Breast Reconstruction and New Genetic Testing Guidelines

As a patient advocate who provides resources for breast reconstruction, I am paying close attention to the new updated genetic testing guidelines issued by the American Society of Breast Surgeons. The information needed to make an informed decision is multi-faceted. Without providing updated information to the community I serve, those affected by breast cancer, some will remain uninformed. Being uninformed translates into not being able to have a shared decision-making conversation with any health care provider about genetic testing if you are affected by breast cancer. Being aware of these new updated guidelines can be a pivotal point in your decision to move forward with breast reconstruction or not. Surveillance, surgery, treatment, or future testing are decisions often made based on genetic test results. Therefore, writing about this topic is important to me. Understanding the Information on Updated Genetic Testing Guidelines There have been several articles written this week on Continue Reading →

El valor de una 2ª opinión para la reconstrucción mamaria

El valor de una segunda opinión para la reconstrucción mamaria es, afortunadamente, algo que tiene el potencial de dar esperanzas a las mujeres que han sido rechazadas en una consulta inicial para una reconstrucción mamaria autóloga. Tuve la fortuna de hablar con dos cirujanos certificados, el Dr. David Song de MedStar Georgetown y el Dr. Minas Chrysopoulo de PRMA en San Antonio. Ambos son cirujanos plásticos que rutinariamente realizan una variedad de cirugías reconstructivas de mama con tejidos de la propia paciente con gran éxito. ¿Qué es la reconstrucción mamaria autóloga? La reconstrucción mamaria autóloga consiste en utilizar el tejido y los vasos sanguíneos subyacentes de otra área del cuerpo de la propia paciente para crear un seno nuevo y suave después de una mastectomía. ¿Por qué a veces las mujeres son rechazadas por los cirujanos plásticos o se les dicen que no son buenas candidatas para la reconstrucción mamaria Continue Reading →

Post Breast Reconstruction Nips that Stick

Wouldn’t it be nice if prosthetic nipples would stick just like window cling? You simply slap them on and they stay on until you peeled them off.  Newsflash: skin isn’t like glass! Our marvelous, living, breathing skin with natural oils and sweat glands just isn’t like the surface of glass – thank goodness! “Nips that don’t stick” is a common and frustrating problem for many types of prosthetic nipples. Falling off at embarrassing moments or potentially getting lost can understandably be deal breakers for women considering nipple prosthetics after breast cancer surgery. Finding a way to provide secure adhesion for Naturally Impressive nipples sticking securely on the breast was one of our first big challenges. We had developed a nipple that looked fantastically real, but when using Pros-Aide water based adhesive, they only stayed on a few days, at best. Often I’d find them in the bed sheets in the morning Continue Reading →

Honoring My Sweet Friend Valerie Hewson Wright

Today I honor the passing of a life well-lived. Valerie Hewson Wright lived a life a love and vibrancy through a breast cancer diagnosis and most recently, metastatic breast cancer. I am angry, pissed to be quite honest, and deeply saddened at losing a friend to this insidious disease we have yet to find a cure for.  Val and I never met in person, but I feel so very close to her and why I weep today at her passing. Our Nonprofit Connection When I began thinking about opening my own nonprofit Foundation in 2017, I would call Valerie and ask her questions about the logistics of running an organization to help others. She successfully opened VforVictory Foundation to mail drain holders out to breast cancer and breast reconstruction patients after their surgery. She worked tirelessly for these women and why I leaned on her for her advice. Her famous Continue Reading →

The Elusive Nipple Solution After Breast Cancer Surgery

For many of us going through breast cancer, by the time we get through diagnosis, surgery, treatment and breast reconstruction, we have an eager anticipation of the final step of getting nipples to help us feel whole and complete. It seems like it should be simple, but often it drags on and on without a satisfactory solution.  Surgical nipples flatten, tattoos fade, prosthetics fall off. I was really fortunate. After my unilateral mastectomy in 2007, while I was still in the breast reconstruction process, my innovative husband was inspired by my plastic surgeon to develop a silicone nipple-areola for me. What a gift! It makes me feel so joyful to look in the mirror after showering or while dressing and see the symmetry of two nipples. It eases some of the sting of what breast cancer has taken from me as a woman.    My Husband & I had no Continue Reading →

Breast Reconstruction Recovery and ERAS Protocol

Breast Reconstruction Recovery and ERAS Protocol When I attend medical conferences, I take the opportunity to interview plastic surgeons about topics related to breast reconstruction. Breast reconstruction recovery and ERAS protocol is a topic I want readers to know about. Why? I feel it is an important part of a shared decision-making conversation with your plastic surgeon at the time of your consult. You simply ask, “Do you use the Enhanced Recovery after Surgery (ERAS) protocol in breast reconstruction?” Dr. Minas Chrysopoulo from PRMA in San Antonio was the plastic reconstructive microsurgeon who performed my DIEP flap surgery. Although ERAS was not in place at the time of my breast reconstruction, I am excited to let others know PRMA and others are using this protocol now. The interview unfolds as we make comparisons between my recovery without ERAS and what Dr. C and his practicing partners now use to improve Continue Reading →

Five of My Favorite Gift Ideas from a Patient Advocate

There are a variety of celebrations across the globe as the year ends. Holidays, giving, tangible gifts! We love to wrap packages in pretty bows and paper to give to family and friends. I want to talk about the intangible gifts of the holidays. The gifts that are in our hearts. Gifts not always easy to find or give. Perhaps this is my reflection on the gifts I have received from so many this past year. What are my five favorite gift ideas from a patient advocate? The Gift of Compassion Whether you have been newly diagnosed with breast cancer or are considering breast reconstruction after mastectomy, the gift of compassion is priceless. The most well-meaning friends and family can say comments we don’t always appreciate. The truth is, friends and family do not always know what to say. What can you do? Hold a hand if you are with Continue Reading →

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

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

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 →

Sharing the Emotional Night I Was Awarded Patient of Courage

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 →