A Patient Advocacy Story

A Patient Advocacy Story Breast Reconstruction Awarenss Day 2015, a patient advocacy story, begins with an inspirational moment; a moment that was a true catalyst to a new found purpose in my life. Where was the inspiration? Why would a patient become an advocate and subsequently an affiliate to promote a nationwide campaign for breast reconstruction awareness following a cancer diagnosis and mastectomy? Easy answer! The plastic surgeon I chose to do my DIEP flap surgery and the patient liaison that was my first point of contact at their group WAS my starting point. When something feels right, I move on it. It was my moment of inspiration. I was asked to share my reconstruction surgery experience with other women who were considering the same type of surgery. I wanted to pay it forward and let other women know about this group, their skill, success rate, credentials, compassion and the Continue Reading →

Burns in Reconstructed Breasts after Mastectomy and Breast Reconstruction

Burns in Reconstructed Breasts after Mastectomy and Breast Reconstruction An article published in Medscape.com on burns in breasts after mastectomy which also included after breast reconstruction admittedly left me riveted.  Look at this statement from the article: Together with this case series, the literature suggests the most common heat sources responsible for the identified burns included: Heat conduction: using heating pads, hot liquids, and hyperthermia devices. Solar radiation: sunbathing with a dark swimsuit or using a sun lamp. Heat convection: using hair dryers. A close examination of this article and the above-mentioned items leads me to conclude that the most common culprits are household items and sunbathing.  I was given literature regarding post-surgical care from the plastic surgeon who performed my DIEP flap breast reconstruction to clearly avoid heat of any kind to my reconstructed breast, including standing with my back to the shower as well as sunbathing. I personally Continue Reading →

Restored Breast Sensation: Breast Reconstruction

Restored Breast Sensation: Breast Reconstruction I am a patient who has restored breast sensation after breast reconstruction.  As a patient advocate who educates and speaks to hundreds of women and men about all options for breast reconstruction I am aware that many who choose breast reconstruction experience numbness and a variety of new sensations in their reconstructed breasts. I am referencing a recent article in the New York Times, After Mastectomies, An Unexpected Blow: Numb New Breasts. I respect but don’t fully understand the statements from patients experiencing numbness regarding their experience with their own reconstructed breasts.  Specifically, these: The statement under the photo taken from the article Re “Mastectomy, Then Shock: Lost Feeling” (front page, Jan. 30): Dane’e McCree with her daughters, Marleigh, left, and Brooklyn, in Grand Junction, Colo. “I can’t even feel it when my kids hug me,” Ms. McCree said after a breast reconstruction surgery. Credit Continue Reading →

Breast Reconstruction Surgery Fears

Breast Reconstruction Surgery Fears Why do patients fear surgery for breast reconstruction?  It’s just another piece of the anxiety puzzle after a breast cancer diagnosis.  You’re faced with the dreaded news that a best or only option for your treatment plan is a mastectomy.  Lose my breasts?  Your head starts reeling and you think about what you will look like losing the body parts that most defines you as a woman.  There will be scars, pain, recovery, time away from a job and family, anesthesia, medical and insurance costs, and oh yes, what about getting all that cancer out of my body during surgery!  The list goes.  I decided to explore some of these fears in a poll.  I asked members of a Facebook page I manage in support of those going through breast reconstruction.  What they fear and what they go through in their diagnosis and decision to have Continue Reading →

Holiday Wishes on the Journey

Holiday Wishes on the Journey This is the time of year to send holiday wishes on the Journey.  If I could wrap up in boxes all the stories shared, both happy and sad, those who have been on this Journey through breast reconstruction, I don’t think there would be a space large enough to place those wrapped boxes.  We have shared struggles, triumphs, waiting for results, preparation, anticipation of surgery, celebrating completion of the reconstructive process; the list goes on. Who are we here on the Journey? We are a global community that stretches beyond cultural borders and continents.  We are women and men who have heard those dreaded words, “You have breast cancer” or “You are BRCA positive”.  Through your research, a friend, or physician you found the Journey.  You told us your personal story.  Some are still in treatment waiting to go through the reconstructive process.  Others have Continue Reading →

