Patient Advocacy: Shared Decision Making in Breast Reconstruction

When does your voice matter in patient advocacy in the shared decision-making conversation of breast reconstruction? The sum of events helps me answer this question in my work as a patient advocate. I have a voice, true. However, my voice only becomes amplified by the support, connections, and personal interaction I make through social media with those interested in this topic; plastic surgeons and patients who have lived the experience. Shared decision making in breast reconstruction after mastectomy means a process the patient and plastic surgeon engage in, resulting in the choice the patient believes is in their best interest. It includes but is not limited to the suggestions made by the plastic surgeon based on skill and years of expertise, being given all options for breast reconstruction, discussing risks and complications, and listening to and respecting the voice of the patient and what they bring to the conversation. This Continue Reading →

Waiting for Authorization for Breast Reconstruction

Waiting for Authorization for Breast Reconstruction It can take enormous patience for breast cancer patients who are waiting for authorization for their breast reconstruction procedure. I was once there. Now I am an advocate for all options of breast reconstruction after mastectomy. I interact with patients daily. Many times, their questions are a catalyst for topics to write a blog. Amplifying our voices to educate is part of patient advocacy responsibility. I recently received an email from a patient who was denied coverage for a revision phase of her reconstruction. Her plastic surgeon even wrote an appeal, but it was still denied. She reached out to me for help and suggestions about what to do. I take a deep breath when I get these emails and step out of my breast cancer survivor role and put on my patient advocate hat. I don’t want to offer false hope, but I Continue Reading →

A 3-year Anniversary: Blogging About Breast Reconstruction

I am celebrating a 3-year anniversary blogging about breast reconstruction on March 17, 2018. When Did I Begin Blogging About Breast Reconstruction? It began as a cathartic experience after having successful DIEP flap surgery in early December of 2014. While I was at home healing, the events and challenges I faced the year after a second breast cancer diagnosis began to flood my thoughts daily. I put my M.Ed. program on hold to focus on my health. I met with a friend and artist in early January, 2015. We sat down together and planned two things; the artistic backdrop and platform for my blog on WordPress and an opening date, March 17, 2015. We are both Irish and it was a good goal. We met many times afterward to hammer out details. We hit our target date and celebrated together over a pint of Guinness. Why Did I Begin Blogging Continue Reading →

We are Journey Strong! #IWD2018

We are Journey Strong! #IWD2018. We are Journey Strong and today we celebrate each other on #IWD2018! We do not wear black dresses on the red carpet in solidarity at televised award shows. We do not march the streets holding signs to promote our cause. But make no mistake, we are a band of women with strength, grit, compassion, and a sense of solidarity for each other few know about. We are a group of over 1,600 women who have all faced breast cancer and losing our breasts after mastectomy. The only garments and accessories we wear in solidarity are compression garments and surgical drains. Some of us have become entrepreneurs on each other’s behalf to develop products to hold those drains with greater ease after mastectomy or breast reconstruction surgery. Some of us have opened nonprofit organizations to support one another financially, spiritually, through education, or counsel. Others have Continue Reading →

Breast Cancer Patients Paying It Forward

I have met so many breast cancer patients paying it forward after they have been diagnosed with the disease. I see these pay it forward breast cancer survivors writing blogs and sharing their lived experience. Some breast cancer survivors have opened nonprofit organizations to support and assist others going through healing and recovering from the devastation this disease can have on a person. Still others have become fierce advocates. They research and explore the science of breast cancer, clinical trials or they “go to the hill” to make policy changes in breast cancer care. It is inspiring and honestly keeps me focused and stimulated to continue my own DiepCFoundation work. I was recently the beneficiary of a breast cancer patient paying it forward from her own nonprofit organization, Nadia Strong, Beautiful Beyond Breast Cancer. Nadia’s mission is to empower women through breast cancer with her gift of photography. She invites Continue Reading →

