Tag: Patient Advocacy

Episode 6: Living Flat after Breast Cancer

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Juliet Fitzpatrick is a breast cancer survivor and patient advocate from the U.K. who chose aesthetic flat closure  after breast cancer. She writes about her experience at Blooming Cancer, Living Flat and Recovery after Breast Cancer. In Episode 6: Living Flat after Breast Cancer, on the DiepCJourney podcast Juliet and I chat about her decision to remain flat. She asked a lot of questions and did her research after her breast cancer diagnosis before making this choice. We chat about prosthesis, support groups, blogging, and of course, our combined interest in gardening. These are all on the list of things Juliet is doing since her diagnosis and through her continued recovery, finding the simple passions in life that are important to her. The Breast Cancer Diagnosis Juliet was diagnosed with breast cancer in her left breast after having the second routine mammogram she ever had in her life. She was Continue Reading →

Episode 12: Patient Advocacy and Health Disparities

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Roberta Albany is a formidable breast cancer patient advocate and spokesperson for health disparities. Her work with Living Beyond Breast Cancer and in her own community at Cancer in the Know has gained her great respect and why I am excited to interview this friend and colleague in the breast cancer space for Episode 12: Patient Advocacy and Health Disparities for the DiepCJourney Podcast.  The Making of a Patient Advocate Roberta did not set out to be a spokesperson and patient advocate for the breast cancer community. Her diagnosis defined her role and lead her to this work. She describes her experience with the diagnosis she received in October of 2013. Bobbi found a lump while training for a half marathon with her running group, Black Girls Run. She could not remember if she had done her monthly self-breast exam. She recalls her breast had been bothering her, especially the left side. Upon doing her Continue Reading →

Episode 1: Breast Reconstruction Advocacy

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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 Continue Reading →

The Woman Behind the Mask: Coronavirus

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This is the third week I am writing my weekly blog on the topic of the coronavirus. The rapidly evolving events of this global pandemic have caused staggering changes in statistics. We seem to grapple daily with how to deal with the spread of the virus. Wearing a face mask was the most visible symbol coming out of Wuhan, China where the coronavirus began in late December. At the beginning of March here in America, the consensus was not to wear a mask in public. Now in the first days of April, a month later, we are seeing a flood of masks being worn in America. A movement has begun to make homemade masks. This blog is dedicated to a friend, the woman behind the mask, and why she began making them during the coronavirus. Why We Transitioned from No Mask to Wearing Masks During the Coronovirus The growth of Continue Reading →

A Simple Note of Gratitude

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I was raised to have a grateful heart. I have come to appreciate this value my parents taught me. They modeled the importance of expressing gratitude frequently with friends, family, and even strangers. Mom and Dad always said gratitude should be given freely from the heart, expecting nothing in return. I dedicate this blog to an individual I have known for five years. I encourage the reader to take the time to acknowledge those in your life who have made a difference, large or small, either publicly or privately with a simple note of gratitude from your heart. Moments in life are sweet and precious, tenuous and unpredictable. We don’t always know the direction our lives will take. There are the planners and the gypsies. I have always considered myself a planner with a bit of gypsy spirit. A plan I put in place in 2014 was to complete my Continue Reading →

DiepCFoundation attends the GRYT Virtual Cancer Conference

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I have attended a number of conferences as a patient advocate since opening DiepCFoundation in 2016. Traveling takes time and financial resources. I am happy to share with you a virtual conference you can attend from the comfort of your home. Come with me as DiepCFoundation attends The GRYT Virtual Cancer Conference held Saturday, October 5th, 2019. How to Participate in the GRYT Virtual Cancer Conference The conference will be “open” from 8am-9pm Eastern Standard Time. During this time, you can listen to a variety of speakers and attend breakout sessions from a number of organizations across the cancer community. You can also visit the Exhibit Hall to interact one on one with the hosts of the virtual booths. They will be available during various times of the day to answer questions from participants. Ongoing Resources after the GRYT Virtual Cancer Conference There is an added advantage and ongoing resources Continue Reading →

Patient Advocacy at Plastic Surgery the Meeting

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Preparations begin for the fourth year in a row for me to attend PSTM, Plastic Surgery the Meeting in San Diego. This is the annual national conference of plastic surgeons both nationally and internationally to present the latest in plastic surgery techniques. It includes all aspects of plastic surgery, including aesthetic and reconstructive practices. My patient advocacy at Plastic Surgery the Meeting will focus on breast reconstruction. The Value of Social Media and Patient Advocacy at Plastic Surgery the Meeting The first year I attended I was the tenderfoot, the novice, wandering the expansive convention center in downtown Los Angeles not even knowing the layout, what sessions I could attend, or the flow of the conference. I opened my nonprofit, DIEPCFoundation.org the month before I attended my first PSTM in September of 2016. Many attendees did not know who I was. However, they recognized me because of my presence on Continue Reading →

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 →