Tag: Patient Advocacy

Opportunities in Patient Advocacy

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I feel so lucky to meet patient advocates who are passionate about their work in various breast cancer communities. Whether we have met in person at a conference, in training, or online I feel the positive impact of their work daily in my work as a patient advocate. I sat down with two of those advocates in this DiepCFoundation educational channel interview to discuss opportunities in patient advocacy. Alamo Breast Cancer Foundation I met Denise Barlow and Sandra Stewart Stanford in December of 2016 at the San Antonio Breast Cancer Symposium after opening DiepCFoundation earlier that year. They both welcomed me with opened arms and guided me through the full week of sessions inviting me to join the patient advocate meetings each evening. It was through them I learned about patient advocacy training at Project LEAD. The Alamo Breast Cancer Foundation was started by Dale Eastman in late 1992-93-time frame. Continue Reading →

Episode 7: Lobular Breast Cancer

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In episode 7 of the DiepCJourney podcast we are discussing lobular breast cancer, also known as invasive lobular carcinoma (ILC), with Leigh Pate. Lobular breast cancer is the second most commonly diagnosed type of invasive breast cancer. Often an understudied subtype of breast cancer I ask Leigh to join me on the podcast to help our followers understand more about it. Leigh founded the Lobular Breast Cancer Alliance (LBCA) in 2017 and continues to work as a research advocate in the breast cancer and ovarian/fallopian tube cancer community. Leigh and I both have had lobular breast cancer. I have tucked my diagnosis, both of them, away in files and don’t pull them out to often. This is my way of coping with two diagnosis of breast cancer. Connecting with Leigh, precipitated my need to talk about this. Our goal is to explain lobular breast cancer to patients who have it Continue Reading →

Tribal Unity Sends all the Right Messages in Breast Cancer

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You may be familiar with the long running American television series, “Survivor.” The premise of the show is that each team begins on different tribes. At the end, the real benefits and strength of the team are when the separate tribes join together creating one tribal union. Alliances form and tribes forge through adversity. This is when tribal unity sends all the right messages in breast cancer in my corner of the patient advocate world. This is familiar to me in the world of breast cancer, breast surgery, and breast reconstruction. As a patient advocate, I see a variety of platforms on social media helping communities affected by breast cancer. I watch these separate entities support specific biology types of breast cancer, gender specific breast cancer, ethnic specific breast cancer communities, wellness and survivorship, and the various choices made in the decision process for treatment and surgery. They run a Continue Reading →

Episode 18: Breast Cancer, the Patient Voice in Social Media

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Sharing your story as a breast cancer survivor on social media requires authenticity, creativity, vulnerability with keen knowledge of navigating the responsibility of telling stories that benefit the reader. I have learned a lot from my guest on episode 18, breast cancer, and the patient voice in social media with Marie Ennis O’Connor. She guides many breast cancer writers as a social media consultant, keynote speaker, and digital storyteller. Her creative work can be found at Journeying Beyond Breast Cancer. Marie’s work spans the globe, and her impact creating a cross continental family of writers is immeasurable. I am excited to share the summary of the DiepCJourney podcast for her presentation, The Weekly Roundup, on Twitter. How Marie Began to Use her Patient Voice Marie was diagnosed with breast cancer in her early thirties. The two myths she faced and shares with us are: She only knew breast cancer to Continue Reading →

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 →