Sensory Nerve Reconstruction During DIEP Flap after a Mastectomy

DiepCFoundation interviews Dr. Minas Chrysopoulo from PRMA in San Antonio about sensory nerve reconstruction during DIEP flap after mastectomy to restore sensation to the breasts. The procedure is called microneurorrhaphy (micro-ner-ar-o-fee) A real mouth full! Dr. C points out that this is a complex topic to describe at a consult. A plastic surgeon may say that your breasts will “feel” more natural but “to whom”? The reality is that the patient will not feel the same that they did before mastectomy. I am the Founder and Director of DiepCFoundation and was fortunate to have this interview with Dr. Chrysopoulo. I am also a patient who has had successful sensory nerve repair performed by Dr. C. It is truly better than the alternative, which is NO sensation in the breasts at all. I’m quite used to this “new” sensation now and I like it. I feel very fortunate to have found Continue Reading →

Study of Body Mass Index post DIEP Flap Breast Reconstruction: A Patient Perspective

I rely on research from evidence based journals I read to understand and share the latest information about breast reconstruction and breast cancer to the community I serve. One of the journals I utilize is Plastic and Reconstructive Surgery: Journal of the American Society of Plastic Surgeons. January is a month many of us focus on health, weight loss, and losing those extra holiday pounds. As a patient advocate who has had autologous, DIEP flap breast reconstruction, I wanted to share my thoughts and perspective from a study of body mass index post DIEP flap breast reconstruction from the December 2017 issue of the Journal : The Impact of Autologous Breast Reconstruction on Body Mass Index Patterns in Breast Cancer Patients: A Propensity-Matched Analysis.  I appreciate the focus of the article. It can be read here from the final statement in the conclusion of the paper: Our findings can be used to Continue Reading →

Collaboration in Educating about Breast Reconstruction

My favorite word throughout my education career has always been “collaboration”. So is the case now in my role as Founder of DiepCFoundation.org. I couldn’t feel any stronger about collaboration in educating about breast reconstruction. The change leaders I have met in the past three years on my own personal quest to educate more women and men about options in breast reconstruction motivate me daily to do more, explore new avenues to educate, support them in their mission, and stand beside them collaboratively to continue this work. This week on my social media feeds I have seen an announcement by Patricia Anstett that her book, Breast Cancer Surgery and Reconstruction, What’s Right for You, is now out on paperback on Amazon. Congratulations are in order as this was a professional labor of love for Pat. Full disclosure: Yes! I’m featured in the book and proud of it. However, I have Continue Reading →

DIEP flap Breast Reconstruction: Did I make the right choice?

YES! I did make the right choice having DIEP flap breast reconstruction! Each December marks another year and anniversary of my DIEP flap surgery. I remember so much about the dark, cool, morning we left for the hospital, feeling calm, prepared, and ready on December 1, 2014. The time between my double mastectomy in mid-May of 2014 and my breast reconstruction were some of the most trying days of my life. In 2002, after my first breast cancer diagnosis, I had been through 2 surgeries, eighteen weeks of chemotherapy followed by six weeks of daily radiation. This was physically demanding because I was so sick and felt so weak. Fast forward twelve years to 2014. Waiting for my breast reconstruction was psychologically trying. Each month that passed after my double mastectomy only decreased my self-image as a woman due to the loss of my breasts and seeing myself in the Continue Reading →

Why do I Marvel at Breast Reconstruction & Plastic Surgery?

I ask myself this question often: Why do I marvel at breast reconstruction & plastic surgery? October was a busy month for many who work in this field and educate about this topic. I think it was one of the busiest months I had this year. I was in six states and six different airports engaging with or educating about breast reconstruction with plastic surgeons, patients, advocates, and the public. I was exhausted yet exhilarated to know the innovations and developments in the field of breast reconstruction and plastic surgery continue to keep me motivated and captivated. It has been three years since my own breast reconstruction and yet, thinking back to November of 2014 and having no breasts on my body, it is easy to understand my own fascination with this topic. When you use your own tissue to rebuild your breasts after losing them to breast cancer, that Continue Reading →