Tag: Patient Advocacy

The Voice for a Community in Breast Cancer

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Many people who have had or currently have breast cancer choose to be the voice for a community in breast cancer. This week, as I prepare for Plastic Surgery the Meeting I will be using the hashtag #PSTM24 on my social media platforms to share the latest in surgical techniques and the newest innovations from industry that results in better patient outcomes and care in breast reconstruction. Each Voice in the Breast Cancer Community is Unique My focus is on breast cancer and breast reconstruction surgery after mastectomy. Not all patient advocates and voices in breast cancer identify with the same platform. We have each positioned ourselves through time, training, and passion to share our personal stories while at the same time providing scientific and evidence-based information to the unique communities we serve. It is a robust community with folks that include community voices in: Since opening DiepCFoundation in 2016, Continue Reading →

Art Series by Beth Gainer

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The creative work of Beth Gainer is featured in this summary of the DiepCFoundation educational channel interview we did together. I invited Beth to put together a presentation for the interview to share slides featuring some of the art that she hopes to have in a public space or gallery someday. The title is so inspiring and fitting: Breast Cancer, Female and Young – Art Series by Beth Gainer. Meet Beth Gainer Beth is a breast cancer survivor, a mother, an English professor, writer, book author, and an artist. Her creative writing and artwork speak to so many of us and has been a healing mechanism in her own Journey. She was diagnosed with breast cancer in her thirties and something she found in a self-exam. A mammogram and doctors exams had missed it. What Beth noticed upon self-exam was a slight dimpling. When she brought it to the attention Continue Reading →

A Retirement Tribute to Deanna Attai: This Batch is for You!

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Deanna J. Attai, MD announced her retirement this week on what else other than social media? I suspect for many, like me, it feels like a bittersweet announcement. My message to her comes from my experience as a patient advocate and organic gardener. Deanna has lived to work most of her professional life. Now I know she can engage fully in working to live. This is a retirement tribute to Deanna Attai. Dr. Attai, this batch is for you! Dr. Attai, the Breast Surgeon My first recollection of Dr. Attai is through social media. The hashtag #BCSM (breast cancer social media) was created by her, Alicia Staley, and the late Jody Schoger. The first #BCSM tweet chat occurred on July 4, 2011. Over the past thirteen years, a great deal has changed in social media. However, the community created by one hashtag, #BCSM changed the engagement between breast cancer patients Continue Reading →

Should You be Telling Someone What Kind of Reconstruction to Have?

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There are a few layers to peel back when answering this question. It goes without saying I am referring to those affected by breast cancer and are facing a mastectomy. Whether you are a surgeon, patient, family member, or friend, should you be telling someone what kind of reconstruction to have? Understanding the Overwhelming Shock I see some differences but more similarities when I speak to women who are at high risk of getting breast cancer than those with an active diagnosis. Those who are at high risk of getting breast cancer are a those who have a genetic mutation. The first step is knowing your family history. This will be followed by a visit to a genetic counselor or oncologist to begin formulating a plan that might include: People who have just received the news they have a breast cancer diagnosis have considerations for planning their treatment that can Continue Reading →

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 →