The Importance of Shared Decision Making: Breast Reconstruction

The Importance of Shared Decision Making: Breast Reconstruction What is the importance of shared decision making in breast reconstruction? A recent study published on the JAMA Network site stated this in the Conclusions and Relevance portion of the article: Shared decision making is needed to support decisions about breast reconstruction. Shared decision making is a daunting, yet attainable task, for both surgeon and patient when discussing the risks associated with breast reconstruction.  The article stated: Breast reconstruction has the potential to improve a person’s body image and quality of life but has important risks. Variations in who undergoes breast reconstruction have led to questions about the quality of patient decisions. My breast reconstruction experience was successful even though met with challenges that included out of pocket costs for travel, planning and recovery, calling on family and friends to help with recovery, and subsequent surgeries for scar revision and symmetry.  It Continue Reading →

My Double Mastectomy: Three Years Later

Double Mastectomy: Three Years Later May 15, 2014, I was sitting in a hospital room recovering from a double mastectomy.  Why am I smiling so much in the photo?  The answer: I just finished a phone conversation with my parents.  They live a little over one thousand miles from me.  I couldn’t believe how little pain I was in and how good I felt.  It was important to me that they hear my voice. Both my Mother and Father were in disbelief that I was calling them. Just 24 hours before, they were on alert at their home waiting for the phone call to let them know I was out of surgery and doing well.  When I mentioned to them I was heading home in a couple of hours after the call, they were even more surprised.  I could hear the sense of relief in their voices over the phone. Continue Reading →

I Hope You Dance #InternationalDanceDay

I Hope You Dance #InternationalDanceDay I hope you dance on #InternationalDanceDay!  This is a story of two friends, both breast cancer survivors who are connected by one song and a passion for dance.  This story is long overdue! My friend Susan and I met as young mothers.  She had three sweet and charming daughters.  I had two amazing and delightful sons.  We spent many hours watching our youngest children play together.  Time passed and Susan and I parted ways geographically but to this day we remain close friends. I received a dreaded phone call in November of 2000 that I never expected to get.  Susan called from across the country to tell me she had breast cancer.  I began to cry on the phone.  I just wanted to be there to hug her.  I remember her words exactly.  She said, “Terri, I didn’t call to make you cry.”  That statement Continue Reading →

Finding a Breast Reconstruction Plastic Surgeon

Finding a Breast Reconstruction Plastic Surgeon How did you find your plastic surgeon?  This poll question was posted recently on the closed, private Facebook page supporting breast reconstruction patients.  These were the three response questions to choose from. Recommendation from another physician, if so, which one in comments please. Oncologist, breast surgeon, primary care or other? 64 respondents Online research? 20 respondents Recommendation from a friend? 17 respondents Question 1: Recommendation from another physician. Of the 64 respondents, not all listed the type of physician they received their recommendation from in the comments. Here are the results of the respondents who did comment. Breast surgeon: 37 Oncologist: 4 Primary Care 2 Other listed referrals included the following: Mammography technician Receptionist at an oncology office Nurse practitioner Breast cancer patient navigator Genetic oncologist It is interesting to note that most women got recommendations from their breast surgeons.  I was fortunate to Continue Reading →

You Come First after Breast Reconstruction

You Come First after Breast Reconstruction One of the best pieces of advice I can give to those I talk to planning their surgery, “You come first after breast reconstruction.”  It is a very difficult concept and mantra to adopt when you are so used to caring for others.  It is particularly challenging for those who go into breast reconstruction feeling healthy and fit, going about their daily routine of cooking, cleaning, carpooling, mothering, caring for others, and working a full-time job.  A sudden change in that routine is hard to wrap your mind around.  Believe me, it stops very suddenly after breast reconstruction but it IS temporary and so worth taking the time to put yourself first. We don’t realize how much bending, twisting, and lifting we do each day.  I have been on the phone with individuals answering questions about the recovery process.  While I am speaking with Continue Reading →

Psychological Benefits of Breast Reconstruction

Psychological Benefits of Breast Reconstruction There have been many articles written over the years regarding the psychological benefits of breast reconstruction.  When a woman or man loses a body part to breast cancer it seems reasonable to expect one would experience upset and psychological trauma no less than any other amputee.  However, the decision to remedy the amputation of the body part through breast reconstruction is not an easy process.  It means more surgery, recovery, dealing with possible side effects and complications, time off work, support from loved ones, research, and acceptance there will be lifelong scars. One of the driving factors to move forward with my own breast reconstruction after my mastectomy was to remedy the “psychological distress” I was experiencing from the loss of my breasts.  It took a full week after my mastectomy for that psychological anguish to hit home in a figurative and literal sense.  This Continue Reading →

Breast Reconstruction Travel & Post-op Visits

Breast Reconstruction Travel & Post-op Visits A question was posed to me recently about breast reconstruction travel and post-op visits. The question was this: Terri – when you traveled for your DIEP, did you travel back/ forth for all the follow up visits also?  So, wondering how all the follow up visits go in a situation like this? How long did you stay in SA while recovering? It is an important question to ask. I had the same question before my own DIEP flap surgery.  DIEP flap is a very specialized breast reconstruction surgery using the patient’s own tissue.  There are few qualified micro-surgeons who perform it with a high rate of success and have amassed a great number of flap surgeries performed.  When the numbers are extrapolated, there is not even one in every state.  It makes sense, then, that to find a highly-qualified micro-surgeon, patients frequently must travel for 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 →

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 →