Tag: Patient Advocacy

Patient Advocacy at ASBrS

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It was an honor to attend the American Society of Breast Surgeons meeting as a patient advocate. I felt welcome from the moment I arrived. The first breast surgeon I met was a past president of ASBrS, Dr. Deanna Attai. I have been interacting with Dr. Attai on Social Media through #bcsm tweet chats but never had the opportunity to meet her in person. We sat in the lobby of the hotel to share a cup of coffee. The first question she asked me was, “Terri, why did you attend the meeting?” I smiled at her because it was the question I wanted to be asked as a patient advocate attending ASBrS. I folded my arms on the table, leaned in as I smiled at Dr. Attai, and answered her question with a question, “Guess who told me about all my options for breast reconstruction?” The smile on her face Continue Reading →

The Latest on BIA-ALCL and What A Patient Advocate Reports to Her Community 

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The Latest on BIA-ALCL and What A Patient Advocate Reports to Her Community As a patient advocate for breast reconstruction I am often asked questions about recent findings and reports in the news. This week I was asked questions about the latest NBC News article, and the same topic reported in other media outlets. Theses stories were on the safety of breast implants and a rare disease, BIA-ALCL, Breast Implant-associated Anaplastic Large Cell Lymphoma. I listened attentively as I watched the nightly news and read articles across other media venues. I immediately thought to myself, this was going to understandably stir concern and controversy in my community. It did. I was asked questions about the reports presented this week in the news media from women who currently have implants or are planning to for breast reconstruction after breast cancer. My immediate concern was to calm their fears and share what I Continue Reading →

5 Things to Share: My Delayed DIEP Flap Breast Reconstruction

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I am often inspired to write while reading blogs from other sites, reading research papers, or after speaking to patients who ask questions about my experience having delayed DIEP flap breast reconstruction. This week is a mix of all three. I saw a post on the Facebook page from the plastic surgeon I chose for my surgery. The title of the blog post read: Patient Reported Outcomes After Immediate and Delayed DIEP Flap Breast Reconstruction. ~ PRMA Plastic Surgery The blog references an evidence-based study from Plastic and Reconstructive Surgery. It states: The BREAST-Q is an universally accepted tool for evaluation of quality of life and satisfaction in breast surgery. The aim of our study was to identify differences in patient-reported outcomes in immediate and delayed reconstruction with DIEP flap.  ~ Plastic Reconstructive Surgery  During conversations as a patient advocate, I speak to women who ask me to describe what my Continue Reading →

Patient Advocacy: Shared Decision Making in Breast Reconstruction

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When does your voice matter in patient advocacy in the shared decision-making conversation of breast reconstruction? The sum of events helps me answer this question in my work as a patient advocate. I have a voice, true. However, my voice only becomes amplified by the support, connections, and personal interaction I make through social media with those interested in this topic; plastic surgeons and patients who have lived the experience. Shared decision making in breast reconstruction after mastectomy means a process the patient and plastic surgeon engage in, resulting in the choice the patient believes is in their best interest. It includes but is not limited to the suggestions made by the plastic surgeon based on skill and years of expertise, being given all options for breast reconstruction, discussing risks and complications, and listening to and respecting the voice of the patient and what they bring to the conversation. This Continue Reading →

Meet my Friend, Patient Advocate & Four-time Breast Cancer Fighter

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This is Terlisa Sheppard. Terlisa is my friend. She is also a patient advocate and four-time breast cancer fighter. Terlisa and I met this past summer at the Project LEAD Institute graduate program along with other amazing patient advocates. I was blessed to see her again in December of 2017 at the San Antonio Breast Cancer Symposium (SABCS) and we put it on our schedule and committed to make this video together. I will visit this blog frequently to listen to her Journey of being a young mother diagnosed with breast cancer and now living daily with the disease. Meet my friend, patient advocate, and four-time breast cancer fighter. Are you inspired? I think you should be, I really do. To know cancer is in your body in various organs and continue to look at life with a blessed, grateful disposition is nothing short of God-given, super-human constitution. I am Continue Reading →

Study of Body Mass Index post DIEP Flap Breast Reconstruction: A Patient Perspective

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I rely on research from evidence based journals I read to understand and share the latest information about breast reconstruction and breast cancer to the community I serve. One of the journals I utilize is Plastic and Reconstructive Surgery: Journal of the American Society of Plastic Surgeons. January is a month many of us focus on health, weight loss, and losing those extra holiday pounds. As a patient advocate who has had autologous, DIEP flap breast reconstruction, I wanted to share my thoughts and perspective from a study of body mass index post DIEP flap breast reconstruction from the December 2017 issue of the Journal : The Impact of Autologous Breast Reconstruction on Body Mass Index Patterns in Breast Cancer Patients: A Propensity-Matched Analysis.  I appreciate the focus of the article. It can be read here from the final statement in the conclusion of the paper: Our findings can be used to Continue Reading →

DIEP flap Education: Boobs in the Bathroom

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DIEP flap education and boobs in the bathroom?  Really? Yes! Really! When a woman has had breast reconstruction, especially when you are using your own tissue, it can be of great benefit to show other women “the goods” when they are contemplating the same surgery. The mere visual may seem a bit comical but let me share with you what I have personally experienced. There is nothing comical about hearing the words, “You have breast cancer”. It is often a mind-bending, confusing Journey for women and men to go through. We talk about it a lot on the Journey Facebook group. We have also discussed, in a half-joking manner, “Yes, I show others my boobs in the bathroom!” When your breasts have been removed after a mastectomy and then rebuilt using your own tissue, it is nothing short of miraculous to many; patient and potential patients alike. Women who have Continue Reading →

A Patient Advocacy Story

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Breast Reconstruction Awarenrss Day 2015, a patient advocacy story, begins with an inspirational moment; a moment that was a true catalyst to a new found purpose in my life. Where was the inspiration? Why would a patient become an advocate and subsequently an affiliate to promote a nationwide campaign for breast reconstruction awareness following a cancer diagnosis and mastectomy? Easy answer! The plastic surgeon I chose to do my DIEP flap surgery and the patient liaison that was my first point of contact at their group WAS my starting point. When something feels right, I move on it. It was my moment of inspiration. I was asked to share my reconstruction surgery experience with other women who were considering the same type of surgery. I wanted to pay it forward and let other women know about this group, their skill, success rate, credentials, compassion and the support of all the Continue Reading →