Author: Terri

I am a patient educator and advocate for choices in breast reconstruction after a mastectomy. Statistically, many women are not being informed of their choices due to many factors. Breast reconstruction is a personal choice. Providing information and education about those choices is a patient rite. It is the mission and focus of my work to provide that education and information.

The Latest on BIA-ALCL and What A Patient Advocate Reports to Her Community 

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The Latest on BIA-ALCL and What A Patient Advocate Reports to Her Community As a patient advocate for breast reconstruction I am often asked questions about recent findings and reports in the news. This week I was asked questions about the latest NBC News article, and the same topic reported in other media outlets. Theses stories were on the safety of breast implants and a rare disease, BIA-ALCL, Breast Implant-associated Anaplastic Large Cell Lymphoma. I listened attentively as I watched the nightly news and read articles across other media venues. I immediately thought to myself, this was going to understandably stir concern and controversy in my community. It did. I was asked questions about the reports presented this week in the news media from women who currently have implants or are planning to for breast reconstruction after breast cancer. My immediate concern was to calm their fears and share what I Continue Reading →

Going Home: A Breast Reconstruction Advocate’s Story of Love and Loss

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Fall has been a roller coaster of emotions for me from love to loss. There are times in our lives when we seem to be floating through events, whether good or bad, simply putting one foot in front of the other and moving forward. I garner strength surrounding myself with the love of friends and family during these times. This is the account of my Journey and the symbolism behind the phrase, “Going Home”. The moving van pulled up to our home in late October to load and pack our household goods. We packed our car with as much as we could cram into it for the 1650 miles road trip to our new home. The evening before we left, I received a phone call from my Mom. I choked back tears as I talked to her about Dad. The hospice nurse assessed his vitals and we knew he had Continue Reading →

The Role of Caregiver in Breast Reconstruction: Expectations vs. Reality

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The Role of Caregiver in Breast Reconstruction: Expectations vs. Reality I am honored to present my son, Rich, and the plastic surgeon, Dr. Minas Chrysopoulo, who performed my DIEP flap breast reconstruction. The video in this blog is a great conversation between the two men. We sat down together recently at Plastic Surgery the Meeting 2018, in Chicago. The two men had never met before the conference. But, they felt they knew enough about each other to have a very comfortable conversation regarding the role of care giver in breast reconstruction. The Caregiver Meets the Surgeon I planned a surprise meeting of these two gentlemen the evening we arrived in Chicago for the conference. I walked into a restaurant we arranged to meet at for dinner and Rich waited around the corner in order to surprise Dr. C. I went in first to greet Dr. C and give him a Continue Reading →

Sharing the Emotional Night I Was Awarded Patient of Courage

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Some moments in life are forever etched in your memory. The evening of September 28, 2018, at the Navy Pier in Chicago is one of those moments for me. I want to share the emotional night I was one of three recipients awarded the Patient of Courage from the American Society of Plastic Surgeons at their annual meeting, PSTM18. The Anticipation Was Worth the Wait! I received news in the spring I was the 2018 recipient of the Patient of Courage Award. I was nominated by the plastic surgeon who performed my DIEP flap breast reconstruction, Dr. Minas Chrysopoulo of PRMA in San Antonio. The process was a bit like waiting for Christmas, keeping the secret, enjoying all the preparation, and finally celebrating the evening. The fantastic ASPS media crew scheduled a trip to my home in Arizona mid-August to film my story in a YouTube video. Until the video Continue Reading →

Reflecting on the Pink of October and Breast Cancer

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October and the color pink have been symbolic of breast cancer for many years. It is a color both embraced for its meaning and at the same time despised by what many consider over use and misuse. I understand since I have survived breast cancer twice myself. This year brings me to a personal point of reflection on the pink of October and breast cancer. It has been one of the most rigorous months I’ve experienced in quite some time; mixed with emotions of gratitude, anticipation, new friendships, farewells, sadness, and letting go. The Shared Decision Making Panel at #PSTM18 It began with one of the proudest moments of my professional career as I sat on a panel with my breast reconstruction surgeon, Dr. Minas Chrysopoulo, a dear friend and patient advocate colleague, Kirstin Litz, and a new friend Dr. Hani Sbitany speaking about the importance of shared decision making Continue Reading →

