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 →

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 →

Being an Affiliate for Breast Reconstruction Awareness Day

Being an affiliate for Breast Reconstruction Awareness Day Many physicians, individuals, and organizations across the United States and the world choose to be affiliates for Breast Reconstruction Awareness Day.  Why?  A breast cancer diagnosis can be devastating, overwhelming and life altering both emotionally and physically.  We know that one in eight women will be diagnosed with some type of breast cancer in 2016 and well over 2,000 men.  Unfortunately, less than 23% of patients know what their options are for breast reconstruction after mastectomy.  That is the answer to why so many have chosen to become affiliates for Breast Reconstruction Awareness Day. “Closing the Loop” on Breast Cancer The message of the campaign is to “close the loop” on breast cancer.  Many women and men face surgery to remove the cancer and this surgery often leads to loss of one or both breasts, and thereby disfigurement.  “Closing the loop” means Continue Reading →

Breast Reconstruction Awareness Day

Breast Reconstruction Awareness Day BreastReconstruction Awareness Day has gone global and that’s great news for breast cancer patients!  The focus of these events is to educate and raise awareness about options for breast reconstruction after mastectomy.  Many of these events are held in the month of October in conjunction with Breast Cancer Awareness Month.  The choice to have breast reconstruction is a very personal one.  It involves a great deal of planning and requires a lot of information to make the best possible decision for each individual patient, both female and male.  It is not for everyone but the key take away and message of the Breast Reconstruction Awareness Day campaign is that everyone has the right to be given the information and to be educated about this topic. Breast Reconstruction after mastectomy is rarely a one-step surgical procedure.  Most reconstruction options require more than one stage.  What are those Continue Reading →

#BreastCancerRealityCheck

#BreastCancerRealityCheck The hash tag #BreastCancerRealityCheck was ushered in on October 1, 2016.  The purpose was to bring awareness to the true reality of breast cancer.  Social media participants were given the opportunity to speak through this hash tag and tweet about how breast cancer has affected them personally, professionally and otherwise.  Here’s what @curmdgeo (AKA Cancer Curmudgeon… love the name!) says about the hash tag. On October 1st, include #BreastCancerRealityCheck every time you tweet your truth. It can be a personal story, a picture, facts that people need but do not get from the sugarcoated coverage of this devastating disease. #BreastCancerRealityCheck Not Over! Ever! October 1st has come and gone.  October has not.  #BreastCancerRealityCheck should be revisited more than once a year, in my humble opinion.  Why?  Because this year alone an estimated 246,660 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S., Continue Reading →

A Tearful Golden Moment at #PSTM16

A Tearful Golden Moment at #PSTM16 I unexpectedly had a tearful golden moment at #PSTM16 the last evening I was there.  #PSTM16 was the first conference I have attended since opening a non-profit 501c3 Foundation to support and empower patients with education about options in breast reconstruction.  I will have many more blogs to write about my experience at the conference but this was truly a golden moment for me in more ways than one. An Evening of Celebrating Twitter Connections and Friendships It was at one of many special events that occurred at the conference.  This particular event was arranged by Dr. Karen Horton, one of the many talented plastic surgeons I engage with on Twitter and other social media venues to push out valuable information to patients interested in breast reconstruction.  The event was sponsored by Allegan and it was an absolutely lovely evening.  Allergan made it memorable Continue Reading →

Goals: #Plasticsurgery #BreastReconstruction, #PSTM16

Goals: #Plasticsurgery #BreastReconstruction, #PSTM16 Goals: #PlasticSurgery, #BreastReconstruction, #PSTM16 are what I’ve been rolling over in my mind for the past few days.  Tomorrow, September 23, 2016, bright and early as the sun rises I will board a plane to Los Angeles to the largest plastic surgery convention of the year, Plastic Surgery the Meeting 2016, #PSTM16. My goals for the meeting Attend educational events focused on the breast reconstruction aspect of plastic surgery. Explore and understand the latest practices and developments in breast reconstruction. Engage with vendors to learn about their products. Ask these vendors why their product is so important in the breast reconstruction process. Catch up on any new legislative news pertaining to #BreastReconstruction. Learn as much as I can about tips in networking and Social Media for #BreastReconstruction and #plasticsurgery. Report back to patients in blogs about what I have learned at the meeting. Meet more board Continue Reading →

Breast Reconstruction ~ Concealing Scars After Mastectomy

Breast Reconstruction ~ Concealing Scars After Mastectomy Breast reconstruction and concealing scars after mastectomy is a certainty for patients post surgery.  There are those who bravely bare their scars as a symbol of strength and what they have been through.  But for many, hiding the scars of breast reconstruction is a skill and becomes a sort of creative art. Various Surgeries ~ Various Scars There are abdominal scars and breast scars if you have had DIEP flap breast reconstruction.  LAT flap will leave you with scars on your back and breasts.  TUG flap will leave you with breasts and inner thigh scars.  PAP and GAP flap will leave scars at the breasts and buttocks areas.  Those who have immediate breast reconstruction will likely have the least amount of scars on their breasts, but scars nonetheless. Placement of scars is a topic that should definitely be brought up in the initial Continue Reading →