year with surgeons so I can collaborate with you helping to educate patients. The call to be a voice of advocacy is a privilege I am honored to answer. I hope you will stop by and see me at booth #517 to see the education DiepCFoundation provides with you bringing education back to the patients.?