Tag: Patient Advocacy

How to Host a Breast Reconstruction Community Gathering

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I want to extend a note of gratitude to the members of the DiepCJourney private Facebook page for their inspiration writing this blog, how to host a breast reconstruction community gathering. For the readers, this is a community of learning, support, and sharing. I began “The Journey” Facebook group in 2015 before starting my nonprofit, DiepCFoundation. Now, this community has become an integral part of the Foundation work. I am inspired daily by their curiosity about breast reconstruction surgery, support for each other, and the friendships made along the way. You can see on the Advocacy page I recently held a community gathering of local Journey members. I want to share some tips on how to host your own breast reconstruction community gathering. Tip #1 for you Breast Reconstruction Community Gathering Ask yourself why you are having it. What purpose do you want to accomplish? It might be for the Continue Reading →

The Rewards and Risks of Traveling for Patient Advocacy

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Let’s dispense with the not so good news first. It is far less than the good news I will write about regarding the rewards and risks of traveling for patient advocacy. The Risks of Traveling for Patient Advocacy Patient advocates I know go into this work with their eyes wide open when they travel to conferences or events for their work. We know what can and sometimes does happen. I wanted to talk about these first because they are short-lived risks. The fallout from any of the above items passes in a brief time. We deal with them as they happen knowing we will return to our advocacy work in no time because of dealing with any of the above-mentioned events. The Rewards of Traveling for Patient Advocacy This is the real magic sauce of being a patient advocate and traveling on behalf of the communities we serve. My work Continue Reading →

Microsoft Give, Breast Cancer, Our True Outreach and Influence

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Five years ago, I began making yearly presentations at Microsoft in Redmond, Washington for their volunteer days known as Microsoft Give. Give days are part of their corporate responsibility when employees share time, donations, and skill. It was a sunny day in the Pacific Northwest as I rolled into the massive new parking lot of the Microsoft campus in Redmond in mid-October of 2023. My car was loaded with care package items the Microsoft team would be assembling after I presented my talk entitled, “Microsoft Give, Breast Cancer, Our True Outreach and Influence”. From their website this phrase could not have been more accurate the day I was there. Microsoft employees are passionate about giving time, money, and skills to address the issues facing our world. Microsoft Corporate Social Responsibility Breast Cancer Call to Action at Microsoft Give Day What is the issue facing our world attendees would be helping Continue Reading →

Cancer Survivors Day 2023

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I did not title this blog “National Cancer Survivors Day” for one reason. Cancer is an international disease. How it is treated, the access to care, the stories of cancer survivors are global. We should celebrate every cancer survivor around the world, every day. I am glad there is one day set aside to honor us and bring awareness to what being a cancer survivor is. I salute all of us this year on Cancer Survivors Day 2023. Living “With a History of Cancer” Many are confused by the word ‘survivor’, but I feel this is a well-defined statement. There is a website dedicated to Cancer Survivors Day. This is the statement from their website. According to the National Cancer Survivors Day Foundation, administrator for the celebration, “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.” National Cancer Continue Reading →

Patient Advocacy in San Antonio

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I am sitting in my office looking out the window at softly falling snow. The cold temperatures of winter have settled in. It is a great day to reflect while sipping on a cup of warm tea after a week at the conference followed by a week spent with family. It is a strong finish wrapping up 2022 and patient advocacy in San Antonio. Patient Advocacy Focus at SABCS The hashtag #SABCS2022 was seen on Instagram, Twitter, and LinkedIn during the first week of December. This was my third time attending the San Antonio Breast Cancer Symposium conference. I was an active part of the Alamo Breast Cancer Foundation (ABCF) Patient Advocacy Program this year. It required a great deal of planning and preparation. The first year I attended in 2016 I was a newbie. I wasn’t even sure if I should be attending after just opening my nonprofit organization, Continue Reading →

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 →