Tag: breast cancer

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 →

The Power of Education, Connections, and Giving

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I moved back to Seattle in late 2018 to be near family. The following year, in October of 2019 I met with a team at Microsoft for the first time to present my story as a patient advocate, nonprofit leader, and two-time breast cancer survivor. Each October since then, I speak to teams at Microsoft providing information and education on the topic of breast reconstruction during their Microsoft Give Day. Each year I do these presentations I am inspired by the power of education, connections, and giving. How is the Power of Education Spreading? I often discuss this with my life-long friend, Thomas, who so generously sets these meetings up for me each year along with his Microsoft colleagues. We know, according to statistic from The National Breast Cancer Foundation, that one in eight women in the United States alone will develop breast cancer in her lifetime. The United States! Continue Reading →

Breast Reconstruction Transitions and Changes

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This week marks the beginning of the autumn equinox when the sun shines directly on the equator and the northern and southern hemisphere get the same amount of sun rays. I live in the Northern hemisphere. The days grow shorter and the nights longer because the Earth begins to tilt away from the sun. Seasons bring changes. There are comparisons to draw with the arrival of fall and with breast reconstruction transitions and changes. Breast Reconstruction Changes in our Bodies Many anticipate the changes fall brings. I look forward to the chill in the air and the warm clothing in my closet waiting to be worn and layered to keep me warm. Just as the leaves change color from green to brilliant hues of orange, golds, and browns, so too our bodies change during breast reconstruction. Leaves transition and let go of the tree, falling gracefully on the ground during Continue Reading →

Episode 9: Shared Decision-Making

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When it comes to making decisions in your healthcare, my guest, Dr. Minas Chrysopoulo and I present the first in a series on the topic of shared decision-making in the summary of Episode 9: Shared Decision-Making on the DiepCJourney podcast. Toliman Health was founded by Dr. Minas Chrysopoulo, an internationally recognized expert in breast cancer reconstruction and shared decision-making. Dr. Chrysopoulo is the creator of Toliman’s flagship app, Breast Advocate® As co-leads of the WHIS Shared Decision-Making Expert Group our goal is to facilitate the adoption and practice of shared decision-making (SDM) throughout healthcare systems and across all medical disciplines. The “why” of the informative approach to decisions in healthcare is multi-faceted. It encompasses the patient’s preferences, values, support system, and expectations for outcomes. Back to Our Favorite Topic: Shared Decision-Making It is important in so many ways. Shared decision-making is not actually a new concept. It has been around since the 1980’s. Being one of Continue Reading →

Oncoplastic Surgery after a Breast Cancer Diagnosis

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Dr. Lashan Peiris, an oncoplastic and reconstructive breast and general surgeon in Edmonton, Alberta, Canada, discusses oncoplastic surgery after a breast cancer diagnosis. He defines the term oncoplastic breast surgery, describes the type of conversation he has with his patients, and who might be a candidate for this type of surgery after a breast cancer diagnosis. Shared Decision-Making in Oncoplastic Surgery When a person is diagnosed with breast cancer the healthcare team should work together to coordinate patient care to determine the best long-term survival and quality of life choices in treatment and surgery. Dr. Peiris makes a profound statement, “Gone are the days where we as breast surgeons walk into a room, tell a lady she’s got breast cancer, and walk out five minutes later.” Dr. Peiris continues his discussion by describing the shared decision-making process in breast cancer and breast surgery care. All aspects of the patient’s life Continue Reading →

Episode 2: Sexual Health Needs After Cancer

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Dr. Don Dizon is our guest on season 2, Episode 2: Sexual Health Needs After Cancer, of the DiepCJourney podcast. What are we discussing? Sexual health needs after cancer, a topic patients often have to bring up themselves to discuss with health care providers. Dr. Dizon tells us why this is the case and empowers patients with information to talk about this with specialists in cancer care regarding sexual health needs after cancer.  Don S. Dizon, MD, FACP, FASCO is Director of the Pelvic Malignancies Program and Founder of the Oncology Sexual Health First Responders Program, Lifespan Cancer Institute. He is the director of medical oncology at Rhode Island Hospital. Be sure to check out the DiepCFoundation YouTube video on the same topic with Dr. Dizon. What is the Definition of Sexual Health Needs After Cancer? I begin by recognizing the topic of sexual health is not often spoken about in clinic. Continue Reading →

The Intersection of Research and Decision for Breast Reconstruction

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One day your life is humming along as usual. Work, children, family, friends, school, house cleaning, errands, vacation, cooking, on and on. Then out of nowhere you hear the news that feels like a gut punch. “You have breast cancer.” Perhaps you get genetic test results back and you find out you have a genetic mutation putting you at high risk of getting breast cancer. You are thrust into a new role finding out all you can about your diagnosis. Will I be facing a mastectomy or choose a mastectomy for my treatment? When will the intersection of research and decision for breast reconstruction occur? The Research Process Why am I writing about this? I agonized over this part of my breast cancer diagnosis when I was told my best choice for my long-term survival was a double mastectomy. It was my second diagnosis and now in both breasts vs. Continue Reading →

Episode 5: A Young Breast Cancer Survivor Advocating for Survivorship

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Hil Moss is our guest on Season 2, Episode 5 of the DiepCJourney Podcast. A young breast cancer survivor (diagnosed at 28), Hil is an active patient advocate, mentor, and writer in the cancer community, and dedicates her time to raising awareness around the importance of early detection and longitudinal survivorship care. She is also an MBA/MPH Candidate at Yale University, with a focus on entrepreneurship and innovation in cancer care. She made the choice to leverage her own tissue to reconstruct her breasts having DIEP flap breast reconstruction. Hill shares her story from diagnosis, breast reconstruction, and through to her recovery. She shares her connection to the Breasties community and the advocacy work they share. Our call to action in Episode 5 with Hil, a young breast cancer survivor, is to begin doing breast self-exams at an early age. A breast self-exam for breast awareness helps you understand changes 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 →

Time to Consider Things While in Isolation

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I have been fortunate not to have been affected by the Corona virus… until this week. The statement itself poses something of a paradox, “not to have been affected by the Corona virus.”  Our global population has been affected by this since the pandemic began in ways unthinkable, unimaginable. I felt the physical affects this week after testing positive. I have had time to consider things while in isolation. Perspective and the Regrettable Necessities of Life I am on the mend, thankfully. It feels a bit odd to write about this publicly after keeping it on the down low all week. Especially given the other world tragedies we are dealing with and as the pandemic numbers increase… again. Perspective! Folks are pent up, tired, weary of dealing with the isolation. Having celebrated a few trips around the sun, birthdays, and feeling fortunate to recuperate in the care of my mom’s Continue Reading →