Three Important Words in Your Breast Reconstruction Decision
I am going to start right out of the blocks and tell you what those three important words are. No guessing, no three tries until you are correct, and no predicting what you think those three words are. The three important words in your breast reconstruction decision are, shared decision making.
Shared decision making may seem a bit altruistic if you are a plastic surgeon. The concept may seem like it is unattainable if you are a patient. I personally feel it is not only a realistic goal to practice shared decision making if you are a plastic surgeon but one that will yield the best outcomes for patients and progressively improve practice for plastic surgeons. How can patients learn more about shared decision making? They can access resources and online communities to assist and empower them to have a shared decision-making conversation when deciding if breast reconstruction is right for them.
My Story Leading up to Breast Reconstruction
I had breast cancer in 2002 that included 2 lumpectomies, eighteen weeks of grueling chemotherapy, and six weeks of daily radiation. I experienced weight loss, was hospitalized, lost my hair, my dignity, and a lot of physical strength. I thought my challenging days were over until I had a recurrence in 2014 involving both breasts this time. My breast surgeon determined I should have a double mastectomy.
While I was recovering, I researched for weeks to find a plastic surgeon to perform my breast reconstruction surgery. I decided I wanted to use my own tummy tissue to reconstruct my breasts and have DIEP flap. Having a double mastectomy in May of 2014 and waiting to find a plastic surgeon I felt could handle my case resulted in a delayed Diep flap and challenge #1. Challenge #2 was the radiated tissue on my left breast from my first diagnosis. The radiation had adversely affected the tissue creating a tight “rubber band-like” feeling under my arm. Five months later, after hours and weeks of my own research about Diep flap surgery, I sat in front of my plastic surgeon and experienced shared decision making in my own breast reconstruction journey.
What is Shared Decision Making in Breast Reconstruction?
Shared decision making is a mutual and respectful exchange of information between the patient and physician. This involves responsibility for both the patient and physician. In order for the patient to be actively engaged in the surgical decision for breast reconstruction it is important to realize it will involve an investment of time to research the topic. Finding a well-qualified plastic surgeon, reviewing their credentials and success rate, and asking the question, “Do you practice shared decision making?” are all part of the responsibility of the patient.
The responsibility of the physician is to listen carefully to patient preferences. The task is treating each patient as a unique individual. The skill level the plastic surgeon brings to the consult should be a foregone conclusion to the patient since they spent hours finding this “just right surgeon” to perform their breast reconstruction. But, for the physician their challenges come in the form of patients’ personalities, cultural differences, patients’ expectations and perception of expected surgical outcomes of surgery, and possible medical comorbidities (conditions) unique to some patients seeking breast reconstruction.
How Does Shared Decision Making Occur?
A well-developed shared decision-making experience is comprised of the physician understanding what patient expectations are and combining them with the expertise of the surgeon. They are both equal team players bringing knowledge to the consult they are experts in. The patient may not be aware of the risks, complications, and healing process of the surgery. The physician takes on the role of sharing this pertinent technical and medical information with the patient in order to make the patient leave the consult feeling they are an integral part of decision. The patient feels like a team player.
The role of the patient is to discuss all medical aspects of their health with the physician. An honest discussion of what the patient desires for their expected aesthetic outcomes should be part of the conversation. Keeping your expectations in check is important for the patient after listening to what the plastic surgeon explains she or he can provide for you based on your body habitus. This is when you begin to build a trusted relationship with your plastic reconstructive surgeon.
There is a great deal of listening from each team member. With so much information to synthesize time is a valuable resource in a shared decision-making consult for breast reconstruction. An important question to ask before scheduling your first appointment is, “How much time is allowed for my initial consult for breast reconstruction?”
I will continue to be a strong patient advocate for practicing shared decision making in breast reconstruction. They can ultimately be the three most important words in your decision to have breast reconstruction.
Two-time breast cancer survivor Terri Coutee is the Founder and Director of DiepCFoundation.org, a U.S. based non-profit 501(c)3 organization providing education and resources to empower women and men with information to make an informed decision about options for breast reconstruction after a mastectomy. Terri started the nonprofit organization in 2016 two years after her own successful breast reconstruction, realizing how many women and men needed support through their own Journey to explore breast reconstruction options after mastectomy. Resources provided by the Foundation include educating patients about the process of breast reconstruction from planning, surgery, and throughout the healing process. We connect patients to highly skilled, board certified plastic surgeons. Resources include a YouTube channel with a variety of educational topics and interviews with plastic surgeons, patients, physical therapist, and financial assistance for breast reconstruction. She shared her personal story in her blog at DiepCJourney.com. Terri believes education is the key component for patients being able to have a shared decision-making conversation with their health care team. She has spoken on panels at medical conferences about the topic of shared decision making and it is the focus of her Foundation’s message to empower patients to have a stake in their own personal Journey after a breast cancer diagnosis.
YouTube: DiepC Foundation
She has a YouTube channel dedicated to breast reconstruction educational videos at: DiepC Foundation