#SABCS 2017 through a Patient Advocate’s Lens

#SABCS 2017 through a Patient Advocate’s Lens #SABCS 2017 through a patient advocate’s lens is about my experience at the San Antonio Breast Cancer Symposium (#SABCS) 2017.  Two descriptive words that sum it up quickly from my personal standpoint are, exhilarating and exhausting.  I am an advocate for breast reconstruction options after mastectomy.  That is my wheelhouse so I carefully contemplated the benefits of attending.  But, there is no breast reconstruction without breast cancer.  I found it to be a profound conference on many levels both intellectually and emotionally and well worth the experience. A Robust Patient Advocacy Program My decision to attend was solidified after learning about the robust patient advocacy program that SABCS has.  Each evening, after the general sessions, patient advocates would gather to listen to selected “hot topics” of the day.  We could listen, interact, and ask questions. There were notable speakers and leaders in the Continue Reading →

When the Seemingly Fearless become Fearful

When the Seemingly Fearless become Fearful The title of this blog, “When the seemingly fearless become fearful”, was etched out of a discussion I had with a fellow cancer survivor.  Stephie is a childhood cancer survivor and donor heart recipient, but most importantly, a dear friend.  We became friends through social media and the patient advocacy work we do.  Our phone chat earlier this week centered around my fear.  This was my week to have blood work for tumor markers.  I am still on a four-month protocol cycle for these since my second breast cancer diagnosis in 2014.  I am grateful they have all been within the normal range since my second diagnosis.  However, these events do not pass without triggering my PTSD about recurrence. Stephie is such a great listener and encouraged me that this week’s blog should be about “when the seemingly fearless become fearful. Breast Friends on Continue Reading →

Two-Year Post DIEP Anniversary

Two-Year Post DIEP Anniversary Today, December 1, 2016 marks my two-year post DIEP anniversary.  Anniversaries are for remembering and celebrating.  That is what I’d like to do in this blog as I recall some of the memories etched in my mind from this day two years ago, in 2014 when my life and my breasts were rebuilt after living with a mastectomy and no breasts for seven long and difficult months.  I want to share those bright moments from that day, fun things I remember, and give hope to those who are newly diagnosed or have their breast reconstruction date on the calendar soon. Good-bye Boobs in a Box! I remember looking at my prosthesis the morning I got up to prepare for surgery.  I bid them a formal and fond farewell as I placed them in the box for the last time.  I traveled with that box more than Continue Reading →

Recap #PSTM16

Recap #PSTM16 Plastic Surgery the Meeting may seem like a distant memory but a recap of #PSTM16 from a patient educator standpoint summarizes the value of my first experience as an attendee.  It was a fast and furious weekend for me at the Los Angeles Convention Center since I was only able to attend Friday through Monday.  I scheduled classes to attend, met with plastic surgeons, and walked the vendor floor learning about products specific to breast reconstruction. The Educational Programs The first class I attended was one that focused on Cultural Competence in plastic surgery.  I wanted to step outside the box of breast reconstruction a bit and understand the broader world of plastic surgery.  It was a valuable instructional course.  The discussion given by a variety of plastic surgeons at this session focused on recognizing and embracing cultural diversity in the workplace among plastic surgery co-workers as well Continue Reading →

Fairness in Reporting, Breast Reconstruction

Fairness in Reporting, Breast Reconstruction An on-line article was published on October 31, 2016, in The New York Times entitled, ‘Going Flat’ After Breast Cancer.  This is my commentary on that article after having survived breast cancer twice and choosing to reconstruct my breasts with my own tissue.  I want you to focus on the words “reconstruct my breasts”.  They are my breasts.  Every part of my breasts are me, my own tissue, my own blood source, my own skin, my own nipples.  My own breasts that contained cancer cells have been removed through the skillful hands of a breast surgeon and rebuilt by the skillful hands of a microsurgeon. The breasts that I had before breast cancer were mine.  The breasts that I now have after breast cancer are mine.  Once my breasts had cancer.  Now, my breasts do not have cancer.  Therefore, I respectfully disagree with the last Continue Reading →

Pink & Blue Colors of Hereditary Cancer

Pink & Blue Colors of Hereditary Cancer I am not a BRCA gene carrier but tonight I will be hosting the premier of the movie, Pink & Blue Colors of Hereditary Cancer, in my city.  What is my interest then, you might ask? My Journey Through Genetic Testing I was diagnosed with breast cancer for the second time in 2014.  I had a double mastectomy because the cancer was in both breasts this time.  I knew a double mastectomy was the best course of action for me after asking, educating myself, researching, and having that all important, shared decision making discussion with my health care team.  I was diagnosed with breast cancer at an early age the first time. This was my second occurrence.  Those two criteria alone were enough evidence for my breast surgeon and oncologist to recommend that I have genetic testing.  From the National Cancer Institute: Several Continue Reading →