5 Things to Share: My Delayed DIEP Flap Breast Reconstruction

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I am often inspired to write while reading blogs from other sites, reading research papers, or after speaking to patients who ask questions about my experience having delayed DIEP flap breast reconstruction. This week is a mix of all three. I saw a post on the Facebook page from the plastic surgeon I chose for my surgery. The title of the blog post read: Patient Reported Outcomes After Immediate and Delayed DIEP Flap Breast Reconstruction. ~ PRMA Plastic Surgery The blog references an evidence-based study from Plastic and Reconstructive Surgery. It states: The BREAST-Q is an universally accepted tool for evaluation of quality of life and satisfaction in breast surgery. The aim of our study was to identify differences in patient-reported outcomes in immediate and delayed reconstruction with DIEP flap.  ~ Plastic Reconstructive Surgery  During conversations as a patient advocate, I speak to women who ask me to describe what my Continue Reading →

Who is Responsible? Aesthetic Outcomes of Breast Reconstruction Surgery

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It is an important topic to discuss. Who is responsible for the aesthetic outcomes of breast reconstruction surgery? The headline in the September 6, 2018, online article from Cosmopolitan reads: These Cancer Patients Wanted to Get Rid of Their Breasts for Good. Their Doctors Had Other Ideas. It is an emotionally filled article from women who chose to go flat. These women woke up after surgery with results that left them angered, saddened, disappointed, and fighting a battle to find out how to change things. In fact, on September 8, 2018, the article mentioned: … she’s organizing the first Not Putting On a Shirt Nationwide Walk in Cleveland, Ohio, in which women will join her to march topless and raise awareness around the issue. A sister march will be held in Los Angeles in the same day. The article speaks of women who chose to remain flat after their mastectomy Continue Reading →

DIEP flap Breast Reconstruction: Value of a Team Approach

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DIEP flap Breast Reconstruction: Value of a Team Approach Researching a highly skilled, board certified microsurgeon is the first and most important step in your DIEP flap breast reconstruction process. But what additional criteria might you look for? After having a detailed, shared decision-making conversation with my breast surgeon, I soon realized in DIEP flap breast reconstruction there was great value in a team approach. There are microsurgeons who work as a team during DIEP flap breast reconstruction for a variety of reasons. After my double mastectomy I researched several plastic surgeons across the United States viewing their websites to find those who work as a team. I wanted both team members, the microsurgeons, to be highly skilled and have a high rate of success.  There is other criteria I have listed on my resource page under the heading, “Board Certified Plastic Surgeons by Region”. These suggestions should also be Continue Reading →

Your Hospital Prep the Morning of Breast Reconstruction

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You are diagnosed with breast cancer or are having a prophylactic mastectomy due to a gene mutation putting you at high risk for breast cancer. You spent days, weeks, or perhaps months talking to others and researching the best plastic surgeon because you have decided to have breast reconstruction. Now it’s the morning of surgery and it’s time for your hospital prep. You enter the hospital early in the morning, sometimes before the break of dawn. You have eaten very little. A hundred thoughts run through your head knowing you will soon be put to sleep while your breasts are removed and replaced with either implants or your own tissue. The shower and prep with the antibacterial soap you are instructed to use the morning of surgery is complete. You feel like you are squeaky clean from tip to toe. You might wish you could have on makeup and deodorant. Continue Reading →

Breast Cancer: Why We Choose to Be Patient Advocates

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I recently took part in an online meeting with two friends and fellow patient advocates. We met through the Project LEAD Institute program in July of 2017. Why did we apply for scholarship and attend this intensive week of the study of breast cancer biology? We all want further training to improve our advocacy knowledge base, so we could better serve our communities. The focus of our discussion at our online meeting; “Why do we choose to be patient advocates”? Kirstin, Jennifer, and I remain close friends. We talk frequently via phone chats, texts, and emails and ask each other for advice. We seek resources when we cannot find them for our community who might be in need. Opportunities for new learning, conferences to attend, and sharing new studies are just a few of the advocacy tools we share with each other to stay on top of our game. Our Continue Reading →