Have you ever been excited and nervous at the same time? I was on January 3,2021. It was an exciting day to publish the first episode of the DiepCJourney Podcast with guest, Dr. Minas Chrysopoulo. A few days in advance of the first published episode, I sent a message telling him I was as nervous as a long-tailed cat in a room full of rocking chairs. Hitting the published button felt scary and exhilarating at the same time. We hope you’ll follow and listen to Episode 1: Breast Reconstruction Advocacy.
After a second breast cancer diagnosis in 2014, Dr. C performed my DIEPflap breast reconstruction in December after a double mastectomy in April of the same year. He not only was the microsurgeon I chose, but he has also become a mentor to me, the voice in the corner, always cheering me on to “keep the momentum going, Terri”.
The Need for Breast Reconstruction Advocacy
The word patient advocate or advocacy was not part of my vocabulary in the spring of 2014. But after a second breast cancer diagnosis the word began to sneak into my vocabulary in an unpretentious way. In the spring of 2014, I was a full time, student. My work was focused on educational leadership, not breast reconstruction patient advocacy. The change happened while healing from my double mastectomy. I applied my M.Ed. research skills to find out more about the types of breast reconstruction available to me and how to find a well-qualified plastic surgeon to perform the surgery.
Throughout the podcast, Dr. C and I reflect on the events leading up to the decision to open the 501c3, DiepCFoundation.org. I was pleased with my choice for breast reconstruction, DIEP flap, and even more delighted with my outcomes and recovery. But I soon realized not all women and men have this same experience. Often times it is because they simply were not aware of all their options. As Dr. C points out in the podcast, access is still an issue for patients, especially if they choose autologous reconstruction like I did, requiring the skill of a microsurgeon. There can be lack of support and education for a number of other reasons. I have been told by women and men they simply did not know what to ask or what they were allowed to ask their surgeon. It became a problem I wanted to tackle.
The Mission of Many
Providing this education and patient empowerment takes a concerted effort by many. For me, the value of opening the nonprofit foundation was to spearhead what I could do as a patient advocate, inviting a variety of patients and healthcare professionals to be part of an educational forum of resource and support. I saw the patient advocate movement gain strength. It made sense, then, for me to apply my lived experience, background in education, and desire to help others to find various methods across social media to provide this much needed education in breast reconstruction.
Dr. C points out the patient empowerment movement is changing the experience not only for patients but also for healthcare providers. We are connected by our stories, our lived experience, and the skill of our providers to improve the process of decision making. This overlying mission is changing us all.
Patient Advocacy and the Breast Advocate App
The Podcast wraps up with a thoughtful account of how and when I found out Dr. C was the Founder of the Breast Advocate App. His overlying mission was similar to mine, combine the patient advocacy voice with evidence-based information and resources to empower with education as part of the shared decision-making process. It has been a delight to watch the growth of the BA app but even more of a joy to work along side Dr. C in a mission to empower and educate patients to make an informed decision.
Episode 1: Breast Reconstruction Advocacy Continues
A goal formulated in late 2020 became a reality with the opening of the DiepCJourney Podcast. Thank you again, Dr. C, for always being the voice in the corner to “keep the momentum going, Terri.” Both of my sons have given me some sound, sage advice. I mention Rich in the podcast and the evening he finally met the man who performed my DIEP flap. Rich gave me great words of wisdom.
Let it evolve Momma because it will.
Richard Coutee