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 →

Patient Reported Outcome Measurement in Plastic Surgery & Breast Reconstruction

Patient Reported Outcome Measurement (P.R.O.M.s) are a way to improve plastic surgery and breast reconstruction. Dr. Roy Kim, San Francisco Plastic Surgery, points out that with the development of P.R.O.M.s in the future, the hope is that a broader audience of participants including a more diverse female group both in ethnicity and socio-economic levels, will be included. By engaging both patient advocacy groups and breast reconstruction practices, better data could evolve to be more statistically valid information and help more patients. How and Why are P.R.O.M.s done? Patients do surveys of their plastic surgery and breast reconstruction results/experience. Data is collected and saved. The data becomes statistically significant The data helps with various procedures in breast surgery, plastic surgery, and various breast reconstruction. P.R.O.M.s started with an on-line group to measure patient outcomes. Academic Centers will want to collect this data for future research and journal articles. Private practice plastic surgery 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 →

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 →

Christmas Week: A New Breast Cancer Connection

Christmas Week: A New Breast Cancer Connection I was privileged, during this week prior to Christmas, to make a new breast cancer connection. Coincidentally enough, I learned about Nadia through another breast cancer friend and colleague, Barbara Jacoby. Barbara posted an article on social media about Nadia’s generous work with breast cancer patients through her love of photography. I read that Nadia was right here in my own back yard. I reached out to her for a meeting. As is the case with many breast cancer survivors I speak with, the conversation began with an immediate hug and a feeling of connection. We both encourage moving beyond a breast cancer treatment in our own communities through our separate nonprofit foundations, DiepCFoundation.org and NadiaStrong.org. The purpose of our separate yet similar Foundations seem to collide with the same message: We encourage women and men to move beyond the diagnosis and feel 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 →

Tummy Tightness after DIEP flap Breast Reconstruction

I speak to many women who ask about tummy tightness after DIEP flap breast reconstruction.  The emphasis of the question focuses on how long the tightness will last and how it is adjusting to the new feeling. When DIEP flap breast reconstruction is performed women also have the advantage of getting something mimicking a tummy tuck, also known as abdominoplasty.  The technical aspects of DIEP flap surgery are well explained here at the Microsurgeon.org website.  Here is a quote from the page: The tissue used for DIEP breast reconstruction contains skin, fat, and blood vessels. It is the same tissue area that is discarded in the classical cosmetic surgical abdominoplasty – also known as the tummy tuck. Your Newly Altered Tummy I want to make an analogy about tummy tightness after DIEP flap breast reconstruction.  When you buy a new pair of jeans that are too big in the waist Continue Reading →